November 13th, 2006 by Atomictumor
The night nurse told me he heard the day shift nurse being told by the neurologist/doc/whatever that there is seizure activity, and that not much else has changed.
Nobody’s coming to me to tell me, they just tell me to come back at the next visit.
They’re going to start dilantin, evidently.
Am I on a need to know basis? I don’t have the mental energy to force these people to inform me properly. Are they hiding from telling me that they’re done with her? Is she getting the rug treatment?
I came home, tucked the kids in, and told them everything’s OK.
I didn’t tell them that whatever God I’ve started praying to has seen fit to grant her more pain, us more pain. “Its for a greater purpose”.
Whatever. Whatever.
BJ, I’m so sorry. You don’t deserve this pain. I love you.
November 13th, 2006 at 9:11 pm
This seems odd. They did an EEG and they won’t tell you what the result is and what it means?
November 13th, 2006 at 9:12 pm
I read your blog. Believe it or not I accidentally ran into it looking for the number for Big Ed’s Pizza.
A word of advice. Assert yourself and don’t be afraid to do that with doctors and nurses. I work in a hospital in downtown Knoxville. They should be sharing everything with you so that you know exactly what is going on. I am very sorry and I am at a lost for words and not sure what to say to comfort you. I will hold you and your family in thoughts and pray for a good outcome for everyone. Take care. I will check back from time to time to see what you write in the blog.
November 13th, 2006 at 9:14 pm
Hmm. Dilantin is for seizures, of course:
http://www.epilepsy.com/medications/b_dilantin_work.html
This makes sense to me. Perhaps the seizures are interfering with the EEG?
November 13th, 2006 at 9:18 pm
AT–
I’m so sorry.
November 13th, 2006 at 9:19 pm
AT, you have every right to receive timely information from anyone treating GAC. It is important that you let them know, in a respetful way, that you fully expect timely updates.
Don’t let them dance around you.
November 13th, 2006 at 9:19 pm
AT, sometimes you have to raise some hell to get some answers. Now is that time. Still praying for you all. BTW, Dilantin is a very common seizure med. We have several people at work who take it.
November 13th, 2006 at 9:25 pm
I’m starting to get pissed at your hospital folks. I understand that some of them are probably not willing to give you bad news out of sympathy or something, and some might be “too busy”, but that doesn’t mean I’m not pissed off.
Shit. I don’t know. I trust your instincts and am not going to give you an advice, because I don’t know what to do either.
I’m not going to lose this feeling of hope that’s been carrying me for the past few days.
I love you, Jake. Give the boys a hug for me. Unfortunately, Wolverine was accidentally left in my van. I’m going to pack him in a box and mail him to you, because I don’t know if I’ll come up again this weekend. (I got the impression that you’re ready to move on with as much normalcy as you can while we’re waiting for BJ.)
November 13th, 2006 at 9:28 pm
Not sure. At 8:30, when I was there, none of the docs were. I suppose its asking a lot for somebody to call me.
The neurologist, Dr. Lynch, did try very hard to explain the bleed after we first found out about it, but hasn’t been around when we were there since.
At this point, its sort of luck of the draw, whether we see somebody during visiting hours. I guess I could hound them constantly for information like I did at the beginning of this, but it takes mental energy I’m not sure I have anymore.
I’m beaten down, at least right now.
November 13th, 2006 at 9:29 pm
And, we see a doc about every day. Just not one that talks about her head. They’re perfectly happy to tell me they’re curing her kidney function.
Thanks guys. The medicine you used for septis may have caused her to bleed from her brain, which saved her life, but might be causing massive brain damage.
Wheres the bill?
Fuck.
I got nothing left tonight. See you.
November 13th, 2006 at 9:33 pm
I’m still praying. I hope you are able to rest a little. Goodnight.
November 13th, 2006 at 9:35 pm
AT, the drug they gave her for sepsis is, AFAIK, the only drug approved for treating acute sepsis. Many victims of acute sepsis would be dead by now of multiple organ failure. I don’t know what the future holds for GAC, but I can only be more optimistic because she is still alive.
Courage, man.
November 13th, 2006 at 9:43 pm
“Seizure activity” is a really, really broad category, honest and truly. I’ve been in session with people and they’ve had a 3-second pause and then said, “Oh, sorry, I just had a seizure, what were we talking about?”
