Update: We did dressing change from 5:00-6:30, and at that point, Jonah did not have any blisters. Maybe good news? Maybe not. I don't know what the turn around time is for cause and effect blisters, because I can't usually determine the cause and effect. I mean, he rubs his face ALL THE TIME, but I can't say, "Oh that blister was caused by that time he rubbed his face." Normally, we wrap him one day and then 24 hours later is when we find new stuff. So... still be praying. It literally will take a miracle for him not to blister. But hey, that's what we'll pray for. I'll update when I know. And just so you know, I'm not super angry with the nurse or anything who mishandled him. I mean, obviously, I wish he had been creative in his problem solving and figured out a different way, but I know more about EB than he does and it's MY responsibility. I'm not beating myself up or letting the guilt get to me, I'm just saying. I'll always be the EB expert, and it will always be MY job to educate. That's just the way it is. And for the record, he was great at drawing blood and only had to stick Jonah once, and got the whole 10 cc's in one shot. I was extremely thankful for that. I just felt it important to clarify that sadness and worry are more my emotions than anger. That same nurse has been a jewel for us figuring out meds and answering my (almost daily) questions. He even went and dropped off Jonah's morphine prescription refill one day because it couldn't be called in, and I couldn't leave the house. But yeah, I plan to take pictures and show the staff the result, just so they understand the effects and WHY we have to be so careful. As always, thank you so much for keeping Jonah in your prayers.
Jonah just had his fourth month check-up and things look pretty good. Dr. B was happy with his height, weight, and head size, and they are all consistently on the 25th percentile curve.
I do have a couple prayer requests:
- There is a wound on his thumb that she seems a little concerned about (and that seems to be causing him some pain when touched) and has asked me to keep an eye on for infection. Please pray that Jonah will continue to resist infection, and that Matt and I will be able to discern the "subtle" clues (her words) that let us know that it truly is infected. I'm just so afraid of missing something.
- They had to take 10 cc's of blood today for his genetic testing. When they did, the nurse used a tourniquet on his arm, which put a ton of pressure on his skin. They put those things so tight! It took me off guard, and even though I said something about it, I kind of got the "we have to do what we have to do," so I just stood by while they did it. I didn't even think to get them to pad it with some Transfer or anything. Also, instead of just putting some pressure on his injection sites, the nurse just rubbed and rubbed the shot spots. Again, I asked if he had to do that, and he said yes. Whereas, after talking to the DebRA nurse, she said just pressure without the rubbing would have been sufficient. Please, please pray that Jonah will not blister terribly on his arm and on his upper thighs. I'm so scared as to the damage that may have been done. Ten minutes of stuff like that can cause us three weeks of healing work and Jonah a lot of unnecessary pain.
I just don't feel like I was a good enough advocate for him today. The only part of the blood draw I had thought about was the needle part, so when they put the tourniquet on him, it just completely caught me off guard. And he's had plenty of vaccinations, and they've never rubbed on him like that, so I didn't even know that was a possibility. I definitely would have told them NOT to ahead of time. I just feel so responsible. It's hard when you know how hard you work and how diligently you care for your child so he will NOT blister or get infections, and then, all of a sudden, he's in someone else's hands, and you feel like you have no control. I just didn't speak up more because I didn't know what was medically necessary.
But now, I'm educated. I just hate that Jonah has to suffer for me to learn the hard way.
Please pray that it won't be bad. When he's gotten bad blisters on his thighs before, they've grown and grown to where the whole top of his thigh is just raw, open skin. And it is impossible to wrap him there, because even though I wrap him up to his groin every time, he kicks his legs and everything just rolls down off his fat little thighs. Not to mention his diaper rests on his upper thighs, so having raw skin there is NOT good. It's so NOT good for so many reasons. I'm freaking in my head a little bit. Maybe it will be okay. Maybe it will be okay.