Finally! Her 16-month pic uploaded!Today we visited the children's hospital in St. Louis where Alivia (and Andrew and I) stayed for 20 days last August. We've been back twice before, once a week after her discharge and then again in December, for a checkup, which was today's reason for visiting as well. Our insurance allows us two checkups a year with the team there, so we go every six months. We're fortunate in that our local cardiologist is somewhat part of the St. Louis team and visits there nearly every Friday, so he can communicate to them anything about Alivia and vice versa more easily than another doctor could.
Everything went well today. We arrived early, stopped at the lab for a blood draw (they are SO good there at drawing blood samples from little ones - it was so quick!), then checked in for her echo. Our last stop was the doctor's clinic, where they weighed her (20.8 pounds dressed!) and did the usual vitals. We went over her history with a resident since it's a teaching hospital, then we waited for the doctor to read Alivia's echo.
He came in saying her heart looked much better! However, how much better it looks compared to March, when we first saw improvement during a local cardiology visit, is up for question. His frame of reference was from December's echo, which had shown no change since her diagnosis. I gave him the one number I recalled from March's echo that had improved, and he said today it was one percentage point better than that! So yay! He also said the heart's shape looked much better, though still abnormal. But it seems as if everyone is thinking her heart is working on "normalizing," as his nurse put it. For that to actually happen would easily be the greatest prayer to ever be answered in my life. It's so hard knowing/predicting what her heart is going to decide to do, but the fact that it is behaving for her right now is so, so wonderful.
Based on how well she looks clinically and her improved function, the doctor said he thinks it's safe to wean her off one of her two medications - the diuretic that helps pull any excess fluid that can build up around your heart/lungs when your heart isn't strong enough to do that for you adequately. So tonight we skipped her night dose, which we'll continue to do for a few weeks as we watch for any changes. If all goes well, we'll remove her morning dose and then let her cardiologist see her a few weeks after that!
So, overall, today was a good day. A very good day. It's hard to let the good in this situation completely override the nerves involved with visiting the hospital and the apprehension regarding all the "what ifs" in the future, however ... but I'm doing my best to be ONLY grateful. How blessed are we?! Despite this journey we've been on, which is still unbelievable, unreal and very scary, God's strength and healing powers are evident. I may never understand the Why's surrounding this path our family is on, but I do understand that we are surrounded with love and support as we go on it.
No comments:
Post a Comment