UPDATE 3:07 pm -
I was feeling a little better this morning after a refreshing 3 and a half hours of sleep (interrupted every hour for a stats check, drugs, and a blood draw). But then I busted out (legally, of course). I then headed straight to Brenner's to see Jonah, where Matt gave me a good report from last night. Jonah stats were stable, he was still breathing on his own, Matt had gotten to spend a whole 10 minutes with him with his eyes open, and also got to go on rounds with the doctor's when it was Jonah's turn. There is no intestinal blockage, so no surgery in Jonah's future, as far as we know. The burn team also came down to make recommendations about Jonah's dressings. They asked that he be covered with the gauze on ALL parts of his body, even the non-lesioned parts (which are few), to further protect him from infection. He's the cutest little mummy I've ever seen.
And to top it all off, my family greeted me at Brenner's with the words:
"Jonah's famous!" "MckMama put a note about him and your blog on twitter."
"I got tweeted by MckMama???!!!"
Although MckMama is TOTALLY awesome, I must admit I'm a little more excited to have access to her gazillion prayer warriors than to be mentioned by her Bloginess. (Although that is way cool too!)
Matt and I went in to see Jonah as soon as I got here today, and we got to speak with the dermatologist. The biopsy came back, and he definitely has Epidermolysis Bullosa. The dermatologist says that he is rare - only 8 cases in every million babies. There are three types of this disorder, but we don't know which one yet. They will now have to do an electronic microscopy on his sample to determine which type he has. She said it could be up to three weeks before we know the results. They haven't really indicated that one of those types is necessarily worse than the other, but I haven't had time yet to research all three. The severity is yet to be determined, and is more a touch and go, day to day sort of thing than a right now thing. Although one doctor thinks he has a severe case, the dermatologist says that, in her opinion, that can't be determined by his lesions right now after having gone through something so traumatic as child birth.
After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.
On a lighter note (I'm trying to find one per day), before delivery yesterday when all I could have was transparent liquids/jello, I mentioned, with my Maw-Maw in the room, that all I wanted was a Fuddrucker's cheeseburger. Maw-Maw charged the Fuddruckers gates this morning at 10:00 am (they don't open until 11), begged them to let her in, and we had three burgers in our room by 10:45. We're pretty sure she probably told them all our story and had them crying before it was all over. She's great like that. The funny part is that when she came here to Brenner's (before I was here) and told several people her story, she kept saying things like. "All she said she wanted was a "Fubbruckas" (or) "Fuddruckles" sandwich. I've never even heard of that."
She's so cute. Bless her heart.
One of my new commenters reminded me of this verse (thank you):
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:26-28
It helps me feel okay that I don't have the words, and sometimes I'm too numb for prayer at all.
A reader sent me this link about a clinical study being done with 30 patients who have EB, where for the first time, a bone marrow transplant has been used to treat something other than a bone marrow or blood disorder.
We won't know until Monday if this is exactly what Jonah has, but all signs are pointing to yes. The article says that it is a "disease that, though rare, causes the skin to fall off at the slightest touch and inevitably leads to cancer. Most children who have it do not survive to adulthood." This is probably descriptive of kids who have the severe version, but we are hoping and praying that either Jonah has a mild version or the diagnosis is completely wrong. Please pray for one of these two options or a complete miraculous healing for our beautiful, beautiful boy.
There's also a video link on the page of a the toddler age brothers who are undergoing this treatment.
I haven't talked to Matt yet this morning. He went home to get some sleep while mom stayed with me at the hospital. I'm getting released today, as soon as the doctor comes by and gives me the go ahead, and then I figure the next week will be a lot of time spent at Brenner's loving on Jonah as much as we can from outside his plastic sterile box. We can't touch or hold him, but can crack open one of the little doors and talk to him. He acts like he knows us, and will typically calm down when he hears my or Matt's voice.
He seems to be stable at this point. He's breathing on his own, and all his vital signs are strong. He is covered in yellow antibiotic soaked gauze all over his body to keep his lesions moist and infection free. His eyes need to be checked by a specialist since this disease affects the mucus membranes, it could affect his eyesight.
"Fragile" doesn't seem like a strong enough word to describe him. I'm not really in the state to cheer lead and say that everything is going to be okay. I do hope and pray that we find out some really great news on Monday, but it's an overwhelming sadness and anxiety that fill me now. Please pray for Jonah. I haven't yet been able to find the words to pray myself.