Day +277

Sorry not have updated earlier, I haven’t been able to leave the room. We are now on Lion Ward. Jesse was a lot better on Saturday, still very sleepy, puffy and weak though. Derek and Bernie (the lift loonie) were around for most of the afternoon and Tim visited. Lily has stayed and has been a wonderful support. We decided it was best that Derek went home to Brighton as Bernie has been such a handful. As ever the Gibbs have been brilliant, putting them up at a moments notice and making them feel welcome but Bernie has been disturbed by all the upheaval and was persona non grata when he decided to go walk about at 3am. He woke up the whole house! Derek found it really hard to leave but he knew it was the only option...

The nurses on this ward are really lovely but I began to get very fed up that Jesse’s notes are clearly wrong. The general impression they give is that he has just had a bone marrow transplant and that he has GVHD, whereas we have been home for five months and he has pneumatosis caused by the steroids that have settled the GVHD!

Jesse’s heart rate was really low and everyone seemed very worried, at first it was in the 40s and then it dropped to the 30s and then started hitting 29. The doctors suggested that it may be caused by the steroids, but they weren’t going to reduce them. There are many reasons I am concerned about steroids; most importantly they reduce immunity to infection and thin the skin (which has caused the pnuematosis). I had been told he was on 34mg of hydrocortisone (steroid) and was concerned this was too high...but distraught when I found that this was being given to him four times a day. I had thought this was his daily dose! I only realised late on Saturday night but I kicked up a stink and they agreed to halve the dose and revert to his original dose by Monday. A few hours later his heart rate started to climb and now it is very healthy at around 100bpm!

I had an exhausting night, Jesse was awake lots. He was carrying too much fluid so they gave him an emetic at 2.30am and he peed all night long. He is so weak and has so many IVs going it takes two to take him to the commode, so I got very little sleep. He had loads of tummy cramps (perhaps caused by all the antibiotics). He started to need oxygen through the night as his oxygen saturation levels (sats) were low. To add insult to injury he then had an allergic reaction to Buscopan, a drug the lovely nurse had suggested may help with the tummy pains, so it was more Piriton and then codeine...By the morning he was on oxygen all the time as he is now. The doctor checked his lungs and could hear the right one wasn’t inflating properly. So we were sent down to X-ray (the poor little boy was so ill he was gagging in the lift). It showed fluid on his right lung, which is due to an infection. They aren’t sure if it is in the lung or around the lung so he’ll have an ultrasound later and maybe they’ll have to draw some fluid off so they can culture it. I don’t know exactly what is involved. They have added another antibiotic to the other three and may have to add an antifungal drug too just in case. Also Jesse’s potassium levels are low so he is on his fourth infusion. He is weeing loads (18 times in 12 hours). They think the kidneys aren’t working too well and so are leaking electrolytes. The trouble is that he has lost his Hickman line and the other lines keep failing, so his TPN has to come off when there is something more important.

I’m waiting to see the BMT consultants for more plans. I’ll try and keep updated more regularly but it is hard as I don’t want to leave the room and there is no internet access. Lily has to go round the corner to post this...thanks again for all the messages and positive thoughts,
Love
C
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