Well, this morning has started off in a really bad way. Mari’s ICP still has not gone down all night long. At 6:45 this morning, they decide they need another CT scan to check things out. Of course I am nervous as all get. I want to let Keith sleep as late as possible so I decide to call his mom to see if she thinks I should call him. She doesn’t know either. So I talk to his sister Amy and she says that I should go ahead and call him. Then I get to thinking that I should ask the PICU Fellow why the CT scan is needed. So, I have the nurse page the Fellow over so I can ask her. She comes over and tells me it is simply to find out if she is ok to start back up the CRRT (dialysis) machine again this morning. I feel so much relief after that. I am so thankful that is all it is for. So I decide not to call Keith as a result. They bring Mari back from CT. I ask what her ICP is and now it’s at 39 to 40. It has gone up a little from the night before but that is probably from them moving her around to do the scan. I call Keith at this point because I just feel so uneasy about everything. I just want to inform him of what has been going on. I tell him he can come over if he wants to but not that he has to. He says he is going to stay there and just get a little bit more sleep as he did not sleep very well last night. I say that was fine.
The Neurologist comes by for rounds around 8am and tells me that her CT scan is now worse than last night’s scan. They are going to be performing a couple of more tests to help us with the decision making process. I will tell you, I have never come to loath a phase before as much as I have “to help you with the decision making process.”
The first test is another EEG to check her brain waves and the second test is an ESG to check different parts of the brain for things. I just start to cry as soon as he begins talking to me about all of this. He also goes on to say that we are now back to where we were on Friday. I am plain flat crushed. I immediately call up Keith crying and ask him to come over to the hospital as I do not want to be alone. I just simply need him there. So he says he will be right there.
Keith gets to the hospital pretty quickly. Then the PICU Attending with all the Residents and Fellows come by to do their rounds for Mari. They talk about her CT scans and what their plans are for that day. The main thing Keith and I stress is to do nothing and just let her be stable for a few days. The doctor says that is exactly what the plan is. They are not going to reduce her ventilator as they have been the last couple of days to try to wean her off as she has not been doing very well having it done. Keith and I are fine with this.
They are first going to come in and do the EEG. They are in the process of setting it up when they decide to do the second test first. I watch the tech set Mari up. The tech first attaches to Mari’s wrists what is this blue like oval thing with contacts on it that kind of looks like what a 9 volt battery contacts look like. Then whatever she does with the machine, I watch Mari’s fingers kind of move and twitch. What is supposed to happen is the response from the fingers is then supposed to move up the arm, to the neck, through the spinal column, then through the brain stem, to finally reach the brain if everything is working correctly. The test takes about a half hour. They finally bring the tech back in for the EEG.
Around 10am, the Attending PICU says we are going to have another meeting sometime that afternoon to discuss what they have found. So I call up Keith’s mom to let her know. At first she does not want to tell Keith’s dad about the meeting because he has not been taking things well with what is going on with Mari. I tell her to let him make his own decision as to whether he wants to come or not. I do not want to hurt his feelings by not including him. Then Gina drives mom up to the hospital. Keith’s company commander Raina has also made it up to the hospital as well. She is such a support to us. We really appreciate her being here. Keith’s dad shows up first and then Keith’s mom and Gina.
I am having such a hard time by this point. You almost know what is going to happen. Ultimately, I decide I just need to get out of Mari’s room. So, mom, Gina, Raina, and I all go out to the PICU waiting room to just talk about anything but I think the obvious. It is hard for all of us. I think I am just completely numb. Keith finally comes in about 12:20pm to let us know that the meeting is scheduled for 12:30 in the small conference room.
We all leave the waiting room. I ask Raina if she will please go and stay with Mari so she will not have to be by herself while we are in the meeting. She says yes of course. Keith’s mom and dad, Gina, Keith and I all head over to the small conference room and wait outside the door. There are a couple of nurses in the room when we arrive as I believe this is the nurse’s lounge or something like that. Finally, Lori, the social worker, comes over and asks if the two women can leave for a little while as we are going to have a meeting in this room. They say certainly.
