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.

 

[31 for 21] ~ 11 is Amazing…

Happiness.

Today’s word is happiness (again!).

I have been wanting to post this for a while, so although it is not brand new information, it is still pretty incredible. For those of you who have been following my blog for any length of time, you will remember that I have written a few times about Jake’s issues with Obstructive Sleep Apnea (OSA).

This post explains our journey of getting a diagnosis of OSA.
This post speaks to the beginning of our saga with the CPAP machine (this is the breathing machine that Jake uses at night to help combat OSA).
This post talks about the surgery Jake had to remove his tonsils and adenoids, in an effort to help him breathe better.

The short version of the story is this:

After a sleep study at the Children’s Hospital back in March 2014, we received an official diagnosis of Obstructive Sleep Apnea. 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 would 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?'”. Because of this, Jake was expedited in the line to have his tonsils and adenoids removed. He went in for surgery at the end of May, and then in mid-August we had a follow-up sleep study, to once again monitor his sleeping patterns and see if the surgery had made a difference.

And here’s the amazing news…

Before the surgery, the number of times Jake stopped breathing in an hour was 94.
After the surgery, it has gone down…

…to 11!!!!!

94 to 11. To me, that is incredible.
He still needs the CPAP machine at night. 11 is still considered “severe” sleep apnea. But to me, 11 is amazing:)

*This is how I feel about the news*

 

Good Riddance…

A quick story for you this afternoon, and then some pictures of our littles:)

It was a cold, snowy January afternoon when it arrived on our doorstep.

Jake had just been released from the hospital after being admitted for pneumonia.  His release, however, was a conditional one.  The condition: he had to be on oxygen for napping and sleeping, since he couldn’t quite keep his oxygen saturation levels up to what they should be.  (Side Note: Hindsight really is 20-20.  It turns out that the reason for the low O2 levels had nothing to do with his lungs or his sickness, but rather with his Obstructive Sleep Apnea)

It was a cold, snowy January afternoon when it arrived on our doorstep.  All of it.

The oxygen machine.  The 25 foot cord.  The nasal prongs.  The humidifier.  The portable tanks with carrying case.  The adhesive pads.  The whole 9 yards.  It was a new reality for us.  It was work; teaching Jake how to wear it, how to keep it on, trusting that the oxygen was doing its job and keeping Jake’s little body saturated with oxygen at adequate levels.

Fast forward to last week.  Since we started the CPAP with Jake, we wanted to see how his oxygen saturation levels were doing while on the CPAP machine.  We brought home an oximetry monitor, which reads Jake’s oxygen levels.  We put it on all night long, and went for a follow-up to see the results the next day at the Children’s Hospital.

And…we were DISCHARGED FROM OXYGEN!!!

The CPAP machine is working so well that Jake’s average level throughout the night was 97%!  (Compared to an average of about 75% with no CPAP).  They were so pleased with his results that they told us to call our oxygen provider and get them to come and pick up their equipment.

It was a cool, windy April afternoon when we finally got to say…Good Riddance to the oxygen machine!!!

And that was the exciting news in our house last week:)

 

 

Miracles Really DO Happen…

…and the following story is living proof of the miraculous!

Those of you who follow my blog will know that we have been on quite the journey lately with regards to Jake, his breathing issues, his sleep study, and consequently his diagnosis of Obstructive Sleep Apnea (or OSA).  If you want to read more of the back story, you can find it in this post.  The take-away from those few weeks of craziness, doctors appointments, specialist appointments, etc… was a brand new CPAP machine.

If I may sound technical for a moment or two…

CPAP is short for “Continuous Positive Airway Pressure”.  Basically, the purpose of a CPAP machine is to use air pressure to keep Jake’s airways open at night, thus allowing him to be able to breathe, to be able to have a restful sleep, and to be able to ultimately experience the growth and development that he has been sorely lacking, due to the sleep apnea.

The CPAP machine works by forcing air pressure into Jake’s nose.  He wears a mask with a seal over his nose.  The mask is attached to a headpiece, that keeps the mask on and allows us to tighten it to ensure a good seal.  The mask is also attached to a giant hose, which connects to the actual machine.  The air is pressurized, humid, and warm, in order to be as easy on his lungs as possible.  This is what the mask looks like (sorry about the poor picture quality…):

 

If I may sound emotional for a moment or two…

The very first night we tried to put the CPAP on Jake, we had a success rate of about 3 hours.  Which apparently is amazing for the first time!  We waited until he was asleep.  We dragged his tired, restless little body out of his crib, fitted the mask gently onto his face and over his head, and turned on the pressure.  He resisted for a moment or two, but he was half-asleep, so the resistance was quickly overcome by exhaustion.  We picked him up, put him back in his bed, lying on his back, and waited…

I went in about 17 times during those 3 hours.  I watched with baited breath.  I opened up the flashlight app on my phone, and sat on the floor beside Jake’s crib, flashlight trained on his chest.  And as I sat there cross-legged on the ground, staring through the bars of the crib at my sleeping child, I wept.  I cried tears of joy as I watched Jake stay in one position for over an hour and a half (he is usually restless, because every time his airway closes, he subconsciously switches positions to try and open it).  I shed tears of happiness as I watched his chest rise and fall, rise and fall, rhythmically with each rise of his chest representing a deep, life-giving breath of air.

Oh the emotions I felt!  My child was breathing.  Was resting.  Was sleeping peacefully.  And was doing all of this for one of the first times of his life!

If I may describe the miracle, for a moment or two…

When we first got the CPAP machine, our Respiratory Therapist told us that it would be a long, hard journey.  She informed us that it takes most children a month or two just to get to the point where they can put on the mask and keep it on their face for a few minutes.  She made us aware that we were probably looking at a few months time before he would be wearing it at night with any sort of regularity.

We started getting Jake used to the mask by putting it on just before bed, while he was watching an episode of “Elmo’s World” (his favorite show in the world).  After a few nights, he seemed to be getting accustomed to it, so we proceeded to put the mask on and turn on the pressure.  He still seemed fine, so we decided to give it a try at night.

That first Monday night, as I described above, was amazing!  He wore it for 3 hours before he woke up and cried.  We were elated!  The following few nights he wore the CPAP anywhere from 1-3 hours a night, and we were thrilled.  And then, the miracle happened.  The 5th night of Jake wearing his CPAP machine, something clicked for him, and he wore it all. night. long.  And not only that, but he was worn it all night long EVERY NIGHT since!!

It’s not perfect.  We are still figuring out what setting will work best on him.  We are still waiting until he falls asleep to put it on.  He got his teeth into it one day and bit a chunk out of the gel that helps create the seal!  We still go in to check on him at night and occasionally find him sitting up, or in strange positions (classic signs of sleep apnea).  But the difference we have seen already is amazing.  He looks more rested.  He is gaining weight.  He naps less during the day, and has more energy.

So I stand by my assessment.  Miracles really DO happen!

 

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!!