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.
-Katie
79 Responses to “Long night”
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My heart goes out to you, Katie. I’am still praying for H’s recovery.
I’m sending you all the positive energy I can find. You are never far from my thoughts.
In consideration of your more sensitive readers I will just say ****, ****, ****, ****.
So very sorry.
K
I am praying for H and for you and the rest of your family. Because of you I have hugged my kids extra long and hard today.
Henry knows how loved he is. Just so terribly sorry & saddened.
In my world view, he can hear you say that. Don’t hesitate to tell him how much he is loved by all of us. What a strong and brave boy he is to hang in there like this. Much love…
Thank you for the update. I’m so sorry, Katie. Just so sorry. You all remain in our thoughts every minute. We talk to the big boys about what’s going on, and we are all deeply saddened. We love you.
I am so sorry Katie. We are sending love your way.
I am so sorry, Katie, for all of you and for what y’all are going through. Still praying
My heart is breaking for you continually Katie. I think of you constantly. And I think of Henry, especially every time I look at and hug my boys. As everyone does, I wish I could do more than positive thoughts, wishes & prayers.
Dear Katie,
I worked with you on your wonderful book, years ago when I was an assistant editor at Pocket Books. I have thought about you and looked at that book many times over the past few years, as I have had my own babies and now live by so many of the principles I first learned from you back then.
I learned about what has been happening to Henry and your family via Hope Edelman on Facebook, and have been checking in since. I am so deeply sorry for the unimaginable pain you all are going through. I am hoping and praying for all the healing and peace in the world for Henry and your beautiful family.
My father has worked for many years with Joseph A. Califano, Jr. on CASA, the National Center on Addiction and Substance Abuse at Columbia University. Although my 2 children are only 4 yrs. and 7 m. old, they have already urged me to read Califano’s book How to Raise a Drug-Free Kid. It is based on many years of research and experience, and I recommend it to your readers.
I might have taken a more relaxed approach with my children re. marijuana and alcohol if it weren’t for CASA and now Henry’s experience. For the second time, your writing will have a powerful impact on the way I parent my children. I am very grateful for your words, and I am lighting a candle in prayer for Henry in New York.
All my best wishes,
Kim Kanner Meisner
Lauren R. took the words right out of my mouth this morning. I too, wish there was more I could do than send prayers and positive thoughts. But they are coming to you all day, everyday. I don’t know you and your family face to face, but as a mom I feel your pain today and everyday since this started. Love from PA.
Henry knows how much you love him, Katie. Please don’t ever doubt that. I’m so sorry this is happening to you and to him. We continue to pray for you all.
Sending you all much love.
love.
Oh, Katie, my heart breaks for you and your family. We are keeping up with H on a daily basis, and I know he knows you and your family love him. I continue to pray; and as many others, we have asked people all over the world to think of and pray for H. Love, Vicki. I know M is thinking of him constantly and is always there in spirit with him.
love and lots of it. prayers for H and your whole family constantly.
Katie,
I’ve been reading your updates and posts over the last several weeks. I am so sorry that you all are going through this. I will keep saying my prayers for Henry… and your entire family.
Warm wishes,
Lisa
We are praying so hard for Henry and your family Katie – my heart is hurting for you!!!!
I’m a stranger to you, but I’ve been following since learning about you in NYTimes. I just wanted to add my name to the long list of people thinking of you during this incredibly tough time. So very sorry to hear that H is terribly sick once again.
Katie, please know that for each of us who posts, there are hundreds of more people (if not thousands) who are following along, praying, hoping and you bet, crying for your beautiful boy and your family. You’re in our prayers nightly and in little ones throughout the day. Take care.
Oh katie. This a really something you have to ride minute by minute, as it changes so quickly. I am sending love to your family and to Henry. But I am sending special TLC to you and the baby you are carrying. Thank you for sharing all that you have. Let your readers know if ever you need something more than good wishes and love and prayers and we will do what we can.
Wishing you strength, stamina, and courage for the road ahead.
Katie, you are in my prayers and a candle has been lit. Thinking of you and your family right now.
Hi, Katie;
I am so sorry for what you are having to go through right now with your precious son. I know the pain and horror of having to struggle with someone in your life who is addicted to any substance. I know the feelings you have while sitting outside your baby’s room waiting to be able to see him. I know the extreme fatigue you feel at times when you think you can’t make it to even walk to the bathroom. But I have never had to go through this type of terror and be pregnant simultaneously. You are so strong and I admire you so much. I am sure your son has your strength and courage instilled within him. I have so many wishes for you but most of all, I wish for you to have your family back and for everyone to be well and happy. You have many friends, my niece Chyna included, and I hope you will consider me one of your new friends.
Much Love and Hope,
Vicki
I’m thinking of you.
so much love sent to you, your family and your son. I am a nurse and I hold out a lot of hope… he is young and he has amazing medical support and you by his side…
love,
Misty
The first thing I do in the mornings is check on H, and then throughout the day as well, I am so sorry to his taking this bad turn, keep telling him you love him, I believe he can hear you, and I think I’m not the only one…
I forward H’s updates to my daughter, who in turn is keeping the prayercircle up to date…
Thinking of you and your beautiful family,
Karin
Hi Katie. I just found out about your family and what you are going through last night. My husband and I are from Knoxville and he is a friend of Melissa’s. I found myself reading through your blog yesterday. My heart was torn up as I read Henry’s story. I am on Pacific Time (in Oregon) and I was praying for Henry and your family well into the night (I went to be after 12 and that’s after 3 a.m. your time). I checked your blog first thing this morning. I am praying for you. That’s all I know to say. I just want you to know that I am praying.
