An update:
H remains in critical condition and in the intensive care unit. The brain swelling hasn’t stopped. He is having cycles every 1-3 hours where his intracranial pressure – which they measure with the monitor that was surgically inserted into his skull – spikes up above 50. When this happens, his heart rate drops – sometimes as low as into the 30s, but generally into the 40s or low 50s. He is deeply sedated and on a respirator. They are trying a variety of medications and other interventions to try to stabilize the wild fluctuations in his intracranial pressure, plus his head is elevated pretty steeply to try to help protect his brain. They finally got a nasal feeding tube in yesterday afternoon, so he’s getting some nutrition now. This morning he is having seizure like activity where he is trembling. This is new. They have now upped the paralytic agent he’s been getting to see if they can stop the shaking. He looks worse to me this morning. His face is more swollen and his tongue is thrust forward in a way that it hasn’t been.
This is hard. My poor, sweet baby boy. It’s all so surreal. Even 36 days into this, I can’t quite believe it’s happening. You read and hear about this happening to other people, but truly, you just never imagine that it could happen to your child, your family
I want to say again how much H’s father, stepparents, younger siblings, and entire family appreciate every single message, email, blog comment, card and letter of support that nice folks have offered and continued to offer. I am so sorry that I am behind on responding directly to people, but please know how much it means to me to hear from folks. THANK YOU.
Oh, and one last thing – I simply cannot rave enough about the amazing care H is receiving at UT Medical Center. He has one-on-one nursing care here in the ICU and the level of attention and skill of his nurses are fantastic. I am also very pleased by the energy, attention and expertise that his neurologist and the neurosurgeons are putting into H’s care. Dr. R in particular (email me if you want to know his name so I can refer you if you are looking for a neurologist) is so thorough and attentive, and he’s really working hard to research H’s somewhat rare condition – the Delayed Post-Hypoxic Leukoencephelopathy. He’s also just plain nice; yesterday he saw how tiring it is for someone 8 months pregnant (that would be me) to be spending hours every day perched on a tiny plastic chair in H’s ICU unit, so he ordered up a comfortable recliner to be placed in here so that I can sit with my feet up when I am with H. That was just incredibly thoughtful of him.
53 Responses to “Day 36”
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OMG what a nightmare katie.
There are no words to express the deep sorrow I feel for your whole family. It’s altered all of you forever.
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I will be praying hard for you and Henry–for your whole family–at Mass this morning. Good for Dr. R–I’m glad that not only is he taking great care of H, he took time to take care of you, too.
Katie, I am so sorry that it’s taken this turn. I really am hoping and praying that he’s able to overcome this and come through this stronger.
Katie,
You and your family are in my thoughts and prayers. I know there is nothing anyone can say to make things easier right now so I won’t try. Just know lots of people are praying and hoping for a full recovery.
Gods speed,
Amanda
We’re all thinking about you and your family- no need to respond directly. Take care of yourself as best as you can. We are all here pulling for Henry.
Wow, what a blessing that dr is in the midst of this storm. I’m so sorry for what’s happening. Your story hits me hard – I lost a cousin to a drug overdose in 2006 and I also have a son named Henry (age 6). I will be praying for what’s to come. Keep those feet up and I pray your chin will stay up, too.
I can’t find the words to tell you how sorry I am that you have to go through all this. You’re in our thoughts and prayers. May God send a miracle and cure your sweet son.
Our prayers and thoughts continue to be with you and Henry and your family. My husband and I will continue praying for all of you until Henry is on a safer shore. He is a beautiful boy.
I know what you mean about it being surreal. When I was diagnosed with cancer over two years ago, it took me months to wrap my mind around it. Even prepped for surgery, I was thinking, “This can’t be ME going into surgery. I’m going to wake up from this bad dream any minute now.” I think it’s the mind’s way of trying to protect us.
Know that you’re in my thoughts, and I’m so glad that H has first-rate people caring for him. That makes a big difference. Take care.
I am so sorry you are going through this.
I am so sorry for all the pain and suffering your family is going through. You are in my thoughts and prayers.
I just recently began reading your blog through Twitter links and just want to say my heart goes out to you and your family through this trying time. I cannot imagine what you’re feeling. You are an amazingly strong woman and a wonderful mother. I pray for all of you. God bless.
I’m praying today that you will experience the perfect peace and that H will experience the healing that comes only from Almighty God through the Great Physician! May He who created H now heal him for His glory.
