Difficult Time of Year

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babygirl2This time of year has been very difficult since my daughter died, almost three years ago. Three years ago, we were fighting to save her life. We had so much Hope that she would wake up, and come back to us. When they first told us she would never be the same, I didn’t get it. I thought it meant the experience would transform her emotionally and mentally. It didn’t take long for me to understand they meant physically. I accepted that, as long as she could wake up. They told us that because she was young, her chances were better of surviving. If she still hadn’t woken up at 6 weeks, then her chances were slim of coming out of it. At that point, they hadn’t done an MRI, so we didn’t really know the extent of her brain injuries. I will never forget the meeting where the doctor told us her midbrain was gone. I didn’t get it, I asked him, “you mean, not coming back?” He confirmed this, which meant, no hope for her to come back to us. If she were to recover at all, it would be in veg. state. My baby, 17 years old, a senior in high school was going to either die or lay there for the rest of her life hooked up to feeding tubes and IV’s to give her the massive amounts of various meds to keep her alive. They had to feed her 20,000 calories a day for her to maintain. The storming and posturing was like running a marathon 24/7. She weighed 96 pounds when she died. We made the decision to let her go be with God. I continue to struggle with my Faith, as it was completely torn apart when she died. I wanted to die, I needed to die.
The last three years have been a fight to heal my Faith, and try to live in a way that would honor my daughter, and not disrespect her in any way. I have tried grief counseling, I have gone to twelve step meetings for 23 years, which have saved my life. I recently attended a couple Compassionate Friends meetings.
This last Summer, I got married to a wonderful guy. I never thought I would even want to do that, let alone be capable of letting someone close enough to me to get married. He has had to watch me suffer, and has been very caring and supportive. I know it has been difficult for him, and my other kids. I could write a whole segment on my other kids’ journey, and how they have given me a reason to keep going.
My son is a Senior now, which has been scary. He is right where Alex was when she died. Two days ago, a girl in his class committed suicide. Another tragedy in this small community. This is the second student who took her life since Alex died from his school. I feel utterly powerless with how to help anyone, including my son. So much death and tragedy. Two of my best friends died tragically since Alex died as well. My mother took her life when I was 11. So here I am, not going to work, in my pj’s, writing this blog, which I’m sure is utterly depressing. I have to say that writing has been a huge coping skill since the accident. I haven’t been writing as much, as I get tired of own rants. It is important to release this though. I fear I will have a break down if I don’t. My husband has encouraged me to take care of myself, and told me with everything that happened, it is okay to not be strong and march on. I have always tried my best since a little girl to be tough, and not let circumstances defeat me. Thank you to my husband and kids who give me a reason to pick up the pieces of my shattered soul and continue on.

Another Family’s Tragedy

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imageAs I follow the young man in Good Sam. ICU, I have flash backs. He is having his trach and feeding tube put in tomorrow. When you had that surgery, I didn’t realize it was because it was because they predicted you were not going to wake up anytime soon if at all. I know they don’t know that either. They don’t know all the agitation can mean. I am reading between the lines. I am also staying away and keeping my mouth shut. At first, I was a bit crazed to find a way to help. The fund raiser has been productive. Someone put an ad in the paper. I wish there would have been an article asking for prayer, letting people know what happened to you, Landria and Rylan. Not for money, for validation.. I want everyone to know. Is this selfish, unusual? I think I want to carry your memory, I didn’t want you to be forgotten. I want people to know the burden Landria carries and how broken she is. I haven’t done very well with that. I have been upset, mad and unforgiving.
I am also mad at the lady who was in front of you driving 20-25mph in the fog without flashers. I think it is disgusting she was gossiping about the speed Landria during to pass her, when it was to plow into her.the first thing she said to her dad as she was very out of from all the drugs was why were they stopped? She thought that car was stopped, she was not passing, just to pass her.

I will finish this entry tomorrow. I decided to end this entry where I left off.

More Research and Clarification

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imageToday, I spent a couple hours doing some research about the areas of Alex’s brain that were damaged or gone. I believe I gained a different, more clear perspective than what I had before. The explanations that we were given were vague and simplistic. This was all I could handle at that time. I have spent these last 21 months ruminating over all the details of Alex’s’ injuries and all her hospital journey entailed.

I was able to understand why the doctors told us she would never walk, talk or feed herself. She had a thirty percent chance of gaining minimal consciousness. This means that she may show some sign that she is in there, but not communicate. Even then, it would be vicarious. I remember the specific trauma team meeting when we got the results of the first MRI. Her trauma surgeon drew a diagram of the brain to help us understand what he was about to show us on the MRI. He explained that the dark spots were actually parts of the brain that were gone. He showed us her Reticular Activating System (RAS), which was severely damaged. It had little holes scattered throughout the RAS, which is so small,yet so crucial. The RAS is responsible for communicating with the frontal cortex to wake up, so any damage decreases  a coma patients’ chances of regaining normal consciousness. With the amount of damage her RAS had, it was probable that she would never wake up.

