I just returned home from the doctor’s office with Apollo…I was completely fed up with the lack of information I received from the pulmonologist last month, so I decided to simply make him an appointment and discuss my concerns with our primary doctor. As it turns out, my doctor received the paperwork from the pulmonologist yesterday…yes a full 23 days after his visit! In the year 2011, it takes 23 days for my doctor to receive a report about an appointment?! Don’t get me started…
At any rate, our doctor said the glaring statetment on the report he was reading was “stridor appears to be improved the last four days”. As you recall, Apollo’s breathing was completely inaudible that day (an unheard of event for him) and had been quiet for the two or three days prior to the appointment. The wet, raspy noise reappeared within a half an hour of leaving his office. It appeared to the pulmonologist that while he would expect the reflux medicine to have already done it’s job (which is has in temperment, eating and noise) but perhaps things were still improving. That contributed to his decision to wait three months before taking any action.
When I asked about the weight, our doctor said he was so focused on that to rule out any other issues he might have. He does not (of course) anticipate weight gain solving the respiratory issues, but wanted to make sure he doesn’t have anything else and see if he could improve overall health with weight gain.
When I asked about what the obstruction might be, my doctor said, “Oh, just what he said to you at the appointment…maybe a tracheal ring or tracheal web…” Of course, he didn’t actually say that to me. I asked straight out what he thought the obstruction might be and he said he’d get back to that…but never did. For the blog readers who mentioned it, a vascular ring will be visible when they do the bronchoscopy…I asked about that specifically and that is one of the structural issues they are looking for. And it appears the bronchoscopy is a when, not if.
Which of course leads me to…what in the world are we waiting for?! Believe me, I was very forthright with my doctor. He knew I was not a happy mama. The pulmonologist says it’s “like he’s breathing through a straw”. He knows he doesn’t eat well, doesn’t sleep well and spends his days wheezing and puffing through life. If he knows something is wrong and suspects an obstruction, let’s find it and fix it! My doctor replied that there is nothing magic about three months.
“He probably said that because that seems like a reasonable amount of time to see if the stridor is improving, to see if he can gain weight, to rule out other issues if he can’t. And then there’s the fact that you drove 100 miles to the appointment. He probably didn’t want to ask you to come back in two weeks”.
When I explained about wanting to see him at the end of October then being told the first available appointment was November 22 he said, “He’s proably not even aware of the scheduling issues…or maybe he’s going on a two month sabatical”.
He encouraged me to get on the phone and beg, plead and insist we get him in sooner (and offered to add his voice in as well). The pleas (incuding being asked to be put on a cancellation list) will begin in earnest on Tuesday (I got home too late yesterday and Monday is a holiday). Because his issue isn’t immenently life threatening, no one is in a hurry. Anyone who lives in this house, however, can vouch for how much his quality of life is affected. And ours.
Every single bite of food in his mouth is a fight. I still remember that day, last March Tami, when you sucessfully fed Apollo yogurt in your van. Remember? Food on the spoon, into Apollo’s mouth, swallow. While eating has always been an issue, and I know that, you adapt to the way your life is. So I was shocked last weekend when a friend was over with her one year old foster babies (just about six weeks younger than Apollo). It was time to eat. She tied on bibs, mixed up some baby food, and Kalina fed her babies. Food on the spoon, food in the mouth, feed until full. It was very depressing to me to see how easy (read: normal) it was to feed a baby. Not in our house.
Imagine what life is like with a typical baby…now imagine if eating and sleeping is a struggle for that baby. Every day. Between those two it doesn’t leave room for much else. He’s 14 months old and every bite is a struggle.
And I have to be honest, I’m going a bit crazy between being up all night with a baby and fighting his feeding issues all day long.
The outfit Apollo is wearing in these photos belonged to me as a baby. My mom’s best friend bought it and it was my mom’s favorite outfit for me. She kept it all these years and here is Apollo sporting it. I’ll have to find out if she has any photos of me wearing it.