October 29 2012

We have had a visit from Glenside rehabilitation centre. The visit went fine. She may be moving within 2 weeks !!! Obviously this depends on what the consultants say about her trachy. They can take her with the trachy but if she is ready for it to come out there is no point in moving her with it, just for it to be taken out practically as soon as she gets there. It also depends on how quickly the funding is agreed and what level it is needed. We are arranging a visit to Glenside to see it, hopefully in the next week.

She was also visited by the diabetes consultant this morning because her sugars are still all over the place, despite having a PEG rather than NG. They have upped her Lantus from 30 to to 40 units each night. They were also talking about possibly going to sub cut insulin but will wait and see what the increase in Lantus does.

The physio's have said that there are tiny, weeny signs that she is aware of some things. She has been fitted with the resting splints now so maybe her hands won't be so curled up.

October 23 2012

I am a second year adult nursing student (very mature student).  I am on placement with a community nursing team now and one of the nurses I am being mentored by worked on a neuro ICU so she had some encouraging stories. It's sometimes difficult with a bit of medical knowledge. Most of the time I am Helen's mum but a little bit of the time I do revert to being the interested student. I let the staff know that I am a nursing student eventually because then most of them know that maybe I understand what is being said between themselves, or is written on charts, etc.  Sometimes they think the relatives don't know anything.  

Helen had a rough night last night, coughing and being suctioned many times. The nurse today said that she has coughed up a large mucus plug which potentially could have blocked her trachy!!! She had a battery of tests today - blood, urine, stool and sputum. She also discovered that she was dehydrated because of the constant diarrhoea. That may be part of the reason for her high heart rate yesterday. She has been pumped with a couple of litres of fluid now and her heart rate has dropped

She is being seen by the stroke specialist on Thursday. Apparently this is because the main man is on holiday and she needs to be reviewed. The process has been started to "discharge" her but obviously this will take weeks if not months because the funding is going cross-county. We live in one PCT, Helen is in hospital in another and wherever she goes for rehab will be a third. They have got to fight amongst themselves about money.

She has got splints on her feet/legs now and they are waiting for hand/wrist splints to come.

I have asked the hospital for a letter saying that she is in HDU and incapacitated. Apparently they get that quite often so they are happy to do this. I can start to work on finances (well mine anyway) next week.

October 22 2012

She still has a pseudomonas infection in her chest which is being treated with antibiotics. Her cough isn't as strong today and she has had to be suctioned a lot. Her secretions are really thick and she is having difficulty coughing it out most of the time.. Her bowels are behaving badly!!! Her temperature is 38+ and she is sweating so much!! She doesn't look as good today as she did yesterday. On the plus side, she is wearing some of her own clothes - well a t-shirt cut down the back so it looks normal. She can't really wear any trousers or pants because of the catheter and Flexiseal. She is having a PEG fitted soon so her face will look different without the NG tube.

I still haven't contacted any benefits people, either for me or for Helen. Maybe next week when I have finished this placement.

October 21 2012

Latest is that Helen is on HDU in Basingstoke now. She is off ventilation but still has a trachy. She is still unresponsive apart from moving an eye. She does nothing to command. They are talking of moving her sometime in the future either to Salisbury, Bath or Putney. For us, Salisbury would be the best place to get to. But it depends on where she gets funded for, where there is space and where will be best for her. I don't know when her skull is going to be replaced. I have to confess that we do have a bit of a joke about that fact that she is in Basingstoke and her skull is in Oxford. It's a way of dealing with it.

I went into Vodafone yesterday to sort out her mobile phone contract. Even if she does recover sufficiently to use it, it won't be for a long time. They were great in store, not so good on the phone. The cancellation charge was going to be nearly £500!!! They have promised me that it will be sorted out soon and cancelled, hopefully with no charge.

I have got to sort out my finances very soon. Helen was still my dependent because she was in education still but obviously she isn't now. I have got to phone Tax Credits & housing benefit to tell them about her accident. There are so many different things to think about, things you don't think about until something like this happens.  In a way I am so pleased that she is my daughter, not my wife or husband and because she is young she doesn't have many financial commitments or responsibilities.  She has no-one relying on her for finances.

