How to Prepare for a Sleep Study

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Jaxson's first sleep study

Let's rewind for a second...

When Jaxson was born our Pediatrician was concerned about his recessed chin, or micrognathia. They were especially concerned when he was diagnosed with Laryngomalacia, an airway disorder, and his micrognathia. Why you ask? Well Laryngomalacia occurs when the larynx is softened and flops back and forth when the child breathes. Since he had the softening of his larynx and micrognathia it was a concern for severe obstructive sleep apnea events.

What is obstructive sleep apnea?

Obstructive sleep apnea occurs when the throat muscles relax and blocks the airway during sleep. It is also one of a few types of sleep apnea disorders.

How does one diagnosis this?

In order to diagnosis sleep apnea, one has to partake in a sleep study at a Sleep Center. Generally when you go in for a sleep study it is after hours around 6 pm and you check out at 6 am the following morning. Sounds simple enough, right? Wrong.

Our son Jaxson didn't like to have the CPAP in his nose, therefore we were frequently trying to place it back. There seemed to be hundreds of cords attached to his head and Jaxson wanted to rip out every single one of them.

7 Tips to make your time at a sleep study less stressful:

Jaxson in his rock n' play

1. Try to keep to your child's bed time routine. At that point in time, the only way Jaxson would sleep was if he was in his rock n' play and swaddled with his pacifier. I know it is going to be difficult to keep your routine but bringing their favorite book, stuffed animal, or blanket could help make your stay a little better. We literally brought our rock n' play with us to help him feel a little 'at home'. The blanket and pacifier helped comfort him as well.


2. BRING YOUR PHONE CHARGER. I couldn't sleep because I was either wrestling with him to keep his bandage (on his head) and keep the tubing (CPAP) in his nose, I was stressed about the results, and I had anxiety because we weren't home. I know no one will be up to talk to but you can lurk on Facebook, catch up on the recent gossip, or play Angry Birds. Nothing is more upsetting then your phone dying and you have NO phone charger.

3. Bring your child's tablet (if child is older). Jaxson wasn't old enough for a tablet but if he was I would've brought my oldest son's Kindle Fire 7 Kids Edition. This tablet is an absolute godsend on road trips, shopping trips, doctor appointments, etc. Ensure you bring the charger to that as well!

4. If you have other children, PLAN AHEAD. Please, PLEASE plan ahead. You cannot bring any other children or adult with you. Nothing is more stressful than trying to find a last minute baby sitter! If you are a military family like us it is extra hard to find someone to babysit last minute, our family is too far away.

5. Bring snacks! YESSS. Pack snacks! The two times we've gone to a sleep study they didn't have anything to eat or drink. Pack your child's favorite snack and juice box!

6. Wear comfortable clothing. This is obvious. I wore a pair of comfy sweats and a big t-shirt to his sleep study. I knew it was going to be a rough night and wanted to be comfortable. Also bring your child in a two piece because they'll have a lot of cables! It'll be easier on everyone involved if they're wearing a two piece pajama set and not a sleeper.

7. Last but not least... bring patience. This is going to be hard for them and you. They're going to be scared when they wrap their heads with bandage to keep the leeds attached to their heads. They're not going to be in the comfort of their home and stressed out. Patience is key.

I hope that these tips make your sleep study successful and not extra stressful! What tips have you found worked for you at a sleep study? Please share below!

Aero Digestive Clinic

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Look at that double chin

Sunday we left for Birmingham, Alabama to see an Aero Digestive Team at the Children's Hospital. The ride was AWESOME, Jaxson did not scream for hours and did not throw up all over himself. We always dread driving with him but since switching him to forward facing it's been a lot more bearable lol.

Our appointment was SUPER early, 0745, so we decided to leave the afternoon before and stay at a hotel.

JJ had his Kindle Fire 7 Kids tablet and portable DVD player and as long as Jaxson had snacks and his bottle we were golden.

Eating some crackers

Left the hotel at 0700 and stopped for the essential... Dunkin Donut coffee with a turbo shot. Coffee has been a staple since the day this little peanut was born, lol.

Parking is ridiculous at UAB, if you ever go to see a specialist--GET THERE EARLY! Allow enough time to park and PLAN TO WALK A LOT. I brought my carrier this time and carried Jaxson through the hospital as my father in law pulled a Radio Flyer wagon (they provide these) with my oldest in it.

Thank god for family! I don't know how I would do it without them!

When we checked into Clinic 6, they had us go up to Imaging to have an x-ray of his chest done prior to the appointment.

Afterwards they took our little peanut's vitals and I should say that he's no longer a peanut.. he's a chunk chunk. He's a whopping 22 lbs now! If you would've told me he would go past 10 lbs this time last year I wouldn't have believed you! He's still on the short side, 29 inches, but that is to be expected in children with DYRK1A syndrome.

We saw a team that consisted of a Pulmonologist, Gastroenterologist, and two Speech Therapists. We mentioned our concerns and that we wanted a second opinion on his sleep apnea and gastro problems. Jaxson has been sleeping terribly for months now and I have been worried it's related to his diagnosed sleep apnea. It's probably more behavioral but I wanted to rule out the apnea to ease this momma's mind. 

Sleeping

Found that with his current weight that his dose of Zantac is TOO low so we will be adjusting that dosage to help with reflux. Sleep study will be scheduled for when we move up to North Carolina and possibly done at Duke. The chest x-ray came back normal as well!

Swallow Study

They sent us down for a swallow study to rule out aspiration for his choking and gagging on solids and his almond milk. He hadn't had a swallow study done since he was a month old so thankfully they put in for this.

HE PASSED. 

The barium swallow study showed no penetration when he consumed thin liquids, puree, and crackers. GREAT NEWS! I'm so relieved. The Speech Therapist who did the test thinks the choking and gagging is more Sensory related so I'm hoping I can expedite his Occupational Therapy referral with this information. 

I might look into this more thoroughly to ensure that it's indeed Sensory related.

Now I just have to worry about our flight on July 3rd, Jaxson has NEVER flown. 

Send good vibes please!