A few feel good notes before we jump into the sleep study summary! First of all, I have been really trying to focus on teaching Malachi things lately to figure out what he is capable of retaining. Time and time again he reminds me that he is not only ready and willing, but very capable of learning! This week we focused on being able to determine someone’s gender. I would give him the name of someone he knew and he would tell me if that person was a boy or a girl using his switch. It only took about 5 minutes for him to get it and he is a about 99% accurate! I took a video for you all:
Levi is a wild man. He has mastered the art of rolling which is such great news. But the wires make life a bit more challenging. Within seconds of me putting him on the ground to play he usually has one or both of his tubes wrapped around his neck. He also managed to pull the IV tower down on himself this week, so that is a new challenge added to the list. A very kind friend donated a feeding pump backpack to us so we may have to give it a try to see if we can eliminate one of those wires being accessible.
Levi is also learning some new syllables which is such a joy to hear. The “D” and the “G” have been his favorites this week.
Levi loves to put things in his mouth, which is great for getting rid of any oral aversions he has. This week while the boys were playing Malachi got his hand close to Levi’s mouth and he decided to borrow his thumb for a bit. Malachi thought it was funny and kept sticking his thumb in Levi’s mouth. What a great fine motor therapy exercise for Malachi haha.
Jake and I had the rare opportunity to go on a date this week! Malachi and Levi’s physical therapist offered to watch the boys so we could go out to dinner, and who is more qualified than someone that spends 1.5 hours with them each week? It was the oddest feeling for us to be away from them, but it definitely was refreshing to have some time for us.
And one more silly video for you:
On to the sleep study…
The closer we got to the scheduled appointment the more I started to realize the misery that was about to take place and that feeling of doom started looming over me. SOOOOO much of our lives is a mental game. My mind is always a battlefield; I have to continually remind myself to stay positive and just get it over with. So off to the hospital Levi and I went.
Our scheduled time was right around a shift change so the walk in was like a mini family reunion as we stopped and had conversations with doctors, nurse practitioners, and nurses who have taken care of one or both of the boys in the past. Another mental game for me….part of me loves that we know all these wonderful, life saving people and the other part of me is so sad that my boys have to know this “world”. That our paths have to cross with so many people in the medical field. It is hard to explain.
The mental game continued as I checked us in for the appointment. Here’s a helpful little tid bit for you…if you go to the hospital anytime after 5, everyone is required to check in through the same desk inside the emergency room. Children with the flu, bubonic plague, sleep studies…all sharing the same pens and counter space. We learned this lesson a few years back and it made me so upset that I called the hospital board and pleaded our case. I was shocked when I checked in two weeks later and they had actually listened to my worries and made a change. But unfortunately we were back inside sick land with a healthy child. These moments make me so anxious. And of course there was a computer error while we were checking in so the process took 20 loooong minutes, still sandwiched between some pretty sick looking children.
We were escorted up to the floor and headed towards our room. The mental game here went into overtime as we passed rooms I have stayed with Malachi in the past. I passed the ICU double doors that Malachi spent significant time in when he got the flu and pneumonia around his first birthday. I remember having to take a big deep breath each time before I walked through them. I passed the room we stayed in for 7 long days when Malachi developed infantile spasms, the room after heart surgery, the room for his overnight EEG….
My mind and emotions were at war. Then I remembered when Malachi was in some of these rooms he was one sick little boy, and here I was pushing my healthy yet fragile child through the hallways surrounded by very sick kids. I could feel my stability slipping away.
We finally got to our room at the end of the hallway and started the process for the sleep study. There were some miscommunications about what this study was to focus on…let me try to explain that a bit:
Neurology in Chattanooga: there is only one doctor in the hospital certified to administer and analyze sleep studies, and he is a neurologist. We are not a patient of this doctor nor have we ever met him.
Pulmonology in Chattanooga: this doctor is the one who actually ordered the sleep study. He is our local connection in case anything goes wrong with Levi and knows him well. We really trust this guy.
ENT in Cincinnati: they are VERY curious about the results of this study and will be using the information to determine the need for a trach. One of the big things they are wanting to analyze is his carbon dioxide retention. The results will be forwarded to them.
That information may help you understand our dilemma a bit better.
So the tech came in and explained that the neurologist (the one who has never met Levi) decided that this sleep study was to be done with Levi completely off of oxygen. This bothered me, as the goal right now is NOT to get Levi off of oxygen. We are wanting to see if the interventions we are doing now are enough for Levi to breathe safely.
In my mind, we were setting him up for failure/trach if we are removing all interventions and expecting him to pass. We KNOW his vocal cords are paralyzed and therefore are an obstruction to his airway. We KNOW when he is not on oxygen that his saturation dips down. We don’t need to hook him to an insane amount of wires and spend the night in the hospital to prove that. My biggest fear is that this test would be administered incorrectly (through the eyes of ENT and Pulmonology) and we would have to repeat this darn thing all over again. So I did the annoying thing and told them we would not proceed until they spoke directly with our pulmonologist.
