jonah update

I emailed the doctor last night about the possibility of Jonah having Cough Variant Asthma. She emailed back saying that is what she was treating him for when she sent us home with a nebulizer, albuterol, and pulmicort almost a year ago. I didn't know that's what she was thinking he had... we never called it that. He had a horrible cough at that time but that was when his breathing had gotten so bad. So we came home with the nebulizer for that.

But I still have the nebulizer and I AM AN IDIOT for not starting breathing treatments days ago. I don't know why I didn't think about it except that I AM AN IDIOT. When we did breathing treatments last time, they were more for his horrible breathing, so I just didn't think about it for the cough. Grrr. I'm so incredibly frustrated with myself. I shouldn't have been so stubborn and arrogant and should have called the doctor earlier. Pre-nebulizer though, all they did was suggest Benadryl (which doesn't work for him) and I would just get so aggravated. Being humbled sucks sometimes.

Anyway, I started breathing treatments today (and LOTS of Mucinex). We worked three in and I'll work in a fourth if he wakes up enough tonight to cooperate. So far I can't tell much of a difference, but hopefully tonight will be better. He managed to hold down the four ounces I fed him for breakfast (I usually give him 6 to 8) but threw up all of the 5 oz (I usually give him 7 to 8) I fed him at lunch. I fed him another 5 oz at dinner, and so far so good. I thought he was doing some better this morning, but then he threw up his lunch and coughed ALL the way through nap. It was horrible.

He acts okay except for having moments of exhausted. I don't even think he knows what "hungry" feels like or is. I don't know how he's not starving though. He is worn out though and all he wants to do at nap and bedtime is just lie in his crib. He won't let me hold him upright and rock him to sleep and he won't sleep with me in bed so I can keep him propped up. And I try to prop him in his bed but he just wriggles his way back down to where he's lying flat. Poor thing just wants to be comfortable and sleep. His cough is so violent and he has bad spells of 10 to 20 minutes where he can just hardly catch his breath. And if he has anything on his stomach, he throws up. He hasn't thrown up at in his crib at bedtime yet (he did at nap time on Friday) though, because he's been throwing it up before he even makes it there. So if he can continue to hold down dinner, he may throw it up in bed, which would probably mean middle of the night bath/dressing change. So I'm just praying he can hold it down and the coughing subsides tonight. Nap was not encouraging though.

This is a photo I took with my phone right before lunch today. He was so tired, he had just rubbed his eyes like crazy. And then he couldn't sleep when it was time for all the coughing. It just breaks my heart.

And then he had this huge blister at dressing change time. (The white one is one from yesterday... the white is Desitin.)

So it was just an "EB sucks" sort of day.

Usually I don't get mad at God, but I'm having a hard time with this one. Being able to eat and sleep just seem like things you should be able to do. I don't know why it has to be such a struggle. I'm just so sad for him.