We Are On Vacation…But Not The Kind You’re Expecting!

Tuesday mornings in my world are initiated with a whirlwind rush of activity, noise, and stress as I round up three munchkins who all have minds of their own and do not like to do things on a schedule, and try and get them out the door and into the car in time to make it to preschool. I often feel harried, haggard, and can feel my frustration levels rising as I am trying to wrangle all the kids into coats, shoes, hats, car seats, you name it.

With coffee in hand, however, the day slowly improves, my heart rate drops back down to the normal range, and my stress meter normalizes again as children are hugged and kissed goodbye, and the morning becomes a time I have come to cherish with just Noah to keep me company.

This morning Noah and I were taking a jaunt around Costco. We were lazily meandering through the aisles, looking at all the toys, perusing the book selection, and chatting away to each other, when the phone rang.

I looked down to see who it was, and it was the number that always comes up when someone calls from the Alberta Children’s Hospital. I answered the phone, and was greeted by someone from Sleep Services, calling to follow up regarding Jake’s last sleep study (which was at the end of September).

{SIDE NOTE: At the last appointment I had with the Sleep Clinic, they warned me that Jake’s carbon dioxide levels had been elevated for the past couple of sleep studies, and that they were going to use the study in September to decide whether or not they should switch him from a CPAP to a BiPAP. Basically a CPAP is one continuous pressure, where a biPAP is a mixture of two pressures, essentially doing the work of breathing in and out, and therefore helping to eliminate more of the carbon dioxide that needs to be eliminated while sleeping.}

It was this context that was forefront in my mind when I answered the phone.

Imagine my utter shock and surprise, then, when I was greeted with a very different conversation.

“Jake is going on vacation”, she told me. “He’s going on a CPAP vacation”!

She then went on to explain that Jake’s last sleep study had been normal! Not “normal for kiddos with Down syndrome”, not “normal for Jake but still severe for the general population”, just simply normal!

His AHI (number of times he stops breathing in one hour) was 1.2. A typical AHI is approximately 1.5!! (and just as a measure of how incredibly amazing 1.2 is, remember that the first sleep study he ever had done his AHI was 94!!)

His oxygen levels were good. His carbon dioxide levels were good. His AHI was actually higher (1.8) for the part of the night when he was wearing the CPAP machine then for the part of the night when he was just sleeping normally!!

So, Jake gets to go on a vacation from the CPAP machine for 6 whole months!!!

They are going to do a repeat study in 6 months, to follow up. They said that sometimes CPAP therapy actually helps bring down inflammation in the airways, and so they don’t know what will happen in these next 6 months. Perhaps without the use of the CPAP machine, his airways will become re-inflamed and he’ll have to start back on the CPAP again. Or perhaps he has grown to the point where he won’t need it for the foreseeable future. What lies ahead is uncertain, but one thing is certain for now…

We are on vacation baby!!

Seriously the best news I’ve heard in a long time:)
This is us, celebrating with ice cream after preschool!

 

[31 for 21] ~ Breathe in, Breathe Out…

Heartache.

Today’s word is heartache.

Have you ever had that experience?

The experience in which, in the midst of your version of normalcy, you have a moment. And in that moment you find yourself capable through some metaphysical means, of lifting yourself out of the moment, and looking down on it from above. It is just a glimpse, a glimmering of an instant, and then you are back to being fully present in the moment. But for that split second, you see your situation from a different angle.

I have those experiences every so often. The most powerful one I can remember happened on the day the doctor came into my hospital room, sat down in the chair in front of me, and told me that they were testing my precious first-born son for Trisomy 21, or Down syndrome (you can read the whole story HERE).

As it happens, I also had one of those moments last night.

It all comes back to the CPAP machine. When we first got it, Jake took to it really well. Most likely that was because his breathing was so bad that the CPAP was literally working a miracle in his tiny, 3 year old body. Then his tonsils and adenoids came out, and hallelujah!…Jake could breathe at night! The number of times he stopped breathing every hour dropped from 94 (a crazy high number) to 11, which in itself is a small miracle.

