Since making the tough decision to open up and write about our family almost losing H to the drug overdose and beating, I’ve been overwhelmed by the kindness and support of friends and strangers alike. I plan to write more about that support later, as I have time. But today, I gotta admit that the highly critical comments (of me) following yesterday’s San Francisco Chronicle’s blog post about of my decision to discuss this issue publicly are kind of hard to see/read.

Ouch.

The three primary criticisms seem to be:

A – That I had no right to share publicly that my son’s current critical injuries are the direct result of drug addiction (Was I supposed to make something up? Maybe something like, “My kid is on life support because he encountered an IED in Downtown Knoxville” or perhaps “My son has a major brain injury after being attacked by a bear while hiking the Appalachian Trail.” ?????)

B – That early experimentation with mind-altering substances (H started at 13-14) have no impact on whether or not someone eventually ends up with a true addiction.

C – That drug addiction is not a disease and that treating it as one only makes the problem worse.

Again, I plan to address all of these specific criticisms in some depth in an upcoming blog post, but for now, I’d like to hear your thoughts on these criticisms, here at this blog. Heck, if folks are gonna talk about this, I’d rather it be here…

Let me wrap up by saying again how much every single kind word and supportive message I’ve received since “coming out” has meant to me. And just to be clear, I have let H know that I’ve begun discussing this issue publicly and that I intend to continue doing so in an attempt to lessen the shame and stigma for other families (after all, people whose children have brain tumors talk about it publicly without shame), and to help raise awareness. I told him that keeping the secret about his illness has not helped him, our family or anyone else. In fact, he’s gotten progressively worse. And we’ve kept it a secret for several years now, only talking openly for the first time after it landed him in the intensive care unit with what has now been diagnosed with a hypoxic brain injury that will require intense inpatient physical and neurological rehabilitation after he’s released from the hospital.

But anyway, let’s talk about it – in the comments below.

Namaste – Katie

I am sitting here next to H’s bed in his hospital room, listening to his still somewhat labored breathing as he sleeps. I wish I knew what he was dreaming about; every so often he whimpers a bit and changes position before drifting back off.

Also in his room is the full time “room sitter” that his doctors have insisted remain with him at all times until he leaves the hospital. She (or her overnight shift replacement) sits quietly in the corner of the room, reading. She is here to be sure that H doesn’t do anything like yank out his IV when no family member is present (he’s yanked out several other tubes while flailing around) and also to be sure that no one comes to visit whom we don’t want seeing H. Apparently it’s very common for “friends” of addicts – particularly younger addicts – to come for a hospital visit with the intent of “helping out” by slipping the hospitalized person a little taste of the substances that landed the addict in the hospital in the first place. Obviously, that prospect terrifies me, so while it’s kind of weird to have a stranger sitting here in the room with us at all times, we are all happy with her presence. Also, while it’s a less likely scenario, we know that there are suspects out there right now who came very close to killing our son. They don’t need to be making any unannounced visits to the hospital either.

Physically, H continues to heal in a very promising way. His lungs are clearing more each day. His docs hope and predict that his heart damage will resolve itself with time – young hearts are a lot more resilient than middle-aged ones. He still has the cervical/neck brace, but they were finally able to get the neck scan they needed last night, so we are hoping that when it gets looked at today, the doctors will decide that the neck damage can continue to improve without the brace. I know H would love to get it off today. They did a hearing test yesterday, but it was inconclusive.

He has not yet walked on his own – not even a few steps. He can sit up with assistance, but not for very long. He can lift and move his legs and arms to some degree, but it’s slow and it takes effort. Cognitively, his ability to retrieve facts is quite good. However, his ability to process information, respond to commands and requests, and to maintain focus are all clearly areas that are going to take time and effort to bring back to where they should be for an intellectually and musically gifted 18 year old boy. His pupils remain quite dilated, but he can slowly track with his eyes. He never really talks much without being asked to respond to something, but very occasionally he surprises us by saying something quite hilarious out of the blue.

