Becky's Hydrocephalus Spring 2006

This calendar shows when Becky was in hospital, the red days are when she had an operation, the purple days are when an operation was cancelled.
Clicking on the days will take you to more information for that day.
April 2006
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2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 17 18 19 20 21 22
23 24 25 26 27 28 29
30            
May 2006
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7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30 31      
June 2006
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4 5 6 7 8 9 10
11 12 13 14 15 16 17
18 19 20 21 22 23 24
25 26 27 28 29 30  
July 2006
SunMonTueWedThuFriSat
            1
2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 17 18 19 20 21 22
23 24 25 26 27 28 29
30 31          
August 2006
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    1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29 30 31    

Links:


The American Hydrocephalus Association 870 Market Street, Suite 705, San Francisco, CA 94102
IF global network on Spina Bifida and Hydrocephalus
Medtronic, makers of the external drain
Hydrocephalus Therapy: Living with Hydrocephalus (PDF)
ICP Monitoring: A Guide for Family & Friends (PDF)
ASBAH
Cerebrospinal Fluid Research Hyman-Newman Institute for Neurology and Neurosurgery

Description of Hydrocephalus at Adelaide
Various notes
Third Ventriculostomy various local notes
Blood Brain Barrier
Brain Atlas
ETV redo
Our Hospital in North Staffs
Interesting article from Parliment

TODAY

27 April
Becks on 27 April
This page will hopefully be updated every day until Becks comes out of hospital, so please check back to see how she is doing.
Click refresh on your browser to ensure you have the latest info.
The photographs were taken using a Nokia N70 Smartphone with the offline option activated so there would be no interference with hospital equipment.

Becky was in hospital from Monday 10 April 2006 to Monday 24 July 2006, then again from Wednesday 2 August 2006

Monday 10 April 2006

Becks was too ill to be taken to the doctors so the doctor came out to her. It was 6 ish when the doctor came and decided to send her to hospital by ambulance. We sat in A&E until Becks was taken for operation at about 3am Tuesday morning. They external drained her shunt. It was infected and blocked. They also took off 350ml of fluid from her tummy.

Tuesday 11 April 2006

I went home for a bit then back to pick Clare up. Becky seemed ok.

Wednesday 12 April 2006

Got Becks a DVD/TV tele from Asda. Took Metro to the garage then to hospital, I went to work. Becky was ok.

Thursday 13 April 2006

Took Clare hospital then to work. Back to hospital about 5 ish, some question from a couple of nurses as to whether we could go in to Becks, soon sorted, they canít stop us. Becks not too bad but her shunt had come out. Doctors said she would need operation to put it back probably about 9.00pm, then maybe midnight. There was an emergency so Becks didnít go down until 7am.

Friday 14 April 2006

We went to Samís house for a cup of tea then back to hospital for 8.30 They called Clare in half hour later then it was ages before they came back, Becks not to bad. John came in the afternoon.

Saturday 15 April 2006

Becks not too bright this morning, she had been sick, they thought her valve had blocked in the night but began working again. But I went back for Clare about 1pm (I went to K&S but they were shut, revamp my PC). Becky complaining about her neck hurting. John and Merrilyn went in the afternoon. Merrilyn upset as Becky was confused and been sick and sleepy. We went back about 5. Beckyís eye not responding to light. Her temperature had been high and she had the fan on. Doctor came about 7ish and said he would talk to the other docs. We left at 8-30pm. Father Eric came in Jill had rung him and gave her the sacrament of the sick, but she didnít wake up.

Sunday 16th Easter Sunday

Becky was sitting up and had eaten some breakfast. She was quiet chirpy but had been very sick twice in the night. She watched Harry Potter and ate a bit of dinner. Blood pressure a bit low but temp ok. We left her about 12-30 and john borrowed the car and went about 1-30pm. Becky has had a temperature all week sometimes up to 39.4 and has and to have the fan on. Her antibiotics have been changed 3 times. The electricity went off about 8:10 pm tonight. Men came to fix it took until 6am to put temp feed in will come back Tuesday.

Monday 17 April 2006

Clare had a lift off Ben to the hospital, I stayed in bed. Went to Focus for bits for sink and taps, on the way back Clare phoned to say valve not working and Becks would have to have another op. Becks had op about 3 after a scan showed enlarged ventricles. We went home then back to hospital, Becks was fine after op we left about 7:30.

Tuesday 18 April 2006

Took Clare hospital, Becky laughing and joking with nurses. I left and the electric men were waiting at home to fix the temp cable. Took them till 1:30, Meyr picked Clare from hospital and brought AJ as well. They stayed a couple of hours. John cam for the Metro about 12 40 to go hospital. Clare and I went back to hospital for 6pm. Becks not too bad, she was fairly lively and got out onto commode to do poo. She was watching Harry Potter so we left about 7:30 to go Matalan for another nightie for her.

Wednesday 19 April 2006

To hospital for 9:30, Becks quite bright I left to go Tonyís and Asda. Back at 12:30 Becks up in a chair waiting for lunch. John went up in afternoon we went home. Jill and Meyr going this evening. Went doctors with Clare for sick note.Sam came up later.

Thursday 20 April 2006

Dropped Clareís stuff off at school then to hospital. Becks sitting up in chair having breakfast, seems a lot better. I left and returned about 1 ish. Becks quite bright, docs and nurses came to get fluid samples and blood. Becks went into her bed about 3ish, they forgot to turn antibiotics back on?? Mr Price came about 4.15 after we had asked nurses repeatedly when he was coming, it was Sue?? Who rang him, when he came he said no-one told him we were waiting else he would have come sooner. He said Becky's white cell count was a bit high and they would have to wait for it to get down to 10 before they could operate and put the shunt in permanently.
We left then to get the car back for John to go up this evening.

Friday 5 May 2006

Took Clare to the hospital, got there about 8:40am. She was sitting up in a chair having had a bath and waiting for breakfast. Quite bright and chirpy, I left and went to work. Clare phoned just as I arrived at the Uni, the doctors had been round and Mr Diaz asked how long the draining shunt had been in, Clare told him 2 and a half weeks, so they (Mr Diaz, Mr Brydon and Mr Singh) decided that this was too long so they would try to fit Becks in for an op to replace it sometime today.

The white cell count was down from 400+ to about 48, so the infection seems to be coming under control, at last.
Just befor lunchtime they blocked the shunt off to let the ventricles expand a bit before the op, within half an hour Becks was dropping off to sleep.
The nurses brought a gown for her about 2:30 and she went to the operating theatre about 3:15pm We went out to get a cup of tea and returned about 4:15pm but it wasn't until 5 ish that Becky came back. The surgeon, Demetrius came to tell us the operation had gone alright before Becks came back 10 minutes later. She was being sick quite a bit but this soon stopped and she went to sleep again.

We left about 6 pm when she was sleeping quite peacefully.
They didn't call Clare to the recovery room like they have in the past and a nurse commented about the theatre staff wanting to close up and go home, but one of them then came back to the ward with Becks to help with her vomiting.

Saturday 6 May 2006

When I phoned the hospital about 7am they said Becks had had a restful night.
We arrived at the ward about 9am, Becks was sitting up in bed having a wash from one of the nurses. She seemed fine so I left and let them get on with it.
I took Ben to have a new tyre fitted from Kwik-Fit.
Myself and Sam picked Clare up about 12:15, Becks had been fine, playing 'Guess Who' and sitting up in bed. She didn't fancy her dinner but had a bag of crisps. Sam was giving AJ a lift up to the hospital this afternoon
Becks had been ok this afternoon, we went back for 6pm, she was eating her tea of sandwiches.
Her eyes are much better now than before the op, not wandering like they were.


We played some 'Guess Who' then the doc came to give Becks some anti-biotics into the CSF. He had to block the drain off and come back half an hour later. No problem and we left about 8pm.

Sunday 7 May 2006

Becks fine sitting up and eating breakfast when we got there about 9am. She had a peaceful night although sick this morning before breakfast. I went home and put the fan on the Landy. Picked Clare up about 12:15 Becks had been fine, they had watched 'Calendar girls' DVD. Sam was going up this afternoon.

Becks was drowsy within half an hour and we had to ask what was happening at 7ish her head was hurting in between sleeping. The fluid showed some discolouration, looked like blood in the bottom of the drain bag. We had a rest in the afternoon and went back for 6pm, Sam had phoned to say she was ok and that the wig had been ordered. We chatted to Becks but she stayed in bed and went the loo in a chair. The very young doctor supposed to have been giving Becks the anti-biotic into the fluid, her drain was blocked off when we got there. The doctor came just after 7 apologising for the delay. After he had taken the fluid Becks perked up a bit but Clare had noticed that after drawing some fluid off the doc had put the anti-biotic in but not flushed it through like Demetrius had the day before when the young doc had been shown what to do, this may have left the drug in the tube and not in Becks' head. The system was blocked off for a further hour to let the drug disperse, hopefully out of the tube to??.The nurses walked Becks to the loo soon after, she was a bit unsteady but well able to manage it with their support. We left about 7:50 with Becks not too bad watching TV.

Monday 8 May 2006

Becks had passed a peaceful night when I rang about 6:30am. We arrived at the hospital about 8:30am Becks was sitting in a chair having breakfast. I left and went to work. Picked Clare up about 11:45, Becks back in bed but not too bad, Clare had asked why the fluid was discoloured and they said that there was probably some blood in the ventricles after the op which comes out in the fluid with her moving about.

John is going up this afternoon so I went back to work in the Landy. I went after work for 6pm. Becks was in bed watching TV. She ate her tea and we played cards. I asked a nurse about the anti-biotics and he said they were waiting for the doctor. Becks walked to the loo a couple of times, she was quite steady on her feet now. I left just after 8pm and the doctor still hadn't come to do the anti-biotics.

Tuesday 9 May 2006

Took Clare to Dr Leese for 8am, he signed her off for another 4 weeks. Then to hospital. Becks was sitting in a chair she had already had her breakfast, seemed fine but her eyes were begining to wander a bit again. The doctor came late last night to give her the anti-biotics, she said she was scared of it. At lunchtime she was sitting in the chair waiting for her lunch. Nobody had been this morning, we left about 12:15pm, John is going up this afternoon. Becks not to bad, we went back about 5:45pm after Ben dropped Clare at the Uni. Becks had the anti-biotics into her head this afternoon and the ventflom was changed to just behind the thumb on her right hand but she managed to play cards. Sam came this evening too. We left about 7:30pm to go Tesco for Sam, Becks was watching Eastenders.

Wednesday 10 May 2006

Took Clare hospital for 8:45am, the doctors were just doing their rounds. Clare asked when Mr Price was coming in and Demetrius said he should be in this afternoon. They have a clinic this morning so he would probably come in after that in the late afternoon. Clare and Jill will be in then so should see him. Becks was sitting up in bed having her breakfast, she said she was fine during the night and hadn't been sick. After the doctors had gone I noticed the fluid tube was now empty, and the clips weren't closing the tube off to the bag, Clare said she would ask about it.
Mr Price did come in the afternoon. The white cell count is coming down and he hopes to operate on Monday.
The cheque came today from the holiday insurance company.

Thursday 11 May 2006

Arrived at hospital about 9ish. Becks was sitting in her chair waiting for breakfast. I went to get things sorted for the trip to the airport. Clare phone during the morning from Becks phone and I could hear her in the background. They had gone outside so Becks could use her mobile. Ben and I arrived at the hospital about 12:10 to pick Clare up, Becks was pleased to see him before his holiday. Then round to Sam's house to pick the others up. Got to the airport 2:15pm then back to Trentham to get a tent then home. I went the hospital and got there about 6:15pm Becky asking why I was late. We played cards and she walked to the loo a couple of times, then had to go outside again to txt her friend. It's really good to see her so well now, almost like her normal self. I left at 8pm taking her mobile phone to charge up for her.

Friday 12 May 2006

Called into Asda to get some stuff for Becks, arrived at the hospital by 8:40am. She was sitting in her chair having breakast her bed was in the process of being made. The doctors had already been round. I went to work. Picked Clare up about 12:15 to go home for lunch Becks had been fine but one of the nurses was unsure about Becks having a bath and moving around so much with the external drain and the risk of possible infection. This nurse had a different view from other nurses during the past week. We picked Jill up and arrived at the hospital about 2-ish, I went to work again. Picked them up about 4pm. John was going up this evening.

Saturday 13 May 2006

We got to the hospital about 9am Becks was in her chair having breakfast, seems fine, the fluid a bit discoloured otherwise ok. I went to work to do a bit with Acad then home. Picked Clare up about 12:15 Becks was in bed having her dressing changed. We left her to have her lunch, Meyr was going up this afternoon then John this evening.

Sunday 14 May 2006

We arrived at hospital for 9am, Becks was up having her breakfast, she'd had a bath and didn't seem too bad. Her tummy was hurting and her head so she got back into bed. I went home and started clearing computers from the study ready for painting. Clare phoned to tell me about the scan. They said they would send Becky for a ultra-sound scan later today. So Clare was staying this afternoon and John would go this evening. I went back about 1:30pm, Becks didn't have a scan so we left about 4pm.