The tech made some phone calls and after speaking with pulmonology they decided to do a split study, three hours off oxygen (or as long as he could manage it safely) and three hours on. That seemed more reasonable and it came from someone we know so I agreed.
It took almost an hour to get all the wires and leads on Levi who was a crying mess. She made me take his oxygen off during this time and I was SO WORRIED that he was using all of his reserve and would be starting the study with an already exhausted respiratory system. Once I was cleared to get my hands on him I strapped his oxygen back on and told the tech that he needed to recover before we would start the test.
Levi made it a whopping 45 minutes off oxygen and during that time he had 27 spells of hypopnea (slow and shallow breathing with a dip of more than 3% points in a short period of time…like 94% to 91%). Summary: that is not good. While he didn’t have any apnea (stop breathing) spells, this is still not good for his heart and his brain development. His oxygen saturation OFF oxygen hung around 93.
The oxygen went back on for the rest of the study and with that tiny 1/8 liter intervention he stayed at 98-99% for his oxygen saturation. We won’t get the results back for a few weeks but I studied that computer screen/numbers pretty intensely and he wasn’t having more than a handful of hypopnea spells each hour. The average was reading 10/hour by the time we left but that included the insane 27 recorded when he was off oxygen so I really don’t know what to think. I did not see any true apnea spells, but that doesn’t mean they didn’t happen.
And the BEST part is that his carbon dioxide retention was normal!! He stayed in the 35-45 range consistently. Anything above 50 is a little dangerous.
Levi was miserable. It was the most miserable I have seen him since the NICU and it broke my heart a bit. I couldn’t really hold him with all the leads and wires, and he was just so uncomfortable. He woke up after an hour of sleep and the crying started all over again. At 2am he projectile vomited all over himself and when I called the tech to see what we could do about changing him she said that there was nothing we could do unless we wanted to start the study all over again. He was wire/glue covered, puke covered, and extremely uncomfortable.
I guess we will find out in a few weeks what the next steps will be. I am not really confident either direction, and still a little anxious. I am not quite sure who will give us the results and what this will mean for Levi. We were both very happy at 5am when we got to leave.
We got home just in time for Jake to help with a bath and glue removal before he headed off to work for his first day back.
The rest of our week was a busy one with a youth group back to school party, an all day soccer tournament, and just plain ol’ life. I attempted a Walmart trip with the boys to get some food for Malachi and that didn’t last long. Malachi had a large meltdown in the middle of the pretzel aisle that he just couldn’t seem to recover from so we headed toward the checkout. He got a balloon out of it so he was happy haha.
So let’s talk about expectations. They really are getting me in trouble these days. I EXPECT Jake to get something done and it doesn’t happen the way I envisioned. I EXPECT Malachi to be able to eat his bottle in a specified amount of time. I EXPECT doctor appointments to be a certain number of hours. And when those expectations aren’t met I get so incredibly mad.
Maybe it is a control issue. Maybe it is just my personality. But my goodness do I have a load of expectations.
One of the things I have always been big on is the Golden Rule: Do unto others as you would have them do unto you. I remember learning the lesson when I was younger that this rule isn’t something that everyone follows and being so disappointed.
So are expectations good, bad, neither, both? I honestly still don’t know. But I do know that the Christian life is about surrendering. It is about releasing things- BIG things and small things- to God. And for me personally, that means my expectations for how I think God should intervene and act in my life need to stop.
Because with expectations comes disappointments, and that is where sin can easily slide in. I don’t know about you, but disappointment brews inside of me. I stew on it until it morphs into something ugly, like anger or bitterness towards someone or something.
Are expectations bad? No. Is disappointment a sin? No. But our reactions to those outcomes are what gets our mind into trouble. The Bible tells us if you hand causes you to sin then cut it off! Obviously that is not meant literally. But the concept certainly applies here. Expectations cause me to sin with my angry, bitter heart so I need to cut them off!
So for this week I am focusing my prayers and attention on simply trusting that God has my family’s future already drawn out, and undoubtedly it will bring him glory. It may lead to some earthly suffering- physically, mentally, and emotionally- but in the end His name will be glorified.
My only expectations this week will be ones promised to me in scripture. I have been talking to Malachi this week about the new body that God will have for him when he gets to heaven. I have talked to him about all of the fun things he and I will do, and how we will sing praises to God together. He smiles from ear to ear when we talk about God. What a beautiful and glorious pain free life that will be for both of my sons.
2 Corinthians 5: 2-5, 9
2 We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. 3 For we will put on heavenly bodies; we will not be spirits without bodies. 4 While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. 5 God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.
9 So whether we are here in this body or away from this body, our goal is to please him.
So this week, I will choose to focus less on expectations and more on pleasing the Lord. Isn’t that the way it should be?