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.
42 Responses to “Not the news we hoped to hear”
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My heart hurts for you all. That is all I can think to write. I’m just so very sorry.
This is definitely NOT God’s plan for him.
I’ve been following your blog for some time now and I have been checking in daily to learn how your son is doing since he entered the hospital. Your family is so brave and you obviously love each other really hard. Just wanted to let you know that you and your family are in my thoughts.
I can’t imagine how hard it is for him to have been improving and then for this terrible turn to happy. Lots of love.
‘happen’ not ‘happy’
Just praying and thinking good thoughts for you and H. Much love and many blessings to you, my friend. I’ll see you (or your fam since you will probably be at the hospital)on Friday with dinner.
My heart is breaking for you. I don’t know what else to say other than that and your whole family is in my thoughts.
Katie,
My heart sank for you and for H when I read this latest news. I do not for a minute think that this is God’s plan for H. Unfortunately, all too often we humans get in the way and derail God’s hope and dreams for us and for all creation. I imagine that God weeps with you and is heartbroken over what is happening to your (as in you and God’s) beloved son. And I pray that God and God’s earthly assistants — the doctors, the nurses, you and your family and friends — will find a way to get H back to wholeness and health. Much love and prayers are being sent your way.
Truly saddened to hear this news, Katie. Still praying, for all of you.
I am so, so sorry. Words just cannot say. I feel terrible for you and your whole family. Just know that you’re in a lot of people’s thoughts and prayers, mine included.
When I read the headline of this entry, I felt my stomach drop. All I can do is to hope and pray, so I will continue to do that. I wish there was more.
{{{hugsss}}}
This is so painful to read about — I cannot imagine being in your shoes. Along with so many other hundreds of people I am holding Henry and your family in the light.
I know I speak for a lot of your readers when I say that I really hope they find the people responsible for the assault and put them away for a long, long time. I know you are focused on Henry’s diagnosis and care right now, but I hope you will be able to update us some time soon on the police investigation, if talking about it will not be too upsetting for you and not compromise the investigation.
So many things about what has happened to Henry are frightening to parents like me… drug use and experimentation and addiction and how to deal with all of these dangers. But it is also scary to me that this assault was never front page news in Knoxville. Because I would think that attempted murder — and that is what we are talking about here — would be so uncommon that there would be an APB out for the perpetrators. It is very scary to think that these people are in our community now and the public is unaware and not looking for them. They facilitated Henry’s drug use and then tried to kill him. It could have been any of our children. I really want to see these criminals brought to justice.
Katie, I’m truly sorry to hear this news. I’m praying for H, and you and the rest of the family. I pray something comes of the “Lorenzo’s Oil” research.
Saying how sorry I am feels trite and worthless, but I am so terribly sorry. I’m continuing all the good thoughts and hopes for H and all of you.
I’m sorry that the latest news is so devastating. And I agree with everything Tricia said. Tragedies like this one have nothing to do with God and everything to do with the misuse of free will by the people who tried to kill him. I’m continuing to pray for the best possible outcome and for strength for all your family.
I read your story at Motherlode. I checked back today, expecting good news. I’m so sorry. I can’t imagine seeing one of my kids in the hosptial, scared and hurt. I’m just sorry.
Praying for your family.
I’m so sorry about this latest update. I think about him and your entire family every day.
Katie – So much love being sent your way. Can’t tell you how much I want to just wrap you all up in my arms. xoxoxo
I’m not family or friend. Or anyone you’ve ever met. But since Henry’s accident I think about you all every.single.day. I’m not a religious person, or even a very spiritual person. But every morning when I wake up I find myself laying in bed, thinking about you all and wishing for positive things for your family.
I think what you’re doing is incredibly brave and true and generous. Keep speaking your truth.
:*-( I am praying so hard for you and your son! {{hugs}}
Katie, Keep praying and begging. There is nothing like a mother’s prayers. We can cause God to change his mind, even if this is his plan. Remember, As much as we love our children, God loves them more. It is hard for us to fathom his love for his children.
I think about you every day and still hope that things will improve. While we are alive, there is hope. My very best wishes.
I am feeling so sad but remaining ever hopeful for your family, Katie. H was the first of my friends’ babies that I ever held. Now I hold him in my thoughts along with the rest of your family.
He’s the most loved young man.
I hope you are able to hold on to the positives in your life right now, but I know it’s so hard. You and your family and Henry are so loved, but knowing even that does not provide total consolation. I’m holding on to the thought that there are amazing scientists and doctors out there and had this happened 50 years ago, your son might not even be alive right now. I hope that Lorenzo’s Oil and the cord blood are able to be used in your son’s particular case and that it results in Good.Things.For.Henry.
God does not cause bad things to happen. If this were the case, bad things would never happen to good people, and clearly they do, every minute of every day. God is the light and strength that holds us even through the worst of times; your greatest friend. God is with you right now even if it may be hard to feel it. I am holding you and H and your whole family in my heart.
h and your whole family will be in my prayers. i wish i knew what God’s plan is, but if i knew that, i might be God.
i hope you can get some rest for yourself. all this on your heart, body and mind is a lot for one person. please look after yourself.