Ugh. Just, ugh. You just have a ton of not-knowing going on down there… maybe you’ve noticed. I hope it’s comforting to know how many people care.
November 13th, 2006 at 9:45 pm
Jake, ask Treecy to talk to them. Tell them to talk to her. She is good at explaining and will take all the time you need to understand. Treecy is more than willing, but doesn’t want to push in where she isn’t needed. She graduated with high honors from one of the two top medical programs in Canada, and she was accepted into the only slot in the most sought after Surgical Residency program in the country. She is doing operations now, is a doctor herself, and is very up to date. Let her take up some of the weight for you. This is why she became a doctor. If you let her do her thing, she will be most willing.
November 13th, 2006 at 9:50 pm
Man, Sue, I’m all about it. I’d be perfectly OK with it. Hell, I’d be keen on hauling BJ on up to the great north, but I think there are some rules about that.
Hey, on the good news, her vent settings keep going down, BP and pulse are fine.
November 13th, 2006 at 10:08 pm
AT -
If you haven’t already done so, you might want to see if the hospital has a patient advocacy program. When my mom was at St. Mary’s having her lung removed, I got a lot of run around and dismissal from doctors. I got in touch with the patient advocate and things changed around pretty quickly. Their job is to liase (spelling?) between the medical staff and the patient or patient’s family. They will make sure that you get all the info and that you understand it.
Also, if you feel comfortable with it, you can almost surely take Treecy up on her offer to act as your advocate. Hospitals won’t give out info to just anyone, but if the patient or patient’s family give the ok, they are usually happy to talk to medical professionals about the case. My cousin-in-law who lives in KY got daily updates on his mom’s condition in Boston and was able to translate and advise the family on Auntie’s treatment.
Still thinking the good thoughts here in Southern California.
November 13th, 2006 at 10:17 pm
I ran across your blog last week while catching up on Adventuredad. I understand you are not a very religous person, but please know that I am saying prayers for you and will continue to do so for as long as it takes. The I way see it so no matter who or what a person believes in, there can be no denying the power of the human spirit. One of the best parts of religion is people coming together and sharing in the laughter, anger, and saddness that comes from living life. It is through this coming together that we are able to overcome and endure our daily trials. I hope you know how many people of pulling for you and that no matter what happens or how dark it gets, you are not alone. I have linked to your site and my friends/family will also be thinking of you as well.
November 13th, 2006 at 10:33 pm
Seizures in coma patients are not always a bad sign. They can indicate that some higher brain function is recovering - it’s all in context.
You are not alone. We are waiting with you.
November 13th, 2006 at 10:37 pm
My Mother was on Dilantin after her Sub-dural Hematoma. It prevents seizures, but it is a very heavy drug. When Mom woke up from her coma after two and 1/2 weeks she was confused; tired; her eyes looked like a baby-doll.After her hospital recovery she was butt-heavy, sounds strange I know. But when she was weaned off the Dilantin that went away. Keep talking to her, if the nurses will let you move her legs and arms to keep her muscles limber. It is a very loooooong road. But your love and your family will get you through it. Listen to the daily reports of doctor terms, but feel in your heart she will return. If I can help in any way please e-mail me; I live locally.Keep praying, He knows your heart.
November 13th, 2006 at 10:43 pm
Dear, dear AT,
Sending every good thought I have your way. Will look for you tomorrow.
November 13th, 2006 at 10:46 pm
Hi At,
Ok. you know ( or maybe you don’t) that I am one of faith and that I have been all my life. I grow and depend on God and truly believe that my faith will see me through. But I am really getting pissed. Is the hospital not giving you information because they are beginning to feel a sense of responsibility? You would think that in a small town there are not more pressing issues than making a priority of giving information to a healthy young father, trying to ease or at least keep current his imagination in his time off need. I do not want to tell you what to do, but I offer assistance in numbers. Could the local members of Gac’s posse show up outside with candles for a prayer vigil? First for support and love for you, Gac and family, but also to let the administration know that we are watching. Just tired of waiting for information.
November 13th, 2006 at 10:46 pm
Yo AT -
Hate hearing that BJ is still suffering - and hell yes on the demand-info-from-the-docs chorus.
Patients always need someone keeping watch and demanding information on their status.
