Since the last time I posted lots of things have happened.
Last Thursday she had her muscle biopsy. The operation went well, but it seems that they sedated her a bit too much because she remained extremely lethargic for the rest of the day. The nurse bathed her that night and I was able to hold her for the first time in days while she changed the linens.
While I was holding her, we all noticed that her oxygen levels would go from 100 to 75 and then back up to 95 then down again to 80, etc. So we thought that was weird, and it looked like she was taking very shallow breaths, so that was why her oxygen was dropping. A few minutes later, the nurse took her from my arms because her oxygen dropped all the way to 35, and had stopped breathing and she had to start bagging her to give her more oxygen. The respiratory therapist came in and started giving her more oxygen, and the fellow doctor had just happened to be coming in to check on her when all this happened so she was able to act quickly. Another doctor from her team, one of the pulmonologists was also stopping by to see her and was able to assist. Leah was not having any chest rise, so she was not making any effort to breathe. Earlier they had given her some Rubinol to dry up her secretions so they think that that combined with too much sedation at the biopsy was what caused her to stop breathing. They had to intubate her once again, which we were fine with since that was going to help her breathe. Everything happened very quickly and efficiently but it was another scare that came out of nowhere. Over the weekend not much happened, since we were just letting her rest and waiting for the biopsy results. Zev's mom had come in to town Wednesday night so she was here with us until Tuesday morning and was a great support.
On Monday we held a jewish naming ceremony for her, since we had not had time to have one since she was born. There is also a Jewish tradition called "meshanneh shem" where a person who was dangerously sick would change his name in the hope that the Angel of Death, who summons persons by name, would be baffled thereby. The Rabbi suggested it and we really didn't think it would hurt, so we added a name, so that she is now officially: "Leah Raquel Lucia Esquenazi". I chose Lucia because it means "light", which is very appropriate for her now in these dark times; we want her to be filled with light and healing. Lucy was also my maternal grandmother's name, so it also has a deeper meaning, and we chose Lucia, because it was also Italian which is part of my heritage as well. It was a beautiful ceremony, with both of our moms there as well as our "adoptive" parents, Roy and Dolores Starke. One of Leah's godfathers, our dear friend Ben Cohen was there as well. It was great to have them all there supporting us and being a part of her naming ceremony.
Now for some "good" news....
I wrote good in quotations because it's not for sure yet, so we don't want to get our hopes up.
Yesterday the genetics team let us know that they found an anomaly in her genetic code. It is a lower level of a certain muscular neurotransmitter. Normal range is 480-1000 and hers is 250, so Genetics along with Neurology seem to think it could be what is causing all this. This is really good news because if that's what it is, then it is treatable and she can recover. However, they want to make sure they get all the information back from tests like the muscle biopsy and some other blood tests just so that they don't miss anything.
Now one of the issues for treatment is that the smallest dosage of the medication they could potentially give her is still too much for her since she is so little. So that is something they are working on figuring out as well
One of my co-workers, Alex Lehmann, came by the hospital tonight to visit and prayed for her and kept us company for a while. It was great to be able to talk with him about how we're feeling and share experiences. We feel very lucky to have such caring friends and even people who don't know us personally, praying for us and the baby and hoping she comes through all this soon.
We appreciate all your prayers and support.
I will update again soon