Officially a Bad Sleeper

But first of all, big CONGRATS to Stefan and Alexandra who just welcomed their new baby Tage on Saturday! Can’t wait to meet him.

Then, Vince sleeps bad. Officially really bad. Like, qualifying for the diagnose of Disturbed Sleep Syndrome or what the doctor called it yesterday. It was way worse then what the fast result showed, the day after his sleep study. He stops breathing for up to 20 seconds at a time, he sleeps very unrested and never reaches deep sleep at all. His oxygen levels was down to 18% (how ever that works???) at one point in the night. All of this is bad. Very bad. So bad that they are getting us in ASAP. The doc will call me today or tomorrow to let us now exactly when surgery will be. But most likely first week of April (is that ASAP???). Anyhow, anyone with experience of this new super-di-duper surgery type for the adenoids and tonsils? They burn the adenoids away via the mouth (?) and cut the tonsils with some lazar. Blood and bleeding should be minimized. For you who have done this:
How long was it till your little one was back to him/herself?
What were changes you experienced after surgery?

3 Responses

  1. Hi Christina, I sent this to my friend Amy who’s son had this surgery. Hopefully she will contact you with some info. Sorry little Vince needs to go through this, but I bet he will sleep MUCH better afterwards. We’ll be thinking about you…keep us updated!

  2. I’m sorry that he has to have surgery! I don’t have much insight into the procedure, but I sure will thinking about the little guy!!

  3. Hi Christina,
    Tricia introduced me to your blog! What a cutie you have, he probably knows it!
    It sounds like your son has Sleep Apnea which is a very common condition in kids with ds. It does sound serious with the low O2 levels, I am surprised that the surgery is not for a few weeks-in the meantime, have the doctors suggested using a cPAP mask while he sleeps until he has the surgery?
    My son Zach had the T & A surgery last July, he was 4. He did not have apnea, but had very enlarged tonsils, constant congestion (mild stidor), snoring, very small ear canals (problem with drainage into the sinus cavity and thus infections everywhere), Acid reflux and allergy induced asthma which is caused by their tiny passages getting clogged by all of the gunk caused by the former!
    I do not know exactly what tools our ENT used during the surgery, I tried to concentrate on his recovery and the after effects of anesthesia and how he would manage the pain. My son does have a higher tolerance for pain as do many kids with ds. Surgery only lasted about 45 minutes, my son also got a new set of tubes put in his ears as well.
    He came out of the surgery and I will tell you the hardest part of the whole event was seeing him in the recovery room, so small and vulnerable with his IV line in but he managed to give us a small, weak smile when he saw us. He wanted a hug and tried to talk but grimaced when he asked where his brother was (no kids under 3 in recovery room). It broke my heart to see him like that but I knew that because of the surgery he would be better off in many ways. I will also say that my husband accompanied him into surgery when the anesthesia was administered because I know that the last thing Zach needed was mommy crying as the doctors put him under-Daddy was able to steadfastly hold his hand and talk to him as he fell asleep.
    That night, in the hospital was the most difficult, because he came off the stronger pain medication, we had to comfort him as best we could and knew that he did experience pain. We brought his dvd player and favorite movies to the hospital in order to try and distract him and also tried to push fluids all night. He maybe slept for 2-3 hours max.
    We went home the next day and we religiously gave him tylenol for pain (no motrin b/c can cause bleeding). Initially, it was difficult to get him to drink liquids and soups and he kept pointing to his mouth saying “oww”. He did manage a few popcicles, the doctors will stress how important it is to keep hydrated.
    The second day after surgery he tried to eat a potato chip and whatever his brother was eating so we knew that he was feeling better overall and somewhat back to his “old self”. We did not allow him to have the chip because that could cause bleeding and irritation but we did allow him some very soft small pieces of bread and soft cheese to nibble on-he was starving. He had some really mushy pasta the third day as well as milkshakes. He found that he had to chew up the food much more than usual to swallow it.
    He never experienced bleeding but we were very careful and limited his activity for 5-6 days and did not allow hard food for 10 days. This was difficult because he is usually very active and after 3-4 days, he wanted to run around and play.
    Since July he has had one sinus infection (while on a vacation/airplane) and has had some wheezing recently with the change of seasons/allergies. Also, he did experience a relapse in his speech therapy, because with his adenoids gone, there is nothing for his soft palate to come into contact with so his p’s, b’s and h’s all sounded like m’s again. That took about 4 months for his p’s and b’s to come back. He was and still is a bit nasally in speaking because of the soft palate adjustment. Our ENT said is takes anywhere from 6 months and up for the soft palate to adjust in kids with ds because their tone is much lower.
    All kids are different but I know many kids with ds who have recovered pretty fast from this procedure….
    If you have any other questions, please feel free to email me. Sorry for such a long post!
    I will say a prayer for your son, family and his healthcare providers that all goes well.

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