I am glad to say that he is finally improved! The past week we gradually started to see him get better, and for the most part he's doing pretty darn well now. He does still wheeze a little bit every day and still has a harsh cough, and of course he has a cold now, but his breathing is no longer labored, and his respiratory rate has come down significantly.
We saw the asthma/allergy doctor again this past Friday, and Marek had allergy testing done. When we went, his lungs still sounded junky, but the doctor seemed to change her tune (for the better). She said that she (and the pediatrician) felt that though he may have a little asthma and/or reflux, they felt this problem is likely a "structural" upper airway thing with Marek. Thankfully, Marek has no allergies at this point. They also did blood work to make sure his immune system is working the way it should, and all of that came back great.
We saw the pediatric pulmonologist at Brenner's yesterday, and were very pleased with the visit. One of my biggest prayers was that we didn't get "blown off" by the doc. He spent a significant amount of time with us, digging into Marek's symptoms. He said it is not normal to have a cough/wheezing/breathing problems last so long, but the good news is that Marek has, indeed, finally improved. He went through SO many scenarios of different things this could be and walked us through his train of thought every step of the way. We discussed MANY possibilities, but the next step would be invasive testing under anesthesia, which is obviously not something you want to do without caution. He said this doesn't mean there isn't "something scary" that's caused all this, but for right now, we agreed to take a "wait and see" approach over the next couple of months to see if Marek has another course of this. In the meantime, he switched his steriod inhaler, and we are keeping him on the other breathing treatments as needed, as well as the reflux medicine (so we don't change too many things at once). Marek's tonsils are enlarged, which could be contributing to the noisy "phone stalker" breathing he's had since he was about 5 months old. We return to the pulmonologist in February, and at that time Marek will also have a sweat test to rule out cystic fibrosis, but the likelihood of him having that is pretty low. If Marek continues to do better, we can even cancel that test if we so desire. If Marek happens to get worse again, our pediatrician will have to have a phone consult with the pulmonologist to determine a course of action until our follow-up appointment. At that point, he would involve an ENT doctor as well, and the two of them would explore his upper and lower airway under anesthesia and do various tests, different xrays, etc. Our collective hope is that Marek continues to do well, and that he will be able to come off the inhaled steroids at the end of winter. So, all in all, we just need to wait and see what happens.
We can't wait to start playing with our friends again! It has been hard having our social outings be running errands only. More good news - Marek is finally sleeping better, and we got the okay to go ahead and fly home to Michigan to be with family over the holidays, so we won't need to worry about driving all that distance instead. The doc said we obviously need to be careful to try and avoid sick people, especially in those tight quarters on the airplane, but there shouldn't be any other reason to not fly right now. Yay! Ellison has been sick this past weekend, and seems to be over it now, and as I mentioned, Marek has a nasty cold now, so we're hoping this means the kids will be healthy for our trip. Fingers crossed!
[December 5, 2011]
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