Breathing 101

Although Faith enjoyed her visit with her favorite Neurosurgeon he did not bring her many answers. While he did agree that her breath holding spells were probably a neurological issue, he informed us there is nothing he can surgically do about it. His recommendation was to defer to any solutions the pulmonologist had to offer.

Non-related to the breath holding spells the Neurosurgeon brought some good and bad news regarding Faith's most recent MRI.

Bad news - A new pocket of fluid has developed inside Faith's spine around vertebrae C7-T1 this condition is called Syringomyelia. None of the symptoms associated with this condition have shown them selves, but the potential for complications with this issue down the road is possible. I won't go into the details, but the complications are not cool. Please pray that this does not become an issue. Additional MRI's will be performed durring our stay to monitor the situation.

Good news - The cyst in Faith's cerebellum that the neurosurgeon was debating on addressing with a stint during her last visit has subsided. While he is not sure what, if any, issues this cyst was causing, our hopes are that this cyst is somehow related to her vocal cord and swallowing issues.

To partner this good news with something else that had happened earlier in the week. A doctor was putting a tongue depressor in Faith's mouth and Faith gagged! (For those of you just tuning in, Faith's inability to gag is what got her the G-tube) Ashley got really excited about the achievement and exclaimed "She Gagged!". The puzzled doctor tried to explain everything was okay and that she didn't hurt Faith. Ashley replied "No! that's great! She wasn't doing that before!.... Can you do it again?" "Sure" The doctor replied, surprised at the strange request. She did it again and sure enough, Faith has got her gag back.

We hope that this means she has regained control of her swallowing and vocal cord function as well, but haven't taken any steps to see yet.

Upon further consultation with the Pulmonologist he informed us that the CT scan revealed some portions of Faith's lungs are collapsed. The best way I can describe this is in the picture below. He said that this is not uncommon with kids who have been on a vent for a while, and it is now hindering Faith from taking full breaths. He thinks that if we treat this condition then she could potentially get off of the oxygen!!! Please lord heal those little lungs!

The treatments to help expand her lungs are called Cough Assist treatments. They work by filling her lungs with a little more air than she would and she naturally does the exhale on her own. During her treatment she was exhaling through her mouth and she was making noise! (See video below). While this does not necessarily mean she has her vocal cord function back, it sure was nice to hear her voice again.

The pulmonologist's initial suggestion to prevent the breath holding spells was to put Faith on iron and one other inhaled medication that had potential to prevent these spells from happening. After a one day trial period on these two medications Faith had two episodes. The Pulmonologist removed her from these meds and said he would like to see if her Cough Assist treatments do the trick. We will wait and see.

Thanks for checking in and all your prayers.

Love,

Mic and Ashley