He Is My Husband Forever
My husband, Kevin is 34 years old and we have been married since July 1995, and his two boys (now 11 and 13) have been living with us since October 1995 (I consider them my wedding gift from my husband's ex-wife). We have been going through IVF trying to have our own child, in March we would have been starting attempt #3. When attempt #2 failed, we were so disappointed and couldn't understand why it didn't work for us. Now I feel it didn't work for a reason, if it had, I would have been 4 months pregnant when Kevin's aneurysm burst. I doubt that our baby would have survived considering all of the stress and emotional turmoil I was going through. At this time I doubt that we will attempt IVF again.
16 August 2001
It was January 29, 2001, the day after the Superbowl. Kevin and I decided the previous week that we would take this day off from work to relax and spend the day together. The morning started as usual, Kevin was drinking his coffee and had just finished talking to a co-worker on the phone, the kids were getting ready for school and I was downstairs playing on the computer. Our youngest came downstairs to tell me dad needed to go to the hospital because he was hurting very bad. I came upstairs to check what was wrong with my husband. He said he felt like his head was exploding. I suggested he take a couple of tylenol and lay down for a few minutes. The pain was too intense and he felt better if he was upright. A few minutes later he was walking through the house holding his head asking what was wrong with him. I told him to get in the car and I would be right there.
When I got into the car he was crying and said he felt like he was going to die. I told him I would not let that happen, I needed him too much. We drove about 5 houses to the stop sign. When I stopped he got out of the car (because it hurt too bad), as he got out of the car he lost consciousness and fell face first into the street. I initially thought he slipped because it was icy that morning. When I ran around the car to help him up he was face down and gurgling. I ran to a neighbors house pounding on the door for someone to call an ambulance, I didn't feel I could take the time to run back to our house, plus our kids were home getting ready to leave for school and I did not want to scare them.
A neighbor came out and knew that my husband needed to be turned over onto his back to help him breath. It felt like an eternity for the paramedics to arrive, although it was only a few minutes. I called our kids with the neighbors cordless phone and told them dad had to be taken by ambulance and to go to our neighbors house. The paramedics had me wait in the ambulance as I was quite upset. I remember sitting in the front of the ambulance and looking at the neighbors house where our kids were and seeing them watch out the window as the paramedics tried to stabilize their dad. I can not imagine how terrifying that was for them. I wish I would have gone to them and hugged them and let them know everything would be OK, but I think I was in shock, was this really happening from a headache. I think I was afraid I may upset them more.
They finally got my husband stabilized enough to transport him to the hospital. In the ambulance my husband stopped breathing a few times, I kept yelling at him to breath, please don't leave me. I felt we could not get to the hospital fast enough, I was amazed at the number of cars who would not get out of the way for the ambulance, we actually had to stop at a red light because people kept going through the light...Monday morning and everyone was in a hurry to get to work. I still feel outraged when I think of that part.
Once my husband got to the hospital, after all insurance information had been given, they put me in a small room to wait for information about my husband. Finally a nurse and patient advocate came to see me. They had my husband on a ventilator because he was not breathing on his own and had him heavily sedated, they thought it might be meningitis or some type of seizure. I would have to wait until the CAT scan was done to know for sure. I called my mom at work to ask if she would come to the hospital and wait with me. She left work immediately. In the meantime, the nurse and advocate came back to tell me that my husband had a bleed in the brain. They told me it was very serious and I should contact his family members. They were going to transfer him via helicopter to the University of Michigan, that was not to be as the weather was poor and they could not fly safely. It was then decided they would transport him to Henry Ford in downtown Detroit.
His dad finally arrived and they let us see him before transporting. I have never been so afraid in all of my life. He had so many machines hooked to him but I was grateful he was still here. I don't know if he heard me, but I told him he couldn't leave us because the boys would have to live with their mom again, something both of us have always been very opposed to. If anything would make him fight for his life, I felt this would. I had his dad ride in the ambulance with him and my mom and I drove to Henry Ford. They did more tests and confirmed he had a brain aneurysm burst and it was very serious. They could not guarantee that he would survive the surgery. If he did, there may be complications of stroke, coma or being a vegetable. If he did not have the surgery he probably wouldn't survive.
How could this be happening - we were going to spend a nice relaxing day together and now I might lose him forever. I couldn't believe what was happening. I was consumed with guilt. How could I simply suggest he take Tylenol? Why didn't I call an ambulance immediately? Why didn't I know how serious this was? Now looking back, everything happened for a reason. If we hadn't taken the day off, he would have been driving when he lost consciousness, or been at his job and God knows how long it would have taken someone to find him, if he hadn't gotten out of the car I would have taken him to a different hospital (I later found out they do not have a high success rate with aneurysm burst, they wait for swelling to go down before doing surgery). I believe God intervened that morning.
