Josh's Accident and Situation

August 1, 2017 9:10 pm

We arrived here at Craig Hospital two weeks ago today. It feels longer than that, and because of the hydrocephalus, we haven't made the progress we hoped to make by now.

ST: Josh re-took the test he took on July 20. His score on July 20 was 6/20. His score taking the test last Thursday was 5/20. His score today was 3/20. He answered 0 questions verbally, and 3 multiple choice questions (with 3 options) correctly.

PT: Josh didn't have much energy for it, but walked around the 3rd floor, which was good. When he finished his stroll, his therapist put him on a stationary bike. He quickly fell asleep and could not be awakened to complete his session.

The ENT doctor checked Josh's nose and throat today.

As you can tell from the video, this wasn't comfortable for Josh. The good news is that he seems to be able to breathe reasonably well through both nostrils despite the fractures he sustained in the accident and his vocal chords seem to be healing OK, although it will take months before we know for sure. The bad news is that he has a right vocal process granuloma. This was caused by the ventilator tube rubbing against the skin. It's like a callous that looks like a pearl and it worsens with talking.

But here is today's big news: Josh had a CT scan at 9:00 this morning to check the extent of his hydrocephalus. (The picture below shows his brain bulging. See where his scar is on his forehead? The part that's bulging is his actual brain! Hydrocephalus is fluid that collects in the middle of the brain, pushing the brain out. The second picture is from a week ago.)

 

While the doctor made it sound like the results of the CT scan were insignificant, the neurosurgeon put a rush order on the synthetic bone flap (which Mary requested last Friday) and he wrote transfer orders to get Josh into the Neuro ICU as soon as possible to put a temporary drain in his brain. But there were no open beds in the Neuro ICU, so the only way Josh could get a bed there is if he went through the ER first even though he didn't need any ER services. (Stupid, stupid, stupid - the red tape infuriated Paul, and he let it be known.) So at 3:45 we were admitted to the ER where we waited for nearly three hours until a bed was open in Neuro ICU.  (They had to go to great lengths to make it happen, moving people all around to different units and beds in the hospital.)

At 6:30 we were admitted to the Neuro ICU. The brain swelling was worse than Dr. Rubin (aka. Ben, the young neurosurgeon) expected. If they could wait until tomorrow to do the surgery, that would be optimal. But the doctor said that Josh's condition won't warrant that; he believes that by tomorrow morning Josh will be in a coma because his brain is swelling too fast. But doing the surgery tonight presents many complications, the worst being brain hemorrhaging because his blood is too thin. Josh has been on Lovenox (blood thinners) for over a month. If they had been planning ahead, they would not have given him Lovenox this morning - then they could take him in to surgery immediately, which is what Josh needs. But they can't take him into surgery with his blood so thin.

It's a conundrum, but at this point there is no choice. Josh needs surgery ASAP. So Dr. Rubin ordered Josh be given Protamine Sulfate to counteract the Lovenox. We are now waiting for it to take effect before Dr. Rubin can do surgery. Brain surgery to install the drain will happen at 10:00 MST tonight. We will post again after the surgery.

We will stay in the Neuro ICU until after his bone flap surgery, permanent shunt surgery, and recovery are done. That is estimated to be about one week to 10 days. So not much in the way of rehab during this time, as Josh will be at Swedish Medical rather than Craig.  We aren't happy about this digression, which we believe could have been avoided had the doctors listened to us a few days ago.  But this is where we are and so we move forward from here.

The following two videos illustrate the regression that Josh has experienced over the last few days due to the hydrocephalus. The first one shows him as a conductor, leading imaginary music. He did this for the first time ever tonight, and it went on for about 25 minutes. The second video shows him doing the same repetitive motion over and over on a toddler's coloring game that we bought for him to play. Earlier today he could easily paint, change colors, change pictures, etc. Now his brain is stuck in a meaningless loop.