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.
Hi Renee!
I really think you’re on the right track with a bronchoscopy. My son, now 4 1/2, was born with a very audible stridor that turned out to be laryngomalacia, although they initially thought it was tracheomalacia. Between that, his severe reflux and a host of other issues, he was unable to eat much at all, and actually had failure to thrive for the first several months of his life.
During the first broncoscopy at 3 months, he had the laryngeal webbing removed, which helped enormously with the stridor and somewhat with the feeding issues. My son’s serious feeding issues remain to a much lesser degree today, but he’s finally in the 50th percentile.
I will tell you that it is very likely that Apollo will need some speech and/or occupational therapy to help resolve his feeding issues. Coley was in ST for months when he was about 2 – 2 1/2 because he was finally old enough and well enough to handle learning how to eat again.
When a child has had such pain and difficulty eating, it sets up a psychological/behavioral response of aversion that remains even after the physical causes for feeding difficulty are rectified. Feeding disorders have to be treated by someone highly specialized – not all ST’s or OT’s are qualified to do that, and it takes some post-graduate work to be able to treat feeding issues.
Best of luck with all of this, Renee and you will have to keep pushing for what you think Apollo needs. Some of Cole’s doctors were willing to wait it out to see what would happen when Cole got older, but we weren’t. He wasn’t growing, wasn’t sleeping, wasn’t eating and was clearly a child in distress much of the time. I was very, very firm with the doctors about what we wanted and when we expected it. Turns out that most of Coley’s doctors respect me enormously because I wouldn’t just take their first answer and go with it. If you have a doctor who does anything but respect you for pushing for Apollo’s best interests, change doctors. 🙂
Best of luck!
Michelle
Michelle, my midwife/naturopath actually mentioned the possibility of needing/benefitting from therapy to overcome his eating issues. Which is why I think we need to fix him NOW…not in a year or two when those issues are bigger and more complex and ingrained. *sigh* Sooo, so frustrated with this whole thing 🙁
Renee, I’m just curious, is there a particular reason why they aren’t recommending NG tube feedings, at least intermittently, to get some food into him? Is it because even if the food got in they don’t think it would nourish him? Or is he just not to that point yet? It would at least bypass his aversion to eating and get some nutrition in his tummy.
A lot of mothers are trained in placing and maintaining NG tubes for kids with feeding problems; it is very do-able.
I will contunue to pray for you all im so sorry they are making you fight and be pushy to get this done and on the road to making him better, I wish I was a millionaire I would fly you guys down here to Ok, when I pointed out my son retracting and not eating normally they rushed us around so fast to get things done it scared me but they got his tracheomalacia fixed,it breaks my heart how some doctors treat people especially babies.sending prayers-norma
How frustrating, Apollo and YOU need help right now! Hoping that wisdom will be spoken and you’ll find that exact help you need.
It can be so frustrating to be “dismissed” by doctors. You have every right to go in there and demand something be done. You have been very patient so far, and now it’s time for them to step up to the plate and work a little harder to help out this precious boy.
Continued prayers . . . for you both!
Bronchoscopy’s are not without risks, maybe that is why they are waiting. The wet, noisy, rattling and sometimes cough from RSV can last months. It is a very hard virus for babies to overcome and that is why it lasts long. A lot of things can aggrevate the lingering affects of RSV such as wood smoke, too cold or too hot air and strong odors.
You are the one who knows how your son is acting but I would seek another opionion before I would push for invasive procedures. If you seek out another specialist and he wants to wait to see if Apollo grows out of this then that is what I would do. It is common for pediatricians and pulmonary physcians to wait to see if a child grows out of something that is non-life threating because procedures do have risks and even being in the hospital will expose him to more germs, no matter how well the staff wash their hands, etc.
I hope I don’t sound discouraging because I am trying to help. I am a pediatric nurse and have seen the symptoms, parental concerns, and decreased weight gain that Apollo seems to be having. I would encourage you to keep asking questions but don’t push for procedures they the physicians are not ready to do yet becsause they do have safety reasons for waiting.
Lee- the wet, noisy, rattley breathing has been present since birth. They are not a result of the RSV. I know the bronchoscopy is not with our risk and is invasive but I also see my son suffering. Mealtimes consist of either crying and crying or simply a refusal to eat. He spends much of his day fussing and crying even at 14 months. He just doesnt have a voice to tell us whats wrong 🙁
I can’t imagine how difficult it must be. Hope you get to the bottom of it soon and things improve.