This all started at 7:30am, by 3:00pm they were getting ready to perform surgery to clip his aneurysm. I am so grateful that Henry Ford is a hospital that does not feel it is better to wait for swelling to go down before doing surgery. The neurosurgeon, Dr. Donald Seyfried, stated they feel too many patients are lost while waiting for swelling to go down. At about midnight that night we were able to see him. We were told we still had to worry about vasospasms, stroke... I just felt so grateful that he was alive.
I went home that night to try to get some sleep and to see the boys in the morning when my aunt dropped them off (she picked them up from the neighbors when my mom called to let the rest of the family know what had happened). When I woke up (if I even fell asleep) I called Kevin's best friend, Chris, to tell him what had happened. He asked if I needed anything and I told him actually I needed someone to be with the boys when they got home from school. I knew I wanted their lives to stay as normal and consistent as possible, I did not want them shuffled from baby-sitter to baby-sitter. When I saw the boys I had no idea what to tell them. I did not want them to even consider they might lose their dad. I told them dad was OK but hurt very seriously and I would let them know more as I knew more. I really wanted to wait until I had positive news for them.
Kevin's mom, stepdad and brothers arrived from Florida early Tuesday afternoon. When we were able to see Kevin, he was on a ventilator and still had machines hooked up everywhere, he woke up later that day but was still out of it. I believe it was on Wednesday that they removed the ventilator and just had oxygen hooked up to assist his breathing. Thursday he was more awake and I was so grateful that he knew who I was.
Everyone had a different opinion of how I should handle the boys and what information they needed to know. I still don't know that I made the right decisions. I waited about 2-3 days before I told the boys how serious it was. They wanted to know when they could see their dad, I asked them if they trusted me to know when the time was right and they said yes. By the weekend my husband was breathing on his own, talking, recognizing everyone and was able to eat Jell-o. (Never thought I would be so happy that he was eating Jell-o). He could move his arms, but he could not move his legs, although he thought he was.
I decided that it would be OK for the boys to see their dad. I warned them that half of dad's head was shaved and he had staples that went from the middle of his forehead all the way down to the side of his ear, and that some of what he talked about didn't make sense (he was having hallucinations). They said they just wanted to be able to see him. I don't know if I should have waited longer because our youngest was very frightened by what he saw, in fact he did not want to go back in to see his dad. We went to an empty stairway and I let him know it was OK to not want to go back in, if he wanted to wait for a different day to spend more time with his dad, his dad would understand. In the meantime, the nurses shaved my husband's face and he looked much better. Both kids went back in to see their dad before they left. They were OK as long as they stood on the side of him that did not have the staples.
My husband continued to make great progress (no vasospasms, no seizures). After 7 days they moved him to a step down unit, stayed overnight and was moved again. He still could not move his legs and was confused, thought he was in different places... It was decided that on February 8, he would be transferred to a rehab (Rehabilitation Institute of Michigan in Detroit). When we first got there I was so afraid to leave him, I was afraid he would say something out of line to one of the other patients and they would hurt him (he still did not act like Kevin and they were also recovering from brain injuries). It was decided because my husband thought he was still walking he would not be safe sleeping in a regular bed. He could either be in a vest attached to the bed so he could not move or a veil bed. I decided a veil bed would be better. My heart broke when I saw it, it reminded my of a baby playpen. I still couldn't believe this was happening.
It turns out that this rehab was the best thing for him. When he started occupational therapy it was discovered he had a "spider" blocking his vision in his left eye. (We recently found out it is Terson's Syndrome). When he started physical therapy, they told me he would come home in a wheelchair, walker at best. We went through some bad times in rehab (not on their part, just part of the healing process), my husband did not think we were really married, when I showed him our wedding album, he responded that I went through a lot of expense just for a fake wedding. He would get me confused with his ex-wife, (which was totally out of character for him - their divorce was not nice and he could not tolerate to hear her name), he went through a stage where he thought bugs were everywhere, even crawling out of his skin, he would not even let me put my hand inside of his veil bed because he did not want the bugs getting on me. They changed his medication and the bugs finally went away.
When he was released from the rehab on March 14, I'm proud to say that he walked into our home without assistance from a walker or cane. I know this would not have been possible if not for the wonderful therapists (actually everyone there) and my husband's determination. Kevin was always treated with respect and as an individual person. I will never be able to thank them enough.