God, please give H’s doctors the knowledge to heal H and surround H and his family with love and light. I will continue to pray for H and your family.
I’ve never commented before, but I just want to say how sorry I am for all you are going through and I wish you the best. You are in my thoughts.
I’m so sorry for H, you, and your family. May God bless.
Katie
Everyday I pray for your family to have good news and the miracle H needs to be delivered. My father, friends and coworkers are also praying. My sweet dad made a point to tell me the strawberries he bought from a roadside stand were from a farm for teenage drug rehab patients. I know he thought of H when he bought them. Small things but maybe they help someone else’s child in recovery. I hope you have some comfort in knowing that other families have been talking and changing the tone of the conversations around pot and other drugs.
You are brave to share all the pain & worry and I can only imagine that for every old friend posting here, many more are reading and unable to express the concern they have for your family and for the strangers who post here there must be a hundred more reading and making life changes.
praying and lighting another candle tonight. Mare
I thought of this scripture after reading your post. I hope it brings you comfort. “‘For I know the plans I have for you,’ says the Lord. ‘They are plans for good and not for disaster, to give you a future and a hope.’” Jeremiah 29:11
*crying*
Katie
I don’t know much, but I know that God is good. God does not intend for Henry to suffer. I bargained with God once- I promised him that if I could get a job in Knoxville (so I could be close to my mom who had cancer), I promised I’d be good. I wasn’t good, I continued my usual wild ways, even though I got the job. I fell asleep at the wheel of my car, broke my neck, was paralyzed for weeks, in Patricia Neal for months- out of that job after all, for 9 months… But there was a lot of grace that followed me through that experience. I thought for sure God had punished me for not keeping my promise. these twenty seven years later, after many more painful tragedies and hopeful promises, I believe there is evil in the world, and God has nothing to do with it. his will is for us to live forever with no tears, no pain, no foreclosures, no hospitals, no hateful ugly mobs in the night that would devour our children. his will is only for you to believe. and love.
I think God sucks!
My heart aches more each day for you.
I’m so so sorry about what you are all going through. There is no way that God had this plan for your son. Many people believe that God is with you in your suffering, but does not ever desire this suffering for you. I pray that you and your son feel God’s presence and love around you, and that this will give you strength. I pray that you feel the love and support of the many people you know and don’t know. I pray for your son’s recovery – not because God is withholding it, but because expressing this desire is its own form of love and because I hope that miraculously this love will so overwhelm your son and family that the unexpected will occur. And that this love will be with you no matter what happens and be a source of strength throughout this life and even beyond.
Katie and all, I continually am saddened for you and your family, but am praying constantly for H’s recovery. I do believe God heals in odd ways. Our hearts are broken , but I usally try not to keep it that way. If at any time, you think we should be there, we will. Love, Vicki and Family
I am glad to hear that H is moved to a better facility capable of handling his issues. My husband is a physiatrist and he was growing concerned at what H needed. Hooray for Dr. R.! As for the Bad Plan I can only wish you guys the best. The path will be long and hard and I hope that as you continue to advocate for H that the combination of love, determination, his inner abilities and just plain old luck will work it out. I think of you often – especially hearing about the patients my husband deals with.
Horrible – to be led to hope and then to have this happen. I am so sorry. I know what you mean by that “Well, this is a very bad plan” feeling. Watching a child suffer like that, we can’t help but feel that way. What did a child ever do to deserve that?
Katie, my prayers and love surround you at this very difficult time.
I remember H when he was very small and when you were a new mother. We will be checking to follow his progress. Remember that nothing separates us or our loved ones from God’s love.
My dear Katie, I have not met you but found your web story from a friend who posted it on FB. Your writing is so beautiful and heart rending. Your children are beautiful and you have done an incredible job of documenting their lives on film. Now you know why you did that, in the most painful way possible. From what I see in the blogs, your dear, beautiful son has lost his battle to stay with you all and moved on. All I can write besides I’m so very sorry, is that because of my beliefs, I KNOW he is where he is meant to be and he is fully healthy and safe. I share your thoughts about God making a BIG mistake in the case of Henry. I lost my beloved sister, 13 months younger than I, when she was 45. I can remember so vividly how angry I was at God. I screamed at him “Why wasn’t I allow to vote” and other vindictive things. I knew she was OK, but God how I missed her and still do nearly 20 years later. You will always carry Henry in a very special place in your heart, as will all those who knew him. He is such a beautiful child, one I would call a free soul – I can see it in his dark eyes. Unfortunately the person who has that trait often fly into things we hate and know are bad decisions for him. I have NO sense that you even didn’t do what was best for Henry. The fact is that God gave him choices and let him find his way brings him to this. Henry is not bad or stupid or crazy. He’s IS a graceful young man who followed paths that we would have wished he wouldn’t. Please try to find some peace in all this turmoil. I will keep all of your family in my prayers. I have a strong feeling that your new babe’s soul and Henry’s will meet and touch each other on their way to and from earth. God Bless you all!