What would a Daring Adventure be without a little drama before? I was waiting as it always seems to come. But the good news is,if it comes now before, then it always seem to be OK for the big day!
Yesterday we went to Phoenix Children’s to see Anthony’s pulmonologist regarding the sleep CO2 levels. There was some debate within the community as the DMD expert from Children’s Hospital in Pittsburgh said we don’t really treat the boys until the levels are at 50. Anthony is only 48.4. Our doctor here explained that if he wasn’t showing other symptoms such as weight loss, dizziness and exhaustion that may very well be true. However, since we are treating the whole child, we need to look at the whole picture. They ran several additional tests to get a comprehensive picture. All this information is always so tough to sort through and make these tough decisions. But that is a huge part of everyday life with DMD. I looked at all the evidence and then did what I always do…..
I contacted my mentor Pat Furlong from PPMD and asked her. I always trust not only her wealth of knowledge from years of sitting with every expert in the world,but more importantly I know that all I have to do is ask “if your boys were still here today, what would you do if this was your dilemma?” As always, I got profound wisdom, “Jill, follow you mother’s instinct; as usual you and Anthony will teach us more about DMD”. So with that, I decided we are getting the BiPap.
The company called and told me this was impossible to do before Friday. Anthony has to get fitted for a mask and adjust levels and then find a “Trilogy” which is the only one made small enough for a backpack and battery run for the canyon (not to mention insurance approval). But it turns out John, from the medical company, is a huge hiker and was so inspired to hear the story; he has committed to make this happen. I told him not to worry about insurance as I will begin my hourly calls. They generally push things through pretty quickly so I will stop bothering them. We are also getting a pulse oxymeter to measure his oxygen levels while we are on the trip. I am now certain he will be absolutely fine since we are taking every precaution necessary.
To add a little more excitement, Oliver woke up at 3am in excruciating pain (why is it always 3am with kids???). So trying not to cry while holding his ear, off Oliver and I went to the ER. I figured it was an ear infection so I decided it would be best since we couldn’t sleep anyway to get the antibiotics started. He got medicine and is sleeping soundly. All will be well just in the nick of time.
Today will be all the final packing weight adjustments and food decisions. I’m so relieved my partner in crime, Dee Dee is back from working to help. She can do the thinking for me today while I rest. Ive also made a commitment today to start having fun with all this craziness! I have enough experience to know that I will look back on this amazing adventure and see one of two things about these days leading up to it. I will either see me as excited and thrilled and laughing at all the insanity or I will see me as a stressed out worried wreck who is snapping at everyone and dreading all the work and I refuse to be the latter. NOW is the time to start having fun. We will never have these days back.
Lastly, tomorrow morning we head off to FOX 10 new station to start a three part series on Anthony’s Daring Adventure. I’m so grateful for the support and interest because as this story of hope spreads, so does awareness for DMD as well as promotion for the awesome team from Daring Adventures!
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