I want to start my return to blogging by doing a fast-forward replay of the last year, so that future posts are in context.
Since birth, Jack has struggled with severe reflux and these nighttime breathing events, which were generally attributed to the reflux. After medical therapy did not seem to be decreasing the frequency of these events (in which he would often turn blue), we were referred to GI specialists. They did a lot of tests and determined that yes, indeed, Jack has severe reflux. They also discovered he had a hard time drinking liquids and would often aspirate them into his lungs. There was concern about him aspirating reflux, which would make him very sick. They also thought the breathing events may have been caused by that. So, they recommended a surgery called a Nissen Fundoplication, which would make it so food and liquids could go down but not come back up. They also put in a feeding tube at the same time, primarily due to the risk of some side effects from the Nissen. The Nissen is not a small or inconsequential surgery. It was hard watching my toddler go through a painful surgery with a pretty long recovery time. It was equally as difficult finding out that the procedure failed within a week of having it done. So, six weeks later, we returned for round 2. Unfortunately, Nissen #2 also failed, which was baffling to our surgeon.
At the same time, when Charlie hit between 2-3 months old, he started to refuse to eat and his breathing became labored and he always sounded like he was congested, although he did not have a cold. He was a miserable baby. He cried A LOT, he never slept, and feeding was a nightmare. It could take us 3 hours to get a couple of ounces in him. It was a slow, torturous process of starting the bottle, him screaming and arching and choking and gagging and all over again. He also started having these breathing events. So, we went through a lot of tests and learned that he had a lot of the same issues, but a little more severely. So, he had the Nissen surgery and also got a feeding tube around 6 mos old. We were very surprised when, during our hospital stay post-surgery, that they took him off oral feeds altogether. We weren't expecting that and it took me a long time to come to terms with it. I still struggle with it. Charlie has not eaten anything by mouth since he was 6 mos old. He takes his feeds through his tummy and he wears a little backpack that continuously drips formula through his tube. I know that he wants to eat. He is our little vacuum cleaner...always scanning the floor for crumbs. It sucks. I wish I had a nicer term for it but it sucks. I am grateful for the lifesaving technology that keeps him safe but my mommy heart just wants to feed him.
A month after he had his first Nissen surgery, he had another (unrelated) surgery. It was a long summer. He also had a swallow study, which is where they look to see whether a child is aspirating when he eats. There was hope that the Nissen surgery may have helped in this regard. Unfortunately, it showed that it was worse, not better. On the study, it looked like the muscles were weak and just not doing what they were supposed to. Because these issues are highly uncommon and because we know had two kids with them, we were referred to a neurologist and a neuro-development pediatrician. There they did a bunch of tests and finally gave us a name for what was causing all of these problems: Worster Drought Syndrome (WDS). Worster Drought is very rare. It is a type of cerebral palsy. That means that it isn't progressive (meaning it won't continue to get worse) but they will always have weakness in the muscles that control the mouth, the tongue, the jaw, and the throat. Additionally, there are usually some mild gross motor delays associated with the condition, which we've seen in both of our kids (but mild!). The primary issues associated with WDS are speech difficulties, feeding difficulties, and reflux. In our kids, the feeding issues seem to be worse than the speech, although we have worked really hard on Jack's speech. It is the WDS that likely caused the two surgeries to fail for Jack.
In between all of this, we had a couple more surgeries, the bank Jared worked for failed, giving us a period of lots of uncertainty, we moved cities and Jared changed jobs...
When we got our diagnosis, I was pretty devastated. I could only think about the worst case scenarios and what their futures would look like. These things that we thought were temporary problems that could be fixed with a surgery were now permanent problems that could have wider consequences. However, I was blessed with a relatively sunny outlook and could only wallow in self pity for so long. :-) I realized my boys are EXACTLY how God designed them to be. I don't need to fix them. They are perfect how they are and while I, as any parent does, want to make their course easier, I'm also grateful for the opportunity we've been given to become stronger through these experiences. My boys are troopers, let me tell you. They take their challenges in stride and keep trucking along. They have not let these things slow them down (literally!) and they are a constant reminder to me of what what my outlook should be.
I realize this post is mostly filled with medical information and while our last year was filled with a lot of it, we did a lot of good living in there, as well.
So, that's where I've been the past 10 months since my last posts. In terms of where we're going...who knows? I've stopped guessing. This has been a great lesson in humility and learning Who is really in control. ;-)
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