Expectations for the future

Hi,
I am new to this board, and I would like some information on what to expect now from survivors and family members.

Our story:

At 1:17 pm, my son called his fiance and told her to come home, that he had a horrible headache. She told him to get the girls (ages 7 and 2) off the trampoline and into the house and go lay down. She got home minutes later and their oldest told her “Daddy can’t get up”. She went into the living room and found him on the floor, the 2 yr old on top of him trying to get him up. There was vomit all over both of them. He was convulsing and his eyes were rolling back in his head. He did respond to her voice but couldn’t get up and he was talking nonsense. By 1:33 he was in the ambulance on the way to the local hospital. She grabbed all 3 kids (they have a 3 month old son too) and brought them to my sister’s and picked me up. We got to the hospital to find him on a respirator and on his way to have a cat scan. After 2 cat scans, and almost an hour wait for a neurosurgeon, it was decided to lifeflight him to Philadelphia. It took almost an hour for the helicopter to get here from Philly then a 45 minute flight back to Philly.

The surgeon called me from Philly and told me my son was one step above brain dead on arrival and they could operate. She said he may not make it through surgery and if he did, he would most likely be a vegetable. I told her do whatever she had to do to save my son.

Surgery started at about 7 PM and he was in until 1 AM. They removed 1/4 of his left temporal lobe, the huge clot and left off the left half of his skull. He was kept in a drug induced coma until last Wednesday. Various internal systems started failing, his kidneys, he developed pneumonia, his heart started weakening, blood pressure dropped as well as oxygen level. It was one thing after another.
73 hours off the coma meds, he had brain waves. This was Saturday afternoon. By Sunday afternoon, he was beginning to respond to pain. Monday had him moving his left arm (we were told right side will be paralzed) and opening his eyes.

Now, we were also told IF he woke up, he would not be able to talk, and most likely wouldn’t understand what was being said to him.

Tuesday, he was opening his eyes on command and moving his arm when asked to. So it seems he does understand us. That was my biggest fear that he wouldn’t.

He is having a tracheotomy and peg tube put in today so they can get the respirator out of his throat as well as the feeding tube out of his throat.

My son is now starting to wake up and respond to us but we don’t know what is next. The drs and nurses while absolutely wonderful always prepare you for the worst case scenario. While I appreciate this, I want to know logically from others who have been through this what we can expect.

I know anger is supposed to be part of the recovery process, we are expecting that especially if he is paralyzed on his right side. Justin is righthanded and an amazing artist. If he can’t draw, he is going to be angry we saved his life.

He is surprising the drs and nurses with how well he is doing. Is it too much to hope with his understanding us when they said he wouldn’t, that he will be able to talk? Is it possible he will be able to move his right arm?

What about personality changes? His bleed was in the area controlling communication, personality and memory. We worry too how much of his memory is affected. What if he doesn’t remember his fiance or his children?

Any help would be appreciated. The dr said this was a “devastating” event to his brain. But he is also awake and responding when they said he probably would never wake up.

Sorry for the long rambling post, but I have so much going through my mind and so many questions that remain unanswered. Because the standard line is, “everyone is different, we don’t know what will happen.” GRRRR, I truly hate that answer.

Terri, I’m so sorry that this has happened to your son and to your family. At this point, it really is too early to tell what deficits your son is going to have. All that you’ve described are very good signs, that he is responsive and communicative. He may still be too medicated to even be able to recognize familiar faces yet. I know it is frustrating, but try to be patient as he works to regain full alterness. And, as irritating as it is to say, it really is difficult to tell what his prognosis will be. The doctors weren’t sure I would survive the surgery and my family was also told that I could be a vegetable if I did. Here I am a little over a year later and I’m doing very well, considering. I can tell you that it was very hard work regaining what I have, but I had wonderful support from my husband and family. The brain is a wonderful and mysterious thing, don’t give up hope. I wish you and your family all of the best as your son begins this toughest next step. Do let us know how he is doing, please. And don’t forget to take care of yourself too!

