Before I begin with my thoughts and feelings for this last year, I just wanted to take a moment and thank every one of you that have been so supportive and helping with us all to deal with this tragedy. I would especially like to thank my family:
My mother Jodi for being my shoulder to cry on when things were at there worst and stayed with us through out the last days of Macala’s life.
Kim my sister who was there at the hospital most of the time, with us and acting as a standing board to help keep us from falling apart and being there for us every step of the way.
My little brother who always seemed to be there at the right moment and shared with us the last few days of Macala’s Life. Your humor and your presents really helped with coping especially those last few days.
My big brother Mike, although stuck in Vegas I know you was still with us in spirit and your daily calls with your great sense of mind and always knowing what to say helped me through some of the worst parts and your words at the funeral still bring tears to my eyes.
I would also like to give a special thanks to Jennifer and Cindy, Becca’s sisters who helped us tremendously during this dark time, Cindy stayed at our house watching over Tristin after school and off track, and being a sounding board for Becca when she needed to vent. And for Jenny who kept the extended family in California up to date with the latest information and helping out when ever you could, and Thanks to Becca’s Mom for being there with us at the end and helping were you could, also Becca’s Grandmother Bobby who helped with a large portion of the funeral.
Thank you all of Macala’s friends who were there for her, before and after her accident, you have provided Macala with such love and happiness, you were all very much an important factor in her life so thank you for being her friend.
The Final Chapter
One year ago February 8th 2010 a distracted driver hit my daughter while crossing in street in the crosswalk on her way to school. The next four months she suffered and endured more then I thought anyone in the world should ever have to suffer. As she drifted in and out of our world I to this day wonder if she ever really knew what happened to her. All I do know is she felt pain and that was clear in all her expressions and movement when she was in pain.
I look back and recall many times were Macala would look at you and you can tell by looking in her eyes and the way she focused on you that she could recognize you. Some times it would last a couple of minutes others a few seconds before she went back to staring at nothing.
One time early morning I walked into her room and looked down at her and she was sleeping. I called her name and she opened her eyes looking up at the ceiling. I called her name again and she looked at me. Her eyes were sharp and focused upon me. I walked around her bed and her eyes followed me. I grabbed a hold of her hand and her expression on her face changed to sadness as I watched her eyes swell with tears she made her little pouty face. She looked around the room and a panic look came over her face as if she just realized something bad has happened to her.
I could only imagine what she was thinking at those moments, unable to move because the brain damage caused a disassociation from brains pathways to do easy common movements. She could not speak or make any noise because she had a tracheotomy and a tube in her throat that prevented her from using her voice box. Although she could move her arms it seemed more like aimless swinging, she could also kick her legs and got good at scooting her self down the bed. Perhaps this is the only way she could move. I also think she kicked when she was uncomfortable and in pain.
A few times she seemed to panic and the only way to calm her was to talk to her and tell her what happened and to let her know we were all there for her and we love her greatly. After a few minutes she would go back to starring at nothing, her eyes were not focused and they would become glazed over. When she was in this state it was hard to gain her attention again which was a lot of the time.
On occasion during her awake episodes she would give the appearance of mouthing words. One time Kim my sister made a reference to her panda bear that always with her and she mouthed the word panda. According to Kim it was very defined and deliberate. Other times it looks like she is trying to say something or could just be moving her mouth, its hard to say at times.
Her physical therapist would come, they would sit her up at the side of her bed at first she would like a limp noodle, but eventually she would try and help hold her self up by trying to brace her self up with her hands at the side of her bed and even a couple of times we were able to get her to kick on command.
It is times like this that would give us great hope, and she appeared to be fighting so hard and in tern would make us fight for her that much harder. But seems like every time we had to do something neurological to her, such as place her bone flap back in, or putting in her shunt she would always be set back a couple of weeks. Just seemed we could never get ahead. She would take 3 steps forwards and we would have to do a procedure that put her two steps back. I so hated that roller coaster.
