Musings of a Marfan Mom

Sleep Study #2


Last night Baby J had a sleep study scheduled. I’d been having a really difficult day and was dreading it because of how little he actually slept last time. The purpose of this study was to determine what level J’s CPAP needs to be on. Right now he’s on a 4, which is the lowest setting, but his pulmonologist is fairly certain that is too low a setting for the severity of his apnea.

Things started out ok enough. As you can see, J was happy to be there.
happy baby
baby with hospital bed

That didn’t last long once the tech started getting him hooked up to everything though.
baby getting sleep study
Baby getting sleep study

Now, I knew having a pulse oximeter was an important part of the study. We’ve had a lot of trouble getting J’s to stay on him at home, but a reader recently suggested using medical tape to wrap it around his foot, where it can’t be kicked off. I asked the tech to do this but he refused, instead wrapping the sensor around J’s toe.

Surprisingly, it didn’t take me too long to get J to sleep, even being unable to nurse him well because of some of the short cords. I gathered up my laptop, phone, and a snack and headed to the parent lounge. No sooner did I get into the hall then the tech stopped to tell me that – SURPRISE! – the pulse ox sensor was off J’s foot and he’d have to place a new one on his finger. Also, there was a leak in the seal of the mask and it needed tightened.

None of that went well. Sensor ended up back on the toe when the finger didn’t work. The mask was tightened and J was even more angry. I don’t know how long I tried to get him back to sleep. I’d heard about kids getting so upset they threw up, but I guess I viewed that as an urban legend…until tonight.

I called the tech and informed him we’d be going home, he helped me clean J, and we were walking in the apartment before 10 pm.

I don’t blame the tech for Baby J getting so worked up, but I am frustrated he wasn’t willing to work with me on getting the pulse ox to fit. And now, I doubt we’ll be able to schedule another sleep study before the move, since they’re only on Sundays and I’m not doing Christmas or New Years. This is frustrating because the longer J isn’t on the right setting, the more stress his aorta is under. On the flip side, I’m planning to night wean him as soon as we’re settled in the new house, so being night weaned may make any subsequent sleep studies easier…?


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  1. Oh man I am so sorry! I had my first sleep study last Wedensday and kept thinking of you guys- I got to try out a cpap for the first time… And I wondered how in the heck you managed that with a little one! Those sleep studies are so uncomfortable, I can only imagine what a baby must think of it!!! :(

    As far as the urban legend proved true… I’m shocked you hadn’t already experienced that as an autism parent. I clearly remember the FIRST time kekito got worked up enough to vomit. It was when his first therapist A.K.A first girlfriend left our house one day. Everytime he starts to get there, I find myself pleading, “please don’t throw up!!!” luckily, he hasn’t done it in almost a year.


    marfmom Reply:

    Yah, I guess I lucked out there. M can get VERY worked up, but he’s never thrown up from it.


  2. I wish people in the medical profession would listen to parents more. Yeah, sometimes we’re (I’m) being crazy, but when you have a legitimately good idea like using the tape to keep the pulse oximeter on, why not just do it?

    Chaela has gotten worked up enough to gag a few times, but she’s never actually thrown up. There has been a lot of throwing up around here lately thanks to some bugs, though, so I feel for you! I hope J is feeling better.


  3. I’m so sorry to hear that it went miserably, but I’m not surprised. Your son had clearly had enough after being woken up to replace the leads. And he was trying to tell you in the only way he really could that he couldn’t take this anymore today. I know that’s frustrating and stressful, as you have every right to be stressed by needing this test and the implications on his heart and your upcoming move etc. But it will happen.
    I think one of the hardest parts of having special needs babies is they are too little to understand what is going on. Most of my childhood issues where when I was older, starting at 5 years of age, which meant my mom could turn an annual battery of tests and procedures into a super-fun out of town weekend where the children’s hospital was our “excuse” for going on a plane, staying in a hotel with a pool and shopping and meals out. But when its a baby there is no spinning things. They don’t understand, they try to be patient but with people taping things to them, restricting their movements, waking them up in strange places or needles, but they are just upset.
    Try to remember that though your son had a bad night, the fact that he can assert himself and say enough is enough could be a good thing. It’s the same traits he’s going to need to fend off bullies or peer pressure in the future. And the next time you go for your sleep study and a tech doesn’t want to listen to you about the placement of the leads, remind him that your baby threw up last time when he was woken by a tech replacing leads….and I’m sure they will listen to you.


    marfmom Reply:

    All very good points. It’s such a hard balancing act, making sure he gets the tests that he needs and not putting him through too much stress. Next time I’m just going to bring tape with me so there is no excuse for them to do the pulse ox anywhere but on his foot like I ask.


  4. Love and hugs to both of you. I hope when you get to your new home, you can get things settled in as they should be.


  5. Would it be a horrible, terrible, what-were-you-thinking idea to go ahead and slightly change the CPAP setting on your own? If the pulmonologist is pretty sure it’s going to have to be raised anyway, maybe just bump it up a bit to lessen the strain on his aorta without raising it so much it would hurt him.


    marfmom Reply:

    I’d be a little nervous to do so, since we don’t know how much it would need bumped up. What if it’s only 1 more level? The other thing is that the doctor told us that unless it’s at the right level, it’s not effective, so I’m not sure a 6 is any better than a 4 if he needs an 8, for example. :-/


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