When the smooth ride hits a bump…

T+191

So just when I allowed our family some breathing space, just when I figured we were getting to a place, 6 months post transplant, where we could relax just a little, things changed. I should know how this goes by now!

On Wednesday Herb woke up early and behaved the same as every morning. He didn’t eat much breakfast but seemed fine. He began to complain of a headache and said he felt sick. I gave him some calpol after checking first that he didn’t have a fever, he didn’t. He was sick but said afterwards that he felt good. He spent the day on the sofa playing games as usual on his ipad but we decided not to go to The Hub as he wasn’t quite right.
By 5pm it became apparent that he was definitely under the weather. After many battles with many thermometers, the Braun ear thermometer, a forehead scanner and the GOS faithful tempadot , all of which gave varying temperatures from 36.5 (normal) to 39.4 (definitely NOT normal), we called the JR switchboard with a heavy heart knowing that we were off to hospital for a minimum of 48 hours. Everyone was very sad.

It took some sorting out on the part of one of our lovely community nurses , Laura, to get Herb admitted. First of all he still needs a cubicle, not easy during November. We feared we may get sent to the Horton where he’s not known but thankfully a cubicle on Bellhouse Drayson was found, number 25. I know I should be thankful but cubicle 25 is where Herbie spent his 5th birthday and I dread being there!

Herbie was sick a few times before we set off to the hospital and when we arrived in the car park ( but that was possibly due to Dan’s inability to decide on a parking space!)
He walked into room 25, lay on the bed and just got hotter. Rebecca , the nurse who looked after him on his 5th birthday, looked after him until handover. She asked if we would prefer another free cubicle, number 16, she understood!

Cultures were taken and Pip/TAZ started , iv fluids put up and calpol administered. Dan left to return to the other three children and I settled down for the night. Dr Mannesh reassured me by saying he thought it was likely to be viral and that he didn’t look as bad as he had on previous admissions.

Thursday arrived but sadly no improvement. He felt sick much of the day and complained that his head hurt. He slept, was sick a few times and didn’t eat or drink. The iv fluids stayed up. Victoria (his outreach teacher) came to play a game with him and he brightened on her arrival.

I spent a lot of time thinking during Thursday and Friday. It was all a bit too much like déjà vu. This time last year we were in and out of the JR as Christmas started popping up all around us. I didn’t want to be here again. I had promised all of my children and Dan, a different December , a happier, non hospitalised one.
Friday I had hoped would be the day we were discharged but it was clear from early on that this would not happen. I noticed that odd blotches were appearing over his body, they were not raised or spot like, so I hoped it was just a viral rash.
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He spent the morning laying on my bed watching a Christmas film on the ipad.

Watching a Christmas film
Watching a Christmas film

Amikacin was restarted and the steroids went back up…it all seemed like a backward step and I felt quite disheartened and flat for the first time in a long time.
Andy, the music man, came and asked if he would like to play the instruments , something he loves to do. His reply… “No thank you”.
Victoria came in to cook croissants and he seemed willing at first. When she realised she had forgotten her scales she stepped out to get them. I made a move to get my long awaited cup of tea “don’t go mummy” came a small voice. How could I go after that?
Victoria returned and cooking began but it was clear that Herbie just didn’t feel up to it. Victoria helped him out.

Making croissants with Victoria
Making croissants with Victoria

Making croissants with Victoria
Victoria took the dough off to prove and Herbie fell asleep. He slept for about 4 hours.
Dan arrived and he finally woke up. He seemed brighter straight away and I noticed that he was sitting up properly. Dan took over hospital duty and I returned home , slightly hopeful that we might be close to turning a corner.

Saturday morning came and not unlike our GOS days I waited for the text from Dan containing the news. How was he? Was he afebrile? Did he still have iv fluids? Had he been sick?
Here is our exchange!
image

Followed by…

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I couldn’t wait to go and see for myself. When I arrived at the hospital it really was brilliant to see him looking so much better.

By Sunday at 1pm he was discharged home.
It was a rocky couple of days but cultures were negative and it looks likely that it was just a nasty virus.
I feel like I need a huge stash of cotton wool to wrap him up in until Christmas! For now he is home , for that I’m grateful!

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