Rules Outs & Updates

Yesterday right after our post, a rapid response team was called to our room. This is something you never want to experience. Alarms went off throughout he entire hospital, and around 20 people were called to our room over the loud speaker. Basically Oliver repeatedly desatted, which means his oxygen levels dropped. They dropped so low, 37 (normal range is 96-100) that his lips turned blue. Anything under 50 is hard to measure correctly, but you get the drift. For a moment we thought we may lose him. Thank God he soon perked back up and we avoided a ventilator...or worse. 

Ollie on the ipad and mama writing this blog post

Due to the breathing issues, we were rushed into the PICU. He has not needed oxygen and has been really stable the last 20 hours. We are SO thankful. Clearly the constipation, urinary retention, and aspiration are taking a backseat to the issues with breathing. His chest x-ray came back clear and renal ultrasound came back unchanged from his last one in June (kidneys are a big issue in TSC). I suppose we are happy about this, but we wanted a smoking gun; a clear reason for all this. Anyone with a medically fragile child, with a genetic disorder knows that answers are elusive. So today he will probably have a brain MRI (they are worried about the risk of aspirating while he is under sedation) and they will begin reading the data from the EEG that started yesterday afternoon.  We already know he has many brain tumors, some tiny, some larger. They are not cancerous, but 3 of them, called Subpendymal nodules, could be life threatening. However, we have been told that if they had been growing he would be vomiting, and that has not happened at all. At this time we have some things ruled out (lungs and kidneys), but no answers yet. 

After consulting with Dr. Greenwood (Pediatric Neurologist) we have a working theory that may piece all this together. A key part of this is the fact that for all of his life Oliver has stopped seizing when he is sick. He has not had his regular seizures for months and he has been sick for months now. Once they have done more research and we see the brain MRI we'll potentially know more. It is a ray of hope, but much is left to uncover. Basically, all this could relate to the way the mTOR pathway works with TSC...it is especially connected with autonomic nervous system. We are confident in our team here. Y'all are so sweet and we appreciate everyone's thoughts and ideas about what is happening, but at this point I have to have over 50 texts or FB messages with a suggestion, test, diagnosis or article to read. I simply can not keep up with all of them and I thought you all may like to know all we've done and what we are potentially going to do. 

Done- Full spine MRI, it was clear

Done- Abdominal CT, it was clear 

Done- Kidney Ultrasound, it was stable

Done- Chest X-Ray, it was clear

Done- Swallow Study, he is aspirating thin liquids, we are currently on a nectar thick diet

Done- Blood work and urine samples (many times), all were within normal range 

Done- EEG in Wilmington in October, nothing unusual

Doing- EEG here in Chapel Hill, no seizure activity. Desaturation events are not related to any seizure activity. 

Getting his EEG placed

Possibly today: MRI of the brain 

Waiting until we know more and trying to determine if we need them at all: Endoscopy, Colonoscopy, Bladder Retention Test (that I can't remember the name of right now), pH probe, and a host of other ones I can't recall. 

We appreciate all of you so very much. We are especially grateful for our church community ever faithfully praying for us and encouraging us, our friends who have been walking through this with us for months, our family who has been with us from day one, and of course our Realtor family that continues to warm our hearts with their beautiful generosity. 

In short, your love holds us together when we want to fall apart.