My husband has been home for 6 weeks now. He still goes to out-patient therapy for physical and speech. His speech is fine, but his short term memory is bad, he is still confused on what really happened and what he thinks happened (thinks he went out playing football when in reality he never left the house). The neuropsychologist said this is because it is unsettling to not be able to remember what you did and therefore he just fills in the blanks with events from his long term memory. He has mood swings, has no desire to go outdoors and will not do his physical and speech therapy exercises at home. He feels he is "stupid" and why bother to do memory exercises, he won't remember it anyway. He is a lead auditor and certified master mechanic, but will not even go out to the garage to putz with his tools because he is afraid he will not remember how to use them.
I am very grateful that Kevin is alive, and could live with him just the way he is for the rest of my life. But I know Kevin is not happy. It is very scary to think that his short term memory will not improve. No short term memory means no new memories.
Has anyone also suffered from the short term memory loss? Is there anything that we can do to help him want to try at home? (We're taking a lot of pictures to remind him). Any advice would be greatly appreciated.
In closing, I must say thank you to all of our family members who helped us through this terrifying time. I believe Kevin and his dad and stepmom became closer because of this (they were at the hospital with me everyday). Everyone tells me they do not know if they could be as strong as I have been, but it is really quite simple. I have not done anything for Kevin that he would not have done for me. He is my husband forever and I only want him to be happy. But I owe the biggest thanks to Chris, he has stayed with us since January 30. He takes my husband to his therapy appointments so I could go back to work. I don't know how we would be getting through this without him.
Also, thank you for this site. My prayers are with all of you.
Update 22 Nov 2001
It's Thanksgiving morning - this Thanksgiving I have so much to be thankful for - my husband is alive, we are stronger as a couple and as a family we are surviving and making the best of our situation. Thanks to Chris for staying/helping us as long as you did. I couldn't have gotten through the first few months without you. I want to thank everyone for their e-mails and support.
So many things have changed since the initial narrative. Kevin is so far away from where he was before the aneurysm BUT HE HAS COME SO FAR FROM WHERE HE BEGAN AFTER THE ANEURYSM.
Initially we thought Kevin was depressed and that's why he didn't want to do anything. After having a neuropsych test done in June it was determined that his initiation/motivation as well as his short term memory were damaged from the aneurysm. The initiation is slowly improving, I leave him a small to-do list (make the bed, straighten up the living room) and most days he does it - everyone is entitled to a lazy day, right? Although he still has no ambition to do any of the things he used to enjoy like work on his hot-rod, go on the computer...hopefully as his confidence improves this will change.
His short term memory is slowly improving. When I give him small clues he usually can remember, but he can't attach the memory to a specific day. Things that happened earlier in the day feel like it happened a couple of weeks ago. Sometimes he gets mad at me because I won't just give him the answers, he feels that would be so much easier than making him try to remember. Personally it kills me to watch him struggle but I know in the long run giving him the answers will not help him.
I made a very bad decision. I took Kevin to visit the guys at his job. During the visit they offered to bring him to work (he still is not allowed to drive) so he could become re-familiarized with his job as an auditor. I thought this would be a great thing - Kevin missed being at work and I thought he would enjoy being around his co-workers/ friends again (of the 3,300 people in the plant, Kevin hand picked these 7 people to work with/for him). So I set it up for Kevin to go there on Tuesday's for 2 hours. I don't know what I was thinking, I guess I thought they seemed so happy to see him and comfortable around him when we went to visit and that it would be OK. Well, I didn't think about the fact that I love him unconditionally and I've had 9 months to get used to the changes in Kevin. Nor did I consider this might not be a good thing for Kevin. His co-workers were not as comfortable with him as I thought they were. Plus the fact that someone had taken over his desk (put all his belongings, papers...in a box under his desk), he was not allowed on the computer, not allowed in the plant - they told him he was a liability (which I understand) and someone else had taken over his job and title. I know that someone needed to take over his job until he returns but he doesn't agree with this, it was just one more thing taken away from him. Obviously, as it turns out my good intention had a very negative result. (For the record, I don't blame or hold any grudges against his co-workers, I believe they thought because they could have conversation with Kevin and because he looks the same that he is the same, you have to spend a bit of time with him to realize his deficits and personality changes - he kind of acts like a teenager.) Since the visits to his job (which have stopped), he has begun stuttering. He is very aware that he stutters and is very frustrated by this. As with everything else in the recovery process, this is another wait and see, time will tell... I was told that sometimes (less than 1%) stuttering sets in months after a brain injury, was also told that this could have happened due to stress. So now I'll never know if I did this to Kevin by having him go back to work too soon or if it would have happened because he falls into the less than 1%.
I guess my main purpose with this update was to let everyone know that time does make a difference, that the healing continues beyond the six months that all the doctors told us and to find out if anyone else has had the onset of stuttering.
My continued prayers are with all of you.
Discussion, comments, or questions: Becky Charbeneau
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