Continuing to send prayers to your family.
If a comment from a stranger gives you a little bit more strength, far be it from me not to comment. You continue to be in my prayers.
sending so much love to you all.
I am so sorry. You and your family are so often in my thoughts it feels strange since I am just a reader. I really hope for the best for you through all of this. I am raising four chidren an could not be more open about learning how to keep them safe.
Sending lots of love and positive thoughts your way. And I will continue to pray for you, H, and your family. Thank you for taking the time to update us.
oh sweet katie, that dear boy knows how much you love him. you are such an amazing mother to your children. i haven’t stop praying for henry. sending love and big hugs your way.
sheila
also, thank you so much for keeping all of your friends and readers H updates, it really means a lot!
Katie, My daughter went to the same school as your children and I have met you a few times. I have spent the last 3-4 hours reading every word you have written on all of your blogs about Henry. The one you wrote about Henry telling you he smoked pot terrified me. My ten year old daughter carries that same heavy, festering guilt about the little things, the minor transgressions. She tattles on herself constantly in order to relieve herself of that excrutiating guilt she carries in her heart and mind. Don’t you waste a minute worrying if good will come from all of Henry’s horrifying experiences. You just saved a ten year old, hopefully. My daughter is predisposed to addiction as she comes from a very long line of alcoholics and drug addicts, myself included. I have 2.5 years clean and sober. I have always joked that I am saving a seat for her within the walls of A.A. because of many of her mannerisms. I will no longer joke about this because of your blog. I will use the instant gratification of my Kindle to purchase each book suggested on all of your blogs. Thank you for for being so open and forthright. Your words and Henry’s experiences have changed one mother’s perspective on the future of her daughter’s possible drug use. Thank you from the bottom of my heart. It is a moment by moment disease; nothing will change this irregardless of what circumstances we are in. Breathe and relax.
Katie, my thoughts and prayers continue to be with you and your family. I am so sorry that you are all faced with this. No matter how hard we try as parents (and I believe you were a very good Mom), our children can & often do make terrible decisions. It is so sad when the results are so disastrous. H is in God’s hands now.
Milly Hopkins (Abby’s Mom)
CRAP! I am so very sorry for using H’s full name. I have been so moved by this blog and the Facebook page that I did not censor myself. Please accept my apologies. MM
Katie, as you are faced with these unimaginable horrors coming so fast and thick, every single day, your words remain beautiful and strong. Your articulate descriptions of this hell bring everyone who reads into seeing what you see, feeling what you feel. I don’t really pray, but I think of you and Henry and baby G and your little Charlotte, the same age as my Casey, every day. And you are loved by friends and strangers alike. If we could take some pain from you, I know we would.
He hears you Katie. Keep telling him you love him.
Like so many, I’ve been following your posts so closely, hoping. I re-read the essay you wrote about H in 2005. I remember reading it when you first posted it. (It was startling to realize how long I’ve been reading your blog.)
This has all been so heartbreaking. So many out here are holding up you and your family, H’s dad and his family, and — more than anyone else — H in our hearts and prayers. Wishing we could do more.
H. does hear you in ways similar to when you first began communicating, cell to cell,sharing one body. Keep telling him in all of the ways you’ve always had. Prayers are here.
Healing thoughts and prayers for a miracle.
This isn’t going without a lesson.
I will never tolerate drug use. I will do anything in my power, including picking up my child and moving to another country with no drugs. Singapore?
This isn’t all in vain, Katie. Whatever happens please know that Henry will have saved other children because of your courage to share your precious boy’s travails.
Katie,
Tears and prayers streaming here in CT for you and your beautiful boy.
I have shared your story with my my 16 year old daughter (who thinks H is sooo handsome) and my FB friends. Now there are even more people praying and waiting with you.
Love, peace, and strength to you Katie. We are here with you.
Katie, I’m a friend of your husbands from college. I started following your updates about H when I started seeing J’s status updates on facebook. Just wanted to write and tell you that we are praying hard hard hard for you and H. I’m so sorry this has happened to you. You are very brave to speak out about H’s drug addiction and I believe it will make a very big difference to a lot of parents and young people. You are a very good mother! Not only are you mothering your own children, now you are mothering other people’s children by speaking out about this terrible disease. Thank you.
Neely
I’m just another stranger, led here today via Instapundit, but I wanted to say that there are more prayers going out to you, your family, and especially H. May God grant you all strength.
Dear Katie,
I’m just another mom who does not know you, but has been reading your blogs via Twitter. Thirteen years ago I experienced the illness and hospitalization of my son. The circumstances are radically different than yours, but I can so feel your pain. I too spent hours, days, weeks, in those draining, grueling ICU waiting rooms. Drinking bad coffee. Sleeping in chairs. Looking up with anxiety every time the door opened and someone with a white coat walked in. Just holding my breath for news that wasn’t awful. Your life is in a suspended state of being. I know your exhaustion and anxiety. Today is my son’s birthday. He is no longer with us (again, his illness was completely different). But, on the anniversary of my son’s birth, I wish you peace and comfort. So many are thinking of you.
Stay strong…
Hi Katie,
I’m another reader keeping H and his blended families in my thoughts and prayers today.
A candle will be burning for H in Seattle tonight, just as they are all over the country.
Thanks for sharing your family’s story.
I am new to your story but I am praying so hard for you and your family right now.
Steph