I’m so glad that the folks in the hospital are taking such good care of you. But so sorry you are having to go through all this. It must be very hard on a minute to minute, hour to hour basis. Try to be kind to Katie through all of this, okay?
Thank you once again for the update on H’s condition. As other people have said, I cannot even imagine how difficult it is to watch H suffer and to stay strong for your son. I know my heart aches for you all. H. and your entire family are in my thoughts and prayers today as you all have been for so many days lately. I hope that today will bring some improvement in H’s brain swelling and in the symptoms that you describe; I know that is what I will be praying for throughout the day.
Today is my three-year-old granddaughter’s birthday party, and I’m sitting here crying as I read your update. We have custody because of my daughter’s unrelenting drug addictions. She was recently in ICU for a drug overdose, but is now back in jail where she is safe.
When you are able, we can scream, cry, publish, share info, and whatever else it takes to raise awareness of this pestilence called drug addiction. My heart is with you and your son.
Joanna
Katie, I don’t know you or your family but feel I have almost come to know you through your wonderful writing. I have been checking this blog every day hoping to hear H is better. I am so sorry you are all going through such a nightmare and just want you to know many, many people you don’t even know are thinking and praying for your family. I have told my 18 year old son about H and, even though he didn’t want to listen, I think he heard.
Bless you all.
I am so sorry for your pain and what all of you are going through. I look forward to your updates and every time I read one, as well as many times throughout the day, I say a little prayer for Henry.
Please do not feel that you have to email me back.
Katie, my sister Cee linked me here to read your story. Please know that I am praying fervently for Henry to come back to you. Also know that your blog inspired me to discuss drug use with my two sons, ages 11 and 15, again last night.
Elizabeth
katie,
thank you again for keeping us updated. the prayers and love are continuing for henry and the whole family. stay strong!
You and H and your whole family have been in my thoughts since this happened. I keep looking at my babies (8, 5, and 2) and hugging them and hoping that no family ever has to experience this. Thank you for sharing this story. It’s got me thinking about how to handle this issue with my kids, now and in the future.
All moms who read your words are crying, everyone is.
Katie — there’s really no need for you to worry about responding individually to messages left here. Same goes, I imagine, for any notes you’re getting at home. Certainly not at this time. Anyone who is concerned about you and H is not concerned about you diverting your attention to write thank you notes. Please don’t let that add to your stress.
Hugs to you, H, J, C&M, J, E, C, baby G, grandparents, aunts, uncles, cousins. Just … hugs all around.
H, you, and your family are the first thing I think about in the morning, and the last thing in the evening. I am just so sorry. I am praying along with you as hard as I can. Thanks for keeping us updated.
My heart is breaking for you and your family. I can’t imagine what it might be like to go through this, especially eight months pregnant. My and my family’s thoughts and prayers are with you, H, and your whole family, even the one on the way.
dear katie, I have been following your blog and my heart has been aching for you and your entire family. I have been thinking of you all constantly and praying for the best. I have followed many of your useful links to other articles and am inspired, as I am sure many of your readers are, to study, act, and form strategies for talking to our kids. I hope it is some tiny comfort to you to know that your message is getting out to so many people, and touching deeply. I remember Jane well from Fiesta Farm, and Elliot from the little I saw him there, and Charlotte from seeing you around. I saw Henry at Fiesta once but remember well noticing this handsome and pensive boy. We are all pulling for you and holding you all in our hearts.
Emmy, Keith, Lauren, and Jack
My heart goes out to you.
Katie, you are in our thoughts and prayers every day. I am so sorry that H has taken this turn for the worse. Words do not suffice. Please know that I am there, virtually holding your hand.
Kelly
Hey Katie- I am so sorry you all are going through this. I check your blog daily for updates on H. I put in a prayer request for him at church this morning. We serve a God who put the sun and the moon in orbit. He made the lame walk and opened blinded eyes to see so I KNOW He can heal H. I pray for this several times a day. God bless you and your family. If you need anything at all email me and I am there.
My heart aches for you, your family, and your beautiful son. Sending you strength.
Sending as many positive vibes as possible. So glad to hear you are being taken care of by the hospital during such a difficult time. We are all thinking of you.
I am so sorry you all are facing this nightmare, I wish someone would shake you all awake from it! Praise to the skilled people and their graceful hands caring for your sweet boy.