Monday 15 May 2006

We arrived at hospital about 8:30 Becks was up having her breakfast. I went to work for an important meeting. Clare and Becks watched a DVD, they went for a walk but afterwards Becks was sick (the drain may not have been clamped off properly and over-drained). The nurse later clamped it off so the doc could take a fluid sample. The doctor was busy so they un-clamped it, but it wasn't draining so they clamped it off again. A lady doctor came but she couldn't get any fluid either so she un-clamped it but it didn't drain, she said she would come back later. Clare told staff-nurse that it wasn't draining and she tried putting the drain container to the floor, it still didn't drain, the nurse said she would tell a doctor, that was about 1:20pm. I got there about 1:30 and took Clare home. John was going this afternoon.
We went back about 5pm and it still wasn't draining. Becks was very sick just as we arrived, the nurse came and looked at the drain again, tried to get it to drain by putting it on the floor, but it didn't. A doctor came just before 6pm to try to put the anti-biotics into the fluid. He went away to prepare and when he came back he said the 10 doses had been used and they would have to get more from the pharmacy. He tried flushing the drain then tried to get a fluid sample, but couldn't. It appeared that the drain was blocked. He noticed some debris in the tube near to Beckys head so he disconnected it and flushed that out but still no fluid came from Becks head. The doctor decided to send Becky for a CT scan to check the size of the ventricles which he thought may have collapsed and blocked the drain or to see if the ventricles were larger in which case they would operate to replace the blocked drain. Becks went for the scan about 7pm.
The result was that Becks ventricles were a bit larger so the drain was definitely blocked and would need replacing. The doctor arranged to operate this evening about 8pm as soon as the anesthetist arrived. He came back about 9pm to say that there was a queue, a 9 year old boy was in theatre after an accident and Becky would go after that, but probably not before midnight. Becky was sleeping most of the time by now. At 11:00 pm a nurse came to give Becks the other normal anti-biotics. During this time they put a theatre gown on Becks and made the bed, shortly after they had to re-make it after Becks was sick.

Tuesday 16 May 2006

Becky went to theatre about 1:30am, we went home and returned about 3am. Becky was still in theatre and at 20 past 3 they came to fetch Clare to go to the recovery room. The doctor told us that the op was a success, there had been a lot of pressure from the fluid, he had put the new drain in the same place and it was working well. We checked that Becky was comfortable back on the ward and left about 4am.
We had some sleep and returned to the hospital before 10am. Becky was quite drowsy but things were working fine. I went to work and returned to the hospital about 1pm. No one had been to see Becks during the morning but she had been fine. John and his mum went in the afternoon, gave her another really soft toy.
I went back about 6pm, she was asleep so I woke her and she ate some tea. She soon brightened up although her eyes were wandering a bit. Meyr came about 7pm and brought her a red England hat. I left soon after. Later on Meyr rang, Becks had been fine but slept most of the time.

Wednesday 17 May 2006

Becks is steadily recovering from the operation, and her eyes seem a bit better. Jill went back this afternoon with Clare and John was going this evening. I was working late tonight.

Thursday 18 May 2006

We got to the hospital early this morning to see when the MRI scan was going to happen. It looked like this afternoon. I picked Clare up about 12:00 to go home for some lunch. Becky and Clare met me in the corridor, Becky was walking very well, hanging on to the drip stand. There was a problem with the MRI people not wanting to do the scan because of the metal clips in Beckys head, which have been there since she was a 5 months old, so she may or may not have the scan. We went back to the hospital for 2pm and I went to work.
Mr Price has been this afternoon, to explain where we are at. There are a number of options, what he intends to do first is a third ventriculostomy together with an external shunt/drain and keep the drain blocked off to see if the fluid builds up. If it does they can just open the drain and they will know then that Becks needs a shunt. The shunt could be a new procedure where a tube goes from the ventricle to the blood vein at the top of the skull. This is a new method used by a Dutch surgeon which they are going to read up on, they have done similar things here before but not for hydrocephalus. Alternatively they could put the shunt into the chest like he first thought. He said the clips in her head wouldn't make any difference to the MRI scan, so I just hope he tells the MRI team that and they get on with it.
Picked Clare up about 4pm, the MRI scan was cancelled this afternoon and Meyr went up this evening. We went home and I sorted out the flat tyre on the Metro and battery on Sam's MG.

Friday 19 May 2006

First thing this morning we took Sam's MG to the garage to have the alternator fixed, they will ring me later.
We arrived at the hospital about 8:30am just as the doctors were on their rounds and had got to Becky. Mr Price explained to the others what he proposed to do and expressed anoyance at the delay in the MRI scan, the clips in Becky's head had been there since she was 5 months old and weren't a problem. Hopefully she may have the MRI today. I went to work.
Picked Clare up about just after 12:00 lunchtime, Becks was on her bed with a headache. The MRI scan won't be today, they are now waiting for a reply from Queens Med at Nottingham to see if they have any record of Becky having a MRI scan there, which may have been as long ago as 1993.
Took Clare home , John is going to the hospital this afternoon.
Clare spent the afternoon with Jill and I picked her up from there at 4:50, went home had some tea then to the hospital. Becks looked quite well, sitting in her chair having her tea. Earlier we had been a bit concerned because there was not much fluid coming out but it seemed ok now. She walked up and down the ward corridor and went outside with her mobile/cell phone to send text messages to her friends. Back by her bed she sat on the chair and we played cards. She was fine when we left about 8:00pm.

Saturday 20 May 2006

We went to Parcel depot first thing to get a parcel for Becky then to Asda, then to fetch Sam's MG back from the garage, didn't have time last night, anyway it's ok now.
Got to the hospital about 10ish. I had to go back to the car for Becks parcel so when I got to the ward Becky and Clare were walking to meet me, really good to see her up and about again, even with the drip stand in tow. I left then to get the Metro tyre fixed and home to clean up a bit.
Picked Clare up about 1ish, Becks was still quite well and complained because I forgot her phone. John is going up this afternoon and Meyr this evening till 7, I will go then. I got to the hospital about 7 and Becks said I was three minutes late, she had been laughing and joking with John all afternoon and Meyr said she was fine even though they had put the anti-biotic into the drain, it was still blocked off. Meyr went shortly after and Becks wanted to go to the loo so we went for a walk up the ward, a nurse said don't be too long because the drain had been blocked off to let the anti-biotic disperse. A nurse came and opened it up again after Becks was sitting down again. We had a good chat about what Mr Price was thinking of doing and she seemed happy about it, just wanted them to hurry up so she could go home. I left about 8pm while she was watching a Morse DVD.

Sunday 21 May 2006

We arrived at the hospital about 9am, Becky was just finishing her breakfast and a nurse was taking her to the loo, she was walking fine and seemed really well. We waited for her to come back but noticed a splash of blood on the floor by her bed. When she came back there was some spots on her nightie, she said not to worry it was when they disconnected the IV after the other anti-biotic had finished, there was blood on the end of the tube which was still on the drip-stand. I went home to tried to do a bit more painting in the study.
I picked Clare up about 12:30 and went home for lunch. I returned to the hospital for 2pm, Becks was fine, we played cards and walked to the loo. Steven Cooke cam and was talking to Becks so she said go home to me!! She was chatting with Steven so I went home just after 3pm. John went this evening.

Monday 22 May 2006

We went to the hospital early this morning, arriving about 8:15, Becky was in bed and didn't seem too well, she had been sick last night. I went to work.
Went to pick Clare up about 12ish, Becky had gone to the loo, helped by Clare and then came back to her bed, Becks looked a bit better than this morning, she had to have another blood test because a nurse had scratched herself. We left to go home for lunch. John was going this afternoon.
We went this evening and Becks was a lot better. The doctor came to tell us that they had recieved a fax from Queens Med confirming that Becky had previously had a MRI scan. She came back later to give Becks the anti-biotics into her fluid. We left about 8pm.

Tuesday 23 May 2006

Took Clare to the hospital for 8am, Becks looked a bit tired and had to go the loo as soon as we walked in so Clare took her. When she got back she looked a lot better, the little walk must have done her good. I left to go to work. Clare helped to bath Becky it it was not until 11am, they were very busy on the ward. The doctors had not said anything but Mr Price was not there and supposed to be coming round later, he hadn't appeared before I arrived about 12 to take Clare home. We left Becky with the note-pad of questions to ask him if he showed up while we weren't there. Becks is getting a bit grumpy now so she must be feeling a lot better, she's ok though. John is going up this afternoon.
I went up from work this evening. Becks was fine, we played cards and watched the TV, went for a walk outside so that she could txt her friends, she sent a txt to Sam who's still on holiday until Friday. Mr Price had left a note saying the MRI scan would be Wednesday, but the nurses were not sure what time yet.
I left her watching Eastenders about 5 to 8.

Wednesday 24 May

Took Clare hospital for 8:45 Becky was just coming back from the loo, walking very well on her own, she sat down and ate her breakfast. I asked a nurse what time the MRI scan was, she didn't know and said she would go and ask. When she came back she said something about waiting for the info from Nottingham, we told her that the fax had come on Monday and Ramani the lady doctor has said she would get me a copy of it too. She would try to find out more. I left then to go to work.
Clare rang me about 9:40 the doctors had been round but they didn't know about the MRI scan, Mr Price and Demetrius weren't there, they had a clinic, but Ramani was there and apparently she was more concerned about the fluid test results. Clare was going to try to find out more.
After asking three times of different nurses Clare still couldn't find out what was happening. I went from work and got to the hospital before 12 noon. Clare was walking with Becks who seems a bit off today, she had been sleeping most of the morning. Back at her bed we asked a nurse to adjust the drain and unblock it, but the nurse said Rapinda was going to take a fluid sample so she left it blocked off. We went then to give Clare a break and time for some lunch. We returned about 12:45 and Becky's drain was still blocked off and she was complaining of a headache. As I went back to work I mentioned it to one of the male nurses who said he would look into it.
I picked Clare up about 4pm, Becks not too bad

Thursday 25 May 2006

Becks had been sick this morning but had been in the bath which may have caused that, her drain was working ok. I had a meeting to go to at Stafford so I left then. I returned about 1:15pm Becky and Clare were in the corridor going for a walk, we took her back too her bed and asked a nurse to unblock her drain then we left. John is coming up this afternoon.
Clare was quite angry but contained it well. Becky is fine, we still have not been given a date for MRI, Mick picked me up at 12ish and I came home for the afternoon. We both went back in the evening and they had a time of 2-15 Fri for the MRI scan. Played cards with Becky she is ok but fed up of being in hospital.

Friday 26 May 2006

Doctors came round and asked if she has had her scan, no I said, its this afternoon.
Mick had fetched the boys in the early morning from the airport and he came back about 12-30. We waited and waited. The ambulance came at 2-30 for Becky but only one place had been booked for the escort. So Becky went by ambulance and with a nurse and Mick ran me down to the City General. We got there about 2-50pm. They asked a lot of questions about her health and then we waited.
Another lady then came through to ask some more questions, I interpreted and then she asked if I wanted to go in with Becky, I said yes, so had to answer lots of questions and take metal things off.
Becky was ok, the scan wasnít too bad, but it was noisy and I had to wear head phones. Becky had ear plugs, but we both forgot about the vibration. She had one scan for about 40 mins and then they injected contrast into her and scanned again for about 10mins. We came out about 4-40pm, Becky had to go the toilet half way through. The ambulance came about 5pm and Mick gave me a lift to the ward. We were back on the ward by 5-10pm. We left Becky and Sam visited that night.

Saturday 27 May 2006

Becky is ok we got there about 9-10am and she was still asleep. She had her breakfast and then she had a bath in the little bath. The water was very hot and we couldnít get the cold to work so a nurse gave us a jug to get cold water from the sink. Becky just sat in about 3 inches of water and had a quick bath. She went back to bed and slept for about 1 and Ĺ hours. Mick picked me up about 12-30 and I came home for dinner and then went back with AJ. We sat and ate strawberries and marshmallows. Sam picked us up from the hospital and Mick went back at 6pm Becky has been fine all day.

Sunday 28 May 20006

Mick took me to the hospital. Becky is fine she didnít want a bath so had a stand up wash in the sink. She is complaining of her right side of her head hurting were an old valve used to be . It is red but ok. We will keep an eye on it. Mick picked me up at 12 and he went back for 2pm.
Becky was fine this afternoon. Played cards and she went outside to use her mobile, she could check her emails using her phone and had received some from Steph.. I (Mick) left about 4pm, John is going up tonight..

Time 15:31

Monday 29 May 2006

Ben took Clare up to the hospital about 8:30am. Becks is fine this morning. Sam came with me or took me to get parts for my computer then to the hospital to pick Clare up. After lunch John had over-slept, Clare and the boys went to AJ's so I went up the hospital in the afternoon. Becks was fine, her dressing was coming off so a nurse came and put a bandage round her head for the time being.
We walked about and she sent John a txt from my phone asking where he was, he replied before we went back inside saying he was coming up tonight. Just before I left at 4:00pm a small doctor came to take a CSF sample. He managed to get 10mls but his second attempt failed, nothing would come out. This despite the fact that Becks had been walking about for a while with the drain blocked off, almost as if the ventricles were not producing any fluid for that time, although the daily measurement is about average.

Tuesday 30 May 2006

We went to the hospital early for 8:00am to make sure we saw the doctors. Becks was fine but had accidently ordered the wrong breakfast so Clare had to get it changed. The doctors came, including Demetrius and Mr Singh as well as the small doctor who had taken the sample last afternoon. Mr Singh was questioning Demetrius quite closely about sugar levels as well being important, anyway they would discuss things with Mr Price this afternoon. Although Mr Price was on holiday he was coming in ths afternoon to see a couple of patients. It seemed most unlikely that anything would happen today.
I went home and then back for 12 to pick Clare up. John was coming this afternoon so we said we would see her this evening.
Clare and I went for the evening session getting there about 6pm, we played a new card game which kept Becks and me quite happy for ages.

Wednesday 31 May 2006

We got to the hospital about 8ish, Becks was asleep, I left to go to work.
Clare rang about 10:15, Becks was fine but her left eye was a bit iffy, she has had her hair washed by a care assistant and Clare and had a bath.
The doctors had been round, the small doctor had said they had looked at the MRI scan, the ventricles are small and they are going back to the radiologist, for some reason. Mr Price was on holiday this week so probably no operation until next week although it can't be ruled out. Clare pointed out that it was 15 days since her last op and then Mr Diaz had said that the 17 since the one before that was too long. Not many surgeons can do this op, presumbably the Third Ventriculostomy, so they have to wait.
Clare phoned again to say hello, they were outside having some fresh air, Becks said hello!
I went to pick Clare up for 12ish. Becks was asleep on her bed, but she awoke quickly and wanted to go to the loo. She said her eyes were not right. When she came back from the loo a nurse checked her eyes and said he would keep a check on her. We left then, Clare is coming back this afternoon with AJ.
Clare rang about 3:30, a doctor had been to see Becks who said she was having an op tomorrow. Clare checked with a nurse who said a doctor had explained to Becky what was happening!! Beck when asked what was hapening said she was having an operation tomorrow, what for? I don't know.........
Apparently Mr Brydon is on tomorrow and the operation maybe to renew this external drain or maybe not, they may get Mr Price to come in, or they may not.......
I suppose we may know more tomorrow, or we may not.....