October 12 2012

She came off all painkillers, just having paracetamol and antibiotics for the infection. Her heart rate is still raised, her blood pressure is elevated and her respiration rate is higher than normal. She is initiating breathing herself with support from the ventilator on BiPAP (Bi-phase Positive Airway Pressure). She is moving her hands/arms randomly and her legs when her feet are tickled. Her left eye opens when she is awake but her right eye remains closed. She isn't doing anything to request/command (but we joke that she is a teenager and what does anyone expect!!). She does respond to pain. She was seen by physio's every day and they have had her out "sitting" in a chair. She did have another CT and a chest x-ray. Her ankle isn't broken.

Today she moved to Basingstoke ICU today as it is closer to our home. It means that my dad can't go into see her as often. He was going in every morning and again in the afternoon to see her.

I want to speak to the hospital tomorrow about what sort of stimulation/rehab/whatever she will get. I don't know what happens. I have asked Headway to send me information on sort of what happens next.

I am worried and scared for the future. All I know is that Helen needs all the help and support she can get.

In the beginning

In the beginning there was ....... HELL

My daughter (18) had a RTA at 0230 on 27th September 2012.  We don't know the circumstances surrounding it other than she was driving and there was no other car involved. Her friend who was with her raised the alarm and paramedics, the BASIC doctor, police and fire were called. I was woken at 0400 with a phone call because they had been round to the house where her car is registered but couldn't get any response.  They had my details from a previous incident she was involved in.

The BASIC doctor who was at the scene is actually our family GP and she could not have been in better hands. She was breathing herself initially but was unconscious. She was sedated and ventilated at the scene for transfer to hospital. The friend who was with her had managed to go for help and found a couple of Thames Water workers nearby.  They helped the girls and probably saved Helen's life. They have since received recognition from their employer for their bravery.  Helen's had several fractures in her spine (which had to be pinned) and a broken wrist/thumb (which has been fixed back together).

After the phone call from police, I tried myself to contact her father.  I rang him several times and even went round and banged on the door.  No reply.  I drove to John Radcliffe to A&E by myself in a state of panic.  I saw her before they transferred her up to Neuro ICU. She was covered in mud and tarmac.  Her clothes had been cut off.  She had blood all over her face and arms.  That is not an image that will ever leave my mind.

She has a severe diffuse axonal brain injury (more on her right side where the base of her skull was fractured). She had a fracture to her pelvis, suspected fractures in her ankle and arm and contusions in her lungs. Her right pupil was dilated and her left one was slightly dilated but sluggishly responsive. None of these additional injuries were/are life-threatening. 

The next time I saw her was in Neuro ICU.  She was a mess.  She had tubes coming out of every orifice.  She has an arterial line in her wrist to measure her blood pressure.  She has an inter-cranial pressure (ICP) monitor to measure the pressure inside her skull.  Inter-carnial pressure, which initially read between 15-20mmHg  reached over 50mmHg. They did all they could medically and the only thing they could do was go the surgical route. 

At 1130pm it was decided that they had to perform a decompressive craniotomy and removed the whole of the top part of her skull. I didn't know whether she would live or die, I was a mess!!  You can never imagine how you will feel when you are told your child might not make it through an emergency operation like this.


Bifrontal Craniotomy

She pulled through the operation and kept under sedation for 5 days. They reduced the "deep sedation drugs" and just kept her on propofol (the general anaesthetic drug). When they took her off the propofol she kept spiking a temperature, her blood pressure went through the roof and her heart rate was about 160bpm!! She was treated for an infection, possibly in the central nervous system. Her left eye opened a tiny bit but there was no movement. She was supposed to have another CT scan but they decided not to do it because she made a few random movements.

This week she had a tracheostomy and a NG tube inserted.

She came off all sedation and is mostly breathing on her own, with some support and oxygen from the ventilator. She was on Fentanyl and will be changing to Morphine tonight. The painkillers have had some success in keeping her blood pressure and heart rate down. She is showing some signs of opening her left eye and making some uncoordinated movements with it. Her hands clench and her arms move upwards. Her legs have twitched a few times. She is yawning and coughs when she is suctioned.  Most of the movements are either reflex actions or abnormal movements.

I don’t know how it will end. She was such a bright, gregarious girl who loved nothing more than socialising with her friends (read that as going out, having a drink and clubbing).  Life will never be the same for anyone, anyone who knows her.  A lot of people will be touched by this.