Today was Joe’s birthday. This year it was going to be a little different, no party at ours as Jude wouldn’t be able to participate. We decided a family meal then birthday cake on the ward.
Jude was moved today from intensive care to hdu, he has mostly behaved only having handful of episodes today. After tea we went back to see Jude(aunty su stayed with him while we went out) anyway the nurses helped us sing happy birthday to joe with imaginary lit candles (the candles were there we just didn’t want to set off the fire alarms). Joe blew out his pretend lit candles and thought it was fun, so much so he said he thought it was the best bit. When we were walking back to the lift Nath commented on the fact that this year’s birthday had been different, Joe replied “yes but it’s been really fun”. (photo’s to follow)
I really love my boys, all four of them 🙂
I left Jude sleeping in Intensive Care last night and made my bed in Ward 9 upstairs wondering what the night would bring. I woke up at 7am so assumed it had been fairly straightforward on ICU.
And it had.
Yes, a few little unhappy moments but nothing significant although they had knocked him out in the early hours.
I take my place by the side of his bed in ICU and wait.
At about 10.30 there are the first signs of consciousness from the little man. Not much and we leave him alone for fear of the consequences. Over the nxt hour he roused some more and I started to clean his mouth with water on a sponge and he’s lapping it up literally. By about 11.30 he is properly awake…..and he’s different. Where last night it was just pain, it seemed to have gone and Jude is back with us again.
They did have to try and reinsert the naso gastric tube again and that didn’t go down well – another breathing episode – but left alone he was fine.
Fingers crossed he has turned the corner and we can start to look forward again.
Yesterday was planned to be an enjoyable family day out at the Safari Park – organised by Acorns Children’s Hospice, however, following Jude’s second surgery it was obvious he wouldn’t be able to come with us, still being in Intensive Care and all that… We took the decision to take the boys, who were thrilled we were both able to take them. We had an amazing time ( I have some great pictures but haven’t been able to transfer them as yet). Nanny Trish stayed with Jude for the day and my parents and sister also visited.
Jude was moved from ITU at lunch time back onto the ward and was a very good little boy all afternoon, sleeping mostly …….. that is until I got back. He decided to stop breathing and all the tried and trusted tricks just didn’t work. And yes, the crash team were called. They were a little concerned that he wasn’t responding as well as he should so they took the decision to move hime back to Intensive Care, luckily the didn’t feel the need to ventilate (this was mentioned a couple of times whilst they were attending the crash call for Jude on the ward).
After we went down to ITU we were asked to wait. Those minutes in the entrance area to Intensive Care seemed like hours, but luckily the nurse came up and he told us we were able to come and see Jude. I’ve spoken with Ian this morning and he said Jude’s had a couple of goes in the night, but not big ones.
So today I don’t have much planned….. Yeh right, a party with a present needed (not yet bought) Joe’s birthday tomorrow, and tudor axeman’s mask to make and a kit for the Pioneer Centre to be packed and checked. Happy Days. I don’t care really ’cause the important thing is Jude is stable 🙂
I hate these days. The pain days. I know they don’t last, but who wants to see their kids in that sort of discomfort….particularly when it was your choice to put them there?
Misbehaving 🙂 they’ve decided to call it. Not long after coming around from the anaesthetic he was holding his breath. Pain, nothing more. From red to blue and back again in a couple of minutes.
They are looking after him in ITU today, tonight and for as long as.
Just wishing the days away.
Jude is going into hospital to have his tube ‘fixed’. Good for Jude but couldn’t come at a worse time for the family. We have a family day out on Saturday at the Safari Park which is organised by Acorns Children’s Hospice for children and their sibling carers and we were meant to be going to a Special Needs Playground on Sunday for another family day out on Sunday and on Monday it is Joe’s birthday.
It’s going to be a hectic few days.
This morning, while I was explaining to Rachel that I would be living on the fact that she hadn’t got me a present for our wedding anniversary for a good many years, Jude laughed. His first ever laugh. Me and Rachel looked at each other and laughed (then cried and laughed).
He was in great spirits but very difficult to pin down with a photograph until we got this.
Despite the fact that the last couple of weeks have been ‘interesting’ and he has got this now redundant tube sticking out of his stomach (nobody knows where it goes the other side) Jude is probably the best he has ever been. The seizures have reduced to a number we could probably count if we were that way inclined and he has more interest in his hands than ever before and he laughs.
Jude has a slow overnight feed through his nasogastric tube, then at 8am his first lot of drugs. Then another nasogastric feed about 9.30 – 10. Then some more drugs. Then at 12, some more drugs. Sometime when the time is available he has his laxatives. 1ish, another feed and at 4.00 some more drugs. Another feed around 6.00, more drugs at 8pm before we start to think about his overnight feed again. All of that and he is laughing.
I don’t know how he has the time.
I received a call today, it was from a secretary to say she had a prescription for the two drugs we’ve been trying to get. I was at the time at sports day, I nearly jumped in the air with excitement and just kept saying thank you to her.
Later I received a call from the pharmacy department at our hospital to say that these would take around a week and querying the one drug being in tablet not liquid form. Needless to say my earlier excitement dissapeared and now I’m not sure when we’ll get these drugs, if they’ll be in the right form and if I’ll run out of drugs before this new batch are ready.
This coupled with me receiving my monthly stock order of tubes and bottles etc. finding out three new sizes of syringes I’d pretty much pleaded for had been delivered, but I’d only been given 4 of each size. At that point I decided that I couldn’t take any more and closed the book on it for today. I’ll start again afresh on it tomorrow.
Talking of tomorrow, it’s Ian and mine’s 13th wedding anniversary, and as I didn’t get a chance to sort anything out with everything that is going on so ……..
HAPPY WEDDING ANNIVERSARY IAN, all my love, Fahy xxxxxxxx