Day 715

This week has been much better since Sunday. We have had a few nights this week without a nurse. The nurse that was just hired, is working the rest of the week. Her family was sick so she didn't come in one night. We did take the nurse off our case on Sunday night.

Ava got IVIG (immunoglobins) on Monday. We heard from the Allergy doctor on Wednesday and he said her IGg went up to 634. Last time it was 270, but that seems very abnormal, so hopefully the 270 was incorrect. IGa which went up to 17 from 14. It does need to be at 35, but he said it's ok that it is 17. Her blood test she took at least a month ago to find out if her DTAP shot stayed in her body and activated the right responses. That test came back that it has and he is waiting for another result this next week to find out if we can start giving her live vaccinations. He said that everything is looking good. This doesn't mean she might not get immunoglobin infusions all this year, but things are looking better. She also got her Synagis today which she gets once a month until March.

She has only had 2 spit ups for 20 mls all week. She is doing very well and is eating about 1-2 jars of food a day. Once we get to 3 jars a day we can go down in her volume of Pediasure she gets. Once we work milk into the equation, we can eventually get her off the G feeds. Next Wednesday we go for the swallow study to see if she aspirates when she eats.

We also got approval to go back to Ava being off the vent for 15 minutes twice a day. We are going to do this until a week from this coming Monday. Then I will call Lung Center and I am hoping we can go to 45 minutes. The RT told me that we can go faster after this point so we will be going longer every week.

We can hardly wait until the 24th for Ava's 2nd Birthday. It's hard to believe that 2 years ago, she came into this world as big surprise. God's plans for her are amazing!

Thanking God for Ava's growth and praying for her immune system to be strong and for her to be vent/trach free...