We have all begun pushing him a bit to tell us what he remembers about what happened. He either doesn’t respond at all or insists (and gets very upset) that he remembers absolutely nothing. We have also begun trying to talk with him about whether he understands the gravity of what has happened, and whether he is ready to accept help for his drug problem. He is mostly unresponsive on these issues, although I can tell he is listening. It breaks my heart to say this – and I PRAY that I am mistaken – but my gut tells me that as horrifying as his current situation is, we may not be at his personal “bottom” yet – the place where he will understand and accept his addiction for what it is. I am terrified by this – absolutely terrified. I can barely sleep at night wondering how we can possibly get through to him before he is right back on the streets where this happened.

The doctors have begun discussing his potential release. This is likely to happen sometime in the next week, which is incredible and alarming to me. I assume and expect that he will go directly to inpatient neurological and physical rehab, but if the scenario the doctors propose is one where he comes directly home and we do outpatient rehab, I feel very insecure in my ability to care for him well enough when he still cannot walk, talk well or care for even his basic personal needs. But I understand that hospital beds are for people with physical illnesses and injuries – not neurological ones – and that once the specifically physical manifestations of what happened to him (lungs, heart, broken jaw, etc) are well enough resolved, he can’t stay here. But we will just cross that bridge when we get to it. Today he will have his first consult with the neuropsychologist, so we’ll have a lot of questions then about what we are looking at for H in the days and weeks ahead.

Once again, I want to thank my friend Jillian (whom I owe a trip to the Sitar buffet when this is all over!) for setting up the really great online Care Calendar that has been allowing friends to coordinate helping us with childcare and food. I simply CANNOT EXPRESS how much this help has eased our burden on a day to day basis. Thanks VERY, VERY much to every single person who has helped us in some way, as well as those of you who have sent notes, emails, messages, texts, etc. I have been especially touched and moved by the highly personal sharing so many people have done since this started, letting me know about their own personal struggles with addiction – or with a child’s addiction. I’ve felt so alone, and hearing that others have beaten this disease gives me the hope I need to get through each day.

xoxo,

Katie

Thanks so much to the very sweet and tremendously talented Lisa Belkin for featuring my mothering story in the New York Times today. I am bracing myself for the inevitable criticism that will come with my decision to go public, but if one other family is helped, it will be worth it to me.

Today is my first day back at work. It will be difficult to concentrate, but because I love my job, it’s also great to see my coworkers and clients, and dig back into my various projects. My brain could probably use the reboot.

The current plan is for me to go to the hospital each day for 1-3 hours before work, then go to work for the day (sometimes spending my lunch hour at the hospital when I can), then go back to the hospital for the evening, returning home in time to see 14 year old J and 12 year old E off to bed as many nights as possible. I won’t see much of my two year old for the time being; yesterday, she was asleep when I got home from the hospital late at night and asleep when I left for the hospital again this morning. But I don’t see any other option for now. Because she’s not allowed on the floor where H is being cared for, I have to leave her behind for all the hours I am at the hospital, and I am missing her like crazy.

Jon is being a complete hero, pretty much solo parenting (with help from his mom and my sister Betsy), and holding down the fort in general. Yesterday I came home and napped for two hours and when I woke up, he had vacuumed the whole downstairs and done a bunch of laundry. I know he wishes he could get to the hospital more often to spend time with H, but somebody has to be at home to take care of the toddler and to get E and J fed and their homework supervised each night, etc.

E and J are having a tough time; they are both stressed to the max. I am SO PROUD of how calmly and gracefully the two of them are handling this incredibly traumatic situation, which includes a lot of separation from their mother. I wish so much that I could protect them from the burdens they are dealing with right now.

Thanks again to the wonderful Jillian S., who set up this cool online calendar to allow people who want to help us out to sign up for various kindnesses, like feeding my kids when I am at the hospital or helping with transportation and childcare. Just knowing that we have some back-up support on this daily logistical stuff is a big stress reliever for me. It allows me to focus on H because I am not so worried about what poor Jon will manage to come up with for supper for the other kids while I am gone.

