The words we were waiting to hear - "Pulmonary Hypertension - Resolved"
Peter had his appointment with Dr. Duster today. I had a client meeting in Denver which I ended up having to walk out of so that I could race down and meet John at the doctor's office. They took us back, and we did Peter's usual strip tease for the pretty echo technician. She turned on the Baby Einstein video. Maybe, just maybe, this time Peter would be interested in watching it. Nope.... not really interested. Instead he tugged at my earrings, tried grabbing the cord of the probe and generally tried wiggling right off the table. I whispered in his ears, but could barely hear my words because my heart was pounding so loudly in my chest. I keep glancing over at the screen reading numbers hoping I could guess which was the pulmonary pressure - there were numbers all over the board which only shortened my breath and quickened my heart.
Finally, I swallowed and took a deep breath. In an attempt at a cheery voice I said "So, what are Peter's pressures at today?". "She's used to me asking" I thought, surely this will be no different than any other time - and I just need her to tell me which of all the numbers I saw was THE number. "Well" she said, "I'm not sure what numbers you are used to so I'd rather Dr. Duster discuss these with you". My heart stopped. i stared at her - was there a smile? Did I miss an encouraging tone in her answer? "Why can't you tell me this time??" I wanted to yell! They've had no problems telling me before - why not this time?? I looked over at John. He was entertaining Thomas. I honest felt the world swirl around me..... my head was screaming "JUST GIVE ME THE NUMBER!"
We headed back to another room for another nice technician to come in and check Peter's saturation rates, vitals, etc. I stared at the machine - I was willing the numbers to be spectacular. A 95 keep showing up.... "how can that be? at home he's 96 to 98!" At that point my obsession with a single percentage was intense. She seemed happy with the 95. Well, ok, but really - I just want Dr. Duster with the gosh darn pulmonary pressure!!
Finally he arrived. He was clearly jet lagged from him trip to Vietnam. His eyes weary, but his smile big - I hoped this was a good sign. We struggled back and forth trying to share information. Finally I was going to get the pulmonary pressures.... "twenty four to twenty seven" he said. Oh no! that was up from last time....should I panic or should I not? Gulp. "So?" I uttered. He looked at me at me and said "which is normal for us here in Colorado Springs, and in this case normal is good because there is nothing better than normal". The world stopped swirling, my heart didn't seem so loud, but I know Peter wanted me to not grip him so tightly.
Then we discussed next steps..... and much to our surprise Dr. Duster was advocating just getting rid of the oxygen because keeping Peter on tubes was going to impact his development. We talked about keeping Peter on at night, or taking him off. We decided to contact The Children's Hospital again and talk to Dr. Abman. Give him the results of this echo and schedule an overnight oxygen saturation test off of oxygen. If that comes back normal, then off of oxygen we go 24/7!! A follow up echo in 6-8 weeks after we pull the oxygen to get our final seal of approval.
Dr. Duster always records into his little machine before he leaves the room - dictating his notes and occasionally asking us a question as he speaks into the recorder. I always wonder about the person who listens to it. Then again, I've been told it is a software that interprets and generates a document. I like to think it is a little person sitting at a keyboard carefully listening to each word. Someone on the other end of the recorded message who now knows Peter and cares about what this message would say. The same routine as usual as he recorded the message - Peter's age, weight, sats, pressures, etc. Then something nice about the parents. I joke that him saying "Mom asks sophisticated questions but we are now on the same page" is key code for "Mom is a pain in the rear and asks too many questions'. But, he recorded his nice message about our family and then does his final section. He reads off each of Peter's medical diagnosis and the status. I know this piece - ventricular septal defect - residual blah blah blah as down the list he goes. Then he gets to Pulmonary Hypertension and he says "pulmonary hypertension" silence, silence, silence followed by "Resolved". Oh thank you dear God for this miracle!! After 17 months and 18 days we finally heard the words we've waited to hear..... pulmonary hypertension - resolved!! I have played those three words around in my mind for the last 9 hours! I thanked Dr. Duster about thirty six times - and I just wanted to say - "You Dr. Duster are the instrument God used to give me this miracle!". I did my normal greeting at the desk, waived at the lady in the back that used to work with me at PacifiCare, and I walked out. The floor felt light, the sun bright and I cried. I held Peter in my arms - whispered what a good boy he was and I cried tears of joy, tears of thanksgiving, and tears of praise. Thank you God for my little healthy boy!!
Pulmonary Hypertension - RESOLVED!!!
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