The next section affected that he drew out was the midbrain. He said the section down the entire length of the middle was gone. I remember asking him what he meant by “gone”. He then said he meant it was dead, not coming back. That was when I finally understood that brain cells do not regenerate or heal. He explained that without those two very important parts of her brain, we were facing the reality that this may be as good as it was going to get.

That wasn’t all of the bad news though. Her Basal Ganglia was severely damaged as well. The simplest way for me to remember what that could mean is that people with Parkinson’s, Tourette’s and Huntingtons Disease have damage in the Basal Ganglia. Alex’s hands already had the appearance of damage. This was from the spasticity of the posturing, which is involuntary flexing, wringing and clenching of extremities. I was able to find a medication through my research that they had not tried for this. It had optimal results by administering the medication, Baclofen through a intrathecral pump. That was not possible, so they gave it to her in her Picc line. She didn’t do well with it, so she didn’t stay on it very long.

When we had a meeting with the first of three Neurologists, he told us she would never wake up, talk, walk, feed herself. I flipped..I asked him how sure he was. He said he was 99.9% sure he was right. I asked him about his credentials. The trauma nurse interrupted and told me I could go online and find that information. I got very upset with her. I stated that I felt it was completely reasonable for me to want to know where he went to medical school, did his residency and how many years he had been practicing medicine. After all, I said I wasn’t asking how many divorces he had been through. I was being asked to trust some doctor who was telling us that our daughter would never wake up. Alex’s trauma surgeon chuckled. I surprised myself, but I was advocating for Alex’s care, her life and her fate. Needless to say, we got two more Neurologists to meet with us to be sure.

The next two Neurologists were more humble and would not give us a percentage. In fact one of them had been my grandma’s doctor. They then joined the team of tweaking her meds to help with storming. They reintroduced Baclofen to her regimen. I say that because it made me wonder about them not being involved sooner. After all, I am the one who suggested adding Baclofen after reading about it. Her mother, not even in the health care industry. I believe her trauma doctor did not feel we would do well with knowing the truth any sooner than we got into Alex’s prognosis.

When my dad came the day after the accident, Alex’s trauma doctor, who was in charge of her case, showed us the second CT scan. He had tears in his eyes as he told us how sorry he was. I do not doubt he did everything in her best interest and tried to give her time to show us how much she was capable of improving before giving an MRI. When I asked him to get second and third opinions from other larger hospitals, he did. That is actually why we had a second MRI, as Doernbechers Children’s hospital requested it. So I know we were in good hands. All the other doctors he consulted with confirmed he was doing everything they would have done. I do believe Alex would have an MRI after about a month. I do not second guess his decision to wait.

I am finding a huge need to write about this. There is so much more I want to write about. So many experiences and details. I hope someday my writing will find itself to another mom like me, desperate for answers on how to save her child or loved one.

More Reflection and Comparison

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The young man in a coma may not be doing as well as they were thinking. So much hope, so much that is unknown and misinterpreted. In the early stages, I know I wouldn’t have been able to handle the full implication of what her fate was. I needed to have Hope and denial. The hospital staff had to tread lightly, as they knew how probable it was that she was already gone.
I remember when Alex started storming. Her arms and legs started moving, so we thought she was coming back to us. Very quickly, it was obvious that it was the autonomic brain dysfunction. This is when all of her vitals spiked along with her limbs wringing and contorting uncontrollably. We didn’t even know what that meant. The nurses and doctors would try to explain what was happening, but I needed to research what was happening. I wasn’t sure if I trusted them or their skill level. After all, we weren’t in a large city. So I would go to the computers in the ER waiting room every chance I got. I remember thinking, as her mom, I could help her relax and stop posturing..boy was I wrong. It was all involuntary, she had no control over what her body was doing. The more we touched her, the worse it was.
Her dad and I became pros at icing her body to keep her temp below 101. Her temp had gone up to 106, and the nurses on that particular day were in way over their heads. When her Neurosurgeon told us he needed her temp. To stay below 101, we were like the ice fiends. We had a system down to an art. One day, a nurse wouldn’t let us do it. She poured alcohol all over her instead, but she failed to realize that wouldn’t work for this, as it was her brain dysfunction, not infection. I sat out in the hall bawling and raging. I had to have the trauma nurse paged to make this stop. If I could have punched out that nurse, I would have. If  it were me now, I would  have requested her to not be Alex’s nurse again. There were a couple who we asked to not be assigned to her a second time. I have to say, there were at least six nurses who were fantastic. Alex’s case was very complicated that required constant tweaking.

