Jonah has had a rough morning this morning. He was real agitated and upset for most of the morning. He kept pooping his diaper, and it hurts him when we change it, so that kept him pretty upset. It breaks my heart to hear him cry like he does… It’s definitely an “I’m in pain” cry.
At his 8:00 feeding, he took 42 of 50 cc’s. It took me an hour to feed him with several diaper changes and interruptions in between. He was very awake and alert…but very upset most of the time. One of those interruptions was him pulling his feeding tube out. They had to put it back in. It's the second time it's been pulled out, and the third time he's had it put in. What is it doing to his little esophagus???
Some more Duoderm adhesive got put on his face again the other night when fixing his tube. He now has a big sign on his bed: NO tape, NO Duoderm, NO Tegaderm, NO adhesive AT ALL! There's only one little piece left (one big piece came off on its own today, leaving a big red raw spot on his cheek), and we're waiting on some special adhesive remover (Thanks, Janel) to arrive in the mail. I may start applying some warm water and baby oil to it (per Janel's suggestion) in the mean time to soften it up.
Nothing really new to report from rounds. They are trying to get his pain meds worked out now that they have to give them orally (since he pulled out his PICC line). So far (yesterday and today), he's been in a lot of pain during his dressing changes. It's hard finding the right combination of oral drugs to give him so he doesn't hurt, without knocking him completely out where he won't eat for 12 hours. We've put in a call to Geri with DebRA for suggestions. Holla at your girl, Geri! :) I really don't want that PICC line to have to go back in. Jonah is so strong and thrashes around so much, that I know it's hard on his skin, and they have a hard time bandaging that arm and hand because of it. His right arm and hand and his left knee are still in really bad shape. If you could see what's under those bandages, it would break your heart. It breaks mine. He's still developing new blisters everyday. He always seems to have some new ones on his arms and today, he has two really big raw spots on his belly from rubbing his bandaged arms and legs against his skin. I wish there was some kind of shirt we could put on him that would protect his belly from his arms and legs without the shirt itself causing blisters. With new blisters and lesions constantly popping up, I don't know at what point you are considered "healed" enough to go home or "safe" from getting an infection. It doesn't seem you are really EVER safe or healed from this. I avoid doing research about the different types, for fear that I'll choose the worst one and focus on it. I just focus on the caring for him research until we have a diagnosis. There's such a wide spectrum as far as severity. I don't mind the work it will take. I don't mind that our whole life has changed. Everything is worth it for my Jonah. I just want him to be able to come home. I want him to live a long, long life. I don't want to have to say goodbye to another child.
I'm so busy here. I hang out with Jonah back in the NICU the majority of the time. I have a nice window seat where I can always be by his side. Anything I can do, the nurses let me do, so my life is a lot of aquaphoring (yes, I just verbed that), diaper changing, bottle feeding, pumping, paci holding (that boy loves him some paci), head rubbing, holding, and loving. It's basically what I'd be doing with him if we were at home, but a much more complicated version that requires eight hands instead of two. Although I've loved having lots of visitors, it's actually getting to the point now that I find I leave them waiting in the waiting room for long periods of time while I go mommy my baby. I guess that's the way it should be though. So anyway, if you plan on visiting, it may be good to get in touch with me first so we can work out a good time where I can actually visit with you during reporting times (shift changes) or dressing changes. Keep the comments, voicemails, emails, prayers, and love coming though. I still have time for ALL of that.
Specific prayer requests:
- that they will figure out the best way to manage his pain orally without the use of a PICC line
- that the meds will not knock him out so that he won't eat
- that he will improve on eating so we can get that feeding tube out
- that Jonah will be healed (or at least he'll have the form that is mild and will let him live a long, full life)
- for Matt who thinks he's getting sick. We both need him here with us.
Thanks so much for your love, prayers and kind words. They help sustain us.
I'll try to post a couple pics later on.
Going back to see him now... my favorite.