New Ground?

In the previous post, I mentioned Macayla had a seizure and was passed out. That was on a Tuesday morning. She kept having grand mals through that following Friday! Mulitple each day. Last week she was pretty clear until Saturday morning she had a short one, but it was not bad. But she has struggled more than usual with breathing and processing saliva. She gagged and choked a lot Sunday and Monday of this week. At times she would turn blue briefly. The strange thing is that a majority of those times we would not get any thing out when we suctioned her.

We also noticed she would sound raspy or gargle when breathing in but not out. So, we are beginning to think she may be losing a little tone around her airway. It may be the actual muscle tone or it could be a signal not coming from the brain properly. If it is a signal problem, it will probably return and go away several times and to varying degrees. So, if that is the case, we are going to explore what options we have to make her most comfortable through those moments. This is a common progression in Battens and other progressive disorders. One option may include using a CPAP to keep enough pressure in her airway to help hold it open. Interestingly enough, I was just diagnosed with sleep apnea and will have to be fitted for a CPAP. Macayla and I might be twins! However, there are some drawbacks to a CPAP for Macayla such as the mask irritating her face and not staying in place when she wiggles in the bed. The mask can rub and irritate the skin and cause breakdown. (Maybe I don't want one either!) There are nasal cannulas but she keeps her mouth open all the time, so those probably won't work. But, we have to observe more prior to making any steps in this direction.

She breathed better yesterday, but was exhausted from the previous two days and nights of struggling. She slept through a better part of yesterday and last night. Today, she will see her neurologist for a six-month checkup. We are hoping to learn a little bit more about what these stages can look like. We may see our genetics doctor next week. He's great to discuss these types of challenges with and what decisions we may need to make. This may be new ground or just a bad week or both. By the way, as I'm typing this, she just sneezed and it made her smile!

We are praying for wisdom and discernment and her comfort and healing.