Here via Dawn (This Woman’s Work) and I couldn’t not comment–I’m also due in Mid-July with my second child, and I look at my sweet two year old, and I just can’t imagine facing what you are going through. THANK YOU for going public with what your family is facing. Having read your eloquent postings, I can say that I as a parent am changed because of your bravery to share. THANK YOU. I am holding your family in the light and hoping for a miracle for you.
I have my own H-truly his name, a young fellow in his mid teens, flirting with disaster. This story is hard to read because I ache for you and all your family is going for. I ache a little for me, too, because I see a young man in our house who has so many of the risk factors that make him a candidate for addiction.He also has that teenage feeling of invincibility, and nothing we are saying or doing is getting through. Even knowing that, short of holding his hand every time he goes out of the house I know this can someday be our story.
I pray for all of you, every day.
I came across your blog and have been following it regularly. My thoughts and prayers are with you during this difficult time.
Katie, I’ve been reading your blog on Babble and occasionally here for a while now and I just want to say my heart and thoughts are with you and your family.
Steph
Someone sent me the link to your blog and I just have to express my deepest sympathies for everything you and your family are going through.
I will say a prayer for your son (and you) today – I know it’s not much in the grand scheme of things and I wish I could do more for your family. My sister was critically ill four and a half years ago and I know how hard it is to have someone in the hospital that you love.
I found your blog through a FB friend. I am so sad for Henry, you and all who love him. Please do not let anyone tell you that he deserves this because of his actions. That is not important now, what is important is that he is your child, brother, loved one and he is suffering and you are all suffering with him.
I am praying for all of you.
Namaste
I’ve been following your blog since Lisa Belkin wrote about H’s assault in the Times. Thank you for sharing your story. I’m sure it’s been the impetus for many conversations about experimenting with drugs. I don’t know you or your family, but I’m deeply affected by your love for your boy. And I hope with all my heart that he comes back to you soon.
Thinking of you with love and hope in our hearts.
Once again so sorry to hear the news is still bad or worse. Will continue to keep H. and all of you in prayers/thoughts.
And no, Katie – thank YOU for updating when you can, even though I know you have better things to worry about than updating your blog or Twitter.
As for responding individually, I agree with some who said what they did – I do not expect an individual response nor do I want you to bother with that. You have many more other important things to deal with right now and will for likely a long time to come. For me, I am relatively sure that at some point when I’ve moved to East TN I will probably run into you and/or Jon somewhere sometime in person and whatever we talk about at the time will be response enough. Hopefully at that future point we’ll have much brighter things to talk about by then, I hope.
I suspect most of the readers you won’t likely personally run into feel the same in any case about individual responses. If it were me, your frequent updates keeping us *all* informed is certainly response enough and I expect most would agree.
Hang in there and keep taking care of yourself while you’re taking care of your eldest. As concerned as I am about H., also very concerned about you and the little one in your belly, so do take time as you can to take care of you….
All I can say is how sorry I am for what you’re all going through – H, you, your entire family. I’m in awe at how lucid you still are, writing these posts. Take care! You are BRAVE and a GOOD mom!
Marta from Lisbon, Portugal
what can one say to this latest post? i don’t feel i can offer anything that hasn’t already been said. i am grateful for you that you have such a good team of doctors and nurses. these people not only take care of your loved ones, they become part of your life. it’s good to know how much they care.
Oh Katie: I can’t even imagine what you are going through. Another blog friend of mine asked me to pray for H. You are in my prayers. I wish there was more that I could say. My heart aches for your family and your precious boy!
thinking of you. thanks for the updates, as i check back daily to see how h is doing. sending thoughts and prayers for you and all of h’s family.
Praying for his recovery! May God bless you and hold you close as you go through this. I pray fo rhis complete recovery.
Thinking of you, all of you.
Dont worry about responding – you have far more important things to do – just wanted to add my thoughts, prayers, and HUGS to everyone else’s….
i am praying for you…
Dear Katie,
I am praying so hard for you and Henry, God is in the business of miracles, and although it looks so devastating now, He is in control Please take care of yourself, and let God take care of sweet, beautiful Henry. Thank you for the blog, I posted it on my facebook profile in hopes that everyone will read this and realize how serious it is. I feel the same way as what you said, this happens to OTHER people, right??? Hang in there, and know you are being prayed for by people that do not know you. I still think there should be some way for the national media to get this story, it is so unfair that the people responsible have not been brought to justice. If the assoc. press, CNN, even Nancy Grace could get a hold of it, I bet you would see a huge national outcry for Henry. Prayers, hugs, and good thoughts coming your way♥ Terri D., Cecilia’s cousin in Georgia