The ENT will only be coming if Jonah shows signs of respiratory problems. I guess he feels that if Jonah's breathing is good and he's showing no signs of respiratory constriction, he'd rather not perform anymore procedures on him than are necessary.
They did start him on Zantac per my (your) suggestions... just in case he is having some acid reflux problems and his throat is in pain.
They told me today that they were going to put in a Transpyloric tube (that would run from his nose into his lower stomach), but as they were saying this, the attending doctor came in, who had just spoken with the EB specialist at Vanderbilt (Dr. Fine) who said they should NOT do that. My guess is that he'll end up with a G-tube before it's all over. And per many of you, that's not necessarily a bad thing. I was just hoping Jonah would get to stay out of the OR.
They've started a PICC line in his arm (that they've secured somehow without tape) so Jonah can get more nutrients. They are really getting concerned about his nutrients, and this will help a lot until he can get whatever feeding tube they decide on. They are putting hyporel in his tube which should give him a lot more of what he needs.
The bad news today is that Jonah's white blood cell count is down. For adults, when we get sick, our levels go up, but for a baby the count goes down. This could indicate that he's getting an infection. They've started him back on antibiotics. They also took another blood culture today (I'm assuming we'll know the results of that tomorrow), and he's been put under "neutropenic precautions" (gloves, gowns, masks). Please, God, no infection.
They have stopped the humidity in his bed. Apparently his temperature has become stable on his own. I'm thankful for this, since the humidity leads to more skin breakdown.
On the dermatology front, they will have to do additional biopsies on Jonah. They were hoping to be able to use the same tissue from his first biopsy, but there are special liquids they have to be kept in for the kind of tests they need to do, so those are being overnighted here tonight. One sample will be sent to Houston for a certain type of test and the other to Buffalo. We won't know a specific diagnosis or prognosis for two weeks. Please, God, patience.
We were interviewed at 2:00 by the Winston-Salem journal for an article about Jonah, EB, and the social networking aspect of all this - the blog blowing up like it has and his facebook prayer group which now has over 2,000 prayer warriors. I don' t even know 2,000 people.
Sorry it has taken me so long to post - today has been an insane day! We've gotten so much information, but it has been busy and a little overwhelming to say the least.
Please pray for Jonah.
- that he won't have an infection or that if he does, that he reacts well to the antibiotics and will be restored quickly.
- that the PICC line will provide the nutrients he needs until the final decision is made about the feeding tube, and that it will not do too much damage to his little arm
- and that he will handle the biopsies well tomorrow
He's so strong, but I wonder sometimes how much one little body can take.
- Deac, our dog, who finally pooped after several days of constipation (Grandaddy - our Deac-sitter was so worried). Who knew canned pumpkin would do the trick?
- Dr. Ali (our WONDERFUL dermatologist) who is going way out of her way to contact specialists in Vanderbilt and Chapel Hill, pay special attention to our sweet Jonah, has to leave tomorrow afternoon for a dermatology conference but gave me her cell phone number and told me to call ANY time this weekend if I had any questions. "Really, ANY time. And please, call me by my first name." (Insert big hug here)
- Dr. Furlong (our WONDERFUL neonatologist) who is so gracious, humble and kind; who listens to all my (your) recommendations and suggestions; who instituted mepilex bandages, the Haberman nipple, and Zantac per your comments. What a blessing to have such a great doctor who is most concerned with Jonah's well-being and that he gets the greatest care and has no ego about it whatsoever. She even spent lots of time with the Journal interviewer today and us, explaining (once again) his disorder and his treatment to her. All the doctors here are so great. Jonah's in great hands.
Thank you for your continued love and support. I love reading your comments and prayers for Jonah. Please don't expect much of a post until the evening. Life is so crazy around here. But hey, for you Pacific coasters, I'm right on time!