H made it through the night. He remains in critical condition and on a respirator.
This all started yesterday afternoon.
He had been deteriorating over the past week and more rapidly in the past 48 hours. He was having frequent “autonomic storms” that were difficult to watch because we could tell he was in such terrible distress. He continued to vomit much of what we tried to feed him. He was sleeping far more than he had previously and speech was becoming more limited. For the first time, he started using nonsense words or in one case, a very distinct made-up word that he used as a toddler and hadn’t used since.
The doctors tinkered with his medications, but decided yesterday to do another CT Scan to see if there was a change in the swelling in his brain. They were pretty shocked to see that the swelling had increased to a huge degree since his last CT Scan last week. His brain is under a lot of pressure and the decision was made to move him immediately from the neurology floor to the intensive care unit. By this time, he was only semi-conscious.
We met with several doctors who explained that his heart rate was dropping and his blood pressure was up. We were told that we will now need to take things hour to hour instead of day by day. The neurologist told us he’s never seen someone deteriorate this fast this long after the original brain injury. It’s the worst case of delayed post-hypoxic leukoencephalopathy (DPHL) he has ever seen.
DPHL is a complication of hypoxic brain injury, sometime but not always related to drug overdoses. It’s also seen in carbon monoxide-induced hypoxic brain injuries. Much is not known about DPHL, but it’s believed to be related to both toxicity of whatever chemical caused the shallow breathing and aspiration that led to the hypoxia, as well as the length of time that the victim’s brain is deprived of oxygen. It can occur weeks or more after the original hypoxic episode, when the myelin sheaths in the brain start breaking down and deteriorating. But it starts with the insult to the system, causing the hypoxia and the delay in getting oxygen to the brain. In some people, it happens after they have almost recovered from the overdose and have resumed normal activities. With H, it started at a point when his brain injury baseline was still severe.But he WAS making tiny improvements overall until the DPHL started.
Whatever drugs were involved in Henry’s overdose, they are obviously still wreaking havoc on his brain 36 days later. And of course, H was also hit in the head and chest very violently, which can’t have helped.
After he was moved to the ICU, he was intubated and placed on the respirator to provide hyperventilation. An intracranial bolt was placed in his skull to monitor brain swellling on a continuous basis. A central IV line was placed in his chest.
Since they began monitoring his intracranial pressure last night (ICP), it has cycled every hour or two from near normal levels up to levels considered fatal – or beyond fatal. This sort of consistent fluctation and cycling of ICP is apparently somewhat unusual. I suspect that it shoots up every time he experiences one of the autonomic storms.
Jon and all three of the other kids were supposed to leave for our long-planned beach vacation this morning. We had decided that he and the kids should go even though I would be staying here to remain on the job and be with H. But everything is on hold now that H’s condition is so critical. We brought J and E to the hospital last night to spend a few minutes with H in the ICU. It was really difficult for both of them. They have been through so, so much with all of this and they love and miss their big brother so much. C is staying with Jon’s parents for the time being. I miss her like crazy. Other relatives may go ahead and take J and E to the beach today as planned with the understanding that they may need to be brought back to Knoxville quickly.
Right now I am sitting in the family critical care waiting room waiting for shift change to end so I can go back to the ICU and be with H. Thank you for all your kind words and messages. It means SO MUCH to our whole family that so many people are thinking of our swweet boy and praying for his recovery. The next few days will be critical for H. Every hour matters.
Give your children an extra hug today. Tell them how much you love them and how special and perfectly amazing they are. Never miss a chance to tell them that. I’d give anything if H could hear me telling him that now.