Saturday, May 07, 2011

Last Night...

(Here's the original post concerning Sam's struggle with sleep).

Okay, the next post won't be so heavy since despite the difficulty of the sleep study there were lots of laughs and smiles beforehand. But last night was rough. Really, really rough. Thank you so much for your prayers. It was so encouraging to get messages from people at 2 am, 3 am, etc. just saying they were praying. It was nice to not feel alone.

I've been a bit teary today as I think about last night. At the risk of sounding melodramatic it was somewhat traumatic. I do want to say that Sam was incredible. If someone would have told me that my 3-year-old would sit still for 90 minutes while he was being hooked up with various electrodes/wires I would have said it was impossible. Sam brought his 'A' game and I was so proud of him. I didn't take any pictures of him with his gear, mostly because he was so tired and scared after it was all on I was using both hands to cuddle and sooth him. As he drifted off to sleep he kept saying, "I'm feeling scared, Mommy. Why can't I rest at home?" I am, however, including a picture of another child with the gear Sam had on (he had wires coming from his toes, shins, stomach, chest, chin, ears, cheeks, nose, corner of his eyes, and multiple wires from his head. He had a thick gathering of wires that was about 2 inches in diameter that he was supposed to sleep on. 

(THIS IS NOT SAM--This is just what Sam looked like, except he had ace bandages wrapped all around his head/cheeks/chin, and without the restraints on his arms--I opted to hold him during a rough patch.)

I'm disappointed that we could not complete the study, though I have no doubts we made the right decision to stop. If we're convinced that it's absolutely necessary we'll try it again, though we'll do things a bit differently.

In fact, just in case someone stumbles upon this blog and needs to take their child for a study, these are the things I wish we had known in advance:

Application of wires/electrodes: While I knew Sam would be hooked up to various wires and machines, I had no idea it would take 60-90 minutes for him to be set up. This is a long time for a 3-year-old to sit still and had I been aware of the length of this set up I would have brought a movie for him to watch. Furthermore, had I had access to this information I would have scheduled a sleep study for earlier in the day. The way it worked out, my 3-year-old was not in a position to fall asleep until close to 11 pm. It would have also been helpful to know in advance that there would be a beeping machine. This kind of knowledge would have been helpful so Sam could know what to expect in advance. The worst part was the nasal cannula that was placed in his nose. In fact, this was the reason why we ended the study--because we couldn't get it in place without Sam collapsing in tears and coming close to throwing up. I was surprised the cannula was made of hard plastic since there are more rubbery ones available.

After the study: While I knew how long the study would last, I did not have any information ahead of time about what would happen after the study. It wasn't until close to midnight that I learned we would need to leave his room sometime between 5 and 6 am.  I didn't realize how little sleep I would be getting. I had a few panicky moments at the thought of driving the 90-minute drive home on little to no sleep. Had I been aware of this information I would have booked a hotel room nearby or arranged for another ride home. (We ended up leaving the hospital at 2:30 am. Thanks to my brother, Paul, for talking on the phone with me to keep me awake).

Restraints: At one point I was asked if I wanted to use restraints. I declined. Later on, another technician came to me with the same question, only she spent quite a bit of time explaining why they might be helpful. Finally, I asked if I could see the restraints she was talking about. When she showed me, I was relieved and quickly agreed--it was just a simply sponge like cloth that would keep him from bending his elbows. My anxious mind had imagined a straight jacket of sorts. Had this information been clearer to me earlier we might have had an easier time making decisions. We tried the restraints for about 10 seconds before I realized I was more comfortable holding him.

Ending a study: I agonized over whether or not to end the study. I realized I did not have all of the medical information I needed from the doctor. It was unclear to me how important this study was. If I cancelled now would we have to attempt it again? What was at stake with this study? Could Sam have his adenoids removed without a sleep study? Was I somehow endangering my son to quit the study? I wish I would have had access to a doctor who was familiar with Sam's information who could help advise me.

What to wear: It would have been helpful had we been told to wear old pajamas. I didn't know until we got to the study that some of the substances used can ruin clothing. This is just a small thing, but it might have been helpful.

Again, thanks for your support. My heart was aching for him last night and it was so heartening to know we were being lifted up in prayer.


K Hallgren said...

I'm sure the Childrens Hospital is top notch but it seems like many of your concerns could have been easily remedied if they had some protocols for parents regarding type of study. It is hard to imagine they have any children who make it through the whole study, especially if they give such little information to parents as it sounds like you got! Congratulations on making that gut decision that you knew was best for Sam. I hope you get a long nap and a giant hug from your kids for Mother's Day!

mdh said...

Mandy - I really really encourage you to share your experience with director of the sleep study. Give them your "I wish we had known in advance" list. That would be huge and so helpful. I know you could do this tactifully and who knows maybe they could make a brochure to give to others to help them prepare for the study. I am so sorry it was so traumatic for you and Sam. Thanks for sharing your feelings on line so we could support you in the middle of the night. Love you Aunt Shirley

Amanda said...

Thanks for the advice, Aunt Shirley. This blog post actually started as a letter to the director with the sleep study. While I was given a brochure at the beginning, it was fairly vague ("Your child will be connected to electrodes.")

I really do hope to provide some constructive, tactful feedback to make this easier in the future.

Thanks for your love and concern from afar!