Two Weeks Post Transplant

As predicted, this week has been a very tough one. The skin around Scooby's torso, neck and arms is just starting to heal up now, but on his lower body it is still very raw. He has been catheterised to keep urine off his skin but he still has diarrhoea which hurts on his broken skin and when we keep having to wipe the same areas over and over again to get it off. 

Over the weekend the mucusitis in his mouth, throat and stomach was so bad that he couldn't talk and he struggled to breathe properly. They decided not to intubate him as it would mean moving him to ICU and compromising his isolation precautions. Instead they turned down his morphine (which can hinder breathing) and added some ketamine to help with pain instead. 

Thankfully by Monday he was able to start coughing and by the end of the day his throat was much better. The little whispers that he'd been struggling to force out on Sunday became real words and suddenly we were projected into a new phase. The 'I want a...' phase. 

Presumably as a result of the Ketamine, his mind started running overtime and for the last five days he hasn't been able to settle at all. He is fixated on certain things, from wanting to go home, to wanting certain visitors, to wanting to stop himself from pooing so it doesn't hurt his bottom - all of which are perfectly acceptable things to want when you're eight years old and have spent thirteen weeks in hospital - but he is asking for them repeatedly, robotically and very loudly, at all hours of the day and night. He is obsessed with asking what time it is, so that he doesn't miss the Mr Men show at 7:20 every morning, but by far the weirdest thing he will not let go of is his persistent request for an ambulance. Every doctor, nurse, cleaner, physio, visitor and support worker gets begged several times whenever they come into the room and no amount of explanation, persuasion, firm telling or ignoring will make it stop. At approximately 200 requests a day (yes, that's how hard I am trying to fill my mind with constructive activities!) I think we may have just passed our thousandth time of the same question. He only seems to be able to sleep for an hour and a half at a time before waking and frantically asking all the same questions again. The ketamine was taken down a couple of days ago, but his erratic behaviour continues, so we don't know if it triggered something, or is still in his system, or whether it is sheer frustration at his situation that is driving him.

The worst thing about it is not the incessant questions and howling in the day and night, but the fact that he seems so very unhappy. He hasn't cracked a smile or joined in with any of the activities he usually loves all week. He asks for things then dismisses them straight away, and yells at people when they try to help him. Even his sweet talk with the nurses ('You're my favourite nurse... Please don't leave me!') is a strategy to try and rope them into joining him in his escape by ambulance plan!

So that's the ground level, on the surface stuff, which is pretty overwhelming this week. The underneath stuff however is still good. Organ functions are all still high, and his neutrophils are up high enough to show that engraftment is already taking place, which is early, and a very positive start to his post-transplant recovery. So we will keep going, slogging it out and patiently answering the same questions another thousand times until he starts to feel better and turns back into his usual perky, resilient self. But a little prayer for sanity (his and ours) wouldn't go amiss in the meantime - thanks.


  1. Every morning we start the day by praying for Daniel and every evening we check for updates to know how to specifically pray. xx

  2. Daniel is always in our prayers. We continue to pray. Thank you for the honest updates Esther :) Love to you all. We will visit as soon as we are able. Did Daniel get the pictures from Aaron and Lana? I posted them last Monday. They pray for Daniel every night as part of their bed time prayers and Lana asks when she can see Daniel again. He is loved and missed. So glad the treatment is working. We will pray for peace and rest for Daniel during this frustrating and painful time for him. Love you loads and loads!! xxxxxxx

  3. Dearest Esther...........Shabba is keeping me up to date with Daniel. Is there anything we could do.....anything? May love and prayers surround you. xx


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