How to be the Best Advocate for your Child

I always get a lot of questions about Hollis's g-tube and why he has it. Hollis isn't an unhealthy little boy, however at one time he was and it took awhile for us to find out exactly what was wrong with him. The process wasn't easy. As much as I wish I could say we came to find out about Hollis's diagnosis of dysphagia quickly, I can't say that. It was a very long road to diagnosis, a longer road to treatment, and an even longer road to recovery.

Disclaimer: I am not a doctor or a nurse or have no technical medical training outside of CPR. I however am the mother to a special needs child and often times I believe some of the best advice is given from first hand knowledge of situations. I do not provide any medical advice, however the advice I do give is not to be taken as medical advice. Always seek care from a licensed healthcare provider. And in the case of an emergency, always call 911.

BACKSTORY

Hollis was born 12 weeks premature. I've still yet to write his birth story... maybe one day, who knows. He spent 10 weeks growing in the NICU and at discharge he was just about as healthy as a baby could get. He did struggle with eating in the NICU, but not to the point to where they thought it was necessary to keep him there. He had to be fed very carefully and slowly, but there were no warning signs that he couldn't eat, just that he had trouble figuring out how to breathe and suck and swallow all at the same time. (This is very common for preemies.) I would pump and put the breastmilk into a bottle with a slow flow nipple, let him take a few sucks, remove the bottle from his mouth, let him catch his breath, and then move forward with feeding. It was a very long process, but he did great and he was growing! This lasted for a couple of months until Hollis became a pro at sucking, swallowing, and breathing and then we moved strictly to breast feeding.

THE BEGINNING

When he was about 6 months old I noticed his breathing was very raspy. At first it was just after he ate, but then it turned into being an all day thing. Naturally because of his birth history I got him in to see his pediatrician immediately. His doctor did a full check up and determined Hollis had bronchiolitis and prescribed an antibiotic to help clear up the bronchioles. We would see a change for a couple weeks, but then the raspy breathing would start again and we'd be back at the doctor. The cycle continued. Another diagnosis of bronchiolitis, another round of antibiotics. We tried an inhaler, we tried a nebulizer, but there never seemed to be a long term solution and we never saw enough change in his breathing to be convinced he just had bronchiolitis or an upper respiratory infection.

1. Follow your doctor's initial orders as prescribed. Take the meds, go to the testing, whatever it is they say is best, listen and comply. You have to start somewhere and I highly suggest listening to your pediatrician and following their orders without complaint. The hope and prayer is our children have something very minor that needs to be addressed, and often times our doctors initial treatment works!

THE CONSTANT QUESTIONS

This went on for three months and I was becoming concerned for Hollis's lungs. Within this time period I also had taken Hollis to the ER a couple times where he was diagnosed with pneumonia. At the ER they always did a chest X-ray, which showed damage on Hollis's right lung presumably from the breathing assistance he received in the NICU. The pneumonia diagnosis pushed me over the edge. I persisted and kept asking his pediatrician if we could do more to help him. (Just to point out, Hollis has a primary pediatrician, but in the case his doctor's schedule was booked, he would see another doctor within the same practice. All of his care was at the same pediatricians office and same hospital.) At first Hollis's doctors didn't think it was necessary to move forward with more testing. They were fully convinced this all stemmed from Hollis's prematurity. It was not abnormal for preemies to struggle with breathing especially during certain seasons. It was not abnormal for preemies to contract pneumonia or other lung illnesses and overall Hollis wasn't presenting as an extremely sick baby. His breathing was labored, but not to the point of oxygen desperation. I knew something wasn't right, but the doctor's were going off of symptoms and how he was presenting. I don't fault them for this. I know they were "going by the book." I fully believe many pediatricians don't deal with severe issues on a regular basis, so I kept asking.

2. After you have followed your doctor's original orders and you aren't seeing a significant change in your child's behavior or symptoms over time, begin keeping a journal to report back to your doctor. Never stop asking questions or asking for referrals. I don't suggest moving pediatricians unless you feel they are doing absolutely nothing, but as long as they are continuing to ask you to come in for follow up appointments, stay with them and keep asking questions.

