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] ~ He Leaves an Impression…

Scene 1:

Jake and Cole are at their weekly gymnastics class (more on gymnastics and inclusion in another post…). It is the middle of the afternoon. I am standing in the waiting area, trying to keep Noah occupied. Noah is only 18 months old, and gymnastics falls smack dab in the middle of nap time, so keeping Noah entertained and happy is a chore! I am simultaneously trying to make sure Noah doesn’t get his hand stuck in the vending machine (which I believe he stole money out of, since I found a quarter in his hand as he was playing!) and trying to keep an eye on the class in an effort to make sure Jake is following instructions and not jumping into the foam pit without supervision (hypothetically speaking of course!). As my brain is firing in ten different directions, I hear a voice behind me:

“Are you Jake’s mom?”

“Yes!” I reply. “How do you know Jake?”

“I am a nurse at the Children’s Hospital, and I remember being his nurse one time when he was admitted. He is such a great kid!”

Jake hasn’t been admitted to the hospital for a year and a half! Talk about leaving a good impression…:)

Scene 2:

We arrived at the Children’s Hospital a week ago for a routine overnight sleep study for Jake. We were ushered upstairs with the other sleep study participants, and showed to our room for the evening. Two technicians came into the room together. One introduced herself as the person who would be our technician for the night, and I remembered her from a previous sleep study. The other one just came in to talk to Jake and say hi to him, and I remembered her as being a technician from an even older sleep study. They were both so excited to see Jake, and their comment to me was this:

“We fought over who was going to get to be Jake’s technician tonight”!

Impression left…

Scene 3:

This morning Jake had an ultrasound before school. He played happily in the waiting room until it was our turn to go in. As we were following our ultrasound technician into the room, another employee looked at me and said that she recognized Jake, but she couldn’t place from where. I suggested that we had been to the ultrasound place before, and perhaps she had seen him then. As we were coming out of our appointment, she was waiting for us.

“I know!” she exclaimed. “Were you guys at the Ups and Downs Walk this summer?”.

(Ups and Downs is an organization in Calgary that runs events for the Down syndrome community, and every year they do a family 3K run/walk to raise money and awareness.)

I replied that we were at the walk, and she excitedly exclaimed that she too had attended the walk with her little one!

There were hundreds of people at this walk, and this was a family that I was not familiar with. But still…Jake left an impression…

So far in his little life, all of the impressions that I have heard about have been positive. Oh how I hope that this trajectory continues. My prayer for Jake is that his impression comes not through his diagnosis of Down syndrome, but rather through the impact that he makes on the world, and the influence he is on those around him.

I’d love love love to hear what impression Jake has left on you! Comment, message me, email me, or let me know somehow! Maybe I’ll try and compile all the responses into a post…that’d be kinda cool!

 

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!!