What a difference VEPTR makes

Before and After

Here are Ava's X-rays. Before surgery, a lot of things were scrunched in a small space and are now more opened up. It also really helped the scoliosis and her ribs aren't so close together. When she gets her second Veptr on the other side it should help even more. She is doing well at home, but it is a little hard to get used to the guidelines they gave us for her holding and moving her. We aren't supposed to let her crawl or put any pressure on her arms for another month. That will be tough since she started doing those things before surgery. Tomorrow Morgan and I are going to take off her bandages for good and give her a bath, so I'm a bit nervous about that. 

Home at last

After being gone for 3 weeks, we are finally home! I am so tired so will post more tomorrow. We are all doing well and made it home safe and sound. Time to get our lives back in order.

New Baby

Day 12

Ava has been a little energizer bunny. For some reason she decided she doesn't need to sleep anymore. Morgan and I are loosing our minds a little bit. I think it's the combination of being stuck at the hospital, attached to machines, etc. But, they are talking about letting Ava go home tomorrow! They are pretty sure she won't need BiPAP for home. They say it's not uncommon to need a little help with BiPAP after the VEPTR because there can be some areas of collapse in the lungs, causing the lungs to not efficiently expel the carbon dioxide. Her levels have gone back to normal which is so great. I can't tell you how cute Ava has been in the last few days, but she is like a new baby in some ways. For one thing, she is taller because her spine is more straight, but she is also more smiley and alive in general. She also doesn't seem to be struggling to breathe as much. When she cries and gets really upset, she doesn't turn dusky. I can't believe it. It's amazing.

Go to Sleep!

Day 11

Ava woke up at 5:30 this morning and  didn't go to sleep until 10:30 p.m. (17 hours) .We tried everything all day and she was just wired. They say it is withdrawal. She didn't have BiPAP all day as a test run to see how she would do without it. She did great. She was so cute all day, but had to be held the whole time, because she would throw a fit. They told us to keep her pretty calm for her test run, so crying it out wasn't really an option. That was challenging. We will see what the Docs say tomorrow. She may be going home pretty soon! Goodnight.

Even Better

Day 10

Today was the first day Ava smiled and laughed. She was much more herself today. She got to have 3 breaks from the BiPAP  and loved every minute of it. She still has to have it, but her carbon dioxide levels have gone down to a very good level. We are so grateful for that. We will have to see if she can keep her levels down without the mask, if not than she will have to have it at night. She was a lot more active today(compared to laying around in bed) She sat up quite a bit, and even stood up when leaning against me. We have to be careful not to push her to hard because she is still very weak and shaky. Her pain seems to be pretty much under control now. She is still on tylenol and one other medication, but she hasn't had to have morphine since thursday. She might be having a little withdrawal from it, but nothing too extreme. We are planning on posting her x-rays soon, to show how much the VEPTR has changed her. It will take around 6 weeks for her to get back to normal, but in the mean time she will have to get her cleft palate repaired. Poor girl. So many surgeries in such a short time! One day she will catch up, but she is doing so well developmentally for all of the setbacks. She was talking a lot more tonight and we were all having a grand time. I'm so glad things are looking up.

Better

Day 9

It's been a better day. Ava is still on BiPAP, but has resigned herself to it. She is not happy about it, but not fighting it either. The carbon dioxide levels continue to come down and they gave her a break (called sprinting) for 1 hour today. She really seemed to love the break and her oxygen was fine without it, but they put it back on because she needs it to lower her carbon dioxide levels. My parents came back up and brought our guitar, so we have been enjoying playing for her. It really humanizes the hospital room.  She was very cuddly when she got her mask off for that hour, and it was great to hold her. The BiPAP is a good thing because it puts pressure into her lungs and helps expand them, but we hope she won't need it permanently. If she did, she would need it only at night. Morgan and I are doing fine. I think we are keeping our sanity fairly intact.

Our little Scuba Diver

Day 8

Okay,  so she is not happy in this picture, but the good news is that she can sit up by herself! That is a big milestone after surgery. Unfortunately she has to wear this bulky mask for who knows how long. She has been doing better today and her carbon dioxide levels have gone down, but they are still not where they should be. Ava isn't quite herself today. For a large part of the day she was awake but in a daze. There was one point where I was drawing next to her and I showed her the picture and she grabbed my colored pencil and hit it against the paper making a lot of marks. It was very cute and I was proud. Ava doesn't get the best sleep because people are always coming and going in the PICU, but we try to make her comfortable. Morgan and I were saying today what a stupor our minds get into when we hang out in this hospital all day. The days all run together and we always seem busy but there really aren't that many different things we do. Mainly standing by Ava's bedside helping her to calm, or taking care of business. We found out from Doctor Campbell that we need to come back in 3-4 months for the second VEPTR, so that's a little sooner than we thought, and right in the middle of the semester. Thinking about real life is hard right now. School is very important, but not as important as this. It's a great balancing act indeed.