Day 878 - Breathing without a vent...

Ava had her "capnograph" test on Tuesday night this week. She was off the vent all night. We didn't officially get the results until today. Ava is now officially off the vent 24 hours a day. Thank you God! Her median O2 sat was 95 but that is also for when she is moving around and her pulsox drops (not because of Ava, just because of her movement). It's hard to believe how far we have come in one year. She just has to thrive and grow a bit and then hopefully the trach will come out. Hopefully she will keep the weight on while she is walking and crawling all over the place.

Ava weighs 12.50 kg = 27.56 pounds.

Thanking God for Ava being off the vent and praying for her to eat and be trach-free...

Day 867

I called Lung Center and they decided that we should stay the same amount of hours. If Ava isn't sick and still doing great, she will take another monitoring test next week. She will go off the vent all night! 24 hours in a row and no vent for Ava! Please pray that it goes superbly well.

Thanking God for the gift of Ava and praying to be trach-free soon...

Day 860 - 6 hours off the vent...

Ava got the ok to go off the vent for 6 hours today! Once we are good with the 6 hours, we will take another test to be off all night! We are moving full speed ahead. She also is gaining weight as well.

Thanking God for Ava's progress and praying for her to eat and not gag...

Day 856 - Being tested...

Last night Ava got tested for her CO2 levels and O2 levels while she was asleep off the vent for 6 hours and on the vent the rest of the night. We found out today that she did really well and we are now able to be off the vent 6 hours at night. Less than 6 hours to go! Praise God!

She actually satted above 97 and her CO2 levels didn't go over 44. Most of the time were in the 30's. That is very good. We know she will do great on her next test which will be off ALL night in a couple of weeks.

Thanking God for Ava coming off the vent and for great test results and praying for Ava to eat...

Day 854 - Lung Center

Today was a hard day but thankfully we are still moving forward. We went to Lung Center and after ENT saying that we would definitely be decannulated this summer, Ava's doctor said that it might not be until November. This was quite shocking and I broke down into tears. Not because I "must" have Ava be without a trach, but rather because of our lack of nurses as well as the daily judgements I receive from the ones we have. We are quite often without night nurses and we are told this hours before that's the case. Or make that even minutes before they are to be at our house.

The doctor did decide to have Ava tested over night on Wednesday night to see if she could go off the vent for 6 hours (half the night). If she does well, we will be able to keep her off those six hours. He did say that if everything goes well, we should be off the vent by mid-July. They also would like to get a blood gas to see how her CO2 levels are.

Thanking God for Ava being off the vent and praying for relief and her to be vent and trach-free...