Beautiful Souls

Beautiful Souls
Beautiful Souls of Amoeba Awareness

Thursday, June 27, 2013

Part 7: Arriving Home

I couldn't even tell you what time we got home, but it was plenty light and sunny out still. My guess is around 6 or 630 pm. We pulled in the driveway and went in the front door. The boys, I think, went to let out the dog. I, on the other hand stood in the entry way and took off all of the clothes I was wearing and put them in the bag with Hailee's clothes. I got my bathrobe and put it on and then took the bag out to the garbage can and dumped it in there. I never wanted to see any of those clothes again. I threw away shoes.... all of it. I even threw away the very expensive sweatshirt I was wearing that belonged to my friend Leah. At the time I didn't know she had spent like 80 bucks on it. She had given it to me to wear at the hospital after I took a shower. We actually have had a few laughs over the years about that one! She wanted to know where her orange sweatshirt was and I said..... "Oh... that??? Ummmm. Yeah. It's in the trash".

I closed the door to Hailee's room and I then went and took another shower. I felt so grubby after being at the hospital, even after the shower earlier in the day. I don't remember what exactly I put on when I got out, something comfortable I suppose.  But I did get dressed because I knew before long, the doorbell would ring and people would be there. I was right.

The company, and and more food started coming within the 1/2 hour of being home. My hair wasn't even dry and there was a spaghetti hot dish and garlic bread there. None of which I could even consider eating. Sure, I pushed a noodle around the plate for a while, but no way was it going to go down. I stuck with my ice water.

I remember Justin asking if he should go and tell Kaitlyn (Hailee's best friend) and our next door neighbors. My heart skipped a beat thinking of him being out of my site for even a minute, but I knew he must have needed to do this task, so I let him go. Our neighbor on the other side was outside-- I am sure trying to figure out what was going on as cars kept coming and coming. I sent out Leah to tell Bill and Shirley. I heard their gasps and cries from inside the house. I needed to call my boss and tell her. She was not home so I just left a message for her to call me when she could, that we had a tragedy happen. I then picked up the many messages on my cell (which had a dead battery the entire time we were at the hospital). I only remember one message from my co-worker and dear friend Sheryl. She was calling about some work-related things but also wanted to know how Hailee was doing. Somehow.... I called her back. I told her we had had the worst happen. I told her Hailee had died. She broke down, sobbing on the other end of the line. I can hear her now if I really try. The phone continued to ring, but I let others deal with the calls.

More friends came by. Each of them with looks of exasperation. Some came right in and held us tightly, while others couldn't make it past the foyer. All this time I sat closely to Chad on the couch, holding his hand, staring at the wall. There was commotion in the house... but I remember almost none of the conversation. My eyes were extremely heavy, yet pried wide open.

What had happened. How? This was everyone's question. Again, surreal. Our friends brought their kids with them, kids that our kids have been close to their whole lives. The kids sat outside together, talking. Before long... a knock came at the door. Someone went to answer the door and there, on the step were Hailee's two best friends from the neighborhood standing, in tears... flowers in their hands. Kaitlyn and Christen stood there, with Christen's mom, speechless. My heart split in two again. These two young ladies had no idea what to say or do. I remember them squeaking out an "I'm sorry". How hard this was. I wanted to grab these girls and never let go. I didn't have the energy for it though. There were simply no words. Just a lot of "wall-staring" going on.

After a time, people started to prepare to leave us and go to their homes. I don't think a single one of them wanted to go, but knew we needed to try and rest. Before leaving, my friends made a plan. We needed to be at the funeral home the next morning. While we were gone, my girl friends planned to come over and clean the house for us, do any laundry etc. (Didn't I tell you earlier how amazing they are?). So off everyone went and suddenly, we were alone. The only room they would not touch or go into would be Hailee's. The four of us, in the living room, dark outside now. Alone. The quiet and stillness was so odd and chilling. We agreed that we would do a camp out in the living room. We just could not send the boys downstairs to their room. We needed to be together. So at 14 and 16, they got their blankets and pillows and made beds on the floor. Chad on the couch and I on the love seat. We had the TV on low and we tried to settle in. We were truly exhausted. We didn't really speak. After a time, the realization set in that the boys were uncomfortable on the floor as we also were on the couch and love seat. We decided that Chad and I would go in our bed and the boys stayed on the couch and love seat. The door to Hailee's room remained closed with a flickering of light under the door because her TV was still on from when she was home. She had been watching "Meet the Parents". It was stuck on the start menu of the movie. We could softly hear the intro music playing in a repeated fashion. We let it be. We fell immediately asleep.

