Today we went to ENT and Ava got a prescription for a Passy-Muir Valve. This is a speaking valve that helps her to use her vocal cords as well as better swallowing. The doctor also thinks that she should be decannulated by the end of summer. The thought of her being free of her trach is unbelievably exciting. No more night nursing, no more need to stay up all night-every week! Maybe it would also mean she could eat easily! I could drive all three of my children around without having someone next to Ava. Can you imagine - being able to drive my children around - all of them together - by myself?! I could actually go to the store when we need something and not have to wait until we have a nurse or my husband is home?! Incredible!
The doctor also wants to do a bronchoscopy to check out her trachea before we are at the point of delaying her decannulation. We scheduled it for April 2nd, before I get super busy with the Taste of Buffalo.
We were hoping she would speak but she isn't a big fan of the valve being on. We are looking forward to the day she can say mama and daddy, Ali, Ari and Ali wants Ava to tell her, her favorite color. Ava breathes very well with the valve on, despite you can only breath in, not out. If you can take her mind off of it being on, you can get her to keep it on for at least 15 minutes.
Ava also got her IVIG on Wednesday. She was completely terrified of the needles and she had to have blood drawn. We go next week to Immunology and hopefully her blood levels are perfect and she will no longer need infusions anymore. Ava is so strong and it takes three of us to put an IV in. We should find out this week what the results were.
Thanking God for Ava's lung growth and praying for her trach to be gone by the end of summer...
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