A quick update

Things are not going too good at the moment.

Last Friday afternoon when I was feeding Philip he had some type of weird seizure (naturally he can't have any "normal" ones) and his face especially his mouth spasmed and clenched tight. After about 5 minutes he turned his head to the right and 'left' for about 10 more minutes. Then his eyes started to twitch uncontrollably. I had called one of thew RNs and he in turn called more. They held his hand and asked if he could hear then and were able to get him to respond by squeezing his hand which was strange for a seizure. This means all the pain and agony he is actually feeling unlike a normal seizure where the person switches off.

Anyway after about 20mins he came back to normal. Later that night he had another so they decided to increase his seizure meds.

Yesterday he had 12 that I know of - at times he would forget to breathe and then take a big gasp. He was in terrific pain and when he came out of it had to have a 'breakthrough' (an extra 7.5mg morphine).

Today was more of the same. If even had them while he was sleeping. It was so awful to see and so painful.

When I arrived this morning to see him he grabbed my arm and tried to get me to strangle him , crying all the time and pleading with me, even though he couldn't speak words, his grunts told me what he wanted to say. I told him I couldn't kill him and he cried louder and got angry at me pleading with more tears. It was the most horrendous thing but it really summed up what is happening to him.

I just pray that he will forget to start breathing again when he has a seizure - I hope he can't go on much longer like this but his body is so strong that he could last for months and months or even years!

I have been so strong and haven't cried or broken down but it is so close to the surface. I know if I start I may never stop so I am trying hard to be brave and put on the strong face.

His mum, sister and brother in law came today and she (his mum) was devastated to see him like that. She has always prayed for a miracle and would not accept that he would die early but after today she said she wants him to go as soon as possible and so do we all.

Update on Philip

He has had at least 12 'mini stroke' things that have resolved themselves after an hour or so but on Weds morning he had another which didn't resolve so he has been paralysed down the right side since. Speech very difficult to understand.

The Drs are unsure as to what is happening - they have thought they may be atypical seizures, TIAs, thalamic pain, etc but nothing seems to fit. He had a CT done on Tuesday but has shown no change since the last one.

Drs think that maybe something is going on deep inside the brain. At this point there is no idea on prognosis. They are taking each day as it comes, don't know if he will come home or not.

He is in a lot of pain and on morphine (30mg), maxalon & haleperidon that is dispensed automatically as a permanent pump, but the pain in his head is just as bad. He has had to have breakthroughs (extra morphine) on a regular basis to try and ease it.

Today I don't think his speech was a good - he is saying 2 1 & 1 2 all the time and I am supposed to understand what that means. I guess to him he is speaking sentences but to me it is just the same numbers over and over. Yesterday he would say a few other words.

today he also slept most of the day. I think he was only awake for about 1 1/2 hours during the 8 hours I was there. He ate a little of his lunch but didn't eat much (which in itself shows he is not well).

It is just so hard not knowing what is happening. His mum rings a few times a day and wants to know when he will be coming home and I tell her that he may not. People want to know if this is the end but as the Drs and I discussed he could rally again like last June.

The Drs have increased the dex again back up to 8mg - if this is caused by any swelling (like last time) then the dex will help. They told me that they will assess it next Tuesday or Wednesday because the dex will have taken effect if it is swelling and we should see some improvement.

Honestly - I wish it was all over. He is lying there in such pain and unable to do anything, I am feeding him because he can coordinate his left hand and he is continually dribbling. He is back in nappies although he does use a bottle (I set it up for him). I don't know if I am being selfish wanting him to go but we have fought this for such a long time and everyday he us losing more and more. It just doesn't seem fair!

Back in hospital

Philip is back in the palliative care unit - he is having similar episodes to last June but these resolve themselves fully after an hour or so.

Has had 4 so far. will update at a later time.