Adenoids, Anxiety & Advocating

I feel like the past year and a half have passed in a blur. I had good intentions of getting back in a routine of maintaining my personal blog after our second son was born, but I was too caught up with my own health problems for a bit. Several ER trips and several surgeries later and I am thankfully doing much better these days. Our baby is now 1.5 and doing well. 🙂

Our older son however has been sick constantly. It’s been a nonstop battle, especially since he started preschool last year. The pediatrician kept telling me, oh kids just get sick a lot when they first start school since they aren’t used to being around so many germs. I get that, and I had heard that from so many people, but something in my gut kept telling me there was more to it than that. Prior to starting preschool, I had kept him quite active in various activities, taken him to drop in daycare when I was working, etc. It wasn’t like it was the first time he had been around other kids and their germs, yet the increasing frequency of his coughs, colds, sore throats, etc. was extremely concerning for me.

He also has always had trouble breathing even when he’s not sick, but it had been dismissed as just allergies or possibly enlarged adenoids. I was told that kids often have this problem and they usually outgrow it by the time they are 5 and not to worry. My husband had pretty severe sleep apnea in the past, and I recognized the sounds of the struggle to breathe when I would hear our son sleeping (my husband’s sleep apnea resolved after loosing a significant amount of weight). Our older son was a big chunky baby (over 9 pounds at birth, and actually big enough to literally dislocate my pelvis!), but as he got older, he’s gotten skinnier and skinnier. Now that he’s 4.5, I feel like his growth has slowed to a barely noticeable level over the past year, and he has even been losing weight over the past few months. People have started asking me if his brother and he are twins since they are getting pretty close in size. His brother is only 1.5 year old. His breathing problems have gotten worse and worse, and his appetite has diminished. His mood and his energy levels have tanked. He’s been grumpy and complaining about not feeling good all the time. He kept telling me, “Mommy my throat is sick” or “I have coughs” even when the pediatrician assured me there was nothing wrong (in those rare moments between all his constant viral infections). I have been filled with anxiety about not being able to get him to eat much, knowing he’s not sleeping well, and watching him get thinner and sick even more often. It got to the point where I could barely bring him anywhere since he was sick almost the entire summer. I knew that this had gotten out of control and this was not something he seemed to be outgrowing.

When we are new parents, we live with the anxiety for the baby’s first year, living in fear of SIDS. When they turn one, we breathe a sigh of relief, we can relax a bit at night now. With our older son though, even though I knew we technically shouldn’t have to worry about SIDS after he turned one, my worry about him stopping breathing in his sleep got increasingly more severe. I remember the first time we noticed him foaming at the mouth….he had fallen asleep in the car seat after a day in the sun (I think we had gone swimming? I remember him wearing a little baby sun hat). His chubby little cheeks swelled up as he struggled to breathe, and white foamy froth came bubbling out of his mouth. It looked like the top of a creamy latte spilling out of his little lips. I screamed at my husband to stop the car when I saw the foam in the mirror over his car seat. It never really got less scary but sadly that became the norm. I would try to wake him up if I saw the foaming get really bad, and we would try to comfort him when we would wake up in terror because he couldn’t breathe. He started having reoccurring nightmares about someone trying to hurt him when he was struggling to breathe.

We took him to a therapist for a while in large part because of the nightmares (and also because the prolonged lack of sleep was starting to contribute to some frustrating problems with attitude and lack of focus). The therapist tried to give me a guilt trip for having to cancel our appointments a few times because he kept getting sick (and also because I had to take some time off of our sessions to have three surgeries over the period of a couple of months!). She even went so far as to try to say that perhaps he was causing himself to get sick in order to get my attention. I was pretty livid at that point and we obviously did not return for any more appointments with her. I knew at that point that I had to start advocating for him, and get his breathing problems fixed, whatever was the cause, no matter what anyone said.

His nighttime breathing has been the worst. He struggles all night long, stopping completely often and foaming at the mouth a lot. We took videos of his breathing problems while he was asleep in various positions (it was worst when he fell asleep in the car seat…leaving me filled with anxiety, afraid to go on long drives). We met with the ENT/allergist who helped me significantly with my collapsed sinuses, deviated septum, and cartilage reconstruction of my nose. I had met with several ENT’s prior to finding him, and he was the only one who could actually identify what had gone wrong with my nose (some of the others had incorrectly told me it looked as though I had nose cancer). Our ENT was just as concerned as I was, and started a series of tests on the little guy to make sure that we really narrowed down the cause of his breathing problems. We took him for allergy testing, an overnight sleep study, and a brain study (the doctor wanted to make sure the head injury from his birth hadn’t triggered any neurological problems that were triggering his breathing problems). It felt like all of my free time this summer was spent driving him to appointments and tests, but it was all worth it since I finally felt like someone was taking his problems seriously and working to help us get this all resolved.

His sleep study confirmed what I’ve known all along…he has been suffering from obstructive sleep apnea. The test showed that he was stopping breathing completely every 10 minutes on average, and his oxygen levels hovered around 80% range for the entire night. He even slept “well” that night in comparison to most nights! I knew that there was no way I was going to tolerate a “wait and see if he outgrows this” approach any longer. We just had to wait a few more weeks for insurance approval and surgery center scheduling.

My anxiety reached a breaking point the other night when I realized I hadn’t heard his little struggling breathing sound for a while. His room is right next to ours and I have gotten used to listening for him at night. I didn’t hear him breathing at all and I panicked. He often sneaks into our bedroom in the middle of the night to cuddle with my husband, but he was out of town at the time. I looked around and didn’t see my son. Then I found him under the comforter in my bed, cuddled up near where I had my feet, like a little puppy dog cuddling my feet. Unfortunately I had been sleeping with pillows under my feet to take the pressure off my problems with my spinal cord (my nerves were especially raw since my husband had been gone for work a lot and I didn’t have him around to help me with the boys). I found our son’s face covered by one of the pillows, not breathing at all. I previously thought the worst feeling of my life was when they whisked him away after birth and brought him to the NICU to be evaluated by a neonatologist and a neurologist. The memory of those hours of fear and anxiety haunt me. But then when I saw his little face lying there not breathing, it was worse beyond measure. Thankfully he started breathing again quickly and I didn’t even have to do CPR or anything. My maternal instinct must have kicked in as soon as he hit a round of bad sleep apnea, or maybe his guardian angel forced me out of my exhausted sleep. Either way, I am incredibly thankful that I woke up and noticed something was wrong.

Today was finally his surgery day to have his tonsils and adenoids removed. It felt incredibly vindicating, like I’ve been waiting for this day for almost 4 years now. His throat was so swollen on the way in this morning that he couldn’t even fit his tongue in his mouth. It just hung out of his mouth like a little dog for about half an hour after he woke up. He’s in pain now and not feeling well, but we are all optimistic because the hardest part is finally behind us. He was so excited to go into his surgery because he knew how much that doctor helped me with my breathing problems, and he is excited to be able to breathe too. He woke up from surgery quite upset because he thought he would come out of surgery and right away feel better and able to breathe better. Poor sweet little guy. 🙂 At the hospital they told us they were all surprised by exactly how large his adenoids were once they removed them, and they were super nasty and filled with pus.

The doctor advised that we need to closely monitor him over the next week, especially when he is asleep, so I will be dropping offline for most of the week. I am just so happy that hopefully soon my baby will be able to breathe, sleep, and eat like a normal kid again. 🙂

A couple of cell phone pictures from the big day….excited to get prepped for surgery. In such good spirits! My brave little man. ❤

And his nasty adenoids/tonsils! So glad those nasty things are gone!

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