Jacobs Journey

Latest News

Posted in Uncategorized by Dunx on February 24, 2010
The Latest news on Jacobs Journey:

14/05/10 Hi WERE HOME!! sorry i have not up dated recently! i will back track slightly…regarding GVHD they left jacob on gut rest for a while and then re tryed feeds with the view if it didnt work again they would do the scope and have look. Jacob had a few weeks off been fairly poorly and the feeds didnt work, at the same time skin GVHD became much more apperent covering all off his body. So they started treatment steriods and it took nearly 2 weeks to get him in for a scope!! so while his skin was graded at 4+ gvhd by the time he got a scope he had been on treatment for a while so it only showed mild to nearly none off the gut! after a period off been on the steriods we re tryed YET AGAIN with feeds starting from scratch. Fortunatly this time around it worked!!! slowly slowly we upped the amount off a fully digested speacial formula and he kept on toleratiing it 🙂 keeping him on a no wheat no dairy diet we were able to get him on enough tube feeds to come off TPN through (the vien nutrician). And he just kept getting better and better and more back to his old self 🙂 we got home on tuesday. with a stack off meds and over night feed’s and 4 bonus tube feeds for fluids through out the day! Mean while his liver functions have been completely off the scale due to drugs he is on so they have had to be changed meaning that while he is still on steriods for gvhd he still has to have 1 iv med 3 times a week!! so we are at our local hosp twice a week and London once!! but that will wean down fairly quickly. He is eating orally and we are gradually trying him on a little wheat & dairy…he just wont drink anything orally!! When we got home after 13 weeks Jacob couldnt remeber it innittally…i felt he felt it seemed familliar but he couldnt remeber it.. but as time has gone on its like we were never away 🙂 I cant tell you how relieved i am that things are now going so well, and to be back home all as a family. i no were not out of the woods yet but the worst is behind us all the worry the dred off not nowing what to really expect through transplant that bogs you down for months before you even get there!! all behind us and i feel the best i have felt since he 1st got ill at 12 weeks old 🙂 i cant belive he will be 2 in a few months!! We truley couldnt off got through this without the support we have had.

I would just like to say Kian & Rhianna will always be in my thoughts and so to there familys my hart goes out to you, whilst i never new these 2 children through out our time through BMT sharing the same experiances with both familys they are and always will be very close to my hart x x xx x x x x x x x x

For the full back story see Vicky’s “A Mothers Diary” Click Here…