Eventually our doctor suggested we have a swallow test to rule out aspiration. Hollis was a chunky little guy. He loved to eat, ate often, and gained weight well. The majority of children with swallowing issues have low weight and aren't growing, so (in my opinion) this test was more to pacify me and my constant questions.

The swallow test results immediately determined Hollis was aspirating and what was even more scary is his body wasn't reacting. Silent aspiration was his diagnosis. When Hollis swallowed, the food was pouring into his airways causing the food to collect in his lungs. In most children and adults, when this happens, we cough to expel this. But Hollis's body wasn't reacting so other than the raspy breathing (which was milk sitting in his lungs), he had no other symptoms.

3. If more testing does determine something more is wrong with your child, be kind. Doctors are human too and while they do want our children to be well, they also deal with so much minor sickness day to day. Sometimes major issues have the same symptoms of common issues. Just continue to move forward with your child's care without placing blame.

THE RESULTS

We were referred to a pulmonologist to check out Hollis's lungs. While we knew Hollis had an issue with swallowing, we also knew it was directly affecting his lungs and we had to make sure those were okay. The first test ordered was an upper airway evaluation. An ENT was called into look at the makeup of his throat, to see if anything wasn't fully developed, under developed, or abnormally developed. The second part of the test was to to clean out his bronchioles. This test was more invasive. They had to put Hollis to sleep, however the test went by very quickly, and he didn't have to stay overnight. The results showed they makeup of Hollis's throat was totally normal. His esophagus was bit narrower, but they didn't believe anything needed to be done to enlarge it. It did however show he had staph infection in his lungs, and this occurred due to the aspiration.

4. If your child does get a diagnosis outside the realm of a common illness, seek specialized care. Your pediatrician should be more than willing to give you a referral to a specialist that can offer your child the care the need. Serious issues need to be discussed far beyond your pediatrician.

Our first course of action was to thicken Hollis's food. In most children that struggle with aspiration, a thicker fluid will help with the food spilling out of the esophagus. We tried several different thickeners both over the counter and prescribed, but Hollis couldn't swallow them. He would get choked while trying to swallow and end up eating nothing at all. This factor lead our pulmonologist to ultimately diagnosis Hollis with severe dysphagia also known as difficulty swallowing.

We couldn't let Hollis keep eating orally knowing his lungs would continue to become infected so the next option was to place a feeding tube. They initially placed a tube into his nose for feeding which allowed time to clear his lungs while learning the ins and outs of tube feeding. Once we determined Hollis's lungs were clearing and breathing was becoming easier, they placed the g-tube directly into his stomach for a more permanent solution.

ON GOING CARE

From start to finish it took us 9 months to determine what was causing Hollis to breath improperly.

March 2016 - first pediatrician appointment regarding breathing issues

June 2016 - NG tube placed

November 2016 - g-tube surgery

Come to find out the breathing issues were a bi-product of the real issue which was swallowing. Once the swallowing issue was "fixed" his lungs cleared up and he has yet to have another respiratory infection.

5. Don't diagnose your own child. Yes, we ultimately are their advocate, but even if you do know exactly what is wrong with your child, you still need the help of a healthcare provider. It is impossible to NOT Google symptoms. I've tried and failed many times, but don't come to the conclusion you know exactly what is wrong. In saying that, if you come across something you are curious about definitely bring it up in conversation with your pediatrician, but understand they hold the key to learning more.

Hollis's treatment with swallowing is still ongoing. Unfortunately swallowing involves way more than just the muscles of the throat. Medically Hollis is able to swallow. All tests have come back normal, however he is now almost 3 and hasn't swallowed consistently in 2 years. Eating orally is foreign to him, so we are slowly introducing foods. Its a long process and we are learning patience along the way. We still get care regularly from out team of specialists, but I do a TON of care at home on my own.

I truly believe as parents it is our job to speak for our children when they can't explain what is going on to them. Our day to day interaction with them allows us to see when they are acting differently. I also believe we have to trust our healthcare providers are doing everything they can to care for our children. Often times this isn't immediate. It takes time. Even with the delayed referrals and testing and ultimately finding out Hollis was in fact sick, we never left our pediatrician. I trust our practice and our pediatrician fully and believe he was treating Hollis the best he thought. In the end however it did take my mother's intuition and advocacy to move Hollis's medical care forward.

#preemies #dysphagia #advocateforchildren