Day 40: Moving along

IMG_4908It has been 10 days since our last update and we apologize for not updating sooner. Following other people’s medical blogs I have learned that no updates is usually a good sign 🙂.

Before diving into the latest about Idan (which is all good!), we would like to give a big Mazal Tov and thank you to that very special 12 year old that organized a large toy drive for Idan for her Bat Mitzvah. We heard that she included him in her speech this past weekend and has had her whole community praying for our little boy. She is a wonderful person and we are so very honored and incredibly touched to have been included in her big day!

Things have been going well in the past week and a half. We have been keeping busy with clinic visits and building a routine for ourselves here in our temporary home in Seattle. Idan’s blood work has been doing well. He has consistently surpassed his 50oz of oral fluid intake a day and only needs to be hooked up to his IV fluids at night for 2 hours to administer his magnesium. We had hoped to switch the magnesium to an oral medication by now, but it tends to be hard on the tummy. We tried and failed last week, and we will try a different version of the oral magnesium this week with the hope that he tolerates it well and we can get off the IV. Besides that he has been doing very well with the rest of his 10 or so oral meds twice a day and has been eating well.

The trick now is to keep him healthy and safe which is not always so easy. The team feels that he is at lower risk for reactivation of some of the bad viruses as it has been 40 days already with almost no immune system and it has not happened yet. So, while still possible, the risk for CMV, EBV and Adenovirus is lower now. That said, new viruses are always scary and despite all the medications he is on we need to be vigilant in keeping his safe. Today he woke up with a slight cough and a few sneezes, so we are of course worried he is coming down with a cold, which could land us back in the hospital. So far no fever and he seems to be in good mood and high energy. Tomorrow morning we have clinic and blood work so we will talk to them then and hope for the best.

Amanda went back to work this past week from the home office we have set up for her, and I have been trying to take care of more of my work for the Hyper IgM Foundation as well. This has left Idan to enjoy a few hours a day with some new faces. He had a teacher come in once or twice a week for some school, which he absolutely loves. We have also been assigned two wonderful volunteers from Side-by-Side, a program affiliated with Children’s. Idan gets to play with them one afternoon a week and has had a lot of fun showing him all the gifts and toys he has received from all of you! We have also been very lucky to find a few babysitters in our apartment complex who can help entertain him when Amanda and I both need to get things done. One is a BMT nurse that literally lives right above us, and another is a hematology nurse that lives near by. So we feel pretty good about Idan spending time with them, as he has been teaching them the proper way to do a central line dressing change on his Piggy and how to do transplant on his puppy, Blue 🙂

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