Well transplant is all done, and Harrison has jumped ahead in leaps and bounds. This post will bring you up to date with the last two weeks post transplant.
Harrison has started smiling more every day, he is happier than I have ever seen him and is "talking", squealing (on occasion) and laughing.
He has twice weekly blood tests. Already we have seen an improvement in his liver enzymes. Everything else is stable.
We were told that we'd be in hospital for a month post transplant to ensure the graft starts to take, but Harrison is doing so well we get to go home a week earlier than planned. Harrison since transplant has gained 640grams, which equates to 1.4 pound. This is excellent progress - even for a baby who doesn't have SCID and quite unexpected. Harrison will go home with Neocate formula - and will be breastfed. The neocate will help him with the extra calories he needs to continue to grow properly. He is on Neocate as it is very elemental formula and is more easily absorbed due to his blunted bowel villi.
He will continue with weekly bloods and will see our pediatrician at home for two visits, and will be back to hospital between times. The doctors have planned for us to go home on Friday 3rd August 2007.
Harrison will have his next IVIG on 2nd August, and be back to the hospital on the 10th August for his 30 day chimerism blood tests.. This test will hopefully start to show some of Ella's cells floating around Harrison's system.
One of the cool things in Ella being his donor - she is a girl, so they transplant girls cells into boy body. It makes it very easy for the doctors to see these girl cells in action when they test for it.
As for the future, well we have started early intervention stuff, black and white prints for Harrison's eyes and musical toys that promote his interests. Because he goes home with the central line in I will learn how to change over the dressing and take care of this.
Then we come back on 30th August for IVIG again, 28th September for his hearing tests and for more chimerism tests, plus I think that is IVIG time again - if needed.
He also goes home on a couple of medications - Bactrim for his chest - to prevent another infection and flucloxycillin and anti fungal for his candida on his tongue.
Long term is still a mystery. During the week leading up to the BMT, we were given a sheet of information about neurological problems ADA kids can have. It was a rather daunting list. Harrison shows signs already with the nystagmus. Unfortunately this is not the only possible problem, so we will watch and wait to see what happens with him. The Neurology team are closely monitoring Harrison for any adverse developments, and will perform tests once he is 6 months old to ascertain his eye problems and anything else they think may be happening.
For now I remain hopeful, in that we had a lucky break with BMT, the nystagmus has settled, and Harrison seems to be developing along at a close to normal rate. Maybe we will be a lucky family. Evidence suggests that kids go one of two ways - no problems or a number of interrelated problems.
He had the ribs that will need to be reviewed too, seeing if they have healed. But, given Harrison's unusual history and presentation in the start, maybe he'll be different and we look at a middle ground with him.
Whatever the future holds, Harrison is going home. He is healthy and happy. What more can a parent ask for.
No comments:
Post a Comment