Wednesday, June 27, 2012

Finn's Hyperbaric Oxygen Therapy Update

Well, we are officially done with this round of treatments.  What a long 20 days!  I'm not sure I know what day it is.  Finn and I spent seven hours a day in the car or in the chamber getting the treatments done.  He did amazing with the treatments and learned how to use an IPad in the process.

The next three weeks is when Finn's bone marrow will start cascading stem cells into his blood stream.  Hopefully helping with immunity problems, language development and overall health. 

We have already starting to see positive effects from this round of treatment.  First, Finn has started another language burst.  He is putting more sentences together and responding to questions with words other than "yeah."  He is becoming more engaged and his response time to questions seems faster. 

The other big effect is that Finn has started to sweat.  This is amazing.  I think it was around the 7th day of treatments that I felt his hands and they were clammy.  This is such an important bodily process - not only to cool the body, but to remove toxins as well. 

Another bonus is that Finn's hair is soft for the first time other.  Finn has this amazing thick, coarse hair, but all of the sudden it is soft!  Definitely a nice little perk.

Yesterday, was definitely the toughest day.  Camila caught a virus a week or so ago and passed it to Finn which has led to a full blown sinus infection.  I took him to the doctor yesterday morning to get a culture and then dropped him off at school.  I then received a call from the doctor's office that they used the wrong swab to get the culture so we had to do it again.  He then threw up in between therapy sessions yesterday all over himself and the car.  We got home late and Dan and I spent the rest of the night cleaning out the car and car seats and worrying about our sick boy.  Finn then threw up again this morning so he stayed home from summer school today and hopefully we can get this culture back this week to make sure we have him on the right antibiotic.  

So, yes, the last 20 days have been exhausting and tiring for the whole family.  Camila's routine has definitely been upset.  During some of this time, Finn has been going to summer school in the mornings and then straight to therapy so he has been gone for 12 hours a day, but I think it has been worth the time and the money.

If you want to learn more about HBOT, I have attached a link to The Hyperbaric Centers of Florida where they have recent research posted.  I definitely recommend that if you are going to explore HBOT as an option for your child or yourself that you do a lot of research.  There are different arguments for different types of chambers and there are some risks associated with the treatments.  It is expensive and takes a huge time commitment.

http://www.hyperbariccentersofflorida.com/Stem_Cell.html


Here's a photo of Finn from his last day of treatment.  Such a cute little astronaut!



Thursday, June 14, 2012

Update on Hyperbaric Oxygen Therapy Sessions

Finn is through 1/3 of his treatments!  It has been 7 consecutive days and he has received 14 - 1.5 hour treatments.  I must admit, I have no idea what day it is as everything is starting to blur together.

Finn is doing such a great job in the chamber.  He is tolerating the "helmet" amazingly.  We had a little bit of an issue in the first couple of treatments because he can't get his thumb to his mouth, but he hasn't even tried to get it in there for the last couple of days.

His ears are doing fine with the pressure.  Because he has a perforation in one ear and a tube in the other, we don't even need to worry about them popping.

The hardest right now is finding things to do inside during our 2 hour break.  It is way too hot out right now to do anything outside for a long period of time even though there are lots of outdoor things to do there.  He is also supposed to relax and take it easy as moving makes oxygen escape your body quicker.  We have found a couple of things to do though:

  • Bowling
  • Indoor McDonalds Play Area
  • Shopping
  • Sprayground
  • Train Museum
So, I guess the big question is have we seen any improvements in Finn?  Typically, most people do not see any noticeable changes until you get to the end of the 40 treatments and in the couple of weeks afterwards, but we are already seeing changes.  Finn has started to sweat.  He is officially sweating.  His back, his arms, his hands, his legs, and his feet are all sweating.  This will be amazing if he can continue to cool his own body and release toxins and impurities this way.

We are also seeing a quicker reaction time and response time from him.  Not only that, he has slept through the night every night since we have started and taken good naps.  Now, it could be that the long days are what is helping him sleep, but the increased oxygen is also known to help as well.  I will keep everyone posted with any additional changes we see.  I already believe the treatments are well worth the money and the time.

Here are some pictures.  He isn't wearing the full helmet in these pictures, but you get the idea.  He LOVES the spiderman scrubs by the way!




Wednesday, June 6, 2012

The Next Twenty Days

I will probably be completely out of touch for the next 20 days.  Finn just wrapped up his first year of elementary school and our summer seems to be completely booked.

Finn starts hyperbaric oxygen therapy treatments tomorrow.  We are doing two treatments a day for twenty consecutive days.  Each treatment is an hour and half and we have to wait at least two hours between treatments.  Finn and I will be spending a lot of time in Zephyrhills, FL (about 7 hours a day).

The treatments this time around are more aggressive then what he had previously.  They are 100% oxygen at a higher atmospheric pressure.  He has to wear a bubble over his head and I will get in the chamber with him.  We will both have to wear scrubs and clear physicals tomorrow before we actually get in the chamber.  I'm very nervous about the treatments.  I'm worried about how Finn will handle the bubble around his head and I'm worried about myself in a small, enclosed space going on a "deep dive."  I'm also worried about one of the possible side effects of doing this therapy at a higher ATA...seizures.  All in all, the possible benefits way outweigh the possible side effects and my own fears of the actual chamber itself.

The good news is that I will be getting to spend a lot of time with Finn and will be working one on one with him.  We also learned that there is a bowling alley, a spray ground and a big park nearby so when we need to kill time in between sessions, at least we will have a lot to do. 

Meanwhile, we are waiting for blood work to come back that was drawn this morning checking his blood counts and liver function.  Finn has many unexplained bruises on areas where there is not bone so we are simply getting him checked out to rule out a blood disorder.  Unfortunately, blood disorders are common problems with Trisomy 9p so we would rather be safe than sorry.

I'll update about how Finn is doing with therapy soon.  In the mean time, we spent his day off at Busch Gardens today and here are some pics.