About 3 weeks ago, the whole family came down with a cold. Within a few days, everyone was over it except for Drew. We had been told from the get-go that he wasn't any more susceptible than any of the other kids to getting a cold but would almost certainly have more trouble getting over it, and thats exactly what happened. So he was put on oral antibiotics at home to try to kill any bacteria that may have gotten in there and was causing this phlegm to linger. After 10 days [give or take] with no audible improvement we took him back to the doctor who decided that IV antibiotics would be necessary to kick whatever was causing this horrific sound.
So into the hospital we went. Drew's doctor wasn't on service in the hospital so we had a different doctor from the clinic. He said that it sounded like bronchiolitis. Based on their assessment from listening to him breath and looking at his vitals and general demeanor, the general consensus from the team (doctors, fellows, residents and nurses) was that a few days on the IV antibiotic would make him sound a million times better. That was on Tuesday. By Friday he sounded no different. The kid was happy, but sounded like he had a giant frog in his throat that he just couldn't clear.
So the weekend came and it brought with it a new doctor. Because the antibiotic didn't seem to be making any difference, he started to explore other options. He thought maybe that Drew just had asthma, but that was ruled out when the Albuterol breathing treatments didn't seem to make much of a difference. They thought that maybe there was some bacteria in his lower airways that they were missing that might be resistant to the antibiotic that he was taking, however this seemed like an unlikely explanation as when they swabbed his throat it showed nothing but a little staph and when tested found that it was not resistant to any antibiotics. The other thinking was that maybe it was anatomical - some abnormality with his throat or airways.
On Monday morning there was another "changing of the guards". This doctor listened to him and to all that I had to say about the sounds he was making. He listened to the nurse read through the reports of everyone else's assessments, and at the end he said that he too thought it would something anatomical, but whatever it was we were going to get to the bottom of this so if we could just hang in there and bear with them for a little while longer we would get this all sorted out. He ordered a scope of Drew's upper airways from an ENT doctor (ear, nose, throat). They were looking for something called Laryngomalacia. Basically, its floppiness of the valves over the voice box which creates a noise as the child breathes in which is usually high-pitched and is especially heard during feeding. Its apparently common in infants and causes no harm, and is something that they outgrow as the cartilage around the vocal chords matures. The best part - it has nothing to do with CF!
This all seemed to make sense and so we were anxious for the ENT doctor to arrive to do his scope and solve this mystery sound that was being pegged as an illness. Around 11am the ENT doc arrived and stuck his little camera up Drew's nose and down his throat (that was a lot of fun) and the doc says............everything looks fine. ARGH! I mean I guess thats good that there's no issue with his voice box, but now what? What the hell is going on?
I called our nurse and asked to have the doctor paged so we could discuss what would happen next. Around 2ish the doctor came back and the first thing she said was "We're sending you home." (What? Why? Did you figure this out?) She said that they had ruled out anything bad, that they didn't think this was a CF bacterial infection and had collectively agreed that this was just a virus that he was going to need to work through. They didn't want to do a bronchoscopy because 1)there are risks and 2)he can't be on antibiotics which would mean keeping him in there for a few more days sans antibiotics so that they could get a clean sample of the mucus from way down in the lungs to figure out what crazy bacteria was causing this cough. Rather, they would like to see if with a little more time this could work itself out. They wanted to put him on a 3 day treatment of steroids to see if reducing some of the inflammation would allow for this phlegm to clear, send him him, and see him in a week. If by the end of the month nothing was better then they would go ahead with the bronchoscopy.
Alright! I guess if theres nothing more they can really do for him in the hospital we would just go home and play this out! So while the doctor is writing up the discharge instructions, another ENT doctor came in because the first guy was apparently talking about the mystery with the rest of his gang, and she had some other thoughts. She thought maybe it was Tracheomalacia - basically the same thing as Laryngomalacia but affecting the trachea rather than the voice box. Again, its nothing of huge concern and it fixes itself 99% of the time as the child grows (please dear God let us fall into the 99% if it is infact what is going on). Unfortunately the nose scope doesn't extend into the lower airways so the only way to determine if this is what is truly going on is the bronchoscopy. The doctor said that if it weren't for his cold we may not even hear anything, but that the thick CF mucus was getting sort of hung up on the airways, and because of the looseness or floppiness of the trachea, a cough wasn't getting everything out, hence the never ending frog-in-the-throat sound. She wants to wait until hes better before they do the bronch. I asked why, if shes so certain that this is the problem, we needed to even do the bronch and she said so that we know this is what the problem is rather than struggling through this mystery again next time he gets a cold.
I agree. I would hate to go through this again, another hospital stay, another IV antibiotic treatment, if really the problem weren't a CF related bacteria, but at the same time I hate having to do a bronchoscopy. It will be an outpatient procedure, but he will have to get put out for it and be put on a ventilator while they look down into his lungs. Since they will be down there, they will also collect a mucus sample to test just to make sure that there is no harmful bacteria.
So with that, we were sent home! Monday morning we thought we might be there for a while, and by Monday night we were all home. I spoke with a few of the CF docs and nurses and they all agree that the diagnosis of tracheomalacia seems very logical and appropriate. It makes sense to me that they had trouble diagnosing it as that because they are Pulmonologists, not ENTs, and therefore listening to and treating for a problem with the lungs when really it seems to be a problem with the throat. We have an appointment with the ENT doctor on Thursday so she can see him after hes finished with his steroids, when perhaps a little less inflammation and cough exist, so she can reevaluate and see if she still feels this is whats causing the problem.
We were told that if Drew didn't have CF (someday i hope!) he wouldn't have even been in the hospital. They really just need to treat aggressively when there are signs that bacteria is present to prevent lung disease from rearing its ugly head. Many kids have tracheomalacia and are diagnosed for a number of reasons. Drew just happens to have this extra special thick and sticky mucus thats clinging around his trachea that is producing this sound leading them to believe that this is what the problem is.
But we're home. Everyone is asleep and I had a few minutes to write about it. Thanks for all the thoughts and prayers over the past week. Hopefully the ENT figured this out. Even more hopefully, it will be no big deal and in no time he will sound just like you and me!
So glad you all are home!! Hope the ENT can figure it out...Rest and take care mama!!
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