Sunday, September 26, 2010

Sleep and Snarky

Thursday morning, Collin and I went to get the results of his sleep study from Dr. Snarky. I honestly had no idea what to expect, but was still surprised to learn that Collin has a lot of sleep apnea. I mean, a LOT. Like 28 apneas an hour on average. A few are obstructive apneas (like when people are snoring and do that scary sucking sound and you're afraid they won't breathe again) due to his low tone letting his airway collapse, but most are central apneas, meaning that Collin's brain is not effectively telling him to continue breathing. Not good. In addition, his oxygen saturation is very low at night, rarely staying above the preferred 94% and sometimes dipping into the 60s. Also not good.

Our options for fixing this are limited and not encouraging. The first thing to try was to repeat the sleep study exactly as before, but adding some oxygen. The hope would be that this would fix some of Collin's apnea and correct his low oxygen saturation. However, it ran the risk of taking away his brain's drive to breathe and consequently his ability to get rid of carbon dioxide. So, even though he would have enough oxygen, he would slowly accumulate carbon dioxide which could potentially result in brain damage if it got too high. Not what we need. If that's how Collin reacted, oxygen wouldn't be an option. The other options include surgery to remove adenoids and tonsils in the hopes of making his airway roomier - a big risk for a kid with seizures - and bi-pap or c-pap machines which work well for some people but pose major risks to a kid with low tone, retching problems, and a history of aspiration.

So, when we went into our sleep study Thursday night (we were lucky enough to get in that very night), I was more that a little nervous. It felt like if this didn't work, we had nowhere to go. Collin ended up sleeping quite well compared to his first study despite all the normal wires plus an additional oxygen mask, but I woke up at two in the morning and watched his CO2 monitor for 4 hours, thinking and praying all the while.

One of the things I thought about during these long, dark hours, was a conversation I had had with Dr. Snarky that morning. Now, I should preface this by saying that the doctor and I have come to a better understanding of each other and there is a seed of respect growing there. I doubt we'll ever be best buds, but at least we can speak openly with each other. During our conversation, I was pressing him with lots of 'what if' questions - what if this doesn't work? what if we try something else? what if we don't treat the issue at all? He stopped and became uncharacteristically somber and said, "Given everything, what have you been told about Collin?" It took me a second to figure out what he meant, and when I did, I didn't know what to say. He was asking about Collin's prognosis. Would he talk? Would he walk? When I didn't answer right away, he tried to elaborate by saying, "Collin is special," in a way that made it clear that he didn't mean special in an attractive way - not a special he would choose for his own grandchildren, "and for special kids, quality of life is number one." What did that even mean? Is that not true for all children? And then I realized that his first question had meant even more than I had interpreted. He was asking me to consider how much was 'worth' doing in this situation. In the Collin situation. When I haven't even been given a life expectancy (his words), when I don't even know if he will ever learn to do anything 'normal' people do (my words). How much effort does one expend in a situation like that? And for some reason I don't understand, I did not get angry. I just said, "No one has told us anything about Collin, because no one knows. And so we plan to do everything we can to make it possible for him to do everything he can." Dr. Snarky almost smiled -- it was either at this point or during my pushy questioning that he decided I was okay -- and said, "Okay, then. We need to get his sleep fixed."

Anyway. I was thankful and pleasantly surprised when Dr. Snarky called me the next afternoon to let me know the results of the study, knowing how anxious I was about it. The oxygen worked in that it dramatically improved Collin's sleep, his apneas, and his oxygen saturation. It didn't fix everything, but I will hear the full report at our follow-up Tuesday morning. I was simultaneously incredibly relieved and slightly sad. It has been so great having this time during which Collin wasn't depending on any machines (since the feeding pump left our house a few months ago). Knowing that there is another intervention we will need to learn and monitor is a little hard. I'm sure we'll be used to it in no time and there's nothing we wouldn't do to make things better for Collin, but it's just tough adding new problems and their solutions to an already complicated daily life.

Sunday, September 19, 2010

Hit the Ground Running

I had intended for our first week back from vacation to be fairly calm to help with the transition, but somehow it got away from me and ended up being packed and exhausting. We started Monday morning with our sleep medicine consult. I originally thought I was going to refer to our doctor as Dr. Grouchface, but instead I have settled on Dr. Snarky. He started off our appointment by asking me to switch seats because he prefers to sit where I was sitting. At first, I thought he was joking, but I was wrong. The rest of the appointment was also one long, unsuccessful attempt to tell when and whether he was joking. I did end up getting enough real information to determine that I thought the sleep study would be worthwhile and was a little surprised when they had a spot for us two days later. So, Wednesday night was our night. I was fairly sure it would be pretty smooth, because we would both be there with Collin, in a private room with no alarms and no interruptions.

