Days 0 and 1

We have made a few updates on Facebook the last couple of days but thought it would be good to summarize everything here as well. Our two Day Zeros went by mostly uneventful. Idan is still in a good mood and happy, and he keeps up busy every waking hour. Nights are a bit harder, as he tends to get tangled in all the tubes going into his central line as he does his nightly traveling around the crib while asleep. Tuesday night, both Amanda and I stayed the night to be here for the transplant. As Amanda mentioned in her letter to the donor, the stem cells from the marrow came in around midnight and the nurses hooked them up to his IV. Over the next 5 hours they were slowly transfused into Idan’s small body and over the next week or so they will travel on their own to go live in his, now, vacant, bone marrow. The next few weeks are the hardest ones of transplant. From an immune system perspective he is at total zero. So a lot worse them where he was just with Hyper IGM. He is at his highest risk of infection, and they monitor him closely as well as treat him prophylactically with antibiotics, antivirals and antifugals meds. Also, since he has no white blood cells, there will most likely be breakdown of the cells in his mouth, GI tract, and gut (called Mucusities) and he might stop eating (to much of everyone’s surprise, he is still eating great now). Also, his skin will start to form some blisters, and it might get very red. This is all to be expected as we wait for his new donor cells to engraft and start making the white blood cells again. On the second day 0, Idan woke up with a red glow all over his skin. We were worried it was the start of the skin rash, but were then told that was a result of all the red blood cells that were mixed in with his bone marrow donation. His red blood cells had doubled over night and the red skin was a side affect. Another side effect was a whole lot of energy yesterday which was fun, but very tiring for the two of us 🙂 Today is day 1, and we are in the positive numbers. So far, the day looks positive as well.  We will play the waiting game for the next few weeks. We hung up his Idan-Do Mohwak Poster today, and yesterday, in case you missed it, he got a very cute poster from all the amazing nurses. Thanks for all your notes and words of encouragement both on the blog and on the Help Fight for Idan Facebook page.  We are so grateful to you all for your support!