November 30 2012

Apparently it's fine for her heart rate to be between 90 and 150!!! I specifically asked about it and she said it was fine for it to be so high "because its been like that since she came in"! If nothing is done about it soon I will be asking again. It cannot continue.

I also asked about having copies of letters to her doctor and I was advised to visit PALS. I can make a request to the medical records office but they suggested that I just ask her doctor (who is also my doctor and the doctor who helped her at the accident). I may need these letters for ESA and/or DLA.

I also need to think about applying to the Court of Protection. I went into her bank yesterday. A lady last week said that I could get added as a third party on her account without any problem. Another man yesterday said no way, as did the manager. I can see why not but ....... it's a pain.

The Job Centre have been really helpful. They did all the forms with me over the phone for ESA. They have sent the copies to me and I've got to provide my birth certificate and student income details.  I have got the forms for DLA but haven't filled them in yet. I don't know where best to go to get help with it - whether to go to CAB or someone else (maybe Headway).

One annoying thing with the bank is that Helen owes her little sister a lot of money - most of which is sitting in her bank account!!! At least she paid for her car insurance up front and I have cancelled her mobile phone. Note to self - I must chase her car insurance up - the car should have been released to them by the police.

I had rather an emotional time in one of my lectures today. The lecture was about social support for patients in acute care. There were a couple of slides about traumatic brain injury and its impact on loved ones. I have been fine with all the other lectures on acute care (including some to do with brain injury) but this one just got to me. My tutor group are great and made sure I was ok but I'm sure people sitting around us were a bit confuzzled about what was going on (there are about 400 people in the lecture hall!!).

November 29 2012

Another chest infection Pseudomonas again. She has been proper miserable the last couple of days. Not much reaction from her at all. As long as she has the trachy and is on humidified air she will keep getting them. Back to more suctioning and antibiotics for 5 days.

The infection has thrown her blood sugars out and they are running high again. The diabetes team had just about got to the point of taking her off the sliding scale and just having Lantus once a day. This won't happen for a little while now.

She has had a heart scan because her heart rate is high still. Everything appears to be fine, according to the radiologist. The doctor said that they wouldn't consider putting her on any medication to slow it unless her heart showed any signs of abnormal rhythm. I would have thought it would be better for her not to get into that position.

She has got a neck brace now to try to keep her head more central and supported. She didn't look happy when she was fitted with it!! They brought one sort and it was really hard so another was found and it is much better.

The physios have given instructions to nursing staff.  These include keeping her head in neutral position (she has a tendency to pull it to the right); keep splints on and off two hourly; keep towels in hands to stop nails digging in and keep the blood pressure cuff off.

November 24 2012

Got the news today that funding from the PCT for Holy Cross has been approved. And that Holy Cross have definitely accepted her, when they get a room. However, the physio's at the hospital have got to contact the wheelchair services at our PCT to assess because they are a different PCT and they cannot do it. The joys of working cross-county!!

She has been seen by orthotics today and been measured for new splints and a neck brace/collar.

She had a proper pampering session today. Her cousin came up from Portsmouth. She and Helen's best friend did her finger and toe nails. They were only allowed to do clear varnish on fingers but the toes are multi coloured and glittery!! I think the nurses were quite jealous.

Helen has had her flexi sig and that showed nothing abnormal. She has got to have a faecal elastase test (?). Something to do with her pancreas function.

November 23 2012

Well, Helen's meeting from Holy Cross went well. A physio and and OT visited. They looked at all her notes and then examined her. The physio was quite surprised, after feeling the contracture in her right arm, that her legs were very flexible and straight and her left arm was not too contracted. The hospital have already increased her Baclofen and the physio have recommended that Helen has Botox now, rather than waiting. She has got to be fitted for a new set of hand splints because of the swelling in her hands. They also talked about putting her hands in plaster cast but don't want to do that if they can avoid it.

The Holy Cross have asked for a wheelchair to be ordered for her, sooner rather than later. They want her to be in a position to be mobile as soon as possible. She will be participating in all sorts when she gets there!!

The isn't a room available at Holy Cross but this could change at any time, with not much notice.

Her father seems a little bit happier about her going there. He thought that she would just vegetate in a room with loads of old people!! There will be a lot of older people there but we also have to make sure that she gets plenty of visits from her friends and us.