Trish,
Thank you for your reply. It does help knowing there are others who have survived and recovered from this. I keep telling them, they don’t know my son. He is very right-brained and I just know his brain will rewire itself. He is only 26 and once he gets over his anger at us putting him through this, I know he will be okay. Call me crazy or an eternal optimist, but these rose colored glasses are really great.
Thanks again for taking the time to answer my post. I am sending best wishes to you for your own recovery.

Terri,

I’m so sorry this has happended to you son and your family. I know how stressful this can be. But your son does sound like a fighter and having hope is the best medicine at this point. You and his fiancee are his best advocates. The doctors must relay the information they have based on statistics. But each person IS different and between your son’s strong will and your love you have hope.

Best wishes.

Thank you for your comments. The drs and nurses don’t sugarcoat anything and we don’t want them too, but we also know they don’t know him or his stubborness. I’m sure they hear other families saying the same thing all the time, but we will keep saying it and Justin will keep surprising them.
thanks again

GRRRRR, I hate that answer too. But at the same time, I actually appreciate that answer, because they are absolutely right. My 21 year old daughter HATES hearing everyone tell her that she’s young so her brain has such a better chance of healing than someone in their latter years. But she knows that it’s true, even if she hates hearing it said.

I’m so sorry that your son and you are having to go through this situation. It’s a horribly tough thing to go through, but keep up your faith and hope, because since he’s already defied the doctors’ initial prognoses, he’s likely to keep on defying them and beating the odds. Keep those rose colored glasses on, but when they grow heavy on your nose, take them off and let yourself grieve for what your life is right now. Then wash off your face, wipe the dirt and grime off of those glasses, and put them back on.

I will keep you and your family in my thoughts and prayers.

Kati

p.s. He won’t hate you for saving his life. (He may say he does when he’s having a really bad day, but then when the next good day comes he’ll be thanking you for it.) Lizzie was a singer, and was accepted to a university as a voice major, with a partial scholarship. Her other love was dancing. Now she can do neither. So now she focuses on her other strengths, and looks for ways to help other people in need. She still has pity parties every once-in-a-while, but mostly it’s all good.

Kati,
I read your other post with tears in my eyes. I am glad your daughter is doing so well. They never gave us an exact size of the bleed other than to say it was massive and he suffered a devastating event. We saw the before surgery and after surgery cat scan pics. The before picture showed the bleed and resulting clot. It covered about 1/3 of the left side of his brain. The after shows a big black spot where they removed part of his brain but it was taken about 5 hours after surgery and swelling had already set it.
I am already prepared for him to be mad at me for saving his life with the come back of “What would you have done if it had been Madison, or Nancey or Luke?” Those are his children. In that split second of decision, there was no thought, no hesitation, just reaction, “Do whatever you have to do to save my son”.
Thanks again for your words of encouragement. Though he is getting better, baby step by baby step, I think the hardest parts are about to begin.

Here is the newest update of what happened this weekend.

Justin is off the respirator and breathing on his own. He is mostly breathing through the trach tube because he has a lot of mucus in his throat from the pneumonia but still, he is breathing on his own.

He is awake and knows who we are. He is even mouthing words. He mouthed is name to the surgeon and even mouthed I love you to Kerstin (his fiance’). He is moving his right arm and leg. Not as much as his left but since he was supposed to be paralyzed on the right side, this is wonderful news.

The surgeon told us he beat all odds and every statistic they have on cases such as his. She said he will with extensive therapy be able to walk again and talk. She said he shouldn’t understand us nevermind be mouthing words. All of this happened over the last week which she said is basically unheard of. She kept saying it is incredible, miraculous, amazing, unbelievable. She is totally shocked by how well he is doing.

