No, not goodbye to you all. Hello, in fact. How are you?
Today surprised us - like everything else with Ellie...you just never really know.
She did really well in the x-ray chair during her swallowing test. She ate a few bites of food and took some water (mixed with white chalky barium) and it all went down the right way!
Then we had her ultrasound on her heart and it looked great - her pulmonary hypertension is under control after her heart operation!
And lastly, we spent over an hour in her appointment discussing her progress with her cardiologist, pulmonologist and nurse practitioner. Ellie looks FANTASTIC! Alleluia - she can come off of her remaining two medicines! A dream come true! We can finally see those lips without dry peeling skin all over them.
And here is the goodbye - the folks that we've seen since day 14 of Ellie's life told us...we don't have to come back to Atlanta any more. The clinic site here in town can forward her tests and progress up to them and they told us we didn't have to necessarily come back to see the team up there.
What a team they are indeed. Some tears were shed - just by me of course. But I couldn't help it. Goodbyes are hard, sad and confusing. They know a lot about our family and we even know a lot about them. We know their kids' ages, we know two of them are also Catholic, we learned about some interesting vacation spots we'd never heard of. We had some wonderful laughs along with the tears this past 16 months. They are special people and they took excellent care of our girl even when our brains were too foggy to even know that what they were doing was saving her life. I sincerely hope they feel fulfilled at home every night because they have been instruments of God for Ellie.
Now that I've given you all the nice, shiny, polished, glossy news - here are some realities that are well...real.
1. She did swallow some water into her lungs when I showed them how I put my straw in her mouth and let water flow into it. It catches her off guard and makes her choke. They said don't do that anymore. O.k.
2. Ellie's heart still has a small leaky mitral valve. While minor mitral valve regurgitation is relatively harmless, severe leaking can lead to heart failure if untreated. Ellie's is mild. All we'll do is go annually (we think) to her local cardiologist to keep an eye on it and check her heart repair and that will just be part of Ellie's routine.
3. It will take one month to back off the two meds - we came up with a schedule of weaning. We already started tonight though and it was nice to not give as much! I better call the supply company to stop the package of 200 syringes that are being delivered this week! What a fun call that will be!
4. Her weight is down. At home, our nurse and I had noticed the more we fed her by mouth the more it made her throw up and loose all those calories we gave her in her tube. So we are backing off the oral feeding and making sure we stick to the number of ounces she needs per day going into her tube. She needs her nutrition to grow and be strong!
We're still adjusting to the reality that we don't have to travel any more, as far as we know now. Like I said, it was a surprise probably because we really just didn't have very many expectations. I had really hoped the medicines would be gone soon so that is just amazing and wonderful! Thank you Lord!
