Yes, it’s true. I’ve officially lost my “nice”. As in, nice mom, nice patient, nice person. Tuesday was an emotionally draining day for us- surgery on your child always is. Wednesday Apollo had such a bad choking experience at home that it necessitated a call to 911 and an ambulance ride to the hospital. What, you say? You don’t recall reading about that one? That’s because I still feel far too traumatized and upset by the experience to write about it. Suffice it to say, he is fine now.
Because of all the hustle and bustle, it took a couple of days for the anger to sink in. And for my “nice” to go away.
Here it is in a nutshell: my son is suffering and has suffered every day of his life. He likely has a congential heart defect that no one is in any particular hurry to find or fix. Chuck and I have been actively seeking an answer to why he was ailing for a year. That’s right. A YEAR. Twelve months. Numerous doctor visits and specialists.
Apollo was born at a healthy 8 pounds 12 ounces by emergency c-section due to a prolapsed cord. He was declared perfectly healthy at the hospital. Although when I requested (and reviewed) his medical records I found this: Cardiovascular revealed regular rate and rhythm without murmur, although subtle murmurs could not be detected given the respiratory sounds. When I pointed this out to my doctor several months ago, he said, yes, those were the exact respiratory sounds we are still hearing. They chalked those up to his precipitous c-section- but they never went away.
This blog is a beautiful thing. It gives me the ability to go back and review exactly what happened between Apollo’s birth and now without the fear of misguided memories or new emotions filtered in. I have it all recorded on these pages.
At ten days old I refer to Apollo as “an awful nurser”. At 2.5 weeks he had his tongue clipped (he was completely tongue-tied) which relieved much of the pain while nursing. At six weeks old I blogged extensively about his lack of sleep. At three months old I posted that he had taken three 2-hour naps (during the entire week) and was hoping he would begin sleeping better. At this point, he was at his peak weight (relatively) and health. At 3.5 months I posted that he was beginning to sleep better. At this point, we still had no idea that anything was “wrong”.
At four months old he weighed exactly 14 pounds and I posted he was “just getting over a cold”. He hasn’t been completely healthy or symptom-free since then. At 4.5 months old I wrote that he was waking more and night and I was going to begin working on it. At almost five months I write that he’s been sick for weeks and has lost weight. At five months I post he’s sleeping worse than ever and still sick.
At six months old he still weighed 14 pounds and I posted: On a whim last week I put some avocado in his mouth and he acted like I was killing him. Christmas day Iris gave him some squash which he sucked off her finger with interest…then puked up two minutes later (he doesn’t spit up so this is unusual).
Two weeks late I call him the Incredible Shrinking Baby and post the first pics of him screaming through a meal. Something we still struggle with. At seven months his weight was up to 14 pounds 2 ounces. He gained only two ounces in 3 months!
At eight months things seemed better. He was up to 15 pounds 5 ounces, though still not sleeping at night. At nine months he was 16 pounds 8 ounces and we thought our worries were over…A few weeks later I posted about how he screamed and cried during every meal.
At nine months old I posted this:
For those of you who haven’t met Apollo, he breathes very, very loudly. He fluctuates between sounding like Darth Vader like he has a horrible wet cold, or like he has croup. He sounds like this every day, even when none of the three happen to be the case. The doctor said on Monday he is convinced that his breathing is directly related to his weight gain and feeding issues. He believes he has some type of obstruction in his throat/neck and if we can solve that he will begin nursing/feeding/sleeping better. What that “obstruction” is, is anyone’s guess…but it’s a start.
That was ten months ago, my friends. TEN MONTHS. Our doctor suspected way back then an obstruction in his throat or neck…the x-rays were “normal”. The obstruction suspected by our doctor back in April was just confirmed last week in December!
On May 7th (at ten months old) I posted about our first visit to the ENT and how I wasn’t convinced that reflux was the source of his problems. And he had begun losing weight again. Shortly after this, I report he sat in his highchair for the first time and ate without screaming. We are hopeful at this point.
May 27th Apollo is in the hospital with Pneumonia and RSV. He was a very sick baby.
