Relapse

Friends and Family,

I am sure you have noticed that I have not updated the blog in sometime. I don’t like to be the barer of bad news and Faith’s situation has gotton worse over the past week. While Faith has been able to breath on her own, the doctors did not feel that her breathing ability was improved enough to take her home. The doctor’s concern was that Faith’s vocal cords were still paralyzed and that if any unforeseen event occurred (respiratory infection, fever, allergies, etc.) her airway could close up and put her in a very risky situation.

In addition to breathing issues it seems that Faith has also lost her ability to swallow. This means that the muscles in charge of protecting her air way and moving fluid down her throat are also paralyzed. Instead of feeding Faith with a bottle she is currently fed through her nose with a tube routed to her stomach.

On Friday we met with all of the specialists associated with Faith’s case. The plan was to perform a CT scan Monday to review the cyst in her brain. If the cyst was larger the Neurosurgeon would place a stint to allow this area in her cerebellum to drain. If the cyst in her brain was the same size or smaller the Neurosurgeon would do nothing and Faith would go to surgery to have a tracheostomy and a gastrostomy. In short the trach would be a tube below her voice box that would allow her to breath, the gastro would be a tube directly to her stomach that would allow us to feed her. Both of these items can be removed and heal back up in the event that she grows out of these issues.

This was the plan...

Over the weekend Faith began showing signs of relapse. The night nurses reported that Faith was having more apneas and what appeared to be mild seizures. Up to now it seemed that these issues had been resolved by her decompression surgery, so this was very alarming. Today the CT scan revealed that Faith’s shunt had stopped working and fluid has begun to collect in the upper ventricle of her brain again. We are waiting to here from the Neurosurgeon, but we assume that he will want to perform surgery as soon as possible to replace the shunt.

Ashley is with her now and we will let you know as soon as we know more.

Thanks for your prayers.