Thursday 1 June 2006

Went to the hospital this morning for 8am. Becks was awake and in an operating gown, her bed had been made up for an operation too. She said she was panicking because she was having an operation at 9:00am. Clare took her the loo and checked with a nurse who said the doctors were in a meeting till 9:00am then they would say what was happening.
The doctors came in to us at 10 to 9, the small doctor telling us that Demetrius was on the phone to Mr Diaz to finalize what they were doing and would come and see us in a minute, he went on to say that they were thinking of doing a Third Ventriculostomy but the ventricles were small and it would be best to wait for Mr Price to come back on Monday.
Demetrius came in, he asked if we had seen the MRI scan, we said no, so he went to get them. He pointed out on one of the images where the drain went into the ventricle and a white area which is inflamation which may be a sign of infection but not necessarily so. They would prefer to wait for Mr Price to do the operation so they are not doing anything today, it would also be good if the fluid was a bit clearer so waiting another few days is a good idea from that point of view. Although this drain has been in a while now, they are hoping it will last out so they can do the main operation next week. Mr Diaz came to see Becks too during the morning and enquired about how long the drain had been in, and frowned when told 2 and half weeks.
I picked Clare up just after 12 and took her home for lunch. John is going this afternoon, we will probably both go tonight.
I picked Clare up from home after work, we went to MacDonalds to get a burger for Becks, when we got to the hospital Becky had just finished her sandwiches then devoured the burger and chips as well. We played cards, she went for a walk to use her phone outside, she was really well. We left Becky watching TV about 7:40.

Clare & Becks

Friday 2 June 2006

We arrived at the hospital just after 8am, Becks was standing by her bed while the nurses were 'making' it. She looked fine, the nurses were quite busy so I quickly left.
During the morning Becks went the loo quite often and her head was hurting on the right side where an old valve was. She had a number of pain killers for this and a nurse asked the doctors to have a look because it was worse than before. Demetrius came to have a look and thought it may be an abcess, he was reluctant to do anything with it in case infection was introduced into the CSF.
Mr Diaz was thinking of doing the operation on Monday, Mr Price should be in sometime tomorrow to see other patients and will see about Becky too. They may take out the drain on Sunday night and operate after that. Becks was not very bright at lunchtime when I picked Clare up, Becks eyes were wandering a bit too. John is going up this afternoon.
We ent back this evening for 6pm. Becks was a lot brighter, although her head was still hurting and her eyes were wandering. We played cards and she went outside to use her phone. We left about 7:45, both of us very tired.

Saturday 3 June 2006

We got to the hospital about 9ish, Becky was up and just about to have her breakfast, she seemed much the same as last night, certainly no worse. We need some questions answered about what they intend to do tomorrow. The doctors including Mr Price are supposed to be about today so hopefully we may learn something. I left and called at Boots for some of Clare's hay-fever tablets and a new battery for Sam's Landy.
Picked Clare up from hospital about 12ish and went home for some lunch. John is going up this afternoon.
We had a phone call from one of the other patients in Becks room, who said that two doctors had been to look at Beckys infection on the right side of her head and she had been crying, she said Becks was ok now but she thought we ought to know. About 2:30 I had a txt message from John saying Becky was crying because they had put a new IV needle into her hand and this had upset her, so we went back.
When we got there Becky was not too bad, she had recovered from the ordeal of having the IV re-done. The doctors were on the ward so we decided to stay and wait for one of them to come and explain everything to us. I went home about 4:15 to feed the dogs and have something to eat, Sam might pick Clare up about 7ish and I would stay till 8. I went back about 6ish, Sam was on call so couldn't pick Clare up, so we both stayed. About 7:40 Demetrius came to us and explained, he was going on holiday from today but the other registrar and the consultants knew about Beckys case. What they planned was to take out the drain about midnight on Sunday so the inflamed area we saw on the MRI scan, around the drain in the ventricle could have some time to recover. Then take her in for the operation at 9am on Monday. He said that there were a three options which Mr Price would decide upon at that time, namely a Third Ventriculostomy, a shunt into the chest or a shunt into a blood vessel in the brain. Demetrius assured us that nothing else would happen tonight, a dermatologist would not be coming before Monday by which time it wouldn't matter because they would probably sort it out in theatre, but if it was infectious they may not put the shunt in. He said we will know more by asking the doctors in the morning. Beckys head was hurting a lot all this time, like from 4pm, but I think a lot of it may have been due to anxiety over the uncertainty about what was happening. She had some more pain killers and became more settled so we left about 8ish.

Sunday 4 June 2006

Clare phoned about 6:30am to see how Becks had been during the night, they said she had spent a 'lovely' night. We arrived about 8:40 just before the doctors rounds. Becky seemed a lot better than she had been last night. It was the young lad and the small registrar who were on duty this morning and one of the nurses we knew quite well too.

The registrar said that plan A was to block off Becky's drain about 9pm and see what reaction there was, like how long Becky would take to be affected by the build up of pressure in the fluid. If it was quite quick then they could unblock it and have a better idea of how long they could leave it out later. They wanted to take it out by about midnight so the ventrilcles would be ready for the operation at 9am. The plan was to put a shunt into her chest at this time.
The Third Ventriculostomy was probably not an option because the MRI scan showed that Becky's third and fourth ventricles were too small for this to be possible, which is similar to what the doctors had said 13 years ago, maybe in the future the endoscope technology will improve enough for that to be possible, but that's just my opinion.
The shunt into a blood vessel at the top of the brain would need more time to set up because they didn't have the equipment to do it at the moment and Becks needs something more permanent than an external drain doing now. He may have a look at the swelling on the side of Becky's head today but that's not certain.
So that's where we are at at the moment, at least they have a plan to do something fairly soon. Clare asked what would happen if an emergency came in during the night, would Becky's operation be delayed? He said not since this would be classed as an emergency for Becky and not elective surgery.
Becky seemed quite happy with all that although she will be anxious about the impending operation. Beckys was not too bad but had a cry about wanting her phone when I went to pick Clare up about 12ish. She appears to be quite scared and apprehensive about what may may happen when they take out the drain tonight as well as the operation. One of the senior nurses helped to reassure Becky. I went up in the afternoon and Sam came for an hour or so too.
We went back for about 7pm John and Becky were playing draughts, she seemed quite well but her head was still hurting and she needed pain killers

Monday 5 June 2006

I rang the hospital to see how Becky had faired last night, and was told she was fine and had coped very well. We arrived at the hospital about 7:30am Becky had been prepared for theatre and was lying in bed, she was amazingly bright and alert considering the drain had been removed at midnight, normally she would have been sick and asleep within an hour if the drain had blocked, but now it had been removed altogether and she seemed fine. So much so that when the registrar came and saw her he ordered an immediate CT scan. We went down for the scan about 8:30 taking Becky in a chair as opposed to the bed because there was no porters available before 9am. Becky was able to walk to the loo with support and when we got back to her bed the anaesthetist was waiting to speak to her. After that the registrar came back and said the CT scan showed the ventricles enlarged so they would go ahead with the operation. Becky went to theatre at 9:30 Clare went in with her while I waited by the stairs. When Clare came back after about 10 minutes we went home for a drink, returning about 11:15, it was not until 11:25 that they called Clare into the recovery room and then a further 10 minutes or so before they came back to the ward.
Mr Price had spoken to Clare and explained what had happened. After Becky was asleep under the anaesthetic he had pressed on the right side of Beckys head where the painful lump was and a lot of yellow pus had come out which meant that they couldn't put a permanent shunt in at this time because of possible infection so they had replaced the external drain and hope to do another operation on Thursday since there should be free theatre slots. He had looked at the ventricles and because the size of them was larger he thought he might be able to do a Third Ventriculostomy on Thursday.
Becky was sleeping fairly peacfully, the nurses have to take obs every half hour and it took a while to get Becky to respond and then she was sick. The bed had to be re-made but after that Becky was sleeping again.
I left to have a few hours at work this afternoon.
Back to the hospital late afternoon, Becks was still sleeping. She had woken up a couple of times but was still very drowsy. She was responding to the obs alright now and the drain was working ok. She was still sleeping peacefully so we left about 6pm.

Tuesday 6 June 2006

We were at the hospital before 8am, Becks was still asleep and had spent a peacful night. The nurses were busy making beds and sorting the wards out so I left Clare and went to work. I picked Clare up just after 12 to take her home, Becks had been sleeping most of the time but she is ok. John is going this afternoon.
I went to the hospital from work about 5:30pm. Becks was asleep and her tea had just arrived, so I woke her up and helped her to have her sandwiches. She walked to the loo with help but she became quite upset, I first thought she was desperate to go the loo but she said she was scared of all the people. There have been two new patients admitted today in Becky's room and both had visitors so there was a number of new faces about, this is part of her anxiety problems. She soon recovered with a lot of help from the nurse who Becks knows and likes. She had another little weep a bit later but soon came out of that too. Then we chatted and played cards and by 8pm when I left she was quite bright and reasonably happy watching TV.

Wednesday 7 June 2006

We were at the hospital fairly early to make sure we saw the doctors on their rounds. Becks was asleep but we woke her when her breakfast came and she ate it all. They came about 9am and Clare asked what was happening; the registrar, Ahmed explained that they needed results from the samples of the pus and CSF, we wanted to know about the anti-biotics and if they were operating on Thursday. Ahmed said he would come back to us after the ward rounds and talk to us then.
It was after 10am before he did come back. Becks was not too bad and went the loo just before he came.
Ahmed explained why it was taking 8 weeks and more to sort Becks out. The main problem had been the infection in the CSF and getting that down before they could do something permanent. Clare told him what Mr Price had said on Monday and that was the first Ahmed had heard about it. He seemed genuinely concerned and was trying to reassure us that they were doing what they could when they could. He said they were very aware of our concerns about taking the drain out on Sunday night, but this had worked quite well and everyone was suprised a how awake Becky was on Monday morning which was why he had asked for the CT scan which did show that the ventricles were enlarged so Becky by rights should have been asleep at that time. He said he would see Mr Price and get him to explain his plans to us today after his clinic after 12:00.
I went home to get some lunch for Clare and have something myself. I returned by 1:00pm and Mr Price had not been then. Clare went to have her lunch and met Ahmed in the corridor on the way back. He didn't think anything would happen tomorrow because the anaesthetist was on half day holiday. Becky was sleeping off and on but quite with it when awake. I think she was feeling as totally fed up as we were, and her right leg seemed a bit wonky when she walked, but she wasn't too bad. So I thought Mr Price wouldn't come now so I went to work.

Clare rang me at work about 2:50pm, Mr Price and the tall registrar had been to see her and said he would operate at 11:00am in the morning. They would block the drain off tonight at midnight so that the ventricles would enlarge and he would do the 3rd Ventriculostomy with a different reservoir type valve in the top of her head so that if it didn't work they could draw off fluid from there instead of having an external drain. They still had to find out about the infection from the pus and give Becks anti-biotics for that but the 3rd Ventriculostomy would not be affected by this since it was just a hole in the bottom of the brain. So at least we now have some clear plan of what is happening.
Ben picked Clare and AJ up from hospital about 10 past 4. Becky's right side still seemed not quite right and this showed in her mouth and eye as well as when she walked, the nurse was going to keep an eye on it. John went up this evening, when he brought the car back about 9:30pm he said it was overheating, I will have to look at that tomorrow.

Thursday 8 June 2006

I phoned the hospital about 6:15am they said Becks had spent a good night and still managed to walk to the loo even though her drain had been clamped off at midnight. We arrived about 7:30, Becks was sleeping peacfully and the nurses were busily helping patients to wake etc, so I went to work and will be back about 10:30am.
When I returned the anaesthetist had been and Ahmed who said the operation would be in the early afternoon because they had a back case in. He explained that the ETV could block if the CSF pressure dropped to low to keep it open. Becky's drain was still clamped off and he said if she complained of severe headache it could be opened. She was sleeping but aware of who was holding her hand, she wanted her mum. The anaesthetist came about 11:30 and said they would try to fit Becks in today, we asked him when we would know what time he said within half an hour. I went to the loo and saw Mr Price going up the corridor. When I got back there was a theatre nurse there waiting to take Becky for the operation while a ward nurse was putting the white stockings on Becky's legs and then filling in the forms. Becky went through to theatre at 11:40. We went home for some lunch.
When we got back we saw Ahmed who told us that it had not been possible to do the ETV and Mr Price would see us shortly. He soon came and took us into a room where we sat down and he explained, the membrane at the base of Becky's brain was too thick to see through well enough to make a hole in it, and the CSF soon became too obscured to see through. Normally the membrane is stretched by the expanded ventricles and is transparent enough to see where to make the hole but in Beckys case with the ventricles being small the membrane is thick and more translucent making the procedure too risky to attempt. An external drain was put in instead since the abcess was still on the right side of her head making a permanent shunt not advisable at this time. Mr Price said he would put a shunt into the chest on Monday. The anti-biotics had been sorted out to cope with the scalp infection where the abcess had been.
Clare went into the recovery room but it was another half hour before they came out and Becky was taken into the high dependentcy room where there was at least one nurse on duty all the time. Becky was sleeping peacefully and responding to the obs requirements when the nurse took them. We left her sleeping and in safe hands.

Friday 9 June 2006

I spoke to the ward on the telephone about 6:30 am, Becky had spent a comfortable night and was sleeping now. We arrived about 9:00am after visiting the doctors for Clare's note. Becky was sitting up eating her breakfast and seemed quite bright. I left to try and fix Clare's car which had overheated again.
I got a new thermostat from Halfords and stripped the housing out of the car.
Ben went to pick up AJ and then Clare from the hospital, Becks had managed to walk to the loo with the help of a nurse and Clare. John was going up this afternoon.
As for the car an O-ring on the thermostat housing has gone so I need to get one of them.
I went to the hospital for 6pm. Becks was asleep but soon woke up, she had been moved off the high dependency unit and into a normal room on the ward. A nurse helped her go to the loo the first time but we managed a couple of times after that. I enquired and found her TV in the nurses room so took that back to Becky's bed, she was very pleased to see that. She apologised because she didn't think she could play cards so we watched tele instead. There seemed to be a lot of blood in the CSF tube, but the nurses didn't seemed too concerned about it. I left about 8pm.