That’s truly a massive task, but press on, my friend.
November 13th, 2006 at 10:53 pm
AT, don’t stress about the seizures and dilantin… seizures can be caused from brain trauma (eg., injury or hemorrhage), and dilantin is commonly used to treat them. It’s fairly effective, but not necessarily a permanent condition. One of my sisters took dilantin for about 15 years, but the seizures subsided and she no longer does.
Don’t give up, and don’t forget to tend to yourself and the boys. She needs your strength, which means that you have to take extra good care of yourself right now.
November 14th, 2006 at 1:32 am
AT,
You know my story about my grandbaby and her massive strokes. The reason we found out about the strokes was because she was having seizures. They did an EEG and it showed seizure activity, which is why they did the MRI that found the strokes. The way the doctor explained it to us it this: Seizures do not cause any damage but are a symptom. They can be a symptom of many different things, but with strokes it usually is a symptom of the swelling of the brain tissue from the bleed. They treat them with the medication and hopefully as the swelling goes down, so do the seizures. Also my granddaughter had several EEGs after the seizures were controlled and they showed “decreased brain activity” on all of them. But as you know, miracle of miracles, she is perfectly fine now. So although you are frustated and discouraged, this isn’t necessarily bad. But everyone above is right, you do need info. If you have someone who can run interference for you on that one end (Treecy), by all means let them. We just signed a release so my uncle in law (neurologist) had access to all records, and he got the information daily via phone and fax and then shared it with us. It was very, very helpful and was one less thing we had to worry about.
November 14th, 2006 at 4:38 am
Found you through Mom’s Daily Dose.
I’m with Daco, AT, you need to be kept up to date. The last person that should be on a “need to know basis” is you.
Sending you lots of positive thoughts and light,
Mieneke
November 14th, 2006 at 4:46 am
Hello AT.
(Hug)
November 14th, 2006 at 6:19 am
Although my mom certainly has a zest for exaggeration (I’m not sure where McMaster ranks among Canadian medical schools, and there are 17 spots across the country in ENT, not 1), she certainly is right that I am more than happy to help in any way that I can. I’m sorry to hear that the doctors are being so rotten to you. Sometimes we get tired and forget to inform families of the simple things we do. Starting dilantin is a reflex action for them to seizures, and seizures seem perfectly in keeping with a brain insult, so they may not even stop to consider how scary these words are to most people. I’m sure the only reason that they are not speaking about neurological outcome is b/c they have no friggin clue what to expect. None the less, you deserve all the info you want. The sad reality is that she may have bled into her brain with or without that drug……sepsis can cause all of your clotting factors to be used up, and when that happens your blood has no way to stop bleeds (it’s called DIC, disseminated intravascular coagulation). The drug, xygris, stops some of this cascade in the hopes of preserving these precious clotting factors. However, it does this by breaking up clots themselves, which can cause bleeding. Makes for a pretty shitty choice, doesn’t it.
I am always happy to help in any way that I can. I would be happy to speak with the doctors on your behalf, and then with you in order to explain things a bit better if needed. You just let me know if and when you need it.
November 14th, 2006 at 7:18 am
When my daughter was on life’s edge the doctors did not see fit to tell me a lot of things till I reached over the counter and stole her chart and read it. Then they realized I was not playing anymore. They were more than honest after that. I do not suggest such a tactic — but maybe a sit down with the docs would be in order to lay it all out on the table.
tg
November 14th, 2006 at 7:19 am
Hope you find answers soon, AT. Squeaky wheel gets the grease. Find out what rotation the docs are on - do they come in at 5:30 a.m.? 4:15 p.m.? Find out and be there, be somewhere, ready to demand some answers, some news, some something. And, I’d take Theresa up on the offer - wow, what an advocate to step in for you and BJ!
November 14th, 2006 at 8:35 am
Ok, AT, seriously, the doctors aren’t calling you? I’m pissed too. You deserve to know EVERYTHING that’s going on with BJ. Demand answers. Hang in there.
