Musings of a Marfan Mom

Sleep Study Results & the Newest Members of Our Family

| 18 Comments

It’s been a whirlwind week and I’ll update on conference soon, but first I wanted to write about yesterday. As you know, Baby J had a sleep study 3 weeks ago. It was like pulling teeth trying to get the results…the hospital was terrible about returning calls from either the pediatrician or me and when they would call back, they’d have a vague reason for the lack of information. I finally got them to fax the results at the 11th hour…Thursday evening at 10 minutes to 5 so that I could take them to our clinic cardiology consult the next morning.

I expected J might have some mild form of obstructive sleep apnea, but I was surprised to learn it’s actually severe. Both the pediatrician and the cardiologist we saw at the conference clinic advised us to get started with treatment immediately.

When I called the hospital today, I was told the earliest appointment was early September. Long story short, I was polite but quite firm that that wouldn’t work, and was eventually given a cancelled slot for that afternoon.

The pulmonology fellow was very nice and understood why we weren’t willing to wait 2 months without a treatment plan. Her attending convinced the ENT to see Baby J that afternoon for a scope to look for any potential surgical cause. The scope showed that Baby J’s adenoids are slightly enlarged, but most likely not enough to be problematic, and that he has a mild case of Laryngomalacia, but that wouldn’t be enough alone to cause his severity of apnea. He recommended J have some further testing under general anesthesia to totally rule out any surgical causes of the obstruction. He wanted to take out the adenoids at the same time “just in case,” but I said no. I can’t bring myself to do surgery on a baby that isn’t 100% necessary, especially a Marf baby where we don’t always heal like a non-Marf person does.

Given the results of the scope, the pulmonologist recommended oxygen for Baby J whenever he sleeps. She said that although his apnea is bad, it’s not life-threatening at current levels so we could opt to not use anything in the short term, but I know how rough apnea can be on the aorta so I agreed to the oxygen. In late August or early September Baby J will have his bronchoscopy, etc. and we’ll make a final determination about treatment at that time: either surgery or a cpap. The oxygen should relieve some of the pressure on his aorta in the meanwhile.

So, it was 5:00 when I left the hospital. The oxygen tanks had been delivered to our apartment by 8:00. We’ve got 4 little tanks for trips out of the house where J will nap on the go (I’ve named them all “Ollie the Oxygen Tank”), along with a backpack, and a great big tank for the bedroom (“Calvin”). [You’ll remember I like to name medical equipment.]

Being totally honest, I’m feeling a little scared/overwhelmed. I was already unnerved learning that J stops breathing about 12 times an hour…now I have visions of him choking to death on his canula or the whole house exploding from an accident with Calvin. Yes, I know I’m entirely irrational.

This is just one of the first in a long line of medical decisions we’ll have to make for J that don’t have a clear right or wrong answer. I hope he takes to sleeping with the tubing easily. If you have any advice to share about what worked with you/your child on oxygen, please let me know!

Be Sociable, Share!

Related Post

18 Comments

  1. I have no advice but sending good wishes. I’d be a nervous wreck too. This is not easy stuff. I hope he adjusts to the oxygen easily.

    [Reply]

  2. Nothing to share but my love, prayers, and hugs. I love you and the guys. Ta

    [Reply]

  3. Are they doing a pulse-02 to see if he’s getting the right amount of 02 while sleeping? Sending good thoughts your way.

    [Reply]

    marfmom Reply:

    He’s not currently getting enough O2 while sleeping; they were able to determine that during his sleep study. Or do you mean are they going to run tests at home while he’s on oxygen at night?

    [Reply]

  4. I hope everything goes well and that he will sleep like an angel with the oxygen :)

    [Reply]

  5. Thinking of you! ((Big Hugs))

    [Reply]

  6. I’m sorry your dealing with that so young with him. Kudo’s on being so proactive and finding out so early

    [Reply]

  7. Thinking of you guys and Baby J. You’ll be in our prayers!

    [Reply]

  8. Well wishes from the CMA. I hope the oxygen helps J breathe better. Your advocacy for J’s appointments should be an example to all. Insist on getting the care you need!

    [Reply]

    marfmom Reply:

    Thank you so much!

    [Reply]

  9. Treating apnea is (literally) a lifesaver! So glad you guys are getting on it, even though it’s anxious-making.. *hugs*

    [Reply]

    marfmom Reply:

    Thanks. I’m very grateful that we caught this!

    [Reply]

  10. Sorry. I mean at home once 02 is set up and he’s using it. We recheck mine occasionally. My 02 is fed into the CPAP and blended with room air. The 02 alone won’t stop the cessation of breathing episodes will it — just provide extra oxygen. Have your docs ever tried CPAP on such a young baby? J might adjust quickly to the mask and get best sleep ever! Just remember, the mask does NOT have to be tight to fit well. The facial piece is so soft and pliable that it can seal tight without it being overly tight.

    [Reply]

    marfmom Reply:

    Gotcha! The docs have done CPAP on kids this young but say it’s a real pain. So, they aren’t giving us one until they know whether the cause of the obstruction is surgical. If it is, they’d want that operated on and then presumably J wouldn’t need a CPAP. However, we’re not convinced we’d want him to have surgery this young. I’m going to try to get in touch with Dr. Neptune at Hopkins about it.

    [Reply]

  11. A few notes now that I’ve actually read this:-)

    First… it can sometimes be tricky to get a CPAP machine… maybe okay in this instance but a friend of mine is having a LOT of issues getting a medical supply company to provide them one (they aren’t FDA approved unless the kiddo is over 5… i think??? or something like that…) but hers would be continuous… all day long… so maybe that is different.

    However, I am VERY familiar with a CPAP machine for infants as we were on them 100% of the day a lot in the hospital (she has weak lungs and brocialmalasia (sp))

    Anyway, Re: tubing… this was a BIG fear of mine when we got home! I’ve found the best thing to do is thread it through their jammies and let it come down someplace toward the bottom. yes, probably not comfortable for sleep, but I run the tubing down to the bottom of the bed (instead of the top) and she does MUCH better. The first few nights home, I would literlly find it wrapped around her whole body 3 times and even her neck and arms. Scared me to death!!

    We have an O2 monitor (pulse oximeter) at home, but again, Annabelle is a little different. We can spot check her blood oxygen levels at anytime, or keep her hooked to it continuously. We do both, depending on what kind of day she is having!

    If you are only on it for night, It doesn’t surprise me that they didn’t send one home with you. But if you’re worried about it, it doesn’t hurt to ask!

    [Reply]

    marfmom Reply:

    Thank you so much! These are fabulous tips! I hadn’t thought of threading it through the PJs but that makes a lot of sense.

    [Reply]

  12. I don’t have any useful advice, but I Just wanted to let you know that I’m thinking and praying for you as well! And just to let you know, you’re my hero and I hope I’m just like you when I grow up. :)

    [Reply]

    marfmom Reply:

    awwww thanks :)

    [Reply]

Leave a Reply

Required fields are marked *.