Becks

Saturday 10 June 2006

We arrived at the hospital just after 8am, Becks was fine so I left to get the O-ring for the car.
Bramhall's parts dept was closed now on Saturdays so I tried one or two other places but couldn't get one, will try Monday.
Picked Clare up about 12ish and we went home for some lunch. Mr Price had been round and said again that they would operate on Monday, he was not concerned about the blood in the tube either, and it was a lot less than last night. I went back for 2pm. Becks was not too bad and we managed to watch the football, but she did go the loo a lot, but I don't think we missed much. Her dressing was coming off and eventually it came off in her hand. I kept telling nurses but they were rather busy and said they would do it later. I left about 4pm. We both went back for 6pm. They had done Becky's dressing and she was quite bright having her tea. We watched some TV and left about 8pm.

Clare & Becks

Sunday 11 June 2006

We were at the hospital just before 8am, Becky was still asleep and it looked as though there was some leakage of CSF from her head onto the dressing. I went home and then picked Clare up about 12ish. Becks had been fine, still a bit groggy but able to walk to the loo. The doctors this morning had said her operation would be early afternoon so they would clamp the drain at 6am in the morning. The nurse and a doctor came to look at her head and change the dressing. The doctor was quite pleased with the wound and the nurse made a really good job of cleaning it up putting on a new dressing both on the top of Becky's head and the right side where the abcess had been. We left about 1:15, John was coming this afternoon.
We went back for 6pm. Becks was a lot brighter and went for one or two walks up and down the ward with our help. We checked to see if Becks would be having any thing to eat in the morning, and yes she would have an early breakfast about 5:30am. Joyce came to visit too, Becks was quite pleased to her. We all left about 7:45 to let Becks rest and watch TV.

Monday 12 June 2006

Arrived at the hospital just after 8am, Becks was awake and looked fine. She had eaten her breakfast and already had a shower. Her operation is still this afternoon, the drain was clamped off at 6am, she's down as the third operation of the day so I went to work.
Email from Steph about Tony being in hospital in Taunton.
Back for 12 noon, Becky's operation still planned for this afternoon, so we wait. Becky is sleeping now, most of the time. The nurse came to put anti-biotic drip in for Becks, not sure what she did but a bit later Becks complained of her arm hurting where the IV went in. Another nurse came to look and because there was air in the line she removed it and got the air out, after that Becks wasn't too bad. She had some pain killers about 3pm for her headache then went to sleep again.
We waited and waited and even the nurses couldn't find out what was happening. They still had to put a theatre gown on Becks and the white stockings.
About 3pm the nurse said it looked like it was still happening so she put the stockings on and Clare helped Becky to put the theatre gown on. Becks seemed happy that things were happening now. Becks was asleep again after half an hours wait. At one point Becks asked Clare when grandad was coming, and when Clare told her that grandad wasn't coming, he died 5 years ago, Becks cried.
At 10 to 5 Demetrius came to say the operation would not be happening tonight because of no available anaesthetists and Mr Price would be coming to tell us why soon.
Mr Price came about 20 past 5. He explained that the second operation had developed complications which took an extra hour and half which meant that because the anaesthetist had to go and the other hospital anaesthetists were coping with "dramas all over the hospital" Becky's operation could not go ahead. He wasn't prepared to use junior or trainee staff for this operation so it was better to leave it for a daytime slot. Maybe tomorrow but definitely Friday if not before. So Becky would fast tomorrow until 10am when they would know if they could fit her in then or not. We asked him about the leakage of the fluid from the dressing and he assured us that this was ok and because the drain had been blocked of all day. The drain had been unblocked when Demetrius had come so now it was draining freely, allthough with some debris and trace of blood.
Becky was now able to have her tea which she relished. Her headache soon subsided and apart from the disappointment about the operation that wasn't she seemed ok.
She was getting tired and watching a DVD so we left about 7pm to try and recover from an anxious day ourselves.

Tuesday 13 June 2006

Got to the hospital about 8.15am Becky was asleep. A nurse said Becky had been quite sick earlier this morning. There was a fasting sign over her bed, hopefully they were saving her breakfast in case she could have it later. There didn't seem much CSF in the drain at this time, if it is blocked they will have to operate so I suppose we just have to wait and see. I went to work.
Clare rang about 10:30 but I missed the call, she sent a txt message; Becky was not having operation until Friday, but the drain was blocked and a doctor was coming to look at it and try to flush it.
I got to the hospital just after 12, Becks was dozing but not sleeping heavily. The young doctor was trying to flush the drain but there was still no CSF coming from Becky's head. He went away to see a more senior doctor. Demetrius and Mr Price came just after and discussed what to do. They tried lowering the bag to the floor but there was no sign of fluid, it was blocked. Mr Price told Demetrius to flush it to the head to try to remove any debris that was in that part of the drain, he apologised because he wasn't available this afternoon so if it became necessary the other doctors would have to operate and put the shunt into Becky's chest. If it became urgent they would have to redo the external drain.
Demetrius and the young doctor came back and tried flushing into Becky's head, it seemed to work at one point so they left it to see what happend. After half an hour the nurse came to check and since there was no change, ie no fluid has come she reported back to the doctor. He came and said they would send Becky for a CT scan to see where the catheta was in the brain.
At this point we assume she will be having an operation sometime this afternoon.
They didn't come to take Becks for the CT scan until nearly 4pm, Becks was back on the ward by 4:40pm the nurse said that the catheta was not in the optimum position so they would probably have to operate anyway. Becky was not too bad still able to walk to the loo and watching TV with occasional periods of sleeping and sometimes asking for pain killers for her headache. They hope she may be able to hold out till morning but if her condition gets worse they will have to operate during the night. We went home just after 7pm after telling the nurses to ring us if anything happens, they assured us that if Becks needed to go to theatre they would ring.

Wednesday 14 June 2006

I phoned about 6:15am Becky was ok and had just been helped to walk to the toilet, so any pressure in the ventricles is not enough to knock her unconcious.
We arrived at the hospital before 8am. A nurse was getting Becky ready for the operation which we expected to happen at 9am. Becks was very bright and cheery and the CSF had drained almost 30mls overnight so it wasn't blocked now. While we waited for the doctors to come round we watched the debris flowing along the tube. Over the period of about an hour the flow gradually increased as the particles dropped into the reservoir. When the doctors came round they, Demetrius was pleased to see the drain now working and said they would operate on Friday when the whole team was available. Another doctor said that theatre was fully booked today and it was better to wait for a scheduled slot to do Becky's operation which was not straight forward.
Becks was a bit annoyed about another cancelled operation but we explained the situation to her and she soon calmed down. She seemed better when they brought her breakfast which she could now have, so I went to work.
Picked Clare about 12ish, the young doctor was there trying to get a sample of CSF but none could be obtained. The flow had practically stopped again although Becks was quite bright. Earlier she had been sick after her breakfast but had later eaten some toast and kept that down. The young doctor then tried to find a vein for the IV, although he wasn't sure if Becks needed it since the anti-biotic had finished last night. He couldn't find a suitable vein either so decided to come back later.
We picked AJ up about 1:30 and I dropped them off by A&E and went to work.
Ben was picking them up from hospital about 4ish, but about 4:40 he rang to say Clare had stayed because there was some problem so I went up. Both Clare and Becky were alright when I got there and Clare explained that there had been some staining of the dressing covering the abcess on the right side of Beckys head. The nurse came to change both dressing and the doctors were called to have a look at the abcess because it looked worse. They said it was only on the skin and any pus would go down as opposed to over to the other side and it wasn't too bad so it shouldn't affect the operation. Mr Price had also called in and said that the operation would be on Friday if Becky can hold out till then. The drain still looked blocked but Demetrius had said that maybe the CSF had found an alternative route to drain. John was coming at 6pm so we left Becky watching TV, waiting for her tea.
Meyr went to see Becks and she got there just after we left and stayed until John arrived at 6:15, she said Becks wasn't too bad but a bit confused and couldn't remember some things.

Thursday 15 June 2006

I phoned just after 6am they said Becks had spent a peaceful night and was sleeping now. We got to the hospital just before 8am and Becky was asleep. There was only 2mls of fluid in the reservoir but the bag had about 720mls in it so not sure how much had drained overnight but I don't think it was much. The nurses came in to start waking the other patients and Becky woke up. There was a noticeable swelling on her forehead above her nose, is this where the CSF is going? The nurse went to tell a doctor. Becks seemed quite bright and laughing with the nurses who were making odd signs which Becky and Clare knew were rude, so they taught the nurses some more rude sign language signs. I left and went to work.
Picked Clare up about 12:10 Becky was asleep but the swelling on her forehead had gone. Clare said a dermatologist had been to see Becks and thought the rash on her head, like forehead and cheeks could be acne so she left some soap and cream. The abcess on the right side of Beckys head didn't look too good so they are waiting for the resuts of the swab now, this may delay the operation tomorrow or may mean that they will operate sooner and just put another external drain in, so its a matter of just wait and see. Clare woke Becky up to tell her she was going and that John was coming this afternoon and we would be back tonight.
We went back for 6pm. There was now 12 mls of fluid in the reservoir and the same 720mls in the bag. Becks seemed fairly bright but her dressing had come off, the nurses said they would do it when they could.
We watched the football on the TV and Becks went the loo a couple of times but we did see the goals scored by England.
Becks is on the theatre list for 9am tomorrow so hopefully the drain will last out. We went a walk up the ward and back by which time Becks was quite tired so she got into bed and soon fell asleep.
There was 15mls in the reservoir at this time so she had drained 3mls in just over 1.5 hours.
We left about 7:50 and called on Tony to see how he was, Just was there and they were fine.

Friday 16 June 2006

I phoned the hospital about 6am, Becky was fine and sleeping.
We arrived about 7:30am, Becky was sitting in a chair watching TV. She had a theatre gown on and her bed was all ready to go for the operation at 9am. I checked the reservoir which now had 28 mls in it and still 720mls in the bag, but there was no sign of the debris which had collected in the bottom of the reservoir last night. I cheked the notes and 25 mls had been taken at 11pm last night, so she had drained 53mls since we left last night. I presume the 25mls was taken as a sample.
The doctors came round just before 9 and Mr Price described the situation. There was the infection on the right of her head which still seemed nasty, although he didn't look at it, although one of the other doctors did, and thought it wasn't too bad.. There was mention of an old catheter which could not be removed at the place of the abcess and some discussion about whether this could be the cause but Clare told them that this had been left in years ago because of the damage it might cause in removing it. The skin on the other side was clear though and this is where Mr Price wanted to but the new shunt. They couldn't decide what to do then and all the doctors left to continue their rounds. A few minutes later Mr Price came back and said they had decided, he was going to leave it today and do it on Monday if the drain lasted that long. He wasn't sure about putting in the new shunt at this stage because of the possibility of it getting infected or blocked straight away.
Clare and I and Becky were very disapointed that it couldn't be done today but we do appreciate the need for caution. There is no dressing on the abcess side of Beckys head although there was a new dressing over the area where the drain comes out of her head, we think there should be a dressing over the right side too. Some days ago one of the nurses had replaced both dressings taking particular care to clean the areas really well, so this should happen again. The nurses came with Becky's breakfast so I went to work.
Picked Clare up about 12:15, Becks was lying on her bed but quite bright. Clare had seen the nurse about Beckys dressing over the abcess and was told that it was a bacteris infection so best left open else it might get damp and that would breed more bacteria. The drain contained 720mls and the reservoir 37mls.John was coming this afternoon so I took Clare home.
Took Clare the doctors for some tablets at 5pm.
I went back to the hospital about 6pm. The drain bag had been changed and now contained 50mls and the reservoir 13mls. Becks seemed better then at lunchtime, we went for a walk up the ward and she went the loo a couple of times. She is walking straighter now instead of leaning back. I left her watching TV about 8ish, at this time the reservoir had 17mls in it.

Saturday 17 June 2006

We arrived at the hospital about 8:30, the drain bag had 125mls in it and the reservoir 11mls, according to the records 26mls had been taken at 9pm and 40mls at 6am. Becks was sitting up in a chair having her breakfast, seemed fine so I left.
I went back for 12 and the doctor Ramani was cleaning out the abcess, very thoroughly. The wound was weeping a bit but not as much as they thought and it wasn't as big as they thought. at 12:25 there was 125 mls in the bag and 28mls in the reservoir. Took Clare home for lunch, John was going up this afternoon.
We both went back for 6pm, then the bag contained 150mls and the reservoir 0 so the reservoir had been emptied for some reason.
Becky said that John hadn't been this afternoon, a nurse had come to tell her he wasn't coming because his dad was ill. I went and phoned them and it was John who had been ill with a dizzy spell, they had lost our phone number so phoned the hospital instead.
We took her outside for some fresh air and so she could use her phone too. She was walking very well and when we got back to her bed we played cards a bit which she became confused over sometimes but not too bad. We left her watching TV about 8ish, the reservoir had 4mls in it at this point.

Clare & Becks

Sunday 18 June 2006

We arrived at the hospital about 8:45 today, the doctors came round, just Demetrius and Ramani, they talked about the abcess and Clare said does that mean you won't operate tomorrow? Demetrius replied probably not, I think we will just wait and see. The drain bag had 150 and the reservoir 34 mls. I went home then.
Sam called and took me to the hospital to pick Clare up. There was 38 mls in the reservoir at this time. Becks not too bad so we went home for lunch.
Sam and I went back for 2pm. Now the bag had 200mls and the reservoir about 2mls. Becks was fine, going the loo on her own and a walk up the ward. We watched TV and left about 4pm, John was going tonight.