I am just reflecting as I can only imagine what this other m
I have all this information from our journey with her, but I am strugging with knowing how to use it to help this other mom. I know she has to discover what works for her. I want to tell her how I did it, but I cannot use someone else’s’ tragic process to help myself. At the same time, I could be very helpful. This gives me an idea of how hard it must be for the trauma teams. They have a better idea of how things may turn out, but have to not say too much. It is a fine line to walk.
I also have to realize that this young mans’ brain injuries are unique to his circumstances, and it may end up completely different from our situation with Alex. I would never not want him or anyone else to die or not get better. I have to allow my feelings of anger and regret that invariably come when someone is granted a miracle that Alex deserved and didn’t get. She was such an awesome human being. I miss her terribly.

Approaching Second Year Anniversary of Accident

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It has been almost a year since I have written on my blog, Mother Of an Angel. It has been a very difficult year. Life isn’t any easier as more time has passed. I have become resigned to the fact that my pain is part of my existence, and it may not ever be any different. I have a glimmer of Hope that I may also be able to also allow more in my life to coincide with this pain.
Two days ago I found out that an acquaintance of mine has a son in the same intensive care unit as the one Alex died in. He was also in a car accident. He has severe brain injuries as well, but am not sure of the similarities other than that. Brain injuries are unique to each individual trauma. I learned that the hard way when Alex was in a coma. Friends with good intentions told us story after story of the people they heard about who woke up. What we didn’t know until almost the end was what each part of her brain was not only damaged, but gone, not coming back. I always thought the brain was miraculous and could heal itself. Yes, but not literally..brain cells do not rejuvenate or heal, but the brain tries to make new pathways to take over the job the dead brain cells cannot do any longer. What I didn’t understand was that Alex’s midbrain was completely disconnected due to the tearing and shearing of her brain during the accident. That was only one problem, but enough to make it impossible for her to ever live more than in a persistent vegetative state. I have had a lot of denial about this. I have wanted to believe and fantasize about the millions of possibilities that could have saved her. I have held myself completely responsible, and beat myself almost to death emotionally, on a daily basis for almost two years. This has been the natural course of action and my process. I wish it wasn’t, I wish people; therapists, friends, my other kids, my sponsor, my dad, strangers…telling me what a good mom I am, how strong I am, how hard I fought for and how she knows how much I love her..I wish all of that could have made these last almost two years different. Not even my other kids’ pain has been able to penetrate my shield of pain and self-hatred. This other mom facing this very real, very horrible unknown fate of her son has somehow been able to penetrate my shield enough to get me back here to write this. I pray her son has a different ending than Alex. I hope her fight is to help him rehabilitate and end at home someday.

Sudden or Prolonged Death of Loved One

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A question was presented to me a few months ago…would it have been better for Alex and her family/friends to have lost her at the time of the accident or the way we did. I personally feel that I am glad we got two more months with her. I know that is probably selfish on my part. There many things that are more difficult about this. I still have flash backs of all she went through and how it felt to watch and feel so utterly helpless and powerless. I also remember the Hope we felt and the research I did and the writing, trying to find anything we could to save our girl. I was and am still so angry and disappointed that no amount of money or amount of prayer could fix her. And we had to make the decision to keep her alive in a vegetative state or let her go be with God. I Think either way it was spun, we were effed. This young girl who was killed in a car accident last night, almost a year after Alex and Landria’s accident, brought a lot of these questions back up for me..not that they ever been answered. I lost my mom suddenly, with no time to say good-bye and felt a huge shock that I still struggle with. I think about this girls’ parents, and how they did not have any warning or time to say good-bye. It makes me so mad! Why do so many people go through this. All I can say is make sure you hug your kids and tell them you love them. When times are hard, think of the parents who would take that hardship in a minute versus never having anything, good or bad, with their child again. Yes I realize there have been a lot of depressing posts from me about death and accidents, etc. since this all happened. I just hope if they bother anyone they will just delete me as a friend. Totally better than me wondering why you don’t talk to me anymore or give me a look of pity. This may make people feel more removed from this happening to them,, like it is contagious, but it won’t. I am just a mom with a broken heart trying to find a way to survive. FB is an unconventional place to do this, but it has worked to a certain point for me. I don’t know the answers, I just know I am sick and tired of the pain, my kids’ pain, and to know I can’t really help anyone who has lost a child. The only thing that will make it okay is to give their child back…