We all go into the room. They have to get more chairs for everyone. It is a big square table. We have Lori in there as well as Gretchen the PICU chaplain. I have formed a good bond with Gretchen and feel comfortable with her in there. Then the PICU Attending Melissa, the Neurologist Attending, plus all the Fellows and Residents that have been there that day working on Mari’s case, as well as Mari’s nurse.
Basically the meeting starts with the neurologist explaining how the ESG exam from that morning has turned out. What the test shows is that the charges stop at the brain stem and therefore never reach her brain. It never registered once that the test had been done. He then says that the EEG had minimal brain activity. They basically go onto tell us that Mari will never be herself again and we have forever lost our little angel. Our little girl we have grown to love. The one that was so full of energy and life. We have forever lost our precious baby girl and will never have her back again.
I start to cry and cannot believe what I am hearing. Even though, I think deep down inside I knew what they were going to tell us. Once I am somewhat able to calm down, we are able to ask if there have been any previous cases of someone like Mari that have ever recovered from something like this and they say no. I completely lose it. I break down like I did Friday when she went into cardiac arrest. I know right then and there I will never have her back. She is officially gone.
Now it is time to try to make a decision as to what we are going to do with Mari’s life. To describe what Keith and I had to go through this day, there are no words. How do you make a decision to permanently let your child go? To let them die when you know they are no longer the child you had before. How do you explain to your brain that just two weeks prior your child was running around, laughing, playing and just plain flat being Mari, our precious little angel, to now being completely gone spirit wise? To put it bluntly, you just can’t. It just doesn’t make any sense whatsoever.
Finally all the doctors and Mari’s nurse leave the room so we can discuss everything we have just heard. We ask Lori and Gretchen to stay. We all try to discuss what should be done because we do not want to be selfish and keep Mari here this way as she is already gone. She left the day she had her stroke. I actually wonder if her spirit left for heaven that day as well and is now in the presence of Jesus. At one point, just because of how the touchy the subject and situation is, I almost get into an argument with Keith’s dad. I think because he has a hard time hearing, he just does not understand everything we are saying. Keith and I kind of get into it as well over a couple of things because we are not communicating very well either. I guess you can say that this is the hardest thing that Keith and I are ever going to go through.
Ultimately we have Mom, Dad, and Gina leave the room so we can discuss what Keith and I are ultimately going to do. Then Lisa says we can talk to this nurse practitioner about things that can be done or questions we have. When Friday happened, Keith and I had made a decision that if Mari were to go into cardiac arrest again they could do chest compressions and they could give meds to help her but no shocking. We had also decided that if we were going to let her go that we would let her go via kidney failure.
Now we know we are going to let her go but we are not sure which direction is the best way to take. We ask the attending PICU doctor Melissa to come back in there so we can ask her more questions about how will be the best way to ultimately let her go. (It is still hard for me to think about how I have to voluntarily let her go. My mind just cannot wrap itself around this.) I feel like we are giving her the third degree and just grill her backward and forward trying to make our decision. I think some questions we may have even asked three or four times and decide to go a different route with the question each time to just really have all the information we need to make our final decision.
We talk about letting her go via kidney failure again but I know that we will want an open casket at the funeral. If she is to die of kidney failure then she will blow up like a big balloon and be so swollen. She will look nothing like herself after and I know I do not want that. Keith does not either. So then we ultimately decide to take her off of life support. We really grill the doctor about that. We want to know what will happen if she starts to breathe on her own. She says that there is a good possibility that she will have a brain hemorrhage. If she does not have a brain hemorrhage then she will probably die of kidney failure. We ask what will happen if she starts to breathe on her own, does not have a brain hemorrhage, and her kidneys start to work on their own. She says that they will no longer give her any fluids and take her off the feeds. Keith and I know we will not allow that to happen. It will be like we are starving her to death. There is just no way.
