Just wanted to clarify that Matt and I have decided (unless something comes up in our appointments here) that we will have Jonah's surgery done here, at Brenner's. What I meant was that all of the surgical team here will be speaking (through email and by phone) to all the specialists in Cincy so they can make sure they are doing everything the EB-friendly way and so that it will be as safe as possible. I love our doctors here, and I have full confidence in their ability to follow directions and trust that they are humble enough to seek those out. So, for now, we won't be heading out of town, but thanks to all of you who offered food, your homes, and company to us in Cincy. I'm sure we'll be up there within the next year so Jonah can visit the EB Clinic and see all the specialists.
And an update on his hiney: It's still very raw and very sore. Sometimes he cries when I just pick him up and am holding him on his bottom, even through his big ol' diaper. I'm coating a Vaseline gauze in Aquaphor, then Desitin, then antibiotic ointment and changing it out with every diaper change. I hope this helps keep the urine off of his raw spot and the Desitin (Zinc Oxide) aids in healing. I even put Desitin on sores on his limbs and feet. It's good stuff. (I like to get the Up and Up brand because it's so much cheaper, but unfortunately it smells like dead fish... I digress.) Anyway, he slept pretty well last night (but only took two ounces overnight... we're not waking him up anymore. He wakes up on his own), and he woke up kind of fussy this morning. First feeding coming up. It makes me tired just thinking about it.
This will be super-quick because I'm feeling the need to rest tonight, and Jonah is refusing to go to sleep.
He's eaten 15 ounces today, and I don't figure we'll get anymore in him. The first half of the day went well, but we've really fought the second half.
Fifteen is better but still not enough.
Dr. S (Jonah's GI doctor) emailed this morning, and he's working on getting the right people in place and getting everyone in touch with the folks in Cincy. I think he's also working on getting our appointments moved up. The best thing in his email was that whatever day we end up meeting with the surgeon, he's also going to set it up to where we can meet, in person, with the anesthesiologist too. That is a very good thing.
Okay, that's it for me tonight. Still feeling low, but not quite as desperate as I did yesterday. Jonah is in a great mood and completely oblivious to the fact that he should be starving.