December 31 2012

Can't believe it's the last day of 2012!!!

H was sitting out in chair when I got there.  She seems a little dopey today but is watching DVD's 
.

Doctors talked to my dad before I got there.  They have spoken to John  Radcliffe about the skull flap.  Helen will probably go back there for bone flap replacement but they're not sure whether before or after move to Haslemere.

December 28 2012

One of the nurses has contacted podiatry re Helen's toes.  They do not do visits - patients usually go to clinic.  She has been referred to Winchester but could wait 4 weeks or more.

Her tummy is very bloated today - why?

She was visited by Gill (diabetes nurse) and Dr Turner (diabetes consultant).  Her sliding scale has come off today and she is on 80 units Lantus now.

December 26 2012

Helen looks good today.  She's not sweaty today.  It may be that this is her way of showing pain or distress.

Dave, Dad, Auntie Alison & Beth visited this morning.  She seemed to like seeing them.  It is the first time that Beth has seen Helen and she took it in her stride.

It was not handed over to the next shift about ingrowing toenails.  One of the nurses has written it on charts for today and tomorrow.

There is still no definite date for moving to Holy Cross - it is still hearsay.  I will ask tomorrow to speak to team about move.

December 25 2012

Helen's 19th birthday!!!

We visited in the afternoon.  We didn't really know what to buy her so bought DVD's, clothes and smellies!!

We had a quiet Christmas. Visited Helen on Christmas Day. I left a couple of banners for the nurses to put up for her birthday, which they did. She got a card from the HCA's and nurses, which was really sweet. She got loads of new earrings and several balloons. Her boyfriend got her a beautiful bear that he recorded a message on.

She has an infected toe nail on the right foot.  It is red but no pus yet.  Toenails are ingrowing on both feet.  I informed the nursing staff and they will ask the doctor to review on 26/12.

We were informed by the nurses that Helen is moving on 21 January to Holy Cross.  Have asked for clarification and whether this is correct.

Helen's hair cut was cut off on 24 December as per my request :(  It was getting so matted and couldn't be brushed properly.  It looks lovely but at the same time it looks strange!

She is very sweaty looking with a temp of around 37.5.  But she is alert.  Her head is very concave after her shunt.

December 22 2012

Why do I always seem to type at this time of night!!

Helen's operation went ahead today with no complications :). She has got a slightly concave head now. She is more awake, despite having general anaesthetic. She had a trachy change. She's gone from a 7 to 6 and now back to a 7. I don't know how Basingstoke are going to take it - it is a different make of trachy and has a different inner cannula!! This one screws in rather than pushes in. Lets hope they send some replacement bits back with Helen.

The nurse looking after Helen today also looked after her in Basingstoke so she was able to tell them all sorts about Helen. She remembered my eldest grandson, who took rather a shine to her and kept asking for her to listen to his heart. It was really nice that Helen was looked after by someone who knew her.

I have got to phone Southampton in the morning to see if they've heard about moving her. Hopefully her bed might still be free.

December 21 2012

They decided not to do the op today because they couldn't be sure that she didn't have an infection in the CSF. She had a CT yesterday which showed she has very enlarged ventricles. But she is much more alert than when I saw her on Tuesday night. Not as alert as before but much better than on Tuesday.

She had to have a lumbar puncture and loads of blood taken again (she had loads taken on Tuesday when she had her breathing crisis). The medical staff at Southampton need their own bloods. She is so difficult to bleed

Anyway, the lumbar puncture came back clear of bacteria so she can have the shunt done tomorrow morning They did another lumbar puncture late this afternoon. After reviewing the scans again the neuro team decided that she needed some of the fluid removing before surgery to lessen the impact of removing a large amount of fluid. I don't know how much they took off.

The neuro consultant asked me if her head had ever been concave. Apparently within 6/8 weeks of a craniotomy the head should be concave not rounded or convex. I said that it has never been like that. He wasn't happy!! It sounds as if this might have been avoided. We have got a different shaped head to look forward to over the next couple of days.