Again, I could not imagine going through what she went through. For four months she endured so much. You can tell when she was suffering when the pain was so strong, you wish she could talk to you and tell you what hurts, and what we can do to make it better. Most of all you long to draw it way from her, you would take it into your self if you could, but watching her suffer is one of the things to this day that hurts so much.
The monitors above her bed showed us Macala’s blood pressure and pulse were usually the only ways she could communicate. When her blood pressure spiked along with her pulse you can tell she was in pain, often would lead into neuro storming.
You feel so helpless when she is storming, although the medical staff can give meds to counter some of the affects of storming, but they can not stop the storming its self. The storming is when the parasympathetic and sympathetic nervous system are disconnected or delayed from each other. I can hardly imagine it being possible to being fully conscious during a storming episode and she had them quite often once she started reaching the waking up process.
The wake up processes was a nightmare in its self. I actually expected it to take a few days to a couple of weeks like most people who are in a coma, however given the brainstem damage it was taking a lot longer and was a very slow processes. She never reached full consciousness that we knew of at least enough to take over her body all the way. Like I said she would have a few seconds to a few minutes here and there but for the most part she was not conscious or fully aware.
I often wonder from time to time, that she did wake up enough to be aware of people in her room, she always calmed to mine and Becca’s voice. I think she did reach enough consciousness even as rare as it was that she knew she was injured and in the hospital. She knew she had little control over her body, she knew she could not speak, and she knew we were with her. Some times us talking to her was the only way to calm her during certain procedures that were painful.
I can think of many examples of her appearing to be aware of what is going on around her, for example her fifteenth birthday, all her friends came to visit her. The day of her birthday before her friends arrived, she seemed to be struggling, she did not feel well at all, that was apparent by the blood flooded cheeks, her high blood pressure, and over all body movement like she was in pain and could not get comfortable. No matter what we did, we could not seem to resolve her problems.
We debated weather letting her friends come or not because of this, however once her friends started to arrive; she seemed to calm down and even light up. I know she knew her friends were there by the way she reacted to their voices and we had her entire room full of her closest friends. When her friends broke into play with each other you could see it was affecting Macala in a positive way.
The night and next day after her birthday however was a different story, she put up quite the show for her birthday but it took a lot out of her. It took several days to get her back to where she was before the birthday party.
I know by what we have seen Macala was on the road to recovery, I know she would have eventually awaken enough that we would be able to communicate with her on a day to day basis. I know that although she would have been seriously handicapped I think she we could have had our Monkey back. She was making great strides if we just could have held on longer with out so many setbacks from her other issues, such as her lung problem, infection etc… things would be much different today.
Looking back I were things went wrong were just those set backs, the lungs collapsing and needing of the chest tubes and all the procedures, the initial placing of the shunt, the infection in her cranial fluid and the outside of her lungs in her chest cavity all contributed to her weakening.
When we took Macala to South Davis, she just had a set back from her lung collapsing and a problem with her stomach causing her to vomit from time to time. The end of April she seemed to be feeling ill, they put her on anti nausea medicine. While she was not feeling very well, they placed the shunt in; she also had chest tubes, her lung collapsing just before that. I wonder if she was just put through too much in such a short amount of time that might have weakened her will or her ability to put up the fight she was earlier.
After placing the shunt in, we got some good responses and awareness times and even got her to kick on command but over all it seemed it might have taken too much out of her because her awareness spikes were after the shunt surgery were few and in between, however when she did have them, they were further along then they were before as though she was making great progress in her waking up processes.
The day she had her shunt placed in, the hostpital admin was eager to get her out of the university of utah hospital, they were ready to move her to a rest home and they really did not care where. I was angered by that, I felt she was not ready. With the support of our neuro doctor we got her moved to the step down unit in acute care and she was even trying to gain support from pulmonary doctors to transfer her to there unit but eventually felt there was nothing they could do despite still having a chest tube in her lung. They instead fitted her with a tube they could make portable, I feel did more harm in the long run then good.
