Jonah seems stable for the time being. They took him off his constant pain medication drip, because the overload is apparently what made him stop breathing earlier today. He has been okay ever since. One of the doctor's who saved his life this afternoon, Dr. Block, is one of the most caring and compassionate people I've ever met. He did an amazing job restoring Jonah's breathing while being very careful with his fragile state. After having an oxygen mask, suction etc, Jonah has very few new blisters to show for it all.
And about an hour ago, after Peyton and I had gone back to see him for some great eye-open time, we happened to pass Dr. Block on the way out the door. I gave him a huge hug and thanked him for saving my little boy's life. And he hugged me so tight back. He then asked me how we were doing, let me cry a little, and talked to us for about 20 minutes, helping me understand EB more and some of the diagnosis possibilities. He said that he was trained by some of the first neonatalologists, and that one great woman, who died in her nineties recently, always told him to think about how the family feels and whether or not the parents have gotten to hold their child. He said, "I know how hard this must be on you." And he meant it. He told us a little about the three types and reassured us that we can't make any assumptions about what type Jonah may have. He doesn't think it will be as long as three weeks before we find out a more specific diagnosis. I am very concerned that Jonah is developing new blisters, just from lying in bed, but Dr. Block says this is normal for EVERY type of EB. He said that the Simplex version is the least serious, and that most times, kids can outgrow this and live symptom free - so that version would be great news! However, so many people have left comments about more severe versions of the disorder, I'm going to bed hopeful - people who are married, have kids, or who ARE kids who wrestle with their daddies! Thank you guys so much. I can't wait til I have time to look at all the great sites you've mentioned for ideas and support!
One new concern tonight is that we have tried twice to bottle feed Jonah, and he won't even attempt to suck at all (whereas he was sucking on a paci like a mad man yesterday). This could be just because he's drugged up and tired, but there is some concern that he's developed blisters in his mouth and throat (an indicator of one of the more severe versions of EB), and that he won't suck because he's hurting. Hopefully an ENT and lung doctor will examine him tomorrow to see how he looks from mouth to bottom.
So, specific prayer requests for tonight (or tomorrow for those of you who aren't on a Holy Spirit High and will have the benefit of Ambien to help you knock yourself out):
- that Jonah will have the Simplex version of EB
- that his mouth and throat look healthy and whole
- that he is not in very much pain now that he is on lower doses of pain meds
- that his little body resists infection (STILL the biggest concern and greatest danger)
Here are a couple pics of our attempts to feed our little man. I got to lift his head by putting my hand under the pad he's lying on. The weight of his head in my hand was the best thing to happen all day! I sort of got to hold him. Hooray!
Thanks so much for continuing to love on us and lift our Jonah up in prayer! We know God can do miracles, and Jonah can be healed.