June 25th I write about his horrible breathing, his weight loss, the Dr. wants him tested for Cystic Fibrosis and I posted a photo of his completely erratic growth chart.
July 28th I posted this photo of a baby who’s obviously not a healthy boy.
August 9th, Apollo visited the pulmonologist down at Children’s for the first time. And this is part of what I posted about that visit: After a thorough history and exam, the doctor said, “Basically, what I see, is a kid who is breathing through a straw. He has to work way too hard to breathe. It’s like he’s running in place all the time. That’s the amount of effort he puts into breathing.”
The doctor suspected an obstruction in his trachea. A high-calorie diet is recommended and he was scheduled for a follow-up three months later.
September 27th I take Apollo to Children’s for a feeding evaluation. Basically, I am told that he has learned to be “scared” of food because the reflux has made it painful to eat. It makes me angry to type that now, knowing my boy isn’t just “afraid” to eat, but he’s got a narrowing in his trachea and probably can’t eat some days. And choked so badly that I had to call 911 last week.
October 17 I posted about his sleep being worse than ever and he is now wheezing after running around or when crying.
November 22 is the follow-up appointment with the pulmonologist who refers him back to the ENT for a rigid bronchoscopy. I post that the pulmonologist said: He still works too hard to breathe, retracts even when resting (it was visible while he was just sitting on my lap) and burns too many calories breathing. The doctor once again said his trachea is narrowed and it’s equivalent to breathing through a straw.
December 15 Apollo sees the ENT who agrees to do the bronch but wants to remove his enlarged adenoids as well. He says Apollo is “just a very allergic kid” and things should improve drastically with the removal of the adenoids. I post about our very frustrating experience here.
December 20 bronchoscopy and adenoidectomy are completed. Narrowing of the trachea is found, but the ENT considers it “mild” and “borderline” for a vascular ring. He recommends doing nothing since Apollo “isn’t showing any symptoms and is growing just fine”.
Here is the exact list of symptoms of a vascular ring from the Seattle Children’s Hospital website:
Pressure on the trachea can cause breathing problems, like these:
- Loud breathing (stridor) or working hard to breathe
- Wheezing or high-pitched cough
- Respiratory infections or repeated pneumonia
Breathing problems may get worse when a baby tries to feed or when an older child eats.
Pressure on the esophagus can cause feeding problems, like these:
- Slow feeding
- Trouble swallowing
- Trouble eating solid food
- Choking
- Gastroesophageal reflux
- Vomiting
He has every symptom on there except for the vomiting. And the ENT calls him symptom-free?!
And on the next page you find this:
Children who have symptoms from vascular rings and slings need surgery. During surgery, doctors cut the rings and slings so they don’t press on the trachea or esophagus.
Usually, this surgery is done through a small incision in the chest. It is not a very invasive surgery.
Your child may need medicine to help with their symptoms until surgery can be done.
If your child has vascular rings and slings but doesn’t have symptoms, your doctor will want to check your child on a regular basis to see whether any symptoms start to develop.
So you see, my friends, I am done being nice. I am done waiting. I have no intention of waiting until Apollo’s next appointment February 7th. We just confirmed that he doesn’t indeed have an obstruction and narrowing of is airway. My son has suffered enough. I’ve played the game their way for a year. Now I play it my way.
{Update: I woke up this morning and called the doctor’s office right away. My doctor had a cancellation at 10 am, so I took him in. Our doctor walked in and said (sarcastically) “Well, now he’s all fixed, right?” Thankfully, he had the report from Children’s right there. He is equally frustrated. He once again stated that the “noisy breathing” that the ENT is saying is from allergies and reflux, has been present since birth. He said there was no way we should wait until our February 2 follow-up and that he would do some research to find out what the best test is to confirm a vascular ring – what he suspected back in April when he sent him in for the x-rays. Then he plans to call the pulmonologist down at Children’s and ask him to coordinate the (likely) MRI and referral to a cardiologist. The doctors up here won’t do MRI’s on children as young as Apollo because it requires sedation. I am once again hopeful that we are on the right track.}