His boss and some of the guys he works with came down on Saturday and brought him toys. Yes, my son is still a big kid and loves his action figures and comic books. Anyway, he knew who the figures were. I said, well he is fine cause he knows who Batman is.

Kerstin gave showed him the Transformer toy and he reached up to take it from her. She put it in his hand and he lifted his head and held it up to look at it closer.

He still falls asleep at the drop of a hat, but he will wake right back up if you call his name. He is doing his best to try to get out of bed. He wants to get out of there. He even gave me the pleading little boy eyes trying to convince me to take him home. While all this is great, that broke my heart to have to tell him no he has to stay there.

I know he is frustrated that he can’t talk and communicate with us, but hopefully soon they can get the trach tube out of his neck and then he will be able to talk.

Terri,
Is he able to move either of his hands? If so, the speech, ot, or physical therapists ought to be able to get him a “spelling/pointing” card. It will have all of the letters of the alphabet, each in it’s own little box, plus a lot of picture symbols for different words he might need to use, such as toilet, nurse, pain, cold, hot, water, etc. This way he can point to the words, or else point to each letter to spell things out. It would certainly help to clarify whether or not he understands. Lizzie tried using it, with me supporting her wrist to help control the ataxia, but it was really hard because she would accidentally point to the wrong letters. Our sign language alphabet experience helped us tremendously. For some reason she could form the letters, even with her ataxia.
Hope this helps,
Kati

Terri Taylor said:

Here is the newest update of what happened this weekend.


Justin is off the respirator and breathing on his own. He is mostly breathing through the trach tube because he has a lot of mucus in his throat from the pneumonia but still, he is breathing on his own.



He is awake and knows who we are. He is even mouthing words. He mouthed is name to the surgeon and even mouthed I love you to Kerstin (his fiance’). He is moving his right arm and leg. Not as much as his left but since he was supposed to be paralyzed on the right side, this is wonderful news.



The surgeon told us he beat all odds and every statistic they have on cases such as his. She said he will with extensive therapy be able to walk again and talk. She said he shouldn’t understand us nevermind be mouthing words. All of this happened over the last week which she said is basically unheard of. She kept saying it is incredible, miraculous, amazing, unbelievable. She is totally shocked by how well he is doing.



His boss and some of the guys he works with came down on Saturday and brought him toys. Yes, my son is still a big kid and loves his action figures and comic books. Anyway, he knew who the figures were. I said, well he is fine cause he knows who Batman is.



Kerstin gave showed him the Transformer toy and he reached up to take it from her. She put it in his hand and he lifted his head and held it up to look at it closer.



He still falls asleep at the drop of a hat, but he will wake right back up if you call his name. He is doing his best to try to get out of bed. He wants to get out of there. He even gave me the pleading little boy eyes trying to convince me to take him home. While all this is great, that broke my heart to have to tell him no he has to stay there.



I know he is frustrated that he can’t talk and communicate with us, but hopefully soon they can get the trach tube out of his neck and then he will be able to talk.

Kati,
Yes, he is able to move his left hand, though it is hard for him to exactly control where it goes but after almost two weeks of not moving it, that is to be expected. The right side of his body is supposed to be paralyzed but he is moving is fingers a bit and his toes. He picked his right leg up and moved it over towards the left side of the bed after throwing his left leg off the bed. We think he is trying to get out of bed. He is able to move his right arm to put his hand on his stomach. Any movement of his right hand and leg is wonderful.

They aren’t putting the feeding tube into his stomach until maybe tomorrow. We will be going back down in the morning. We know he understands us, it is now just getting a way he can communicate back to us. We’ve been using blinking and slight nods or shaking of his head. I am sure as the days go on, and he is able to stay awake longer things will get easier.

The cards are a great idea. I will mention them to the nurses. Thanks. It is something so simple but I never thought about them.

That is wonderful news!

Take care,

Debbie

Terri Taylor said:

Here is the newest update of what happened this weekend.