Monday 19 June 2006

I phoned the hospital about 6:15am, Becks was fine after a peaceful night. She is on the theatre list for today.
We arrived about 8am, the bag still had 200 mls and the reservoir still 2mls. Becks was nil-by-mouth so hadn't had her breakfast, but didn't have a theatre gown on. The doctors came round about 9am Mr Price wasn't with them and they thought Becky may not have the operation today, someone said that the drain was working and there was concern about the infection where the abcess was. I told tham that the drain hadn't worked since yesterday at 2pm. Vish asked a nurse for the records to check this. They went, then a bit later a registrar came out of theatre to tell us that Mr Price wanted to leave the operation until Friday if the drain keeps working otherwise it may be before then, so I went to work.
I picked Clare up for lunch, she had noticed a swelling where the drain was on the top of Becky's head, she told a nurse and the nurse was phoning the registrar as she left. We picked AJ up and took them back to the hospital for 2pm.
Picked them up again about 4pm. A doctor had been and tried flushing the drain but it still wasn't working afterwards. When Becky went the loo just before Clare left she came back shivering, very pale and said she was cold, she seemed alright though. John was going up tonight.
About 6:30pm I had a txt message from John saying Becky was ill and needed her mum, so we went back. When we got there Becky was sleeping, a nurse said that Vish had been and moved the drain around and this had unblocked it and released 50mls of fluid,(there was now 300mls in the bag and 8mls in the reservoir), Becky had been promptly sick and complained of a headache, John had just walked in on this but he was ok. She woke up a few minutes after we arrived and the nurses came to change the bed, now she was awake. She looked very pale but was able to stand and went the loo with Clare's help. She got into bed then and we chatted, she had been very scared by this experience but Clare was able to reassure her that now it was unblocked she would probably feel better. By the time we left at 7:45 she had some colour back in her cheeks and was a lot happier, the drain had only an extra 1ml in it when we left.

Tuesday 20 June 2006

I phoned the hospital about 7am and they said Becky was fine. We arrived about 8:15 and there was no Becky by her bed, we assumed she was on the loo or having a bath.
A few minutes later, there was a noise of people rushing in the corridor and then they all came into the room, about 6 nurses and others with Becks prone on a bath chair in the midst of them. They moved things out of the way to get Becky onto the bed as fast as they could and pulled the curtains round, I tried to melt into the wall as Clare was praying inaudibly by my side. Some of them rushed out again and came back with what looked like a crash trolley, but they didn't need it. Someone was asking Becky something and someone else said she's deaf so can't hear you, gradually things calmed down a bit and some of the people left saying there was enough people there to deal with it. No one seemed sure about what had happened, but as the crises subsided and we were able to see Becky and most of them had gone, Sarah the nurse who had been giving Becky a bath said that Becks had sort of collapsed but not like a feint so they had to deal with it fast.
Becky was pale and shivery but with the help of oxygen was looking somewhat better now. She gradually regained her composure and Sarah explained that Becks had probably become too hot in the bath and then getting out and drying had suffered the attack. Becks was very scared by all this and kept a firm grip of Clare's hand. The drain was working and there was 400mls in the bag.
Panic over, so I went to work.
Clare rang me about 10:15, aparently Vish had only looked at the drain yesterday and it started working. Now the drain had come out so Becky would be going for an operation this afternoon. An IV had been in her arm but had probably come out when she was rushed back to her bed this morning, she should be on IV anti-biotics because there was sign of infection in the CSF again.
I went back about 12 noon, Becks was sleeping but had been awake most of the morning. They had put an IV into her foot, her arms are difficult to use now although they did get some blood samples from her arms. The drain had come out altogether when the doctors tried to get a sample of CSF, they say she will go for the operation to put it back this evening. There is also some question about the tube left in years ago, it may be where the infection is, so they may try to get it out. Took Clare for some lunch and she phoned AJ who may come this afternoon. Back at the ward Becks was awake and hungry but can't have anything, but she still managed a laugh. To go the loo she had to have a commode because the IV in her foot made it very akward to walk, Clare thought the urine was rather reddish so the nurse was going to test that too and check for pregnancy although Becks had that test when she first went in and it was negative the nurse thought it wise to check again.
They came to put a theatre gown on Becks so since the operation is not until this evening I went back to work.
Clare rang me about 3pm to say Becks was going for the operation this afternoon because she had a seizure. She was being sick and Clare was holding the bowl when Becky's eyes rolled up and her back arched, the nurses were there immediatley. I left work and got there 20 minutes later.
The tall doctor had said it was an emergency operation and she would have a scan first. The nurses came and changed the bed sheets where Becks had been sick and her gown. The anaesthetist came and as well as asking the usual questions he did some obs on Becks, like getting her to squeeze his hand. Her right hand was going a bluish colour and Becky couldn't squeeze that one, her other hand was ok. As she rolled over onto her back the colour in her right hand gradually became normal. The porters came and she was taken down for a CT scan then onto the main operating theatre, Ahmed was going to operate and put another drain into the left side of her head, he had been talking to Mr Price so he knew what was happening.
While Becky was in theatre we took AJ home and went to sort out the washing and to have something to eat at home. We were back at the hospital for 5:30 and waited in the visitors room. Ahmed came just after and said everything had gone well and Clare could go down to the recovery room. Becks was wheeled out about 15 minutes later and back to the high dependency unit on the ward. She was half sleeping and half awake but very groggy. She responded okay to the nurses requests and seemed fine. There was about 2mls of CSF in the reservoir and none in the bag when we left just before 8pm.

Wednesday 21 June 2006

I phoned the hospital about 7am and they gave me the number in the high dependency unit so I rang them, Becks had spent a peaceful night she was awake now so the nurse called across to her and Becks said hello, she seemed fine.
We arrived about 8:15, Becky was awake and quite bright, she said she was okay now. The CSF drain was working and there was 100mls in the bag and 21 mls in the reservoir. I went to work.
I went back for 12 to take Clare for lunch. Becks was sleeping but she had been sitting up for most of the morning. They had used a urine catheter for a while because she was having difficulty going the loo. Mr Price had wanted to clamp the drain off to see how shunt independent Becky was now but one of the nurses had suggested just lifting the drain so that the pressure would effectively increase to see what would happen. Apparently they tried this for a while then put it back down. It's now set at 20mls above the level of the drain in her head, there was 150mls in the bag and 28mls in the reservoir at 12:45pm. When we got back from lunch Becky was sitting up eating her lunch and seemed quite bright, so I went back to work. Becks was fine during the afternoon, sleeping a lot and a bit groggy but not too bad. I picked Clare up about 4:30 John was going up tonight.

Thursday 22 June 2006

Phoned the hospital about 6:30am Becky had spent a good night and was just being washed. We arrived at about 8:15 Becks was asleep in bed but soon woke up. There was a urine catheter bag at the side of the bed so Clare asked why, the nurse said although Becks wanted to go the loo quite often she was not managing to do much so they had but the catheter in. Clare was going to ask the doctors about the idea of clamping the drain off and why. The drain was quite low and had 350mls in the bag and 12mls in the reservoir. I left and went to work.
Picked Clare up for lunch at 12ish, she said the doctors were not going to clamp the drain until the infection was cleared which will take up to another 10 days for the course of anti-biotics to be given. The reservoir had 34mls in it at this time. Becks was a bit brighter and eating her lunch after we got back from ours. AJ was coming to the hospital this afternoon too.
I went to pick Clare anf AJ up from the hospital about 4pm, only AJ was there. She said Clare was staying and she would go home on the bus. I parked on the main carpark and went to the ward. Becky was dozing and Clare was very tired. There was 400 mls in the bag and 2mls in the reservoir of CSF from the drain.
Mr Price came and said Becks was not as bright as she was. The infection in the CSF was the same as last time plus another different one. The blood tests were clear. Because of the recurring infection they have to look at the pieace of tube which was left in 23 years ago. He would like to discuss it with Mr Diaz next week since to remove it would not be straight forward.
Becky's right leg has been shaking on and off today as well as yesterday, then her legs went stiff for about 10 minutes, the doctor asked for blood tests related to that. Becky is having IV anti-biotics for the infection. We left about 4:30. John is going this evening.
John called after he had been to the hospital, Becks had been chatting quite brightly during his visit even though they had taken some blood samples.

Friday 23 June 2006

I phoned the hospital about 6:20am, Becky had spent a good night and was still sleeping peacefully.
We arrived about 8:00am, Becky was still asleep, there was 500mls of CSF in the bag and 15mls in the reservoir. Everything seemed okay so I went to work.
Picked Clare up about 1pm Becky wasn't too bad, sleeping a lot with the occasional shake in her legs. The CSF reservoir had 42 mls when we left at 12:50. John was coming up this afternoon.
I went back at 6pm, Becks was sitting up having her tea and watching TV, she seemed quite bright. There was 550 mls of CSF in the bag and 43 in the reservoir at 6:10pm. We chatted and she dozed a bit, she thought she was going to be sick after eating her yogurt but I helped to lean forward and rubbed her back which released a noisy lot of wind, but she felt better after that and wasn't sick. Her legs didn't shake while I was there. I left about 8pm when there was 600mls in the bag and 2mls in the reservoir, one of the neurses had drained it as a matter of course, they keep a close check on the four patients in this high dependency unit.

Saturday 24 June 2006

Phoned about 7am, the telephone in the high dependency unit didn't work so I had to ring the ward. Becks had spent a good night and was fine. We arrived about 8am, Becky was just waking up. She was a bit brighter than yesterday and we helped her to sit up. There was 675mls in the bag and 20mls in the reservoir. I went home to try and fix the Metro.
Went back for 12:45 Becks was better, she had been sitting in a chair and had just got back in her bed to have her lunch. There was about 720mls of CSF in the bag and 3mls in the reservoir. AJ was going this afternoon and John this evening.

New room

Sunday 25 June 2006

We arrived at the hospital just after 8am, the nurse said Becks had been moved from the high dependency unit to a side ward. She was in a room on her own and really pleased about it. She looked a lot better. The CSF bag had been changed and now had 150mls in it with 15mls in the reservoir.
I picked Clare up about 12ish, Becks was quite bright and going the loo on a commode by the bed. At this time there was 150mls in the bag and 40mls in the reservoir. We went home and I came back about 2pm.

(200-15)Becks was very bright and we chatted and watched TV. I left about 4pm. (200-30)
We both went back for 6pm. Becky was having her tea and watching the football on TV (250-0). She went the loo quite often but was fine otherwise.

Becks

Monday 26 June 2006

I phone about 7am, Becky has had a peacful night. We arrived about 8am, Becky wasn't there, she was having a shower. A few minutes later the nurse brought her into the room in a bath chair. She was happy and laughing, and clean. There was 250mls CSF in the bag and 15mls in the reservoir.
Picked Clare up about 12 noon (250-40) Becky was quite bright and not slept much. Ben took Clare and AJ back to the hospital this afternoon and picked them up at 4pm. Becks had been fine and tried walking to the loo.
John was going this evening.

Tuesday 27 June 2006

Phoned the hospital about 7am, Becky was fine after agood night. We got there about 8am (400-16) Becks was still asleep.
I went back about 12:30 (400-46) Becks was fine John is going this afternoon.
I went back this evening and Sam came too (500-15). A nurse came to setup the IV anti-biotics but there was no needle in Becky's arm so she went to find a doctor to put one in. He tried three or four times but couldn't find a vein so said he would get someone else to try later. Becks was very bright and chatted and laughed a lot but she was not very keen on having the needle in. We left her watching TV about 8ish.

Wednesday 28 June 2006

Phoned the hospital about 7am, Becky had spent a restful night. We arrived at the hospital just after 8am (550-25), Becky was sleeping. There was an IV setup for her anti-biotics so they must have managed to find a vein after I left last night at 8pm. Clare said the ventflon that was last in came out yesterday morning. Clare woke Becky when her breakfast came, she was fine and quite bright. The dressing where the abcess had been had not been changed although the one on the top of her head where the drain was had been done. I left to get Ben's car to the garage for its MOT.
Picked Clare up about 12 noon. Becks was in bed but quite bright, a nurse was doing the obs and Becks was laughing and joking with her. The dressing over the abcess had not been changed but Clare said the doctors wanted to look at it and would change it then. Took Clare home for lunch then back with AJ for 2pm.
Clare rang about 3:30pm, Mr Price had been in to say that there was good news, the infection in the CSF was right down so they could operater tomorrow to put the shunt in, but they needed to look at the abcess first. Demetrius came in with gloves and apron on to look at the abcess on Becky's head. When he touched it a lot of pus came out so Mr Price said that this changed things a bit, they would now have to operate to remove the old tube which was the seat of this infection. Paul was there as Mr Price explained the possible problems that removing this bit of tube may have. The end where there was holes for the fluid to pass through may have become overgrown and be difficult to pull out making it possible that there could be some bleeding. They would leave the external drain in to monitor for any excess blood. Becky went for a CT scan within half an hour. AJ would catch a bus home and I would go up later.
Ben's car failed its MOT so we had to book it in for further repairs tomorrow.
I went to the hospital about 5:30pm. A nurse was doing the dressing on Beckys head and Clare had been asked to leave while she did, I met Clare in the corridor and we both went back together. They were just finishing the obs, Becky was quite cheerful and seemed to be looking forward to the operation tomorrow, glad that something was happening at last.
I noticed that the EDM drain was now set at 10cm whereas before it at been 20cm. I asked a nurse and she thought it should be 20cm which they had been told at the shift changeover so she went to find out. She came back within a few minutes to say that the registrar had changed the level and forgot to tell the nurses. He had done this in preperation for the operation tomorrow. For the other operations they had clamped off the drain to increase the pressure of the CSF so that the ventricles would be larger, so this lowering of the drain reservoir would have the effect of decreasing the pressure, this needs a little more explanation.
I was looking at the CSF in the tube and the level was more than 5cm below the 0cm mark on the EDM, it was moving up and down and the nurse said that this meant the drain was working, I'm not convinced, it hasn't been that low whenever I've looked at it over the last week, it's been dripping into the reservoir.
Becks was quite bright, we waited until John came then left.