They are trying to decide what to do about her bone flap, which is in Oxford. They could arrange for it to be transported to Southampton whilst trying to keep it sterile; they could transfer Helen back to Oxford for replacement of the flap or they could go straight for titanium plate. Again the consultant was very surprised that her flap wasn't in her stomach. I think they will see how the shunt is working and then see about the skull replacement.

I had to let the physio team know what Basingstoke physios have been doing with her. They are very impressed with her hand and leg splints. She was not transported with her neck support though. Her boyfriend had to go and collect all her belongings and the support was in the bag - I will take it with me tomorrow. I also had to tell them when her PICC was inserted because it won't documented!! Luckily I had made a note of it.

Hopefully I will have good news to report tomorrow!!

December 20 2012

Helen has left Basingstoke by ambulance and her operation is at 3 this afternoon. Hopefully everything will go well and she will be back to Basingstoke in a few days. I will phone later and will try to pop down to Southampton and see her tonight. If not, I'll go down tomorrow.

Phoned Southampton hospital and for some reason they have delayed the operation until tomorrow She transferred fine, is settled in and has now got her feed back on. Only bummer is that she is back on sliding scale - they put her on it for the journey. She is no worse than she was. It's just another delay and another wait for us. I hate it that time is creeping towards Christmas and her birthday.

Helen is more alert today.  Her eyes are open and slighty following. I spoke with Dr Duffill, a Neuro Surgeon at Southampton.
 Helen's head will have distinct dip in after operation. She should never have had a rounded head from the start.  They queried whether she had too much fluid from outset and should have been fitted with a shunt sooner.

Lumbar puncture is to be taken today to check for any white cells and signs of infection.  If she has an infection, then an internal shunt cannot be fitted because it will become infected and have to be removed.  External tap will be fitted instead to allow CSF to be drained off. If there are no signs of infection, the shunt can go ahead. They will shave little bit of hair behind ear, drill a hole, insert the shunt and feed the drain down into the peritoneal cavity in the tummy.

What is a shunt?

Hopefully return to Basingstoke this weekend.

Skull replacement options discussed are:

Helen return to JR for operation
Skull transferred sterile to Southampton for replacement
Titanium plate put in.

Decision will be made after shunt is working effectively.

December 19 2012

Helen definitely has communicating hydrocephalus. And she's not going to Oxford, she's off to Southampton!! They decided that because she will need ongoing assessment and regular reviews it would be better (and more sensible) for her to go to Southampton, even though her skull is in Oxford. The neuro team at Southampton general were on standby to receive her but unfortunately no one thought to inform the bed manager that she as coming! So there was no bed available. So they are trying again tomorrow. Of course if she deteriorates then it will be full alert, blue lights down the M3. Her GCS is stable, between 7 & 9/15.

I went to see Helen this evening after being up to my mums. She looks awful!! It was like looking at her when she was still in Oxford. She is really dopey, her eyes are mostly closed but when they do open she is staring off into space, her head is swollen and her skin looks really spotty again!! She has needed quite a bit of suctioning today.

While I was there her respiration rate went from about 24 to 35/minute over about 10 minutes and she was really struggling. Her chest didn't sound as if there was anything on it. The medical doctor was called and she was put on oxygen and had an ECG. When the on-call doctor came, he examined her and did some more neurological tests. They didn't think it was the hydrocephalus but needed to rule out anything untoward going on. She was suctioned just in case. She was given fluid, blood tests were taken, sputum sent off and another urine sample sent.

After the fluid started going through, her respiration rate came down and her heart rate came down from 150 to 130. Hopefully this has stabilised her enough. I told the nurses to call me during the night if necessary,or if she moves before the morning.

December 18 2012

Helen has communicating hydrocephalus.  This means she has increased pressure in her whole central system because the brain isn't telling the body to disperse the CSF.  She needs a ventricular-peritoneal shunt put in.  The best place for her to go back to John Radcliffe because they know her but she will probably go to Southampton General.  She will be in 2/3 days.