Justin is off the respirator and breathing on his own. He is mostly breathing through the trach tube because he has a lot of mucus in his throat from the pneumonia but still, he is breathing on his own.

He is awake and knows who we are. He is even mouthing words. He mouthed is name to the surgeon and even mouthed I love you to Kerstin (his fiance’). He is moving his right arm and leg. Not as much as his left but since he was supposed to be paralyzed on the right side, this is wonderful news.

The surgeon told us he beat all odds and every statistic they have on cases such as his. She said he will with extensive therapy be able to walk again and talk. She said he shouldn’t understand us nevermind be mouthing words. All of this happened over the last week which she said is basically unheard of. She kept saying it is incredible, miraculous, amazing, unbelievable. She is totally shocked by how well he is doing.

His boss and some of the guys he works with came down on Saturday and brought him toys. Yes, my son is still a big kid and loves his action figures and comic books. Anyway, he knew who the figures were. I said, well he is fine cause he knows who Batman is.

Kerstin gave showed him the Transformer toy and he reached up to take it from her. She put it in his hand and he lifted his head and held it up to look at it closer.

He still falls asleep at the drop of a hat, but he will wake right back up if you call his name. He is doing his best to try to get out of bed. He wants to get out of there. He even gave me the pleading little boy eyes trying to convince me to take him home. While all this is great, that broke my heart to have to tell him no he has to stay there.

I know he is frustrated that he can’t talk and communicate with us, but hopefully soon they can get the trach tube out of his neck and then he will be able to talk.

When Lizzie was in the rehab hospital in Santa Clara, an 18 year old young lady was brought in to be her rommate. She couldn’t speak…could barely make sounds, but it was clear that she understood things. The speech therapist was able to communicate with her, because she was patient enough and had special techniques, and the other therapists did pretty well too, but the nurses and nurses aids really didn’t make much of an effort to try to figure out what she was trying to communicate. Her left hand was closed up into a tight ball, and she had difficulty moving her right arm and hand. She could coordinate it enough to use the nurse call button, but couldn’t use it to write legibly. She had very few visitors…only her grandmother and aunt once or twice a week for a couple of hours, and her brother and a friend once a week on Sat. or Sun. The nurses or aids would turn her tv on and put it on a station that might have something interesting for her, but then leave it there all day. Her remote control wasn’t working so she could only turn up and down the volume but not change channels or even turn it on or off.

Since I was with Lizzie every day, all day through bed time, I wasn’t going to let this poor sweet girl be all alone. I introduced myself to her and told her that I was going to be her “mom” as long as she was there. I told her I was certain we could work out a way to communicate. I told her I would change channels for her, and when I came to something she wanted to watch she should raise her right hand to let me know not to change the channel. I looked at her as we did this, and when I got to a good channel she would raise her hand, look at me and give me a big smile.

One day she used the nurse call button and an aid came in and asked her what she needed. Of course she didn’t answer because she couldn’t. The nurse raised her voice and asked her again. Again, no answer. Then the aid left. I assumed she was going to get a nurse for her. But after 5 or 10 minutes, when nobody came back to see her, I asked her if she could tell me what she needed. She tried to say something but her voice was just too weak…almost non existent. So I brought over the spelling card that I had obtained for Lizzie (amazingly, they never offered us a card…I had to ask for one) and explained what each of the pictures on the card symbolized, and asked her if she could point to what she needed. She pointed to the toilet. I asked her if she needed cleaning up and she nodded her head yes. So I called the nurse and when she came in I told her what Tasha needed. Then I showed the card to the nurse and the aid that came with her and told them that Tasha would now have that card and that they should use ith with her whenever she called for them. It made a big difference for that poor child.

Being incapable of expressing oneself must be the most frustrating thing in the world! I hope it helps your son. Best wishes,
Kati

Terri Taylor said:

Kati,
The cards are a great idea. I will mention them to the nurses. Thanks. It is something so simple but I never thought about them.