Now someone, please please please, explain to me how you're supposed to get anything close to an accurate representation of a normal night's sleep in this get-up. I'm serious. The minute they tried to stick in that nasal canula, it was all over for Collin's sleep and the "mittens" (otherwise known as arm restraints that don't require you to strap your child to the bed) they put on him to keep him from pulling it out sealed the deal. He did not sleep. Which means we didn't either. And, of course, during the brief moments when we would all drift off from sheer exhaustion, one of the supposedly nonexistent alarms would go off or the nurse would come in to force the canula back into Collin's nostrils. Collin was so out of sorts the next morning that he was crying while they peeled off all of his probes and then feel asleep immediately afterward and slept all the way through the bloodwork he had to have at the hospital that morning, just to spite the sleep study people.

It took us a while to recover from that night, but Collin still did great during his aquatherapy session Thursday (rolled over and sat up on command!) and we're setting all kinds of exciting goals for him over the next 6 months.

Also, Collin's fancy-schmance chair finally came in this week after being hung up in German customs for several weeks. It is fully adjustable and high tech and I'm sure it will be wonderful for him...once we figure out how to use it.

This week is full of appointments (including a follow-up with Dr. Snarky to get the results of what we're calling the Sleepless Study) and therapies. But the thing we're looking forward to most is that we have finally hired help with our Michelle P waiver money and we have two fantastic ladies starting this week. I will be having help Tuesday and Thursday mornings and a few hours Monday-Thursday afternoon. It will be a bit of an adjustment, but I think it is going to be so good for all of us.

Monday, September 13, 2010


We just got back from a week of medicine-like goodness. We spent 7 beautiful days in a beach house on Hilton Head Island with my family and even though I already knew I was burnt out, I don't think I had realized just how much we needed a week off. The trip was the perfect balance of rest and exercise, fun and relaxation, eating out and staying in, having alone time and visiting with family. Other than some super-high-ketone issues, a reaction to the sunscreen, and a slightly leaky button, everything was remarkably smooth with Collin. He loved the ocean and the pool, but was pretty indifferent to the sand. He really seemed to enjoy the break and the new experiences, but he is also glad to be home.

Wednesday, September 1, 2010


I took Collin to school this morning and we hadn't been there long when the neurologist's office called. I left Collin with his teacher and excused myself to the hallway, because I knew it was going to be about the MRI and I wanted a minute to myself just in case. We've never had good luck with MRIs. Collin's first MRI was incorrectly read as normal, his second one showed low white matter, and his third, in January, showed a possible decrease in white matter from the previous one. This MRI was to determine whether we were facing further degeneration. We were praying that no change had taken place.

Change had occurred, though. For the better. Turns out, Collin's brain has started myelinating faster, which means that his white matter has INCREASED. Not decreased. Not held steady. Increased. Apparently, Dr. Awesome said that the MRI 'looked pretty good,' which, as you know, is comparable to someone else doing a big elbow-flapping happy dance.

We also had done an MRI of the lumbar spine because Collin was born with a fairly deep sacral dimple and there has always been question as to whether he has a tethered spinal cord, which would likely mean surgery at age 2 or 3 to 'release' the end of the spine. That MRI came back completely normal.

I went back in to the classroom and just sat there feeling completely overwhelmed with thankfulness. I was surrounded by all of these amazing moms and their sweet children in a place where Collin feels welcome and free to try things and I had this huge, glowing, happy news I was carrying around.

It's true that, in a classroom of children with various disabilities, Collin was by far the most delayed. Even though Collin's MRI is improved, it's nowhere near normal. I know that our situation would not be one anyone would choose. If I had been able to imagine that moment in the classroom back when I was pregnant or before, I would have found the very thought abhorrent and terrifying. And I guess that that's when it hit me that this is one of the biggest ways that all of our prayers for help these past couple of years have been answered. Nothing circumstantial was taken away - no hardship magically disappeared. But God spent these months reworking our hearts to bring us to the point where, instead of raging that we even have to worry about EEGs and MRIs or lamenting that Collin needs to go to a school for the visually impaired, we can truly experience contentment and gratefulness in our situation. Not to say we don't still have bad days or weeks. We do. But I'm guessing this is what it means in the bible when it promises that God will work out all things for the good of those who believe in Him - who keep looking for him even when it makes no sense or feels pointless. Not that everything will be smooth or that you will prosper in the way you hope/expect (coughJoelOsteencough). But that when things do go wrong, even very very wrong, it won't mean destruction via despair or pain. It will signal the beginning of beautiful things - maybe tough and unexpected, but beautiful nonetheless.