complication of transplant

Leah is quite sedated today but when I speak to her she opens her eyes & will often indicate ‘yes’ or ‘no’ by nodding or shaking her head.

The Doc on duty is “old school” and the last time he spoke to me he was so blunt and pessimistic about Leah’s chances of survival that I had a very sleepless night – my ONLY sleepless night since Leah’s admission as I am quite practiced at sleeping in a hospital environment.

Therefore I was not looking forward to what Dr KillJoy had to say to me today. I certainly don’t want any Dr to give me false hope, I just don’t want them to take away hope completely and thankfully today he didn’t.

None of the samples taken from Leah’s lungs on Monday have grown any bacteria, viruses or fungi so the Docs have now concluded that her respiratory failure has been caused by inflammation in her lungs not infection, but this is still a complication of transplant.

They are now giving her mega doses of intravenous steroids. They have also decided to defer the immunoglobulin and I have been given a few different reasons for this – personally I think it’s because doctors differ!

Today’s Doc says that Leah’s condition is static – that in itself is good news – that nothing major has gone down hill since yesterday. He says that if there is going to be a positive response to the steroid therapy it will take at least 4 or 5 days – so let’s keep hoping and praying.

I’m going back in to Leah now to play all those beautiful faith filled songs that she loves to listen to. Thank you everyone for your lovely messages of support.

Every day as I head into ICU I try to fix my mind on one Bible verse that will give me the strength to keep going – this is today’s verse –

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

Today Leah is medically more or less in the same place as yesterday.

The samples that were taken from her lungs on Thursday and were sent to the laboratory haven’t grown anything, so this confuses the PCP diagnosis a little bit and has led some of the docs to suspect that Leah may have pneumonitis, another complication of transplant.

It’s not one I fully understand but I think it could be a type of GVHD (graft vs host disease) or some other kind of auto immune condition triggered by the transplant process.

I have been told that the only way to prove/disprove the diagnosis would be to do a bronchoscopy and a lavage which at present they are reluctant to do, as Leah is so ill.

In the meantime they will continue treating her for everything that they can think of treating her for, including PCP, and wait to see what happens.

Leah is less sedated today, she’s sucking on a Polly Pineapple ice pop, but typed that she would prefer a coke float – no chance!

She also typed “what about maths exam 10th Jan” and I said “Leah you won’t be doing this exam”.

Then she typed “maybe God wants me to go back a year but maybe I could still have lunch & break with my form class Mr M lets them go down town” – going back a year is something that Leah has fought hard against since her diagnosis, but here she is trying to make the best of her situation – no keeping this girl down