I just want her to move on with her treatment. The staff have given the hospital staff a few more ideas to help Helen. She has got up to 4 hours of free tv a day from the tv providers; she has a DVD/tv to watch and I have taken a few new dvds in for her. I have been playing music off my iPad for her and showing her photos. She seems a bit more alert.

When I went in to see her this morning, she was really sweaty. It was running off her. They had to change her catheter because it was blocked. Sample sent off. Another potential UTI!! After the change, her temperature settled down and the sweating stopped. We are now wondering if this might be her indicator of pain or discomfort.

I asked about her high heart rate. It is about 85/90 when she's asleep and 125/150 when she's awake. Her blood pressure is fine, her fluid balance is ok and her temperature is ok. Luckily she is young and her heart can cope with it at the moment. It might be that control centre has been damaged. It might resolve, it might not.

Anyway - that was a bit of an essay but quite a bit has gone on in the last week.

November 17 2012

Hello, I've been rather busy this week. Back at uni and visiting Helen. So busy, busy.

No real changes in Helen. She is still in Basingstoke, waiting for an assessment visit from Holy Cross. They are visiting her on 22/11. I have also emailed Putney but got no reply yet. I will have to give them a ring early next week. My ex is saying that she is just "being dumped somewhere"!! So I want to reassure him that she isn't, tell him to stop being such a twat and also explore the other places available.

I've been to the doctor and got anti depressants. He said he was surprised I hadn't been before, considering all the other things going on as well. Lets see how they go.

Helen is suffering with bad oedema in her hands at the moment. They have told me its because they aren't mobile. The oedema is only in her hands, nowhere else. She hasn't been able to have her resting splints on as much because of the swelling. I asked one of the nurses to have it reviewed on Tuesday, again on Wednesday and Thursday and finally I got through to them on Friday that I really wanted an answer. The junior doctor said that the reason for it was the lack of mobility. I'm still not convinced so I'll ask again next week if they haven't improved.

She is back to dribbling again!! She still has the hyocine patch to clear secretions. She has had her trachy changed from a size 7 to 6, because she still needs to have a cuff in place. She has had her feet done - she had really hard dry skin and for a diabetic that isn't good!! One of the HCA's has done the podiatry course and they look lovely now. It's amazing how disgusting the skin gets without doing anything!!

She is having her Lantus being played around with. They have double the amount she is having. She has had an abdomen X-ray this week but is still waiting for a flexi sig. She has had the Baclofen increased and her right arm seems to be less rigid than previously. It is still contracted but moves more easily.

I drove past an accident the other day, on the other side of the road, in the dark. The car was in the verge with ambulances and police all around. I drove the rest of my journey with tears running down my face. All I could think of was it being Helen's car and her. It was horrible.

November 11 2012

I had assumed that you couldn't have hydro with a trachy. I would have thought it would be an infection risk. That's great if she can because she loves water. It would also be great for her to have a bath/shower rather than just the bed baths she has been having.

I have been to see Helen this evening (I wasn't going to but got the opportunity so grabbed it). The HDU and ICU work on a 2 month rotation apparently and it is rotation change tomorrow so we have got a different set of nurses coming to look after Helen. She may have seen a couple of them when she was on ICU. The outgoing nurses have made a list of things that need to be done with Helen, not just medical things. Like putting her MP3 player on, putting hand cream on her hands and feet, letting them know that she is wearing her own night shirts, cut down the back and they are washed by me and that she needs to be turned towards the left because her head will always move back to the right!! They really have made her an individual. They have said that she can have a digital photo frame showing some of her friends and family. We can also have earrings back in but not her belly bar. We have got to bring her gossip and news from home as well!!

I am back in uni and I am rather tired, over emotional and stressed at the moment. It would be a real shame if there are no rooms at Holy Cross yet.

I have got an appointment with my doctor on Wednesday because I am having trouble sleeping and also dealing with everything that's going on. I think I am coming across as uncaring quite often because I am able to talk so unemotionally about what's going on. And that's the last thing I am!!

