Off to st Georges again

Reagan was 9mths old on Friday (5 days ago) where that time has gone is anybodys guess!!

So we went to see Dr Pelidis again today because after i saw dr Salma last tue I contacted her to tell her the results of the bloods and to express my concern that Reagan has spent such a long time with a low hb.

Today her hb was 7.6 so slowly dropping (remember it should be at least 12) and her retic count is just 1!!!! It was 78 last wk and in someone with a normal hb it should be about 100, if you have a low hb the. It should be higher!! It's what gives you an indication of how many blood cells are going to be made.

Dr Pelidis said that we've pretty much exhausted everything except DBA, and so she thouhgt it a good idea to test us and the kids to see if we woukd be a match for Reagans bone marrow. This can be done with a blood test. So we're all off to st Georges next wed (which is half term luckily) for a family blood test! The ward really will be full that day huh?

This isn't to say that we have made the decision to give Reagan a bone marrow transplant, it's just so that we know if anyone is a match and weather or not it would be possible.

Of course we have no idea how she will respond to the steroids yet, which she I'll probably go on in around 3-4 mths. It usually takes about a mth for any response and then some time to see if the dose can be reduced to a safe level, so the trial normally lasts for 3 mths before it is decided if she is responding.

I again said that i was concerned that she was happy for reagans hb to go so low and she said that they have allowed it to for now while they are investigating her etc to see what her body would do and to see if it would go back up. But now that we pretty much have her diagnosed she will just go on regular transfusions, probably 1 a month to begin with.

About 3 mins after we walked back throughout the door from the hospital dr Pelidis called with the blood results and said she that she'd call Frimley for the to call me and arrange a transfusion for her.
They then called a few mins later and asked me to take her in tomorrow morning. I'll go straight from dropping the kids at school, they'll take blood for matching and put her canula in, we'll then come home for a few hours while they get the blood etc. Once they have it all sorted we'll go back in for the transfusion.

I'm so relieved that she's getting it, it seems so unfair that she should struggle more than necessary.

I'm also hoping that she will be able to sleep abit more soundly too! At the moment she is sleeping in her crib for some of the night but for bouts of 20mins - 1.5 hrs! Which is bloody knackering! It's worse than when she wasn't leaving our bed!!

So I'll fill you in on how the transfusion goes tomorrow, with a bit of luck it won't be a repeat of last time!!