Fundraiser, Our Son, Therapy

Sebastian and HBOT

Outside Chamberat grandma's 024Sad with HBOTHappy in HBOT

We started HBOT on Tuesday after a long consultation and tour of the facility on Monday evening. We felt welcome and comfortable right away. The couple that runs the center is certified and knowledgeable about everything they need to be. We are in good hands. Sebastian looked so cute in his little scrubs. We both have to change into 100% cotton scrubs before getting into the chamber. Each session is called a dive because you are going down to a certain pressure and then breathing in pure oxygen. I was nervous at first because it is an enclosed space and you can’t just get out when you want because of the pressure you are at. They have to take you back up again which takes about ten minutes.

It’s like scuba diving except you aren’t in water and you watch dvd’s rather than fish swim by. [There is a tv screen atop the chamber to watch, although we are limited to kids videos, mainly sing-a-longs because that’s what Sebastian prefers. Although he doesn’t watch more than a few minutes at a time.] Back to the diving part. Once I got in, I was ok. I don’t feel trapped or afraid. I suppose breathing in the oxygen helps keep me calm. But I am also focused on taking care of Sebastian. So far, he’s not a huge fan of the chamber.

The first two days were really tough. There was a lot of crying. Sebastian may feel a bit uneasy being in a new environment, but he was also getting air bubbles from breathing in too fast. When he cries, his stridor brings in a lot of air and causes bubbles in his belly. It was very painful for him and I was limited in what I could do since we can’t get up and walk around. I found some creative ways and he eventually would burp, but because he was so upset it was taking a long time. At the end of the second day I was feeling pretty bad about putting the little guy through all of it.

Today was more successful with my mom sitting outside of the chamber with books and toys for him to look at while I read them through the glass. I was also able to get him to do some exercises. I can just sit up when I crouch over, and there is enough room for me to move his body a bit, which he enjoys. He still had a short crying session today, but it was so much better than the first two days, I feel confident that he will get used to it and it will be like physical therapy sessions. [Which he abhorred in the beginning and shed many tears but now enjoys and works very hard.] I don’t see us lying in the bed together watching movies for the hour and twenty minutes we are in there but I see us working towards having a little fun or at least shedding as little tears as possible.

We are in the tank for an hour and twenty minutes because it takes about ten minutes to get to the pressure we need to be at and then to come back up from that pressure. They keep us at the pressure for a full hour. We go every day at 10am and it takes us 45 minutes to get there and 45 minutes to get home. We go Monday through Friday and will be going until we leave Michigan at the end of September because that’s how long it will take to do the forty dives at one a day. We will have the weekends off but will probably do a couple weekend days to give us some weekdays off to take a trip up to Holland to see friends. It’s a rigorous schedule and we haven’t even started the other therapy yet. We get home for lunch and then Sebastian naps. Since he isn’t taking a short morning nap with the schedule, he’s pretty tired by lunch time and has even fallen asleep in the car a couple of times.

Of course the owner of the center told us not to expect anything after the first dive, but it feels like there is already a difference in his muscle tone when he is relaxed. I did take a video of him sitting on the couch and making sounds (‘talking’) to me before the first treatment and am planning to make one of him jumping, sitting up, taking steps and eating this weekend. After just four days into the treatment, I think we can still show accurately how he is at the beginning and then do videos at the end to show the difference.

We have raised just under $4000 which is such a blessing. We still have to come up with $1000 as the 40 dives will cost us $5000. The raffle ends tomorrow, but we will be thankful for donations if you were not able to participate in the raffle as we are able to pay for the therapy in two payments.

This post has been cross posted with Sebastian Can Do.


2 thoughts on “Sebastian and HBOT”

  1. Kara, lovely to read your update. I understand how hard it is to see our kids not enjoying therapy but we do what we do to try any and every little thing that may help give our sons more of a chance to be physically in a better position as such. Sending Seb many calm vibes inside the chamber and hope a good BF will settle xx best of luck with the rest of the dives. Bronxx


  2. Hey Kara, I love hearing about Sebastian’s progress and can’t wait to see the videos charting his growth! I hope he continues to get used to the HBOT and it becomes easier every day, for both of you. You’re doing an amazing job. xo


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