We finally tell the doctor that we want to take her off of life support that night. She leaves the room. Lisa then goes on to tell us about this photographer that gives of his time at the hospital and will take those last moment photos with you, your family and your child. I want that. I don’t know why. Keith does not but I do. I know I will not be able to look at them for a long time but I know I want them. The family all arrives during the afternoon. Even little Faith, our niece, who is 4 years old, comes up to the hospital. She had such a close relationship with Mari. Even though Mari really didn’t understand, Faith did. She loves our daughter so much. Mari is the closest to a sister I think Faith will ever have.
At this point, Keith, Grandpa, and Uncle Ruben go over to the Ronald McDonald house to pick up our stuff and check out of the room. While they are gone, I am able to give Mari her final bath. I wash her hair for what seems like forever, but probably only about 5 minutes. It is going to be my last time for everything and I just want it to last forever. I dry her body for the last time. I put lotion on her for the last time. I brush out her hair for the last time. I get her dressed for the last time. Her Aunt Amy helps me out. I paint her fingernails and toenails not only for the last time but also for the first time in her life as well (since she would never have sat still before for me to be able to do that LOL). I paint the fingernails on both hands and paint the toenails on her right foot. Then Aunt Amy comes back in the room and I ask her if she wants to paint her left foot toenails. She says yes. I don’t know exactly when Keith, Grandpa, and Uncle Ruben returned but they are there when it is time to do her hair. We decide to have it French braided like the nurse had done before. It is a total of 4 French braids. We sit her up and I hold her up for half of them. I notice that Uncle Ruben is just crying over to the side so then I ask him if he wants to help out and he says yes. So he sits their crying while holding her to get her hair braided. I try to share all of these last moments with everyone as this will literally be the last time any one of us will ever be able to do anything with her.
I think Keith’s company commander Raina leaves the hospital around 6pm. She has been such a good support for us. We let everyone have their last moments with Mari. We decide that we want everyone to leave the room about 7pm and just leave Keith and me to be alone with her.
During this whole time, the photographer has been taking pictures more in the background for all of our last moments together. When we have everyone leave, we keep the photographer in the room, Gretchen the chaplain, and of course the medical staff is there too. The nurse practitioner by this point cannot stay but did say good bye.
The doctor is ready to start taking Mari off the ventilator about 7:15pm. I get behind Mari and have her sitting up and leaning against me. I know there is no place else I could be. I have to hold my baby girl. She has been my life for almost 9 years. The doctor says it will be about a 5 minute process to take her off. She is at 17 reps per minute to begin with. About every 30 seconds it seems they put the reps down just a little bit further. I know when they finally take the tube out they have her down at 4 reps per minute. They finally take her off the ventilator and now we have to wait and see if she will breathe on her own.
I pick Mari up at this point and just hold her in my arms. She is my baby and I know I cannot just let her lay on the bed while we watch her pass in front of us. She starts this weird breathing. It is something Keith and I have never heard before. The best way to describe it is maybe someone with a really bad upper respiratory infection or maybe bronchitis. She does this about 4 to maybe 8 to 10 times a minute. I think about 5 minutes in the doctor does her first check to see if her heart is still beating and how strong it is. She says it is still going very strong. Before they started to take her off the ventilator, we asked about how long they thought it typically takes for someone to pass on and they said that every person is different but they would think about 20 to 30 minutes. Of course there are some that go quicker and there are some that last way longer. We just will have to wait and see.
I think I hold Mari for the first 5 to 10 minutes once she comes off the ventilator. Then I look at Keith and ask if he wants to hold her and he says yes. During this whole time, Keith and I are just sobbing. We know we are getting ready to permanently say good bye to our baby girl. We just love her and will miss her so much. At this point, we don’t even know just how much we will miss her we just know we will.