We fought hard for Macala though, we knew she was not ready to leave the U, however the hospital was pushing us out the door, so with the help of someone at the U who jumped in to do a job the admin refused to do, we were able to get her in a facility that would continue her physical therapy that we feel made such great strides in her waking up, and be able to support her other needs.
More or less, we were transferred to a long term care facility. The first week Macala seemed to take to the change, one morning we came into her room and her hands were in the aqua braces (just by the way they looked, they looked like big aqua hands) She was slowly rubbing her hand along the side of her bed railing up to her air tube and then to our astonishment along the tube to her throat, she paused there a moment and then slid her hand back down the tube and then along her railing again. Becca called her name and she stopped.
Like I said the first week we seemed to be doing good, but she then started the vomiting around the second week we could not arouse her like we could before, her vitals were still normal, her white count was slightly elevated but still not to high. By the third week it seemed as her GI track was shutting down, basically she could not hold any food down, and we began to worry about her nutrition we tried several different types of foods and nothing seemed to help. She just started looking sicker and sicker.
Becca went in one morning and the staff was all in an excited state and that the staff doctor was looking for her. She found the doctor and the doctor and becca and the doctor decided to get labs drawn because she started spiking a fever and eventually hit 105 – we made the decision to transfer her to the emergency room at the U.
Macala was eventually transferred to the emergency ICU and right after the labs came back, her room was under quarantine, you had to wear special one time use gowns, hairnets, gloves etc… just to enter the room.
She was so weak and sick. They found the infection in her lungs and in her cranial fluid. They transferred back to NCCU (neuro critical care unit) because they had to take her shunt out.
She spent 11 more days in the NCCU she was so very sick, despite the massive amount of antibiotics we could not get her white blood cell count down, we could not keep anything in her stomach. Her body was starving. We then had a meeting with our doctor and she then explained to us the dire of the situation. We were at the end of the road there was nothing more they could do. We had her placed on comfort care and she died seven days later.
Well today is the anniversary of the morning she was hit by the car. It is hard to say how we cope, for I can simply just think of her and can draw my self to tears. And have just about every time I have to make a road trip. I love the road trips because it gives me that alone time remember and even break down if I need to get that release.
Up to this point I have lost two people very close to me, my aunt and grandmother but losing your child just adds a whole other element, and that’s the fact that you do not loose that parental instincts that you have to protect your child. It is these parental instincts that seem to cause so much pain, because you never loose that drive to protect your child and you wonder if she is ok.
But our little family is coping, and we go see her from time to time. We kinda spoil Tristin probably a little too much. We try and just live and live better then we did before. The sorrow has dissipated somewhat and the sadness still comes from time to time, but keeping busy does seem to help.
I went back to work, and it really helps to keep from dwelling on it, and Becca decided she really wants to be a nurse and has enrolled in school. She is doing good. Tristin copes by going to school and keeping her self busy with her various projects and games.
We all miss her greatly, and talking about the memories of her brings smiles to our faces and tears to our eyes, but we take it day by day, because there is nothing else you can do.
Since Macala was hit in Feburary of 2010, four other people were hit with in our community here in Magna, resulting in another death, and two children that were seriously injured.
People need to remember that driving is a privilege not a right, and we are all responsible to pay attention to our roads and those that share the roads with us. We all just need to be a little more aware and perhaps we can prevent another death.
With one last thought, people ask about the driver who killed Macala and our thoughts and feelings on that. Well, the facts are the DA dismissed the negligent homicide charge; she got several traffic tickets and reckless driving. Other then a Christmas card from the drivers family we have not had any communication from the driver her self.
We are moving on, and putting our back together and doing what we can to build as many good memories as possible because that is the most important thing of all.
I love you all and thank you for taking the time to read this; this is the final chapter and the end of my story. Perhaps some day I will write a screenplay about the whole experience and find someone to produce it… but you never know.