Thursday 29 June 2006

Phoned the hospital about 7am, Becks was fine and had passed a peacful night. Arrived there about 8am, a nurse was just helping Becky off the commode. She had a theatre gown on and a sign 'nil by mouth' above her bed so she was ready for the operation. She was quite bright and cheerful when I left about 8:30.
Picked Ben up from Kwik-Fit where his car is having the back brakes done. Then took Sam's Landy for MOT, it passed thank goodness.
Clare rang me as I was on the way back to the hospital about 12noon Becky was going for operation in about one hour. The anaesthetist was there when I walked in, he thought the operation would be another two or three hours. They came for Becks about 2pm, Clare went in with her and came out about 2:30, she said the operation would take two or maybe three hours.
We went home for something to eat and went back about 4:30pm. We waited in the Becky's room and she came back about 5pm. The nurse said it had gone well. Mr Price came in a few minutes later, he said the operation went well. They were able to remove the old tube without much trouble just a few twists and it came free, there was a fair bit of pus around it so it appears that it was the centre of the infection. Some CSF came out too so it may take a while for this to build up again before it starts to drain. The external drain is still in place and it would probably be the middle of next week before this wound was healed enough to allow them to put a permanent shunt in assuming the infection has completely cleared up.
Over the next hour the nurses came to take the obs and give Becky the IV anti-biotics and pain killer injection. Becky was being sick every 15 minutes or so and kept taking the oxygen mask off. The nurse gave her an anti-hermetic injection to control the vomiting. Becks was a lot quieter by 7pm so we left.

Friday 30 June 2006

When I phoned the hospital this morning they said Becky was ok but they had to flush the drain out a couple of times during the night because it was blocking. She had also run a temperature but was stable now.
We arrived at the hospital at 8am, Becky was very pale but also not very responsive. She seemed very drowsy and didn't open her eyes or make any movement to us trying to wake her. We called a nurse who said the doctors knew and were on the rounds so would see her shortly. Another nurse came to do the obs. When the doctors came Vish came in and Moan. Vish said Becky smiled at him when he flushed the drain at midnight and was responsive then, but the drain was blocked now. Mr Price said if it was blocked she would have to go back to theatre. The nurse started sorting things out for the operation and Moan came back and tried to flush the drain again since it was obviously blocked and Beckys state had deteriorated. He couldn't clear it so said that she would have to have a scan first and go to the main theatre as a matter of urgency. Soon after Becky started to be sick. We noticed that her pillow was quite damp where the CSF had leaked from the wound of yesterdays operation. The nurse rolled her over and Becky's eyes rolled up and she started to have a seizure. Clare pulled the red button and within seconds the room was filled with doctors and nurses doing the emergency routine. A nurse helped myself and Clare out of the room and to a rest room.
At 9:15 Moan came to us, Becks was stable in the neuro theatre recovery room which was the nearest with the required equipment. She needed a breathing tube to prevent problems with vomiting before she could have a scan. The scan would show what was happening, if there was any bleeding which could have formed a clot and blocked the drain or something. Becky would then go straight from there to the main theatre and Moan would replace the drain. It may be two to three hours before Becky was back and then she would be on the high dependency unit. After Beckys bed went passed the rest room we left to go and see John and phone everyone else.
After we saw John the Landrover's steering seemed worse than usual so when we got home I tried moveing the front wheels which had a nasty clunk so had to leave that and use Sam's Landy. Ben's Rover was ready so we went to collect that then Ben followed us back to the hospital.
In the meantime the nurse had phoned to say that the scan had shown that there was no blood clot so it should just be a matter of replacing the drain. We went back into the quiet room and Moan came in about 12 ish, he said that they couldn't get into theatre until after 11:00 and he had put a new drain into the same burr hole but going to a different place. He said there was some air in the ventricles from yesterday so keeping Becks on oxygen would help to dissipate that. The CSF pressure had been high so the drain level he set to 10cm not 20cm like before. He said she should be back in about half an hour. He came back about 12:30 to say he would ring the theatre to see where Bcky was. 10 minutes later he came to say that they had taken the breathing tube out but Becky was still very drowsy so she would have another scan on the way back to the ward.
When Becky came back there was some delay while they moved the beds around in the high dependency unit to make room. He showed us the scans and said the site of the new drain was working well and there was nothing wrong with things now although Becky was still drowsy. We went in to her eventually and she was still very pale and not very responsive. During the afternoon they took hourly obs and wanted to put a urine catheta in but Clare reminded them about the soreness Becky had experienced with the previous latex catheta so they would try to get a non-latex one. In the meantime they had to move the beds round again for other patients who were coming from theatre. Becky was sleeping more soundly now but still not responding well, she occasionally opened her eyes but didn't focus on anything. She did respond best to having her feet tickled but seemed well out of it otherwise. The anaesthetist came at some point and we asked him if her condition was due to the accumulation of anaesthetics over these two days and he said no but she had been under for three hours today while they waited for the theatre to become free so would take some time to come round. Mr Price came in later and apologised because he had not been there earlier but had been told about the drama. He looked at the scans and seemed pleased with things now. He said that the raised pressure together with the event earlier was like her brain had been stunned so she would take some time to recover from it all. Demetrius came in too and said he had missed what had gone on due to a training session, he also looked at the scans and checked the drain to see that it was working ok.
When John arrived Becky opened her eyes but I'm not sure if she saw him or not, she may have responded to him, but was soon drowsy again. The nurses were keeping a close check on Becks as well as the other patients so we left about 7:15pm.

Saturday 1 July 2006

Phoned about 6:15am they said Becky was much the same there had been no change overnight.
We arrived about 8ish Becky opened her eyes and seemed to be looking round, we think she could recognise us. There was more response from her and the drain was working. The doctors came and Moan was concerned about how drowsy she was but hopefully she should come round over the next couple of days. Clare was staying all day today and I went to try and fix the big Landy. Ben's car has passed the MOT now.
Clare rang about 10:30 Becky was having trembles now and Clare was quite anxiuos so I went back.
When I got there we went into the quiet room and Clare told me how worried she was, it was difficult sitting there watching Becky sleeping and drowsy and thinking that each little twitch may be a seizure coming.
We went for a walk round then back. Occasionally Becky would open her eyes and seem to look at us but she would have difficulty following us and we couldn't be sure she was in focus or not. Then she would close them again and appear to be asleep.
AJ came about 1:30 so I went home to work on the car. I picked them up about 4ish. Becky had frowned at AJ because of her teeth and appeared more awake. I went back at 6pm Becky was asleep but opened her eyes and moved her hand as I sat down. She seemed to be gripping my hand but I couldn't be sure. When Meyr came Becky's eyes were open and she waved at her with a weak lift of her left hand and a waggle of her fingers. She seemed to respond quite well to Meyr at first and then went off to sleep again. The nurses moved her up the bed a bit so her feet were not catching the bottom bed rail, we went out for this. When we returned Becky was sleeping but looked far more comfortable. Pauline came too for a while. Becky was sleeping peacefully so I left just before 8pm.

Sunday 2 July 2006

I phoned the hospital about 7am, the nurse said Becky was more awake this morning after a good night, and she would tell her I rang.
When we arrived at the hospital Becky's eyes were wide open and she followed us with them as we went in. She was awake and could recognise us. Her responses were a bit jilted but a vast improvement on yesterday. Clare is still a bit apprehensive but everything seems to be working ok. I left to work on the cars.
Sam went to pick Clare up from the hospital, Becky was awake and increasingly aware. Clare and Sam went back this afternoon and returned about 4:30. Becky had been awake and moving more even able to smile and almost talk and fighting with Sam, sort of. John went this evening and Meyr called in too. She phoned to say how mutch better Becky was from yesterday.

Monday 3 July 2006

Phoned the hospital about 6:15am, Becks was awake and had been alright overnight. When we got there about 8:00am she was awake and her eyes were following us but she didn't seem capable of any expression this morning, hopefully she will come round more during the day. Clare was ok so I went to work.
Picked Clare up about 12:30, Becks was much the same, she had been very drowsy all morning. John was going up this afternoon.
Pauline rang me about 5:30, Becky had been quite awake and responding to her and John, she had tried giving Becky a drink but couldn't get the straw in her mouth. They had been to take blood and CSF samples.
I arrived about 5:50pm and Becky was sleeping. Sam arrived just after and we both sat and watched Becky while we chatted. The monitor showed her heart rate varying between 48 to 55 BPM, I had previously thought that the average heart rate was above 70 BPM but the nurse assured me that it was normal for someone sleeping. I later checked this and found that some athletes had an heart rate as low as 30 while sleeping. Beckys was sleeping peacefully and they were going to take some CSF samples later, they didn't get any earlier, so we left about 7:30pm

Tuesday 4 July 2006

I rang the hospital about 6:20am, Becky was awake and had rolled on her right side so the weakness in her left side was a bit better. The nurse said she would tell Becky I had phoned which meant that Becks was awake enough to understand this.
We arrived just after 8:00am and Becky was awake, recognised us and smiled broadly then started crying. We went to her nearly crying ourselves, and she was very responsive and able to move her arms and manage different expressions on her face, I hadn't seen her do this yet so it was really nice. Clare reassured her that she was ok now and getting better. I pulled a face and made her laugh. We went out while the nurses adjusted the bed and Mr Price came up in the corridor saying how much brighter Becky was this morning and they were pleased with the wound on the right side of her head which seemed to be healing ok now, so hopefully they could begin to look at putting in the permanent shunt. Becky was sitting up and looked a bit more comfortable, and then she said whe wanted to go the loo, the nurses brought a bedpan and we went out again. I was going to work now, so Clare walked down the corridor with me.
I went back about 12:15 Becky had been awake and bright all morning, a vast improvment on yesterday. John was going this afternoon.
We went back about 6:00pm and the curtains were drawn around Becky's bed. A nurse with Becky said 'here's your mum' and Clare peeked round the curtain and then went in, I waited outside the curtains. They were just doing the dressing on the right side of her head. It had healed at the top but seemed to have opened at the bottom, the doctors will look in the morning. The nurse wondered if Becky could have something to eat or drink. She did have a drink of water earlier but was sick, so she had some milk and a little while later the nurse came back with a strawberry yogurt and Becky was able to feed herself with a little occasional help from Clare. Becky managed to eat half of it and wasn't sick.
Justine and Kev came too, Becky was really pleased to see them and was able to show it. She was getting a bit tired although she had asked for her tv before we went about 8:00pm.

Wednesday 5 July 2006

When I rang this morning at 7:00am they said Becky had spent a really good night and was sleeping now.
She was still asleep when we arrived at 8:00am.
Becky woke up about 8:45 and had breakfast some cornflakes and a piece of toast and cup of tea. The doctors came round said she was ok and they would come back to look at the dressing on the right side of her head. They took a CSF sample about 10:30 and then she had a wash. Clare left the room while Becks was being washed. When she came back Becks looked tired. The drain had no more fluid than this morning they checked it and said it was working.
One of the nurses said Becky might need central line if the ventflon fails.
I picked Clare up just after 12:00 and took her and AJ back about 2:00pm
No more CSF had drained so the nurse checked it. Mr Price and Vish came in and said she looked much better and Clare told them it wasn't draining much so they checked it by dropping it and then more came through, so they said it was ok. If the infection in the CSF was reduced and everything else was ok they would put the permanent shunt in next week. Becky's eyes were going a bit wonky and she was having difficulty finishing off sentences.
The phisios came and sat her on the edge of the bed but she was a bit wonky.
Ben picked Clare and AJ up about 4:20pm. John was going this evening.

Thursday 6 July 2006

I phoned about 6:45 Becky was quite bright, she has had a wash, I asked if the drain was working ok and the nurse said yes it was. We arrived at hospital about 8:00am Becky was awake and able to say hello with a big smile. She had an oxygen tube into her nose which worried Clare until the nurse explained that the oxygen % in her blood was a bit low and nothing to worry about. The drain had a new bag and the chamber contained 10mls of CSF.
I picked Clare at lunch time the doctors said this morning that they were quite pleased with Becks progress. She is eating now and is quite bright, she has her TV and was watching a DVD. The CSF chamber had 25mls in it now. I took Clare and AJ back after lunch.
Clare rang about 4:00pm, Becks has been moved into a side room, the arterial tube for checking the blood pressure and taking blood samples has been removed and she is fine. They assured Clare they will still keep a close check on her. There was about 45mls in the chamber when she left.
John is going tonight.