The breathing I described before we have been told is more or less a reflex and not her really breathing on her own. So basically it is just a matter of time. I know that Keith and I will never forget that sound as long as we live.
After about 5 minutes of Keith holding her in his arms I take Mari back in my arms. At first we are all sitting on the bed but my back starts to hurt so they bring over one of the bouncy chairs from the room and we moved to the chair. After 30 minutes have gone by, Mari is still with us and her heart is still beating quite strong. Mari has always been a fighter, even in the end. It is like she does not want to give up. It is like she is trying to have the last word. We keep talking to her and letting her know that it is ok to go. That we love her very much and we will miss her once she is gone but we will be ok in the end. During this whole time, Keith and I are just balling. We know how much we love her and do not want to let her go. We know that we are going to miss her so much.
I ask the doctor every so often to check her for her heart beat. Sometimes I can look down at her and I can see her carotid pulse (the pulse in your neck) beating away. I am secretly glad inside to still be able to see it. Toward the end, Keith and I are not really crying very much at this point. Keith keeps saying that he cannot go through this again. In other words, he cannot say good bye again if she holds on another day or two. It is just so hard on the two of us.
I just sit there rocking her while she is slowly slipping away from us forever. In those last 5 minutes or so, the doctor is finally telling us that her heart is starting to slow and is not as strong. We are relieved but so sad at the same time. I can still see her heart beating in her neck the last few times they have checked her. Then finally, the second to last time the doctor checks her, I can no longer see her pulse beating and she says that it is very slow. Then maybe 30 seconds to 1 minute later the doctor checks one final time and tells us that she is finally gone. She has finally succumbed to the disease that came so quickly just 2 weeks and 2 days before.
As soon as the doctor tells us that she is gone, Keith and I just break down hysterically crying as we know that we have lost her. It is just too unbelievable to comprehend. I hold her for a couple of more minutes and then ask Keith if he wants to hold her. He says yes. So I decide that I will go let the family know in the waiting room that she is gone. It is one of the slowest and loneliest walks I will ever take in my life. Imagine going to tell all of those who are waiting that the one person your life has been totally about for the last 8½ years is now just gone. We all walk back to her room together.
Once I arrive back in her room, I take her back in my arms for the next 20 minutes or so. I just sit there crying. Everyone else in the room packs up all of our belongings. I finally lay Mari down on the bed and just stand there in disbelief at what just happened. I am looking at Keith’s brother, his sisters and his brother-in-law all standing around Mari and talking. I don’t know exactly what they are talking about but they are just standing there. Then all of a sudden I become overly emotional again and just have to hold her one last time. By this point, the coloring has started to change for her. I guess it is from her being gone. I sit there for what seems like another 15 to 20 minutes just holding her, rocking her, missing her, and telling her how much I miss her.
I finally decide that I need to lay her back down in bed. This time I lay her in bed as if I am tucking her in for the night to go to sleep. I first lay her down. I gently put her head on her pillow. Then I take a blanket and cover her up. I make sure I put her arms on the outside and tuck her in all nice and tight. It will be the last time I will ever get to do that. I remember just looking at her and realizing how much I will truly miss her. That she is forever gone. We will never get to see that beautiful blue eyed, blond haired little girl run around. We will never get to hear her beautiful little sweet voice again. Just nothing.
I am just looking at her for the next several minutes. I do not want to leave that room. I am slowly walking out of the room just looking at her knowing that my life is going to forever be changed once I leave this room. I am walking out the room, around the partition that they had put up to give us privacy, and feeling so empty inside.
This is the story of what happened to our beautiful baby girl while she was in the hospital. Keith and I cannot say enough for how thankful we are for all the prayers and support we have received during this most difficult time in our life. There are no words to describe the true loss we feel but please keep us in your thoughts and prayers.
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Love with all of our heart,
Kristena and Keith
Mari’s mommy and daddy