Day 379

Ava had a rough night and her blood gas came back at 139. They got the gas a different way than normal so they really upset her. They retook it and it was 79. A chest xray was taken and the upper left side of her lung looked a bit collapsed, but not horrible. She got another blood gas after going up in her breath rate to 24. They also gave her a higher dose of steroids and she is on about 2 liters (38%) of O2. Allergy and Immunology came by and decided to give her transfusions of immunoglobins once a month until probably June to fight off any sickness. Once she is home we will have to come in once a month and get Ava transfused for about 5 hours. I guess I would rather feel a bit more safe that she can fight off illness. She got another gas later this afternoon and it was 69. I'm so glad she got better and they didn't have to put her back on the conventional vent and no paralytic as well. She did not have a urinary trach infection either.

We had the doctors check out the fluid on the back of Ava's head and they are going to do an ultrasound in the morning. Please pray that it is fine. They think it isn't a major problem.

Anthony and I did our "bunny" run where we took a stuffed bunny with a trach out to the car with the stroller and load the bunny up into her car seat as well as her vent, pulsox machine, O2 tank, suction machine and diaper bag. We did not fit the greatest and we think we should get a bigger car. We could never fit, Anthony, Alexandra, Ariana, Ava, a nurse, myself and all of Ava's equipment to go anywhere. We were planning on waiting a bit because Ava would only be going to the doctors for a while, and the girls won't go with us, but it is so difficult to even fit Ava. Please pray that we can find a vehicle that we can afford to fit all of us, as well as Ava's equipment and nurse. The Lung center respiratory therapist would pull off parts of her circuit and we would have to find what came off the vent and put it back on while the vent would alarm. What was funny as we were strolling down the hallway with all of our equipment in the stroller and the bunny, is that no one realized we had a stuffed bunny in the stroller. They would look at all the equipment and never notice the bunny.

We have a meeting this Thursday for Ava's discharge and hopefully she will be ready to come home.

Thanking God for humor during our rough day and praying that Ava feels better soon...