The problem we are having now, however, is that He Will. Not. Keep. It. On. Anymore.
My best guess as to why is that while he still needs it, he does not feel like he still needs it, because he has improved so drastically on his own. And now it is becoming a battle. Every night we put it on after he falls asleep, and every night, about two hours in, he starts trying to rip it off his face. We have been going into his room to put it back on a few times every night, and every night as he is fighting me, he looks at me with these big doe eyes, as if to say “why are you doing this to me?”.

To us, this is our version of normal. This is our reality, this is what we do every day of our lives. But last night, lying in my child’s tiny toddler bed, curled up next to him, stroking his hair and trying to get him to relax and breathe with the CPAP instead of fighting against it, I had the experience. I lifted myself out of the moment. And what I saw was heartbreaking.

This is not normal. It shouldn’t be this hard. Breathing should come naturally. Just breathe in, and breathe out. No machines, no coaxing, no help. It should just happen. For Jake, it doesn’t. And that, my friends, breaks my mother’s heart.

 

When IS He Breathing?…

In a conversation with our Respirologist yesterday, as we were discussing the results of Jake’s recent sleep study, she posed the question to me, “So, when IS he breathing?”.  My heart sunk.  After all, hearing a doctor say this to you is never good news.

Let me back up a few days, and explain where she was coming from, and where we are headed from here!

A few days ago, we had a sleep study for Jake.  For the sake of those who don’t know what a sleep study entails, here are the gory details: you take your child to the hospital, to “sleep”.  They hook your child up to a million monitors (okay, I think it was actually about 35, but it felt like a million!).  Your child has wires, probes, tubing, stickers, monitors, etc… hooked up all over his tiny little body.  To the point where you can hardly recognize that it is your child.  Then they turn off all the lights, leave the room to monitor him from another room, and you are left with a very distraught, very uncomfortable, very sleep-deprived child (because by the time they are done hooking up the monitors it is two hours past his bedtime) that you can’t pick up and rock to sleep because the wires don’t reach far enough.  So, you fight your hardest to help him get comfortable and go to sleep, which happens around 11pm.  Then, after a very restless sleep, in which the techs come in about 47 times to adjust wires, they come in and wake you up at 6:00am, and kick you out!

The purpose of the sleep study was to get an idea of Jake’s sleeping habits, and to be able to confirm an official diagnosis of obstructive sleep apnea, or OSA, (which we were pretty sure that Jake had).  With this official confirmation, and the information passed on from the sleep lab, we hope to be able to create a plan going forward for how we can remedy this.

At the end of your study at the sleep clinic, they tell you that it could take up to 4 months to hear the results of the test.

I heard back from the doctor yesterday.  Four. Days. Later.  Not 4 months.  4 days.  That is never good news.

The sleep study gives lots of information.  But at the end of the study, they assign a number, called the “Apnea-Hypopnea Index” (AHI).  Put very simply, this number represents the number of times that the individual stops breathing in one hour.  According to our Respirologist, anything over 10 they would consider to be classified as severe sleep apnea for someone like Jake.

Jake’s number was 94.

This basically means that every 45 seconds or less Jake stops breathing.  All. Night. Long.  It was as our Respirologist was explaining this number to me that she stopped to add, “in light of this information, my question is ‘when IS he breathing?'”.

At this point, you can cue the tears.  And the heartbreak that came with the realization that Jake is much more severe than we originally thought.  And the grief that my not-yet-3-year-old has something else to deal with.  And the frustration that rears its ugly head every time we encounter more hurdles with Jake.  I am disheartened.

Don’t get me wrong, I am also thankful.  Thankful that we advocated (read between the lines: pushed very hard!) to get this done sooner than later.  Thankful that there is a solution – something called a CPAP machine (more about this later).  Thankful that modern medicine has given us effective coping strategies, and thankful that we caught it early, and now we can move towards a solution that will help Jake grow and develop at a more optimal level than he has been.

There is much to be thankful for.  But when a doctor questions when / if your child is breathing at night, you can take a few moments to grieve.

And this pretty much sums up how I feel about this new turn of events!!