Friday 7 July 2006

I spoke on the telephone to someone at the hospital about 6:30am, Becky was fine she had a good night and was still sleeping, I asked if the drain was still working and theysaid that they had not heard that it wasn't.
Took Clare to the doctors at 8:00am and saw Dr. Leese. He gave her another sick note and listened with interest about the problems of last week. He then had a look at the rash on Clare's head and said he thought it was shingles. So he prescribed some tablets for it and suggested that she talks to the people at the hospital about it. It took some time to get the prescriptions filled because the pharmacist was late so we arrived at the hospital about 9:30.
There was a nurse in the room with a still sleeping Becky. She said she was just going to give Becky a wash and that the doctors were coming to take a sample of CSF and had clamped the drain off at 7:00am, Clare said that this was pushing it a bit being clamped off for 2 and a half hours, so she went to find the doctor. The sample should have been taken at 6am to be on the microbiologist's desk for him to look at. There is also the question of why the clamped off EDM was not noticed during the doctors rounds.
There was 150mls in the bag and 0 in the chamber. There had been 60mls drained from the chamber at 7:00am according to the pink sheet.
I was very concerned because Becky was asleep and not immediately responding to us being there after she had been improving so much over the last couple of days. Yesterday and Wednesday when she was in the high dependency unit she had been awake and looking at us as we went in just after 8:00am but now at 9:30 she was still asleep. We knew that her tolerance of higher pressure was not going to be as good as it was before last weeks episodes because we have been watching the drain practically continually since then and the fear was that if she reacts adversely again now, this could set her recovery right back and could even require another emergency operation which wouldn't do her any good at all.
Another nurse and the registrar came in, he checked the drain and now that it was open again it was draining quite well. I voiced my concerns about it being blocked for so long and maybe causing a bad reaction on Becky, particularly since she was making progress now, so he was going to find out what the delay was. I said that if we had not been here now it could have been blocked for another hour, I know the nurses are streched but they should know what is going on. He agreed and said that it was a management decision about the number of nurses on the ward and they were talking about cutting some of them now too.
Clare had gone to see the ward Sister about her shingles and I joined her in the visitors room while the nurses washed Becky. Sister was having a word with one of the doctors about Clare coming onto the ward while having the rash and she was also going to find out about the EDM being clamped off.
The Sister came back shortly after. The doctor thought is best if Clare didn't come into the ward while the rash was possiblt infectious. It may not have any effect on Becks but it was best not to risk it. We thought it was best not to risk infecting anyone on the ward who may not have had chicken pox anyway so that was ok, it may also give Clare a needed break too. The Sister had found the doctor and he had taken the CSF samples but not told the nurses, but he said he had un-clamped the EDM, this was a worry!!
I told Sister that I was seriously worried by this event and felt that with Clare not being there and Becky in a side room on her own a situation could develop without anyone knowing. She asked what would make me more confident so I said if I knew someone was checking on Becky regularly, like every hour or so that would help. She said that she wanted to implement a procedure for the EDM patients where instead of waiting for the chamber to fill to 50 mls or more before draining it into the bag, a nurse would come every hour to empty the chamber and make a record of the amount. I said that would be good, and go a big way towards reassuring me that Becky would be okay. We also discussed the need for improved commmuncations between nurses and nurses as well as doctors and nurses and she said she would be having a word with Mr Price about that too.
We waited for the nurses to finish washing Becky, then one came to tell us we could go to her. I wondered if she had been given her breakfast yet, there had been no sign of a tray in her room. I asked and the nurse said there had been a couple short and Becky had been asleep. So Becky hadn't had any breakfast yet either, the nurse said she would go and get some. Becky was now sitting up in bed and looked quite bright, the EDM was working ok and Becky said she was hungry. The nurse came with some breakfast and Clare helped Becky at first then she managed on her own with some difficulty because of the bandaged ventflon in her right hand, I just hope she doesn't spill any. Clare explained to Becky about the shingles and that she would not be able to see her for a few days, it took a few attempts before Becky fully understood what she was being told but eventually she did and told Clare to rest and get better, I told her that I would see her tonight and John was coming in this afternoon.
I went in about 6:00pm Becky was asleep and her tea of cheese sandwiches was on a tray on the trolley by her bed. I checked the EDM levels and there was 200mls in the bag and 4mls in the chamber. I woke her up and asked if she wanted her tea, she thought it was breakfast but I showed her the time and she was a bit surprised to find it was after 6:00pm. She didn't want the cheese sandwiches but ate the yogurt and some of the trifle. The bandage had gone from her right hand although the ventflon was still there close to her thumb. There was a full anti-biotic bag hanging on the drip stand but no one came to connect it while we were there. Sam came and she brightened up a bit more. We chatted a lot and although some things she didn't seem very aware of she was generally very bright and able to move about quite well. She wanted to go to the toilet as opposed to just letting go using the catheta, she didn't seem to realise that she wouldn't wet the bed and was very apprehensive about doing so. This three or four times while we were there and each time she seemed to have forgotten what we said the other times.
I looked at the fluid chart and was disappointed to see that the CSF chamber on the EDM had been drained only every two hours not every hour like the Sister wanted.
The figures were, 11:00am 14mls, 1:00pm 12mls, 3:00pm 20mls and 5:00pm 12 mls which all adds up to 58mls and there was 200mls in the bag where this morning there was 150mls, so thats about right.
It didn't look as though the dressing had been changed on the right of Becky's head, so I'm not sure if some of the stitches had been taken out or not.
Becky was watching TV when we left about 8pm.
I rang the hospital at 11:30pm to check she was alright, the nurse said she was sleeping and fine, she had her tablets and the drain was working ok.

Saturday 8 July 2006

I rang this morning about 7:30am Becky was fine and her drain was working.
I went to the hospital for 9:30am Becky was sleeping but looked ok, there was 325mls of CSF in the bag, I checked the pink sheet and although there was only two fluid value entries there was a tick in the box every hour during the night. The ventflon had gone from her right hand with a new one in her left, the bag of anti-biotics on the drip stand was now empty and not connected to Becky, so that had been sorted alright. She awoke and seemed quite bright, I asked if she was ok and got a thumbs up and faint alright from her lips. We chatted for a while and I told her about the interpreter from Deaf Link who would be coming in every day next week for an hour in the morning while Clare recovered from shingles. Becks was quite pleased about that. She still wanted to walk to the loo and didn't seem to realise about the catheta, but that was working because the urine bag had been changed overnight and had a fair amount in now. The dressing on the right side of her head still hasn't been looked at. Becky was dozing and watching TV so I left about 11:00am. The CSF in the tube had been moving but there didn't seem enough pressure to push any into the chamber while I was there.
No nurse had been near while I was there. The cleaner had been in and later brought Becks a cup of tea. There was not a lot of nurses but as I left I saw one by the desk. I asked about the dressing on Beckys head and said that the Sister had talked about taking odd stitches out, the nurse said they don't take them out for 8 days, I mentioned that this was what the Sister said yesterday and she said oh yes I don't know what I was thinking, that's right we'll look at that. I also asked if she knew that Clare had shingles and would not be in for a few days, she said yes the Sister had told her that. I mentioned that Becky hadn't had a wash this morning either, she said something like are you sure and I said yes she still has her stained nightie on from last night, so she would chase that up too. I left feeling a little guilty for leaving and somewhat concerned.
John went up this afternoon and i went back about 6pm. Becky was fast asleep and her tea of ham sandwiches was on the tray. She had been washed and had clean pyjamas on. In the bag there was 350mls of CSF and 10 in the chamber. Although the fluid could be seen moving up and down in the tube there didn't seem to be much draining. I woke her up, she seemed to take a few minutes to come round but was fine then, she tried eating her sandwich although she first said she didn't like ham. The ventflon was in right hand now and making it difficult to pick up the sandwiches.
Sam came with a little soft dog which Becky loved. Becks was a lot brighter now and then Pauline came too with some marshmellows so Becks was really pleased. The dressing on the right of Becky's head had still not been touched, I aske the nurse but he wasn't keen on taking stitches out until 7 or 8 days after the operation, I mentioned that this wound was now 9 days old but nothing was done.
Pauline went went Becky had to go the loo and a nurse brought a bed-pan. Becks didn't do anything but she was ok, she still wants to walk to the loo instead of just letting the catheta do it.
Justine Kev and Uncle Tony came later, and Becks was pleased to see them.
Just before we left I check the dressing on the right and there was some staining on the collar of her pyjamas, as we went out the doctor was at the desk so I told them about the dressing and that something was oozing or leaking from it, they said they would have a look.

Becks
Becks
Becky with the new soft toy from Sam.
Becks

Sunday 9 July 2006

Phoned about 7:00am, Becks was fine. I arrived about 9:00am and Becky was eating her breakfast and seemed quite well. The EDM had 450mls in the bag and 20mls in the chamber, so that was working fine. There was no ventflon in either hand. The dressing had been changed and when I asked the nurse later she said that it had been oozing so the doctor had sent a swab off for a quick analysis. I went out while they gave Becks a wash and she was clean and bright when I went back in, I helped her to clean her teeth and we chatted. She wanted to go the loo and I had to explain about the catheta, but she wanted to do a pooh so the nurse brought a bedpan.

Becks got quite upset at not being able to go to the loo and wanted to go home. She soon calmed down though and was her normal self, one of the nurses came to see what was the matter and Becks said she was alright now.
After that she was fine and watched some TV, I said I was going to have my lunch now and she wanted the DVD on, so I left her watching that about 11:10am.
I returned about 2:00pm Becky was dozing but woke as I went in. She said she was fine and had her lunch earlier. There was a ventflon in her right hand but the pump was off. Strangely there was 450 mls CSF in the bag and 3mls in the chamber so the 20mls that had been in there had gone somewhere, I assume into the tube between the chamber and the bag. A nurse came in and I asked if Becky could sit out or not and she said probably, she would go and try to find a chair. Sam came soon after and we helped Becky to sort her DVDs our. A nurse came in about 3:00pm to set up another anti-biotic IV but the one that was there had not all gone through. The pump had stopped before it had finished, he set it going again and said he would be back when it had finished. I asked another nurse who came in when the catheta could come out? She said she would check why it was put in initially. She came back with another nurse and they took the catheta out, and said they needed Becky to go the loo soon to check that she could. A nurse came in and set the new anti-biotic going soon after, Becky was quite upset because she thought it had finished but it soon passed and she wanted to go the loo. A nurse brought a commode in and I helped her to get Becky on it. When she finished she was quite steady standing with help and moving back into bed.
Becky was watching another DVD when I left about 4:30pm. John was going up tonight. Pauline rang about 9:00pm, Becky had been fine but a bit confused, she thought Sam was still there in the visitors room, but they managed to reassure her that he wasn't. John went out to get another sandwich for Becky because she was still hungry although she had eaten her tea.
I rang the ward about 9:30pm to check and Becky was fine now although she had been a bit upset and wanted to go home but John and Pauline had helped the nurse to calm her down.
We had a phone call from the ward about 10:30 to say that the drain had come out and Becky would need an operation to put it back. So we went up.

Monday 10 July 2006

On Sunday night we arrived at the hospital about 11:00pm. Becky was sleeping but awoke when we got there, she was quite bright and really pleased to see her mum. The nurses were doing half hourly obs and Becky was very sleepy until about 3:45am when the registrar came in. There had been an emergency which needed a complex operation which had taken until then. He looked at Becky's head where the drain had been and said he would like to do the operation to put a new one in sooner rather than later because the theatre was heavily booked for Monday. He said he would put a drain in with a reservoir which would be less likely to come out accidently.
They took Becky to theatre about 4:50am, so we went home about 5:15 to have some food and try to get back for 7:00am. It was 7:30 when we got back, the operation had gone well and Becks was quite responsive, she woke up when we got there and recognised us. The doctors came round about 9:00am and were happy that the drain was working and things were ok. We checked with the nurse who was looking after Becky and left to get some sleep.
AJ was going up this afternoon so we went back about 14:20 after a good sleep. Becky was very much awake and although confused seemed quite bright, a great relief after the experience of the last post-op time. We chatted and she seemed reasonably happy, she seems to be reaching the stage where she justs want to go home now and is suffering the frustrations of difficult communications and anxiety about going the toilet. She looked quite tired when we left and was suprised when we told her she had been awake all night, so her memory isn't working properly yet, just hope it will eventually. John was going up tonight.
Pauline rang about 22:15 and said she had seen Becks about 19:45 and took her a ham roll which she quickly ate. Apparently Justine had been as well tonight.

Tuesday 11 July 2006

I rang the hospital about 6:45am, Becks was fine and the nurse went to check if she was awake. She came back to say that Becky was asleep now but had been awake watching the news on TV. The drain was working fine.
I went about 8:15am, Clare stayed at home to rest and recover from the shingles which has almost gone now. Becky was asleep when I got there and the drain had 150mls in the bag and 6mls in the chamber. I woke her and she was pleased to see me but asked where her mum was, I told her mum still wasn't well enough to come in the morning yet, and the lady from Deaf-Link would be coming about 10:00 then John this afternoon and mum would come tonight. She seemed happy with that and said she wanted a wash before the Deaf-Link lady came. I took her some of her magazines which cheered her up a bit too. She wanted to go the loo so I pressed the button and the nurse came, so I explained to her about Clare not coming in and she said not to worry, they would be keeping a close eye on Becky. I left to go to work.
I went up again at lunchtime about 12:30, she has been moved to a four bed room, the lady from Deaf-Link was there at the time so that was helpful. Becks seemed quite happy, her lunch came just then brought by a nurse Becky knows quite well who said she would be looking after her this afternoon. She needed to go to the loo so we called and another nurse brought a bedpan. Afterwards I helped to cut up her sausage roll and she asked when mum was coming, I told her John was coming this afternoon and I would bring mum this evening. She was quite bright and the drain had 200mls in the bag and 10mls in the chamber it seemed a bit discoloured particularly compared to before the op, only to be expected I suppose. I left to go back to work.
Clare said Pauline had rung and the physios had helped Becky to walk a little way this afternoon so that's another step in the right direction.
We went about 6:00pm, Becks was really pleased to see Clare and Clare was to see Becky. She was having her tea and was quite bright. She went the loo a lot while we were there and the nurses were excellent with her. She asked for her watch and her phone, we gave her her watch and explained that she couldn't use her mobile in the ward so that would have to wait a bit. She was getting tired by 7:30 so we left her watching a DVD about 7:45.

Wednesday 12 July 2006

I rang about 7:00am Becky had spent a very comfortable night and was fine this morning. I arrived about 8:15am, Becky was sitting up in bed waiting for her breakfast and drinking some Vimto. I had brought her another magazine which pleased her somewhat. I told her who was coming today, the lady from Deaf-Link at 10;00am, mum and AJ at 2:00pm then John this evening. She was very bright so I left to go to work. There was 350mls of CSF in the bag and it looked as if the chamber had just been drained.
I went up at lunch time, the lady from Deaf Link will be busy tomorrow so another interpreter will be coming, Becks knows her so should be no problem. Becks was fine so I left her to have her lunch.
Clare and AJ went this afternoon and Mr Price came, he said that the new shunt parts had arrived so he hoped to operate on Friday or since he was on call over the weekend maybe Saturday assuming the CSF samples were clear. There was some possibility that the operation maybe tomorrow but not likely. John was going this evening
I rang about 9:00pm to see if Becky was on the theatre list for tomorrow and she wasn't at that time.

