Long night

H made it through the night. He remains in critical condition and on a respirator.

Edisto 2008 097

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. ┬áMuch 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.

-Katie

Cruel and unfair

I got the results of H’s neuropsych eval back yesterday. The report notes that when H was tested during his inpatient addiction treatment in 2009 – when he was 17 – he tested at the 99th percentile for verbal ability and comprehension for kids his age.

Now my child can’t speak in full sentences, or read.

Stupid drugs. Stupid drug dealers.

Talk to your kids about drugs and alcohol. Talk some more. Do it today. Dig deeper. Look more closely. Trust your gut no matter what your teenager is telling you. Err on the side of doing too much rather than not doing enough. Please. I don’t want H’s injuries to be for nothing. I want other people to learn from our family’s experience.

Yes, I am still pregnant

So yeah, I am 31 weeks pregnant. I look even more pregnant; I’m huge. I waddle. It’s hard to turn over in bed at night and the baby now keeps me awake with her joyful kicking and wiggling. She is definitely letting me know that she’s growing fast and will be ready to meet the world in mid July.

Because I am so consumed emotionally and logistically with H’s injuries and well-being, I go for long stretches of each day forgetting that I am pregnant at all until someone – a nurse or someone in the elevator at the hospital – asks how far along I am. People also sometimes ask if I am having a hard time managing pregnancy along with hospital caregiving for H, and honestly the only answer to that is that I don’t have a choice. Yes, sometimes I get tired and yes, it’s hard to get comfortable overnight on a cot in his hospital room at almost 8 months pregnant. But what choice do I have? My oldest baby is sick. He’s hurting. And he needs me. Not being there with him as much as I possibly can simply isn’t an option.

And you know that thing about God never giving you more than you can handle? Well, I think that theory is in play here because after a first half of the pregnancy where I was so nauseated and tired that I could barely function, I now feel about as well physically as someone carrying 45 extra pounds and a giant belly CAN feel. I have my little aches and pains here and there, but no nausea and no extreme exhaustion any more. I do occasionally get some strong Braxton Hicks contractions when I am on my feet too long or have a particularly long day of work + hospital, but when that happens, I just drink extra water and lie on my side for a while and they eventually go away. I don’t think I could hold it all together if I were having a difficult third trimester in addition to having a hospitalized child. So I am grateful that the pregnancy seems to be going so smoothly now.

Also, all of the extreme, somewhat irrational anxieties and worries I had earlier in pregnancy are gone. Just like that. And I’ve realized now that I was never actually worried about the baby at all. In fact, I was worried about H. I was worried every single moment of every single day that I would get the call that I eventually got – the call telling me that my unconscious child was being transported to the hospital. I knew his use was escalating and he continued to refuse the help we continually offered. I knew somewhere deep inside that something terrible was about to happen. But because I was still trying to keep H’s addiction somewhat of a secret, those fears and worries were expressed emotionally and then verbally as anxiety about the pregnancy. Now that the secret is no longer a secret, I feel a huge burden lifted from me and I am no longer worried in the least about the pregnancy or the baby. I know she will be just fine – healthy and beautiful when she is born.

At some point I simply MUST get some things ready for the baby. A few sleepers or something. Or maybe some diapers and nightgowns and a couple of receiving blankets. If you came into my house today (which I wouldn’t advise; it’s so messy that you might get lost), you would have no inkling that someone in the third timester of pregnancy lives there. There is nothing to indicate that a baby is soon joining the family…because I just haven’t had time to think about it. Luckily, newborns really don’t need that much. I’ll find and wash some onesies and blankets at some point and we’ll be good to go.

HospitalTV

One thing about spending a month straight sitting in a hospital room is that you watch a lot of TV. I don’t generally watch much TV at all, so I am catching up on all the shows I never see…or never HAVE seen.

After all of this TV watching, I’ve come to one conclusion, and it’s this: Nancy Grace is actually a long running and rather brilliant piece of performance art. I’m sure of it.

Not the news we hoped to hear

When H was admitted to the ER, unconscious and bleeding from his ears, the first doctor we met with that day told us a lot of things about what we might expect in the weeks ahead. At the end of the conversation, he told us about a relatively rare complication of anoxic brain injuries in which after the person begins to improve, he or she suddenly takes a turn for the worse as the myelin sheaths in the brain start deteriorating. But he assured us that this was a very unlikely scenario, and I tried not to think about it after that, although it stayed in the back of my mind as a small, quiet worry.

Yesterday, H’s new neurologist (whom I love) explained to us that he is virtually certain that H is experiencing this rare type of post-injury demyelination, and that’s why he’s been declining so markedly in the past week after making small improvements over the previous three weeks. The new MRI, CT Scan and clinical observations all support this diagnosis of leukoencephalopathy.

As recently as 14 days ago, H could sit up with assistance and was working on walking in physical therapy. Today he is bedridden and unable to move his legs easily. Three weeks ago, he could say simple 2-4 word sentences with effort. He sometimes spoke without prompting. Now he only replies when spoken to and his responses are limited pretty exclusively to “yes” or “no.” He can’t even get those words out all of the time. He remains in his hospital bed, curled to one side, trembling and looking frightened. He sleeps a lot more than he did before. He breaks into fevers and sweats for no apparent reason. He is losing weight and his eyes are dilated again, after returning to near normal at one point.

They have started him on steroids and he is taking depakote to control further seizures (it seems to be working). If he continues to decline, he will likely undergo plasmapheresis soon. Dr. R. wants me to go ahead and bank NewBaby’s cord blood when she is born in July, in case that’s an experimental treatment we want to try for H.

But honestly, all we can do at this point is hope each day that the myelin deterioration stabilizes. For those people who do stabilize, there is sometimes some improvement after that. But in a worst case scenario, he will get worse and slip into a coma. I don’t allow myself to think about that possibility.

We are starting him on a dietary enzyme supplement that Dr. R recommended and I am going to research the “Lorenzo’s Oil” treatment for demyelinating diseases. And I am praying a lot more than I used to – bargaining with God and basically begging. Because if this is the plan God has for my kid, it’s a Very Bad Plan. I am opposed. Anti. There has to be a better plan.