The good, the bad, and the rest

Another eventful day here in Santiago Chile for the Andrew De Vivo family. Last night I woke up to Nathan’s very labored breathing. I gave him what I call a breathing treatment, which in reality consists of using the Neti Pot, until I got all of the snot out of his nose and voila, he was breathing well again. A couple of hours later I heard him coughing and breathing heavy again, so I repeated the operation. This happened a few more times.

In the morning he seemed much better, so off he went to his CME therapy while I decided to take a mommy moment. I went to my very first tennis lesson down here in Santiago Chile! Boy was I out of shape! I had to take breaks every 5 minutes! Isabelle went for a ride! But I have to say – it was SOOOO fun!

Afterwards we had our appointment with the HBOT doctor at Clinica Las Condes. I have to say I was thoroughly impressed. He was very smart, knowledgeable, and understanding of my point of view and philosophy. He proposed the following. He doesn’t want to waste our time or money by doing 40 treatments without having quantifiable information about whether or not HBOT can help Nathan. So he wants to do a SPECT scan before his first treatment. Then he wants to do 5 treatments, then another SPECT scan. Based on the information from the SPECT scan, we can then decide whether or not we should move forward. He said that in the SPECT scan we should see whether new neurons are being activated quite clearly. This way we’re not shooting in the dark, or wasting time or money.

Believe it or not they have never treated a child with HBOT down here in Santiago. Apparently there are 2 other chambers available, but they only treat adults. This doctor is the first one offering HBOT treatments to children but so far, no one has been interested! So Nathan will be the first Chilean HBOT patient! The doctor is really excited, because if it works and we have quantifiable evidence in the SPECT scans, then it will motivate other children to receive treatments.

So the good is that YES, Nathan WILL be complementing CME with HBOT treatments! I am really excited!

The bad is that we may not be able to start next Monday as I had planned, for 2 reasons. One is that the doctor doesn’t have an oxygen mask small enough for Nathan. They have a multi-person chamber so they need a mask to deliver 100% oxygen straight to Nathan. So I have to order a mask from the US and have Owen send it to us before we can start the treatment.

The second reason is that Nathan has an infection 🙁 The doctor noticed he was snotty and said it is essential for Nathan to be in excellent shape before going into the chamber. So he ordered us to go straightaway to an Ear Nose and Throat doctor. We went straight to the ENT who was in the same hospital. I was expecting him to say, “don’t worry, it’s just a cold.” But it turns out Nathan has an infection in his adenoids so he has fluid build up in his ears, which is a huge no-no for HBOT treatments. Other than this infection, he said Nathan’s anatomy looks great. This is the first time Nathan is seen by an ENT so I am pleased to hear that everything works well!

We already started him on antibiotics and on some decongestants and the doctor believes that the fluid build up in his ears will have disappeared by the end of next week. So if we can expedite delivery of the mask, and he gets better from his infection, he will be ready to go within a week or two at most.

I have to admit I am thrilled that Nathan will be starting HBOT and I just hope all of the pieces fall into place soon so we can start this new phase in Nathan’s rehabilitation. I have a really really good feeling about this!

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