Her GCS is back to 8/15.  They may do a lumbar puncture to relieve some of the pressure if no bed is available soon.

December 17 2012

I almost feel that this thread needs to be moved to progress stories now - it's not so much of a new story now

She has another urine infection (pseudomonas). Another catheter change.

Last week I was concerned about Helen's head becoming more "rounded". I asked the nursing staff whether it was a build up of CSF again and was told it probably wasn't. I was told that there would be more signs like Helen being agitated or combative (even though she can't actually move).

I asked the neuro consultant who was looking at her botox'd arm. He looked at her head and seemed rather confused. He seemed to think that she had had a small craniotomy and had fluid under the skin. He also thought that she had another scan since she had been at Basingstoke. I said she hadn't. He looked through her notes and she hadn't had one since she was in John Radcliffe.

At the weekend (Saturday, my birthday) we visited Helen. She was really sleepy, verging on unconscious type sleepy. She barely woke even when she was moved. I expressed my concern again that she was so sleepy. She did wake up briefly before we left.

I am visiting my mum in Kings Lynn for a couple of days. This morning I got a call form her neuro consultant saying that the nursing team had expressed some concerns about Helen!! They said she was being taken for a CT scan this morning. They said that she could either have an infection in her brain or be developing hydrocephalus.

I got a call back this evening saying that she was being moved back to John Radcliffe within 24 hours to have a shunt fitted. I don't know how long she will be in there or whether she will be moved back to Basingstoke afterwards.

Any advice on shunts would be greatly appreciated. It never rains but it pours

December 13 2012

Quick update. No real changes but Helen's chest infection has cleared finally :). Her blood sugars are more stable so she is trialling being off the insulin sliding scale, which seems to be going ok. She is just having 74 units of Lantus after her feed restarts at lunchtime.

We are still waiting for a bed at Holy Cross. I called Putney yesterday to arrange a visit there but couldn't speak to anyone about visiting so I'll try again today.

Helen has been given her ESA. I got a credit in the nominated account this morning so hopefully there should be a letter informing me about it. I couldn't believe how quick it was!! I got a text from DLA saying they had received the application and it would take up to 8 weeks to make a decision. I've got to set up another account to pay the money into so it is totally separate to mine.

Now I've just got to think what to buy Helen for Christmas and her birthday!! There's a limit to the number of nighties she can have.

December 6 2012

Well, we really liked Holy Cross. It is a bit out of the way and took ages to find but it's in a really nice position.

The staff were lovely, the residents who were able to speak said hello and talked with us. There was a guy in the hydro pool when we got there and it looks fab. My youngest grandson made himself at home and pinched some cake from the nurses (aided by his great grandfather!!). Everyone looked as if they were happy there. They were rehearsing an x factor show performed by staff and residents. There is the Holy Cross Bake Off later in the week. There was a stroke club going on in the activity room - apparently it's a regular weekly event for outside people to come in. The activity room is great, the sensory room is small but good. They are planning on building a bigger one in the near future.

I will admit that I was worried about Helen being so young and in a facility with much older people. However, there is a youngish man in there and most of the staff are youngish. The therapist we were with today said that if Helen was to become more aware and showed distress about being in that place then we could look for somewhere else for her. And if by some miracle somewhere was looking specifically for teenage girls, then she could move on with no problem.

Funding hasn't yet been approved by our PCT. I thought that it had but Holy Cross have only just sent off their costings. It is unlikely, but not impossible, that Helen will move this side of Christmas or even before the new year because of the length of time the PCT will take. There still isn't a bed for her but she is top of the waiting list. There is a man ready for discharge but hasn't got a flat to go to yet. And there are several poorly patients as well. In many ways it will be easier for us if she is still in Basingstoke because of the different bits of the family wanting to visit and certain members not wanting to be anywhere near others. And it's her birthday on Christmas Day. However, they did say that we could have Christmas dinner at Holy Cross if we wanted.