November 10 2012

We haven't been to look at Holy Cross yet. We were only told on Tuesday that she wouldn't be going to Glenside. Anywhere that has been suggested is too far for us really for daily visits. But their visiting times are much more flexible. It is closer to us than Putney or Bath but still 45 miles away (Salisbury was 40). Another advantage is that she can stay there long term, if necessary. Their report seems really hopeful. Her father was saying that the website doesn't look as impressive so maybe it's not so good but I said that Glenside is a business, whereas Holy Cross is a charitable trust.

We have been told that they will assess Helen and invite us down to visit them.

It's good to know that someone has moved there and loves it!!

They do have a hydrotherapy pool and physiotherapy on site by the looks of it. Helen won't be able to do any hydro to begin with because of her trachy but eventually she will.

Putney and Bath were almost discounted because Helen will need long term care and it was thought to be more beneficial for her, and us, to be in one place rather than keep moving on.

It will be odd to move on from hospital because we have got to know staff there but it will be another chapter in the story and hopefully she will get more input from physios there. They have been great in hospital but they have a lot of patients to look after. She will also have her own room, which may or may not be a good thing. At least on HDU there is always someone around to come and talk to her - the HCA's are fab and are constantly talking to her and stroking her!! I think they like having someone younger to look after.

November 9 2012

Small changes are happening. She is slightly more awake now and moving her eyes towards people making large movements and shadows. She is looking towards a bunch of balloons that her boyfriend bought for her for the end of her bed. She is still not doing anything to command.

There is now a set of daily activities that Helen has to do such as ensuring that her hands and feet are massaged every day, listening to music, watching a DVD, stretching her arms and hands, making fist shapes with her hands, having different tastes such as orange juice during mouth care and touching her own face and lips with her hands. She has a list pinned up and when someone does it, they sign.

She has had her PEG fitted now. Everything went well and she is being feed through it and having her meds. Her bowels aren't any better yet!! She is being reviewed by the gastro-enterology team to see if there is something they have missed, some other underlying condition or whether it is just the feed causing it. If it is just the feed, then they can increase her dose of loperamide. 

Her right arm is very stiff and they are talking about the possibility of her having a Botox injection in it. Her diabetes is slightly more under control but her blood sugars are still up and down. They have tweaked her sliding scale yet again . And also her feeding regime. She was vomiting every time the physios got her up so she is off the feed for 4 hours in the morning rather than overnight. She has had a PICC put in her arm because it was becoming increasingly difficult to cannulate her.

She is not going to Glenside now because they failed their last CQC inspection so our local PCT won't fund that facility. She is now going to Holy Cross in Surrey. She has to be assessed again! So once again we are waiting in limbo until they contact us to visit.

November 6 2012

I had a meeting with Dr. Duffy, one of the neuro team.  It was not a meeting that I really wanted to have but need to, to ensure that everyone is on the same wavelength.

From her CT scans is shows that there were no spared cortexes in her brain, all of them have been damaged.  H is unlikely to ever be able to communicate and unlikely ever to be able to walk.  But he did say that nothing is 100% certain.

We discussed the "purple form", the Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR). This is always a very emotive subject.  No-one wants to feel that their loved one is "being given up on" or that they will not be treated if they have a cardiac arrest.  No-one wants to have to make the decision that their loved one is being "sentenced to death".  No-one wants to be the one to turn off life support.  The reality of a DNACPR is that the medical team makes the decision.  They try to involve family as much as possible but ultimately it is their decision whether or not CPR is attempted if a cardiac arrest occurs. DNACPR does not preclude other forms of treatment, such as antibiotics, fluids, nutrition, etc.  It is purely that CPR or defibrillation will not be done.  The likely quality of life for the person after a cardiac arrest is taken into account as are the wishes of the person (where possible).  In a young fit person, such as Helen, a cardiac event is rare and unlikely and therefore there will be little that can be done to treat the cause.  On the other hand, a respiratory event could be actively treated.  However a person with a TBI could be in and out of an ICU until the time comes to take the decision just to treat in the residential facility to avoid the "revolving door" admissions.  This would be the most likely outcome for Helen, that she has a respiratory infection that ultimately she cannot get better from.

We also discussed transplant, whether she (or we) would be willing to donate organs.  My opinion is that transplantation should always be done whenever possible.  Helen had a donor card.

I was exhausted after this meeting!!