Today was truly an amazing day. I will get started with our first appointment which was immunology. Amazingly, we were early but still had to wait about an hour to get seen. Ava fell asleep since she was up around 6am. She is such a good girl, I think she might no longer be a baby since she will be 2 in a few months! Anyways, immunology decided to still give her IVIG for at least 3 months and we can re-evaluate then. Since it's the winter months coming up, they also want us to keep her antibiotic (Bactrim) which supposedly doesn't harm her immunities. Her immunoglobins are now 638, down from the 760, but that still is good. The problem is one of the levels is at an 8 which is low but the good news is this level is the last to come up so they weren't very concerned. We had to rush the doctors because we had Neurology in 30 minutes and we were about a half an hour away (and we still had to load Ava and her equipment).
We had to wait for Neurology for over an hour. Ava was asleep again for this appointment. The doc poked her a bit to see if she had her normal reflexes and she didn't even wake up. We had her head measured here at 44.4 cm but just a few hours later someone else did it for Lung Center and found her to be 47 cm. So I will need to call Neurology and let them know. The doc also wanted a list of her head circumference every few months. Gonna get that together off this blog. ;) He said he is not concerned and I asked if "she is doing good?" And he said "really good." PTL! He also is taking her down to 1 time a day for her Keppra (anti-seizure medication) and we will go off it a month from today entirely. We still don't know for sure if she had a seizure but she has had no signs of one since.
After that we had a long break until Lung Center and I was so giddy with excitement. We went early and everyone was so excited to see her. Our pulsox probe (which detects the amount of O2 in her blood) was acting up and not accurate. They hooked Ava up to another machine to detect the amount of CO2 and the O2 saturations and she looked really good. CO2 in the 30s and O2 at 99 - 100%! I told all of them about how Ava pulls her vent off repeatedly and how she walks away in her walker away from the vent. While we were waiting, one of the other Lung Center docs, came by (and who probably doesn't know much of Ava's success) made a comment about this coming winter being hard and that we will need to get through the next 3-4 hard winters. At that point, I was kind of shocked, because I wondered if she knew something that I didn't, with Ava doing so well. The doctor came in after I spoke to everyone and he decided that we could go down in her pressure setting to 25. He did listen to her with his stethoscope when she was off the vent and he said that he could hear her air volume diminish to at least half. But after we went down to a pressure of 25 from 27 (which is the volume of air need to keep her lungs open) she did great and didn't have any change in her volumes or CO2. They decided to try 23 (which can be a final lung setting depending on the person) and she did the same - really great! So in 3 weeks if she continues to do well, we will have VNA come out and change her vent setting to 23. In 5 weeks we will go back to Lung Center and I don't know what's going to happen next. Just keep praying! God is working amazing miracles with Ava!
Thanking God for Ava's healing and praying for her lungs to no longer need a vent and she can eat like God has intended...
No comments:
Post a Comment