Because of the nature of H’s injury and illness, his father and I are keeping close tabs on who sees him or can check in on him while he’s hospitalized. But if you are a family member or friend and would like the info on how to send him a note or a card, email me at Katie.Granju@gmail.com and I will give you the scoop. He would love hearing from people, I’m sure.

Today I hope to speak to the hospital patient advocate and social worker about some questions I have about H’s outlook for rehab, and I also hope to have another productive conversation with the detective investigating the assault on my son. I am not sure we are making the progress there that I would have hoped for and I just want to be sure that the Sheriff’s Department has all the information they need to vigorously pursue the suspects. I will rest a lot easier when they are off the streets and pose no further threat to my child …or yours.

UPDATE: H has been moved to a new area of the hospital to focus on neuro rehab. They are asking that we limit visitors for the next few days at least to try to avoid overstimulation and help him rest and heal his noggin. As for me, feeling overwhelmed with gratitude by everyone’s expressions of love and concern.

I gotta tell you, I wouldn’t wish this experience on my worst enemy.

Also, my sweet friend Jillian has set up a calendar to coordinate efforts among anyone who would like to help out with food, etc while H is hospitalized and recovering. THANK YOU JILLIAN!!!!

This morning’s update is – as usual – a mixed bag. The great news is that H’s physical injuries are healing to a degree that he may get to move out of the ICU today into a step-down room. We are all hoping this is the case, although we will be sorry to leave the amazing ICU medical staff behind. They’e been just terrific.

His pneumonia is resolving slowly. He remains on several antibiotics. He will likely stay in the neck brace for days or even weeks, depending on what the neurology surgeon sees/says when he gets a better look at the soft tissue and ligaments in H’s neck. In order for the MRI of his neck to be most useful, H has to be able to follow some simple commands to facilitate the procedure. Since he can’t do that yet, we don’t have as a clear a picture of his potential neck injuries as we would like.

Cognitively, he’s in and out. His long term memory seems good; he remembers who we all are and can remember things from years ago. But his short term memory is not as strong. The biggest issue is that he just sort of fades out mentally after about 20-45 seconds of trying to talk. He just goes back somewhere deep inside himself and isn’t with us in the way we would like him to be. Today he seems (to me anyway) less willing to engage or use actual words to communicate, and he also seems a little bit blue to me. Sometimes he just starts weeping out of the blue, and can’t get the words out to tell me what he’s crying about. That just about tears my heart out. I am really looking forward to getting started with the neurological and physical rehab he will need to start helping him bring his full functioning back. I know he’s in there – whole and perfect – and we just have to find the best ways to bring him back to us.

Right now he is sort of propped up in a reclining chair in his room. Being out of his hospital bed is important to build his strength up and to help his lungs clear. He can’t really sit up on his own – he sort of falls over – but we have him propped up with pillows and blankets. Sitting up at all seems to just exhaust him. He is as weak as an infant and unable to coordinate his physical movements as purposefully as he will after he gets the rehab that lies ahead.

My Uncle John and Cousin Thomas had to go back this morning after spending 24-7 here at the hospital for several days. They will be back in a few days when they can, which is good because I think the two of them seem to get the most response out of H – emotionally and verbally. We are surrounded by loving family and good friends have been amazing (thank you my sweet BBK!). I have to return to my full time job tomorrow, and the other kids go back to school. That’s when this “new normal” for our family is really going to hit a stretch calling for a lot of endurance and strength from each of us. We just have to get through each day – one at a time – with me getting my work done and spending the rest of my time at the hospital. Coordinating meals, getting kids to and from school, homework done, E to lacrosse practice, etc isn’t going to be easy in the weeks ahead, but we’ll soldier on through. We just will. My employer and coworkers have been simply wonderful in their compassion and care for me through this horrible event so far. I am really grateful to work for/with such an astonishingly kind, compassionate group of people.

HE WOKE UP!!!

