Starting July 2nd Corbyn was admitted to Johns Hopkins Neurological/Seizure Monitoring Center to see if the neurologists could help determine his passing out episodes. I have to admit that stay has been interesting to say the least. One of rules was that Corbyn had to have a parent at all times because he is a child. Since I am the one that normally stays with the kids in the hospital, I ended up staying with him the whole time. Because I stayed with him, that meant Ava also stayed. Ava stayed because she is my service dog.

Most nights the doctors have wanted Corbyn to be sleep deprived, meaning no sleep before 2 am and then up by 6 am. This has made for some very long days. This meant that I stayed up with him.

What we know so far is that the long tern EEG are all normal. However, Corbyn's blood pressure readings are off 30 points between laying, sitting, and standing. We also know that if he gets up quickly from a laying to the standing position, then his heart rate also jumps.

The doctors have him wearing pressure stockings (forget the name) and gave IV bolus, redid the blood pressure readings. They were hoping that the readings would be drastically different, meaning there would be a simple solution. Drink more, increase sodium, watch the getting up and going down. This was not the case. 

Because his readings are still off he will have to have a tilt table test with an EEG. They are suspecting his passing out spells are vascular related. I suspect it maybe autonomic related. We already have 2 kids with autonomic dysfunction. The neurologists at this point are not willing to call it autonomic dysfunction, other things need ruling out first.

What we do know is that Corbyn's episodes are not typical cardiac issues. His heart is strong, and has a normal heart rhythm. His brainwaves are textbook, there is no sign at all of seizures even during his episodes. Yes they caught several. Brainwaves are perfect

This still leaves his syncope episodes classified as "idiopathic" though. What this really means is, doctor terms for "unknown reasons for sudden loss of consciousness". Simply put, the doctors still do not know exactly why he keeps fainting or passing out. Idiopathic is a term I have come to really dislike. 

At this point he is to keep his water, salt, and protein intake levels increased. He has to wear compression socks every day as there was a slight improvement in his blood pressure changes with the socks. He has to watch how fast he gets up from any position. He is not to jump up at all from lying or sitting as we know this raising both his blood pressure and heart rate. If we are at any even where he could jump up from excitement, then those around him have to know that sudden jumping up can and may cause him to pass out.

Right now Corbyn is scheduled for surgery on the 14th to have his adenoids removed, a PE tube (ear infection drainage tube) removed and his ear drums repaired that have been damaged, one from the tube that has been in his ear for 11+ years and other from many severe ear infections and multiple severe ear infections.

However, before he can have surgery his platelets have to be between 150,000-200,000 and his were only at 30,000 at the beginning of the week. Darn ITP...

Yes once again his ITP or Chronic Refractive Immune Thrombocytopenic Purpura is complicating things further.

If we allow the surgery to take place with the dangerously low platelet count, this seemingly minor surgery will become a life threatening. He will bleed out on the table as soon as the adenoids removed. The eardrums, they may not be life threatening, but they will be much messier than normal.

We see his hematologist tomorrow and he will either give the green light for surgery or tell us to reschedule again. I am sure we will be told to reschedule until we know more about why Corbyn is passing out. At this point I am totally fine with his surgery being rescheduled again. I have confidence that his hematology team will help us make the best decision for him. I also know they will make sure the other doctors are communicating with them, one of the issues we have been having.