What could be better than Evanna demanding to eat her snack pouch orally? A new pulmonologist who actually listens to you, agrees with you, and cares enough to ask about and spend extra time listening to our rather stressful history surrounding Evanna's sleep apnea diagnosis. I left today's appointment feeling like the 7 hour round trip was worth every minute and excited to be working with this new doctor. And because this is JoAnn speaking...here's ALL the details.
The appointment went wonderfully from start to finish. We've been working really hard to convince Evanna that doctors are not to be feared, and it's working. She entered the exam room, got her height (she's up to the 10th percentile!), weight, and oxygen saturation levels checked without getting upset (no vomiting...yay!). The doctor came in, introduced herself, explained that she had been reading Evanna's chart to get caught up and apologized that we hadn't had any continuity of care in her department, as we have seen a different provider every time we have a pulmonology appointment. She had some questions to fill in some gaps in the chart, and we started talking. Some points we discussed, in random order:
- She's due for a sleep study but isn't scheduled for one. I explained that I requested an appointment first because I didn't think we'd have a successful study with her current level of anxiety. She wants me to watch a sleep study video on youtube with Evanna, do some play therapy with her to prep for the application of all those leads, and let them know when I think she is ready to try.
- In December 2017, we did a split night sleep study. I explained that I had requested it because all they had planned was a titration study (mess with the vent settings as she slept to find the best ones for her current needs). I wanted a new baseline done without the vent because I didn't feel that the first one done TWO days after her second brain surgery in a week would be very accurate. She agreed but explained why a split night study isn't very accurate either. She highly recommends that we do a completely new baseline, no bipap all night, study. The techs would call her in the middle of the night if she was in any danger and needed to stop and put the bipap back on.
- Given Evanna's stats on that split night study, she wonders if Evanna even NEEDS the bipap. She came from CHOP (Children's Hospital of Philadelphia), which US News ranked #3 best children's hospital overall and #2 in pediatric pulmonology. She explained that at CHOP, they don't even treat children Evanna's age unless their AHI (apnea-hypopnea index) is 20, looking at central and obstructive apnea separately, not their combined total. The split night study showed Evanna's was 12 and 10. Now given that it was just a couple of hours of data, it might not be too accurate...but it does suggest that she may be ok, as long as she is growing and developing normally, without the BiPap. That could be good news because long term use of BiPap in children comes with the risk of causing midfacial hypoplasia, which Evanna is starting to show signs of developing. She emphasized that we have to weigh the risks of apnea with the risks of the BiPap, and we really don't want to cause harm by sticking with BiPap if it isn't truly needed. (I doubt Scott and I will be able to let her sleep without a pulse ox for a long time, though.)
- Speaking of midfacial hypoplasia, apparently Stanford has been working on a preventive treatment for kids who need BiPap long term. She's going to email me the information so I can learn more about it. It might mean figuring out how to travel to and pay for treatment at Stanford, but if Evanna does need continued long-term BiPap treatment, it could save her a LOT of future problems and invasive cranal facial surgery, which is all Seattle offers for it.
- With the conversation going so well, I told her about our PICU stay when Evanna was originally diagnosed...about how stressful and bad it was, about the dismally negative prognosis they gave us. I explained how we chose life for Evanna despite initially being told she'd likely go directly to hospice and die shortly thereafter and vowed to love her and enjoy her however long she lived. I explained how our decision to not trach her was based on quality of life for Evanna and the rest of the family with the same mindset...we would love her and enjoy her however long we had with her. She stood up and came around the desk to give me a hug, and another, and another for us making that choice and for our experience in that PICU.
- She told me that she was glad we didn't agree to trach her.
- She told me that she would be happy to take over Evanna's care. She told me that this discussion wasn't done just because she was over an hour late for her next patient; that we will continue talking via email. And she gave Evanna high fives and fist bumps.
And that, my friends, is how you make my day!
