Friday, July 30, 2010

A Nightmare Of A Sleep Study

I will never, ever, ever let Amber have another sleep study in Boston! Maybe, but only if it's absolutely necessary, I let her have one at their satellite location in Lexington.
 If you haven't notice I'm not completely happy with how the sleep study went. 

The sleep study itself went alright I guess. Amber actually slept through the night. She only startled awake twice on her own and not to the scary extent that she usually does at home. She did do her usual snoring and gasping though. I'm hoping things weren't too different and that we still get good answers from it. 

What I didn't like was the technician we had doing the test. To say he had no social skills is an understatement. He was like talking to a rock. He never told me his name, asked if I needed any help or anything along the lines of even a cold welcome. That didn't bother me too much but how he treated Amber really got me going! She had to have 15 electrodes on her head, five on her face, five on her body and two on each legs. She also had to have a weird butterfly like band-aide under her nose to monitor breathing stuff, a special cannula to see how much oxygen was coming out and a carbon dioxide sensor. All the sensors on her head and face had to be glued down with some really nasty smelling stuff. He was so awful to her the whole time he was putting them on. Treating her like a rag doll, flopping her around to put them on. I understand she isn't easy because she doesn't hold any of her weight and she is like a doll to move around but she is a human and it isn't safe for her to be moved like that! She was choking, gagging and sputtering because of it. I was so mad and no matter how many times I told him to stop, give her a break and not to do that he just didn't care, he wouldn't even let me help him. She was also off her oxygen for most of this, it was really scary to see her color change and to watch her work so hard. Which he also didn't care about because the first part of the test she wasn't going to have oxygen (so they could see if her brain told her body to breath etc). The whole experience was just terrible and I can't believe they let people like that work with children! 

We won't have the results of the test for 2 weeks. I'm not even sure how long she was off the oxygen (I know it wasn't long) or what amount she ended up on. 

                                 This is poor Miss Amber after her sleep study back at the hotel.
The red marks on her head are from the marker they use to make where the sensors go. I snapped it quick before I readjusted her oxygen cannula, she looks so different without it!

This week hasn't been so great, hopefully next week is better I don't think we have any appointments!


  1. not cool i think i will get this guy fired

  2. This man NEEDS TO BE FIRED!! There is NO excuse for such cruel behavior! I can't even imagine how upsetting this was for that sweet baby...and for you!!! I'm so glad it's behind you...and pray that the results are useful! May our Prince of Peace move somehow in this man's that he might see the depth of his depravity! prayers are with you!

  3. You would be surprised at some of the people who work at Children's, you can really tell who's there for the money!

  4. Awwww, my sweet grand look wiped out in this picture! Schuyler..what a night! I expected to hear that they hooked Amber up to some electrodes, she went to sleep and had a "normal" hospital nites sleep..the Drs got to monitor everything and that was it! I'm sorry it was such a terrible experience for Amber and for you. I do hope they find out something helpful after all that! You will soon be the expert on hospital procedures..what hasnt Amber had done??
    I do know God is good..and He loves you and Amber way more than I even do!
    Come to Pa next week and I will pamper you both!! Wish you could stay longer..but very glad you are planning to come!! Do I tell you I cant wait to see you all???!!!!!!

  5. Skye, if you ever get someone like that again in any area of the hospital, calmly tell them to stop and ask for a supervisor. You have every right to say how your child will be treated! You are the only one who can advocate for her as she is too little to do it for herself, so don't be afraid to do so. I understand that sometimes people have to do procedures on our children that are not fun to watch but this is an entirely different situation. This person was not careful in handling her and he behaved inappropriately. You may even want to consider complaining about him now so that another child doesn't have the same experience!
    Hopefully, Amber's discomfort will not be in vain and the sleep study results will be helpful. Keep up the good work! You are doing a great job with her!
    Aunt Julie

  6. So glad that nightmare is over & you're home safe & sound. Maybe you should relate your experience to a supervisor there.

  7. Phew! I'm glad that's over with. I LOVE YOUR NEW BACKGROUND, by the way.

  8. i was just going to say the same the backround!! and i love the catchy title of this one!

  9. Praying for you Schuyler. My heart goes out to you. Amber is precious. Thanks for sharing your life with us. Love to you all, Cindy

  10. Your poor baby! She looks wiped out. I can't believe how heartless that man was. That is inexcusable!