This morning H is talking some, although his focus, memory and attention are not what we will look for in the weeks ahead as he heals. When he said, ” Hi Mama,” when I first saw him this morning, I began jumping up and down and hollering with joy, tears streaming down my face ( an entertaining sight when someone is at ginormously pregnant as I am). But those were – without question – the most important, beautiful words I have ever heard another human being utter, and I will never forget that feeling of hearing my son say them as long as I live.

Best. Words. Ever.

In other news, we have had one rather alarming bleeding episode today so far, but that’s under control now. The injuries from the assault part of the equation are becoming clearer, making it also clearer that an arrest or arrests are necessary to protect the public from whomever would do this to another person. We have full confidence in the Knox County Sheriff’s Department that they will finish their investigation just as soon as they can and will find out who did this to H.

The doctors have decided to leave his cervical brace/neck collar thingy on for now because they are worried about his broken jaw, as well as some possible torn ligaments and soft tissue damage in his neck that could cause his neck to be unable to support his head. And the last thing you want someone with a healin brain injury to have is a floppy head. Right now he is down having another CT Scan to take a closer look at several of his injuries; when he gets back I am going to see if he can talk a bit more before trying to get him to nap again for a few hours.

He is still much weaker and less able to control his movements on one side of his body. Apparently this means the brain injury likely had more impact on his functioning on that side as opposed to the other. This is something we hope that time and rehab will remedy.

I want to give a huge shout out to all of the medical staff at the University of Tennessee Medical Center’s critical care unit. They are all amazingly skilled, compassionate and just plain terrific. I cannot say enough good things about the excellent care H is receiving, or about the kind, thoughtful way they have interacted with our whole family during this, the most stressful experience of our lives. Good peoples, they are.

When H was admitted to the ICU on Tuesday (or was it Wednesday?), we were told there would be good days and bad, and even days where things will go up and down during the same day. Today has been a day of tremendous progress, with some hard parts as well.

In the best news at all, H was taken off the ventilator; he is now breathing on his own! They thought they might have to give him a tracheotomy, but they did not. He is on extra oxyen as needed, but no ventilator tube is down is throat any longer. He is also off of total chemical sedation. They take his sedation up and down as needed to let him rest and his brain swelling to continue to improve, but we are weaning him from the sedation to try to begin getting a sense of his cognitive function.

And as far as that goes, we’ve also had some great progress today. He sometimes opens his eyes a bit, although focus isn’t there yet. He definitely grimaces in pain, which is hard for me to see, but a good indicator of his brain function. He is not yet really responding to commands, but I sense very strongly that he is trying. I think he seems happy when I am with him and displeased when I leave, but I may just be doing some mama-projecting.

The ENT discovered today that he has a broken jaw, and one ear is still so filled with blood that she is not yet able to assess how his hearing may be in that ear from the blow that broke the bone. She thinks his other ear is likely okay. He is still in a neck brace and has a feeding tube, as well as several IVs.

He is beginning to experience physical withdrawals from the drugs that caused his overdose. This is VERY hard for me to see, and I experience a range of emotions observing the symptoms – from frustration and anger at him for doing this to himself to an overwhelming desire to just make it all stop for him – just make my baby feel better.

The neurology consult this afternoon was a bit of a downer, for me anyway. The neurologist told us that we should be “optimistic but realistic” regarding H’s prognosis for full neurological recovery. The injury to his brain was significant, and unfortunately, only time will tell us what outcome we are going to see. Of course, I assume the best but have terror of the other possibilities.

Once again, thanks SO MUCH to EVERY SINGLE PERSON who has let us know they are thinking of our H and his recovery. You really just have no idea what the messages of support and love mean to all of us. It’s really lifting me up during this, the most horrifying experience of my life, bar none.

xoxo,

Katie

Please pray for my sweet son H, who is in critical condition following a major drug overdose and a brutal assault. He is on a ventilator and in a medically induced coma to try to bring down widespread swelling in his brain due to a period of time with low/no oxygen. He aspirated and his lungs are injured badly. The next few days critical for him.

Thank you so much to all for healing thoughts and prayers.

Hug your babies tight.

xoxo – Katie