March & April

Hi everybody,

I’m sure those of you who check the blog and the few that leave messages, except for Cousin Carol who is an absolute star in all aspects of messages, cards and support, are waiting for the update – I am doing it! I attach below are the events from March, April and May will follow shortly.


*****A quick news bulletin*****

Dennis’s niece Claire, and her colleagues from work, have decided to climb the ‘Three Peaks’ next weekend 20th - 21st June to raise money, through Aspire, the spinal injury charity, for Dennis. We are so touched by people’s kindness and support and would ask you to visit this page and donate to this group of young peoples endeavors in this challenge. Thank you all so much.

www.justgiving.com/tetrapakthreepeaks



If you all could see the pleasure on Dennis’s face when I read him your blog messages, or his cards, I am sure you would all send him cards every day! He gets so touched by your words of support and encouragement it is better than any medicine that could be administered (and without all the rotten side effects, only good ones!) Please keep them coming.

I will try and summaries the events of the last three months. I want to keep this record as a sort of ‘diary’ for Dennis so he can see exactly what he has been through. Apologies again for the late posting. I think time is taking its toll on me and my energy is dwindling.

March 2009 – As I explained last month, Dennis’s health had deteriorated and it became necessary for him to have a Hickman Line inserted into his chest in theatre to take the necessary drugs which unfortunately, due to the lack of ‘flushing’ became blocked. Any ‘foreign object’ in the body is an opening for infection and after a week, an oncologist came with some special medication to try and unblock it. Unfortunately it did not work, so it was removed. Dennis also had a nasal gastric feed tube for fluid and feed due to his dehydration and loss of weight. Unfortunately, although I could always get Dennis to take his pills, when not there staff would crush the pills and administer them through the tube, Some medication has quite a resilient coating on it and this does not crush very well, hence the tube would block. I don’t know if any of you have ever had one of these inserted, but it’s not very pleasant, especially when a replacement could have been avoided. Dennis’s weight gain still fluctuated on the overnight feed and with us encouraging him to eat during the day. His weight is currently 10.5. The dietician is looking for him to be between 11 and 12 stone.
Dennis has just been given his forth physiologist, this time a man. None of the others seem to make any progress. Why would anybody open up their feeling to someone that keeps changing and you have to go over the same ground? Especially Dennis who likes something to be actioned first time he says it! Also, Dennis wanted me to sit in on a couple of sessions, often to interpret something he is saying as it is not always that easy to understand him, and Dennis just seems to be opening up his feelings and they move onto another subject, they don’t seem to grasp when he is just starting to unload his feelings, Oh well, hopefully one of them will get to grips with the situation and the way we are going it will probably be Dennis first. I have regular ‘chats’ with the Family Councillor, it is good to ‘unload’ as what is the point in falling apart, yes, of course I feel down at times but where is that going to get us? I have to keep going to get Dennis home, as I say ‘If Dennis is OK, then I am OK’.

To enable us to build the necessary extension on our home, I have had to find additional money. This is easier said than done in this economic climate but hopefully there will be some secured Charity funding available soon.
The hospital is undergoing some development work and part of the outbuildings for the physiotherapy department are being demolished to make way for residential properties. In aid of Red Nose Day, the physiotherapists dressed up and pushed an engineless car from one end of the hospital into a central open area. This is how patients learn the art of transferring from a wheelchair into a car seat. I’m not sure how much they raised but it was a fun day (unfortunately hospital patients never have much money on them!)

Again Dennis’s NG tube blocked (through medication – very annoying) and he also got another chest infection. It is so frustrating when we keep going round in circles and never seem to be able to get out of the loop. We also found out that four patients on the ward had contracted MRAB, another strain of MRSA and these patients needed barrier nursing. One of them had been in Dennis’s four bedded bay, no thanks, we don’t want Dennis contracting that thank you very much! In came a team of men to ‘Deep clean’ and what I found amazing was they started cleaning , rails walls, equipment etc with disinfectants with the patients still in their beds, so being covered with any germs and cleaning products. I requested Dennis was removed from the ward while it was being cleaned. Not unreasonable I don’t think but I was made to feel I was causing a right fuss.

The consultant and the respiratory technician are keen for Dennis to have the tracheotomy out but Dennis is still a little apprehensive of being able to clear all chest secretions without it. There is something called a cough assist machine that blows air into the lungs to expand them and then sucks it out! It is likely he will need one of these when he comes home (only costs eight thousand pounds, hopefully it will be funded by the health authority.) To assist with this process, Dennis has been fitted with a Silver Negus Tracheotomy which costs £600 and is hand made (the original type before plastic was invented) So now Dennis has a bit of ‘bling’
Blood pressure is still a problem with readings of 58/38, 68/48, 87/55 on three consecutive days when he is up in his wheelchair, even with the back tilted and his legs up. This drop really makes him feel drained and although the cardiologists visit once a week we do not seem to be making much headway. Dennis has been experiencing these problems since last October when he first started getting up. They are doing additional monitoring on a ‘tilt’ table that gradually rises him degrees and his BP is monitored. Yes we know it drops when he raises up but what is happening about it? Dennis also uses an electric leg bike which is good exercise for the leg muscles, circulation and the heart, I keep asking him how far he is to Brighton!

Dennis is still waiting for the Drs to explain his injury, diagnosis and prognosis. In St George’s Hospital we had daily updates and explanation. Here we have had nothing, it just seems too much both to explain the situation, but you know us, we always ask ‘what’ ‘why’ and ‘how’. Helen often says that she is sure Dennis would not be here today if we had not had the excellent care and attention he received at St George’s Tooting for which we are eternally grateful.

More to follow….!