Apollo (13 months) had his appointment at the Pulmonology Clinic at Seattle Children's Hospital yesterday. As luck would have it, Apollo woke up four or five days ago and his breathing was suddenly silent. The wet, rattle-y sound he's had since at least last Decemember, had suddenly vanished. This would be good news, I suppose if he weren't headed down to Seattle because of his noisy breathing.
In reality, it didn't particularly matter.
The pulmonologist said he coud still hear the stridor and in fact, since the wet sound was gone, the underlying "wheeziness" was more apparent (to me, I'm sure the doctor could hear it anyway). The doctor observed that Apollo retracts somewhat when he is breathing, even just sitting on my lap. And this is with Apollo as heathly as he's ever been in his life.
After a thorough history and exam, the doctor said, "Basicly, what I see, is a kid who is breathing through a straw. He has to work way too hard to breath. It's like he's running in place all the time. That's the amount of effort he puts into breathing."
The doctor believes he can't consistantly put on weight (he's still less than his peak weight) because he is expending so many calories just trying to breath. And of course he's a very active baby. He wants him to put on weight at any cost. The doctor wants him on a "high caloric supplement".
As to why this is all going on, he didn't have an answer. He said a probable senario is: Apollo had an obstruction in his upper airway (trachea perhaps) which caused him to reguritate his food, which caused him to reflux into his esophogus, which caused damage to his esophogus and voicebox, which caused the wet/rattle-y breathing. The reflux medicine has taken care of the acid in his esophogus, it has finally healed, hence the now quieter breathing.
But none of that tells us why.
When I asked about the obstruction he said that we could do a bronchoscopy but "no one would be jumping to do that. We don't like to do it during flu season or when a person is sick" and he continued on about why not to do the procedure. It looks to me like it is much more invasive than the camera the ENT stuck down his throat and would likely require sedation if not anesthesia.
Right now the plan is:
* to have Apollo gain weight and get back on the growth chart (He is currently in the .54%. That's right, out of 100 babies, half of one baby would weigh less than Apollo. Don't you love percentiles ;)
* go back to see the pulmonologist if any thing changes/worsens
* follow up in three months
We then saw the nurtritionist who said she had a high calorie forumla he could try. I said he was allergic to milk and she responded that they have a great soy formula. I asked if there was anything non-soy (I avoid it for a variety of reasons) and she looked right at me with a smile and said, "Well, most people who are allergic to milk are allergic to soy too!" Then WHY did you just suggest I put my sick, underweight baby on soy if you KNOW he is likely allergic to it?! I always wonder in situations like this what happens to the parent who is less informed or less assertive?
So she brought in another formula that is made of who knows what. I could only read two ingredients on the can and those two were corn syrup solids and safflower oil. Yes, this high calorie supplement is, in fact, made up of 54% corn syrup solids. So, apparently fattening him up on pure sugar is just fine. He's suppose to drink two eight ounce bottles of this stuff a day!
Really? I feel like I'd be better off dumping 1/4 cup of raw sugar in his morning oatmeal if it's just about the calories....
The only other suggestion she has was to add olive oil to his food. That I'm totally fine with. It's high calorie and nutritious (Chuck went out and bought some last night).
I will be discussion the supplement with Apollo's doctor and making an appointment for him with my midwife/naturopath.
So, once again it feels like we are just sitting around waiting to see what happens. I've been told my baby constantly struggles to breath, but hey, we'll see how he feels in three months.
*sigh*
