YA-HOOOOO!!
I am so hyped up right now I could go stand outside and scream from the top of my lungs - but chances are the neighbors would think something horrible happened. Instead - Peter had a PHENOMENAL visit!! I am so incredible excited. His oxygen saturation was good on and off oxygen, so Dr. Abman wants us to take Peter off oxygen during the day and put him only on it at night - see the next echo in January and consider pulling it all of then if the numbers are still good. I am so excited I can't barely put my thoughts in words. Now, I am trying to calm myself down as I want to make sure the cardiology side is cool with this.....called Dr Duster and he had just left today for Vietnam and will be gone for 2 weeks. His partner is in tomorrow - so will check Peter's sats in Colorado Springs and then report them tomorrow.
So here is how it all went down - we got to the hospital and I asked for the paper work to go get Peter's chest x-ray. They came back and said the doctor didn't want one any more....hmmmm.....I thought either very good or very bad but was optimistically leaning to good. We went back and had Peter measured and weighed and vitals taken. He was fully clothed so this ups it a bit but he was around 21.5lbs dressed and still a stocky 29.5 inches long. His vitals were good. Then they took his sats and the numbers were low - I told the nurse I knew they were wrong!
We then headed into the exam room for the visit. Dr. Abman came in with a respiratory therapist who wanted to do his sats again. They hooked him and voila great numbers that matched what we get at home. They decided to take Peter off the oxygen and see how he responded - his sats dropped as expected, but then surprisingly in less than a minute bounced right back up to where they had been when on oxygen. They just stood there watching the monitor and grinning at Peter. They asked about Peter's echo and when I shared the results they were besides themselves! They said they just didn't expect such an improvement in Peter in such a short period of time - and that this was indicative to how resilient his lungs are and how fast they are healing. Confirmed without a shadow of a doubt that his pulmonary hypertension was/is reactive and that he has healed rapidly with his current treatment.
Then we talked about the overnight oxygen saturation test we did about a week or so ago. Dr. Abman talked about how most kids with DS have trouble at night because the low muscle tone is worse when they are relaxed and sleeping. However, Peter is sleeping soundly, maintaining solid saturations and showing (at this time) no indication of airway obstruction, etc. He actually said the sats were so high, it showed Peter was probably getting too much oxygen. WOW. I explained that Peter is a tummy sleeper and he said that was probably helping Peter and improving his breathing at night. He said until we see him develop issues with night time there is no need to do an extensive sleep study.
Finally, he said that we could either lower Peter's oxygen or take him off it at day and back on at night - the second being his preference. Then he leaned down and looked at Peter and said "you're doing great Peter" to which Peter responded by smiling and clapping! He said he wants to see Peter's next echo results but figures unless things change we can just talk on the phone and don't even have to take him back up. Even better! Now, if numbers drop we will have to put him back on - but no reason to expect that unless he gets a cold or something.
Tommy had come up to TCH with me, so we headed out happily and loaded up in the car. About 5 minutes into the trip Tommy screams out "Peter pulled his tubes off"....and for the first time I could say "It's ok Tommy, he doesn't need them now"....I think Peter was making a point as he dramatically ripped them off his face and started laughing!
So many, many, many prayers of thanksgiving are due today - and of course a few prayers that cardiology won't burst this bubble tomorrow. Will let you know.
Yeah! Yeah!! YEAH!!!! I held Peter and was almost in tears being able to just hold him and kiss his cheeks - I can now sit and kiss his cheeks!! - something I've only been able to do when we are changing out his tubes. I've waiting for 17 months to do this - and what a great feeling!!
Thank you again for all your support!! Will try and post pictures in the next day or so.
Love,
catherine
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