Thursday 13 July 2006

I rang about 6:30am, Becks had spent a good night, there was a possibility of the operation today so she was being fasted. I arrived about 8:15am and Becky was being washed so I had to wait a little while before seeing her. When I went in she had a theatre gown on but was quite bright and cheerful, although a bit scared but she said the nurses had helped her not to worry. There was 450mls in the bag and 14mls in the chamber. The nurse said it was best to be prepared for an op and they would soon know if it would happen today or not. The lady in the next bed was going to theatre now, and the theatre staff who came for her knew Becks and were laughing and joking with her, it cheered her up a bit. It was 9:45 before we knew. Mr Price came in and told me the same thing he had said to Clare, that the op may be tomorrow or more likely over the weekend, but not today. The nurse was there as well so she then went to get breakfast for Becky, the doctors doing the rounds came in just after and said the same thing, I said I knew already, Mr Price had been in. I left Becks finishing her breakfast as a nurse brought a bedpan for her, and hopefully help her out of the theatre gown.
When I rang about 1:30pm Clare and AJ were already there and Becks was fine.
I picked them up from the hospital about 4:00pm, Becks was fine. There was another patient who was on the list for tomorrow but it was dependent upon the results of her tests if she would go, if not then Becky would go in that slot. John was going up this evening.
John came to our house about 5:15pm, he had been waiting for an hour for a bus, so I gave him a lift.
I rang about 9:30pm to see if Becks was on the list for tomorrow, but they hadn't had the list yet.

Friday 14 July 2006

I rang this morning, Becky was fine and was on the "probably" list again, so she was fasting and had a theatre gown on. Clare came in with me today, she said she was feeling much better and had finished her course of tablets for shingles so should be alright. We were both feeling very apprehensive about Becky's operation and helped each other to feel better.
Becky was asleep when we arrived, but peaceful and the drain was working with 600mls in the bag and 12 mls in the chamber. There was a lot of doctors about and we thought they might start their rounds, then they had vanished by 8:30 so I went to work. Clare would ring me just after 10:00am if not before. She rang just after 10:00am still not certain but Becks is still fasting.
I went up about 12:00 Becks was asleep but fine the drain had 25mls in the chamber , I think. I went home to get Clare some lunch, the doctors had said the op may happen if they can finish the other one before 4:30pm.
When I got back Vish was there and he had clamped the drain off which now had 35mls in. It was almost certain to happen this afternoon. Becks was awake and quite bright. John came soon after so Clare and I went for a drink and walk and left the two of them together. Becks had been moved to a single room again.
Becky went to theatre at 3:50pm we went home and gave John a lift home. We returned about 6:00pm , Becky came back just after. She was fine, it seemed very strange for there not to be a drain to keep an eye on. Becky awoke slightly and indicated that she felt sick, she vomited but not too much then went to sleep again. She was able to move normally and recognised us in between sleeping and briefly waking. The nurses said that there would be an X-ray of her chest but that had not happened when we left about 8:00pm.

Saturday 15 July 2006

When I rang they said Becks was fine and was having a wash. We arrived about 8:45, Becky was sleeping peacefully and soon awoke. We asked if she could have a drink and they said no not yet because she may have an ultra-sound scan on her abdomen, Clare asked why since the shunt was now draining into her chest and what about the chest X-ray? The nurse hadn't seen a chest X-ray. While we waited for the doctors Becky went the loo on a bedpan, a lot and slept a lot. She was bright and cheerful but sore. When they came to do the obs about 10:40 she was well enough to not need the oxygen nasal tube so that went. The doctor came and said that Becks could drink but only small amounts. A bit later Mr Price came, he said the operation went well with the new position of the shunt and routing the tube into her chest at the back. There was a possibility of a collapsed lung but the X-ray showed that his hadn't happened and everything was ok. I asked about the X-ray and he said yes it was done last night. So now Becky could eat but slowly and if everything was ok after 48 hours the physios would start helping her to move about and then walk. We helped her to have her lunch and then waited until 2:00pm when we went home for some lunch ourselves.
We were back by 6:00pm Becks was just about to have her tea. She was bright and chatty and especially so when Sam came for a while. There was a drip up as well as her having the IV anti-biotics still. She was getting tired so we left her watching a DVD about 8:00pm.

Sunday 16 July 2006

Rang about 8:00am this morning and Becky was fine. We arrived about 9:00am Mr Price was sitting at the desk on the phone and waved as we walked past. Becky was sitting up eating her breakfast and very bright, so I left to do some work at home.
Picked Clare up about 12:00 Becks was fine somewhat confused and going the loo (bedpan) a lot but quite bright.
I went back for 2:00pm Becks couldn't remember having her lunch but there was evidence of it. We spent some time going through all her 'Get Well' cards, she wouldn't look at one because she thought it was from nana Beatty but I assured her that nana was happy in heaven and she was ok then. She was still going the loo a lot and drinking plenty. The nurse came to do her IV anti-biotics so the ventflon in her arm is still working fine. I left her watching TV about 4:00pm. John was going up tonight.

Monday 17 July 2006

I phoned the hospital about 6:30am and Becks was fine, she was awake and just had her tablets, the nurse said how good it was to see her getting better.
We arrived about 8:00am and Becks was awake and bright, she still keeps thinking she will have another operation and wants to go home when we say she isn't. Clare stayed and I went to work.
Picked Clare up about 12:00 Becky looked a bit tired but Clare said she had been out of bed and walking about a lot with the help of the nurses and even going the toilet with two people to help. I took Clare and AJ back about 2:00pm, John is going this evening.

Tuesday 18 July 2006

Becks was fine when I phoned about 6:45am. I called about 8:15am and Becks was sitting in a chair, I brought her the magazines she has every Tuesday and she was pleased about that, she was quite bright but still confused. John was going this afternoon.
Clare and I went about 6:00pm. Becks was eating her tea sitting in her chair. She was walking a lot better now but became quite tired after walking up the ward and we used a wheeled chair to take her back to her room. She is still getting very confused but the nurse said it might be just her recent memory. She thought she had been to other hospitals besides ward 23. She was tired by 8:00pm when we left.

Becks

Wednesday 19 July 2006

Becks was fine and had spent a peacful night when I rang about 6:45am. Clare was going in this morning, she is concerned about the confusion Becky is suffering. When we arrived at the hospital about 8:00am Becky was still asleep, so I woke her up and she was suprised and pleased to see us. She thought she was having an operation today again so we had to assure her that she wasn't. I left to work on the Landy's brakes. Picked Clare up about 12:00, a doctor was trying to find a vein for a ventflon for her IV anti-biotics but not having much luck. He gave up and said he would ask someone who was better at it than him to come and do it. Becks is still quite bright and gradually getting stronger but it will take some time. Clare spoke to Vish who said the confusion will pass in time and it was not unusual.
After lunch took Clare and AJ back about 2:00pm using Sams Landy.
Clare came home on the bus having left the hospital at 4:00pm, Becky was fine but still confused. John was going up tonight.

Thursday 20 July 2006

I rang about 6:30am and Becks was fine after a peaceful night. We arrived about 8:00am and Becky was being washed by one of the nurses in her room. She was bright and very pleased to us, so I went to work.
Picked Clare up about 12:00 Becky is still confused but getting stronger. The ventflon is in her index finger of her right hand, not very comfortable but working. Took Clare and AJ back about 2:00pm, then picked them up about 4:00pm.Becks had been walking up and down the ward going further each time. Mr Price was talking of stopping the anti-biotics and seeing how she goes and maybe thinking of going home.
John was going up tonight. Pauline rang about 9:30pm to say that Becky had been outside with John this evening which was a pleasant suprise for Pauline.

Friday 21 July 2006

Rang this morning about 6:45 Becks was still asleep and had spent a very good night, the support worker I spoke to said he would tell Becks I rang when she woke up.
We arrived about 8:10am and Becks was just coming out of the toilet, on her own walking very well now. She was very bright and even pouring her own drink with her left hand, so that's an improvement too. Later on Becks was moved into a 4-bed room which she much prefers.
John wasn't well so Pauline went up this afternoon and this evening. She rang about 8:45pm, Becky was fine and had been walking about on her own quite well. A nurse had mentioned about Becky maybe able to come out for a day next week.

Saturday 22 July 2006

Becks was still sleeping after a very good night when I rang about 6:30am. We arrived about 8:30am Becky was up and about and had been washed. A nurse said that maybe she could come out today on ward release. The doctors came round and were very pleased with Becky's progress and said there was no reason why she shouldn't go home for the day. Becks was really pleased, she spent the day at our house and John came round too.
We took Becky back to the hospital about 7:00pm, she was due her anti-biotics about 10:00pm but now its in tablet form not IV. She was very tired so we left her in bed watching TV about 7:45pm.

Becks
Becks
Becks at our house with John
Becky with John at our house

Sunday 23 July 2006

We arrived at the hospital about 8:30 Becky was washed and dressed and Clare took her for a walk up the ward to find a nurse to see if she could come home again today. They saw the doctor by the desk who said yes it would be fine and she could sleep at home tonight too. The nurse sorted out the tablets Becky would have to take tonight and in the morning and we soon left. At our house Becky watched TV and rested but was able to wander about a bit even into the garden. John came round most of the day and Becky went to her house about 7:00pm to sleep.

Monday 24 July 2006

We picked Becky up from her house about 7:45am and took her back to the hospital. There was a large soft toy by her bed which someone from the Deaf Club had brought yesterday. The nurses were pleased to see Becks so well and she was wondering when she could go home for good. I left and went to work.
Clare rang about 10:30 to say Becky had been discharged so could go home. I went for them about 12:00 and we had to wait for the pharmacy to do her tablets and the doctor to do the dischage notice. Becky will have to have blood tests next week and an appointment to see Mr Price in about a month. We finally left about 1:30pm.

Tuesday 25 July 2006 - Tuesday 1 August 2006

During this week at home Becky was gradually getting stronger although not quite as quickly as we expected. She was sleeping at her house and John was with her most of the time. At other times she was at our house and John came too when he wasn't doing something else. We tried to get her to rest as much as possible and she spent some time using the computer.

Wednesday 2 August 2006

We took Becky to see Dr Leese this afternoon to check the swelling on her chest, her memory problem and her general condition. He said her walking and general condition will take a while but she will gradually get stronger day by day. He examined her chest wound where the incision was made to put the shunt tube through to her chest and wasn't sure about it so he rang Mr Price's secretary. Becky's blood test had come back fairly clear.
Mr Price's secretary rang back to say that as long as the wound was not red and inflamed it should be alright but if we had any concerns we could get the GP to refer us back anyway.
This evening we had a call from John to say that Becky's head and chest were hurting and she was crying. We went round and she wasn't very well at all but bright and able to laugh at jokes. We called the doctors and after a couple of phone calls to nurses and the doctor he came out. He examined Becky and although she didn't have a temperature he phoned the hospital and we took Becks up to see a neurosurgen in A&E. It was Ahmed who came and he said the chest wound wasn't right and ordered an X-ray. He showed us the X-ray when he came back and said the tube had coiled up under the wound and was draining there hence the swelling. It was probably not draining correctly resulting in the headaches Becky had experienced, these had subsided somewhat now. He said she would need an operation to put the tube back properly, they would do this on Thursday when there was only two other operations on the list. Another doctor came to take blood samples and put a ventflon in. He had some problem finding a vein but managed fairly quickly and efficiently to complete the task.We eventually arrived at Ward 23 about 2:00am. Becky was settled so we went home.

Thursday 3 August 2006

We arrived at the hospital about 8:15am Becky was sitting in a chair while the bed was being made. She was fine and able to walk to the toilet with Clare's help. I went to work.
I went back about 12:15 Becky was in a theatre gown and ready to go for her operation. She went about 2:00pm so we went home for something to eat. We got back about 4:15pm but Becky didn't come back until 4:45pm. She was wheezing a bit but otherwise fine. The nurse was taking obs every half hour and Becks was half asleep but well aware of us. The doctor came to say the operation had gone well, he had put clips in to try to anchor the tube so it wouldn't happen again but this was not foolproof, so we just hope. We left her sleeping after the nurse gave her a pain killer injection about 7:00pm.

Friday 4 August 2006

Becks was fine neurologically when I rang the ward about 6:45am but she was calling for a bedpan a lot!!
When we arrived at the hospital about 8:00am we met Mr Price and some of the other doctors in the corridor, Mr Price said they had managed to uncoil the tubed and 'nailed' it in to stop it happening again. Becky's first word upon seeing us was "toilet" the nurses had told her not to get out of bed herself but to call them. No problem a nurse came quite quickly. She was fine so I went to work. Becks was fine at lunch time when I picked Clare up, she may be able to come out for the day tomorrow. John was going this afternoon.
We went back about 6:00pm Becks was sitting in a chair having her tea. Her memory is still not good and she keeps asking the same questions and yhinking she is having another operation, but her long term memory is not too bad.

Saturday 5 August 2006

We arrived at the hospital about 8:30am and they let Becky out for the day, so we able to take her home. She was very well during the day at our house but tired by the time we took her back about 7:00pm.

Sunday 6 August 2006

Becky was fine when we arrived about 9:00am the doctor came round and said she could go home again today and stay overnight because she was so well. She does seem more alert than she did when she was discharged 2 weeks ago. At home, our house again, its easier because of the downstairs loo, Becks rested, watching TV and using the computer.

Monday 7 August 2006

Took Becky back to the hospital about 8:00am, she had been fine getting up this morning. I went to work.
Clare rang about 10:00am to say Becks could come home. I went up and we left about 12:00noon.
Becky will be staying at our house for a few days until she's a bit stronger.

Wednesday 9 August 2006

Becky went to her house and will sleep there tonight.

Thursday 10 August 2006

Becks was fine last night, John helped with her tablets.

Tuesday 15 August 2006

Becks is getting stronger by the day now. We went to Bridgemere, the large garden centre near Nantwich, last Saturday and today we went on a trip to Wales. The Welsh weather was what we know and love in wales in summer, rain and cloudy. We went to Black Rock Sands so we could go on the beach without getting out of the car, but Becky still got out anyway.

Becks
Becks

Tuesday 22 August 2006

Today we went for a drive to Tatton Park, Becky liked this tree so much I had to photograph it.

Tatton