jonah - monday, march 2nd

I refused to go home last night because of the rough night I had before and just had some pretty bad anxiety about leaving Jonah. Plus, it was supposed to snow, and I didn't want to get stuck away from him. We were offered a free hotel room and a couple different places to stay, closer by than our house, but I literally did not want to go farther than the waiting room. And then God gave us a sweet gift - a family suite back in the NICU opened up very unexpectedly, and we got to stay EVEN closer to Jonah than the waiting room.

Not much news to post today. It was frustrating this morning when it was quiet around here and I had so much time to post, but the internet was down. We just all sat around, not knowing what to do with ourselves. We tried this weird thing called talking. It's growing on me.

I did get to talk to the leader of the NC EB support group, and she was awesome! She did express some concerns to me (as many of you have) about some of the treatment choices for Jonah, but the doctors are so great when I pass along your suggestions. We so appreciate that you care for him and love him so much. I spoke with Dr. Wade at length last night about some of my concerns, and he took so much time listening to my concerns. He did look into the mepitel/mepilex bandages, and guess what? Jonah is now wrapped in triple antibiotic ointment and the new bandages. AND, he's agreed with me (you) that it would be good to only change his dressings once a day instead of twice, and that order is now in place too. AND we tried the Haberman nipple last feeding. Not any additional sucking on his part (and by that I mean that he was TOTALLY uninterested), but it did seem that maybe a little less dribbled his mouth. We're only giving him 5 cc's right now (until the GI doctor checks him out), so I figure he's getting very little to eat at all. Please continue to pray for this situation. I am willing to exhaust every possibility before we result to a feeding tube. I'm in the process of reading all your comments, and if you have EB experience, will pass them along to our doctors.

As far as the humidifier is concerned, we know this is not a great option for Jonah in that it could promote skin breakdown, but per a specialist doctor in Chapel Hill and Jonah's doctors here, we have to do this now to keep his body temperature up and prevent dehydration. Everything is a double-edged sword with his current condition. He is so fragile and so much of his body is raw and unprotected, his options are very limited. We rely on prayer and faith to fill in the gaps.

He still needs to be seen by the GI doctor, the ENT, the optholmologist (Wed), the pediatric surgeon, and the geneticist. Today was slow as far as consultations because of the snow. Many people didn't make it in to work. I'm hoping he'll see the GI doctor and the ENT tomorrow since this will affect his feeds the most.

The one thing that I'm really, really scared about is that with all the ointment and new bandages, there is NOWHERE on Jonah's body to put his pulse-ox monitor. They've tried so many things. I'm going to push this tomorrow at rounds, because I don't even feel like I can leave the waiting room without his oxygen being monitored. After Saturday's episode, I'm just not willing for this to go unmonitored. The nurses are doing a great job keeping an eye on him, but they can not be staring at his face or watching his coloring ALL the time. It's just not feasible.

My sisters want me to start doing daily shout-outs, so here goes:

- to Geri, the nurse educator from DEBRA for being so awesome and easing a lot of my fears

- to Stacey, Connie, and Brook, Jonah's nurses who are taking such great care of him, and feeling his pain just as much as we are

- to Susan who made the whole waiting room laugh out loud with her comment about Ambien making her "jump off a horse" into her bedside table and hurting her "bum."

Jonah being cute -