Thank you for all the warm wishes and prayers for Idan. We are now on day 15 of living in the ICU (AKA International Space Station). We are still taking all precautions, and are in Isolation wearing masks, gloves and gowns. Idan has been improving every day from the pneumonia. Yesterday afternoon they took the breathing tube out (extubated) and he now only gets a small amount of oxygen in his nose. This was a very big step after being intubated for 13 days. They have also started weaning him the narcotics, which has caused him to have some withdrawal symptoms and he has the shakes and some other symptoms of withdrawal (think Matthew Perry as Chandler in season 9 of Friends when he was addicted to pain killers), but they are doing a good job here adjusting the doses to help him deal. It was just another scary sleepless night during Amanda’s shift since idan was all wired and could not sleep. On the plus side, since he no longer has the breathing tube, Amanda was able to climb into bed with Idan and hold him for the first time in 14 days (cue waterworks).
He is still getting feeding through his nose tube and still has a bunch of other IV’s. But there is a plan in the next 24-48 hours to get him to eat on his own with a bottle, and to maybe get some of the main IV lines out.
Overall his spirits have much improved since being extubated (see pics from this morning below) and he is more playful. We are still waiting on many tests to determine the type and severity of his immunodeficiency. As of now, we have mostly ruled out SCID, but there is a long list of other possibilities. The best part about Idan being extubated for all three of us is that after 13 days we finally got to hold him again 🙂
I will update more with better news as things move along. Please feel free to share this news with others that have been keeping tabs on Idan.
Thanks,
Akiva, Amanda & Idan