Sorry for the tardiness of this post – I’ve been trying to get it up since around noon.
We got to go to rounds this morning for Jonah, and it was so great to have a whole team of doctors and nurses there talking how to best serve and care for him. I didn't really know the rules for rounds, but I took it upon myself to ask lots of questions and offer LOTS of my opinions. The doctors were very patient with me, and didn't seem to mind my input at all. I was thankful.
We learned a lot. Jonah had a really hard time this morning when they changed all his bandages. Our weekend nurse, Stacey (who is totally awesome), said that she and the three other nurses doing the dressings were all three crying before it was over. She said his pain was a 9 at that point. She had to go up to 9 mics of pain medication (a very high dose), and still felt like he needed more. It's so hard, because there is a very fine line between easing his pain and putting him in respiratory danger. We don't want him to stop breathing again like yesterday, but it's so hard to see him in agony. They've stopped his 3 mics every 2 hour regimen, and have started a constant 1 mic drip. It will hopefully control his pain better, but is a lower dose than he had when his breathing stopped. They say this is better for him than the up and down of the every 2 hours dose.
They don’t know the state of his mouth and throat. He does seem to have some lesions in his mouth (has been sort of spitting up or letting dribble some white sort of thick liquid), and the ENT probably won’t see him until later in this week. Our biggest concern right now is that he needs to eat. Yesterday he wouldn’t try to suck on a bottle at all. We’ve tried twice today, and he seems to be trying to latch on, but then spits it all out. I worry about this a little – not knowing if it’s just that he has to learn to suck or that his throat is in a lot of pain. We hope it’s the first. They said that if he needs it, they will try a combination of Benadryl, Maalox, and Lidocane to help him with the sores. They’ve also started him on some Tylenol. To me, he doesn’t seem to be in pain when taking the bottle – he’s getting more and more interested.
A gastrointestinal doctor will see him tomorrow and the ophthalmologist will come on Wednesday. If he doesn’t start eating, they’ll have to put a feeding tube down his throat, which could be really bad as far as the lesions it could cause on the inside. He has to get nutrients besides just the sugar water, but a tube could cause major damage. He needs to get constant pain meds, but that puts him in danger as far as breathing. And they’re not able to monitor his pulse-0x like they need to some of the time, because everywhere they put the monitor either won’t stick because all of the skin is raw or the okay skin is covered in slippery ointment. Every solution seems to have so many risks.
The scariest thing we heard this morning is that Jonah is showing characteristics of the most severe type of EB – dystrophic. This is only one doctor’s opinion (Dr. Block seemed to think it was too soon to tell), but the doctor this morning said that between the severity of his current lesions, the percent of his skin that’s damaged, and the purplish lesions on his head, he really suspects that Jonah’s is a very severe case. It’s discouraging, to say the least.
I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.
I will probably stay overnight since they are calling for snow here. They’re calling for 3-5 inches (so they tell me), so we’ll probably get a trace (and it will be the top news story for four days).
- That Jonah will continue to resist infection
- That he will eat and avoid a feeding tube
- That he will not have as severe of case as some doctors think
- And that we will have more days like yesterday and fewer nights like last night
Here are the most recent pictures of our little fighter.