November 14th, 2006 at 8:42 am
AT, I think it’s time you lay the law down to the hopsital staff. It is your RIGHT to know just exactly what the docs are thinking, are gonna do, or not gonna do. We have a special needs child who has been hospitalized many times over the last seven years so I know what I’m talking about. In fact we have been where you are several times. ICU, coma, seizures, facing loss, and grieving - very close to home. Unfortunately I have always had my wife to lean on in the dark hours. I don’t know you (yet) nor do I know your inner circle. I can only say that you can’t walk this walk alone. Find your best friend, your mom, a counselor, just someone else you can lean on. And if you don’t have the strength to fight with the staff then do what Judy has said in the above comment. Get an advocate. If there is anything I can do or questions I can answer contact me at benwaddell@bellsout.net. I’m praying for you, man.
November 14th, 2006 at 8:45 am
Crap. Typed it too fast. It’s benwaddell@bellsouth.net.
November 14th, 2006 at 9:06 am
Still praying……
“A soul in tension that’s learning to fly
Condition grounded but determined to try”
A little Pink Floyd wisdom today.
Keep the faith.
November 14th, 2006 at 9:44 am
I’m still here, dude. And now? I’m gonna be humming pink floyd all morning.
November 14th, 2006 at 10:05 am
I will keep you all in my prayers! Keep strong!
November 14th, 2006 at 10:18 am
I found your blog through Amalah’s daily dose. I am so touched by your love for your wife and family. Please know that my husband, son, and I pray for BJ every night here in Chicago.
November 14th, 2006 at 10:43 am
I don’t know if I wouldn’t ask for scheduled conferences with the doctors of your choice. You have that right.
Think of it this way. They are providing you the most important service of you and GAC’s life.
To them it’s a job. They care, don’t get me wrong, but they do this all the time.
To you, it’s your whole being.
Ask for scheduled conferences. If they say no or brush you off, ask again.
It’s not out of line. I did this when my mother was ill. I felt so powerless but it helped.
And the medical people working with me were actually pretty hip about it.
Sending prayers,
nc
November 14th, 2006 at 10:46 am
AT:
I am so at a loss for words after reading this blog. I am overwhelmed by your love for you wife. I am an american living with my husband (soldier) in Germany. Prayers are now coming to you worldwide!!!
November 14th, 2006 at 11:08 am
Every time I read through these comments I’m given hope and blessed by the number of people who care about you, AT. Every time something that we think is terrible happens, someone (usually several people) come forward with their stories of hope and survival. This website has turned into a real blessing for everyone who reads it.
PS- I’d be giving Theresa some phone numbers, if I were you. I agree with everyone else that you need answers, and I can definately see that you are too exhausted to chase people down. That’s where family comes in. Hell - send mom there to hunt people down. She doesn’t have anything better to do all day, and I bet she can be an overbearing bitch if she needs to be. (I say that with love… and experience)
I’m here if you need anything, AT.
November 14th, 2006 at 11:35 am
A friend of mine (kate2kids.blogspot.com) suggested I read your blog. I’ve spent the last 1.5 hours finding out about GAC and it was not a waste of time. I’m also 29 with two children, life is so fragile and insane.
She is lucky to have you, and you are lucky to have such a great support system.
November 14th, 2006 at 12:19 pm
You’re in my prayers AT. Love you much.
Can’t wait to your WHOLE family Christmas!!!!
November 14th, 2006 at 12:26 pm
Hi, I came over from Zero Boss.
I’m so sorry you’re going though this. That sounds ineffectual, I know, but I am. I read one post and that was enough to reveal how much you are worrying and grieving. And I’m sorry, I’m so, so sorry.
You deserve to be kept informed. They should NOT keep things from you. I can’t imagine the pain and exhaustion you must be feeling, but I beg you, keep on their backs; make sure they tell you everything there is to know when it happens, and not as an afterthought. That sounds patronising and smug, I know, for someone who isn’t going through it to say, but thelaw has to be laid, not just for you, but for BJ, too, because it is her that these things are happening to.
*hugs*. I’ll come back tomorrow (I only have internet access at work) to read the Blog in full and find out if there is any more news, but I just want you to know that I’m praying for you. That isn’t much, I know, but it’s something.
Alice xxx
November 14th, 2006 at 8:06 pm
Yikes! If you read this in full, be prepared to pack a lunch, its been verbose!
Thanks, Alice.
Yeah, the law has to be laid down, but its tempered by the fact that every time I talk to them, I already know what they’re going to tell me, so either I’m clairvoyant, or I’m fully informed, but want more information than they have to give me.