The next recollection I have is waking up in the morning. For a split second, everything was fine. Then, it hit me. She died. She was gone. We had lost her. I couldn't breath. I sat straight up in bed and gasped for air. The sobs that came out of me at that point seemed unearthly. "No.... No...... No.....", I cried. "Please make it not true", I begged. Chad woke up immediately when I sat up and he too went into full-body sobs. The sobs and cries from the living room echoed into our bedroom. She was gone and everyone realized it. I had to get out of the bed and kneel at the side of the bed, just to catch my breath. It was the most horrible moment. Scary, sad, heartbreaking. Our hearts were truly broken.

In the later times I identified with the song by John Mayer, "Dreaming with a broken heart". Some of the lyrics are this:

"When you're dreaming with a broken heart
The waking up is the hardest part
You roll outta bed and down on your knees
And for a moment you can hardly breathe
Wondering, "Was she really here?
Is she standing in my room?"
No she's not, 'cause she's gone, gone, gone, gone, gone....

When you're dreaming with a broken heart
The giving up is the hardest part
She takes you in with her crying eyes
Then all at once you have to say goodbye
Wondering, "Could you stay my love?
Will you wake up by my side?"
No she can't, 'cause she's gone, gone, gone, gone, gone...."

Somehow or the other, we got up and tried to get ready for the day. I don't remember what, if anything we ate. We got dressed and got ready to go to Mattson Funeral Home to meet with Susan, who by the way.... saved us in oh- so- many ways. Friends were on the way to do our household chores and we had an appointment to meet with the Pastor in the afternoon. Off we went.

I remember as we got closer to the funeral home that I realized that she was there. Her body was inside of the building we were going to. I let my mind wonder what she looked like now. Did I want to ask to see her? Should I? Could I? My heart raced again. My baby would be in the next room from me, and I knew I would not ask to see her. I just couldn't.

We arrived, and Susan immediately wrapped us into her kindness and genuine care and somehow, made us feel...... better??? I don't know how she did it, but she was amazing. She walked us through the process and helped us to come to our decisions with such grace and ease. She is awesome!

Now, I must say to you that Chad and I have always been just on the poor side of middle class. We started our life off getting married at 18 and 19 years old and had our first son, Marcus when I was 19 and Chad was 20. After child number 2, Justin... is when Chad went to college. I went to college after Hailee was born. So... we were backwards, so to speak. We have had to look at the price tag on every single thing we ever purchased. We made a very clear decision together at the start of panning of Hailee's final arrangements that we were not going to look at price tags. We were going to choose what we liked and what Hailee would like and we were not going to worry, for the first time in 18 years of marriage. It was a good decision. It made the decisions so much easier to make.

The only thing we couldn't figure out is how we ended up in a meeting room at the funeral home, planning a funeral for our baby girl. How did we get HERE? It made no sense.

More to come,

Wednesday, June 26, 2013

Part 6- Goodbye Hailee Marie

Four o'clock arrived. No matter how much we wanted to put it off, we knew as a family we could not. Of course we had ideas of keeping her on life support while we sat with her longer. Looked at her longer. Held her longer. Somehow though, we did know that we needed to face the inevitable. We announced to every single person that had sat with us these hours, held us and cried with us and for us and for the loss of Hailee, that anyone was welcome to be present in the room at the time of her body's death.

We discussed openly with our visitors that we needed to believe that Hailee had already died, her brain had died and that we were now just releasing her body so she could go to Heaven.

We had probably 15 or 20 people present in her hospital room when it came time to end things. Others waited in the waiting room that elected not to be present. We all said our final goodbyes. We hugged and kissed her, held her hand and prayed together the Lord's prayer. Grandparents, aunts, uncles, friends, our boys and Chad and I. It was hard to breathe. The world was off its axis.

I have seen many deaths as a nurse that has worked in geriatric care for years. This was unlike anything I had ever seen. For the life of me, I could not imagine what would happen. Would her body move, would she gasp for air? What if she gasped for air? Would I jump up and tell them to hook the machine back up again?

I imagined her floating over us above the hospital room, watching us. Wanting to help us. Wanting to tell us it would be okay.

I sat in a rocking chair in the room, because I could not stand. My legs would not hold me. I heard Chad go over to Hailee and tell her he was sorry that he couldn't protect her and that he'd let anything happen to her. (I cry here now, recalling this particular memory).

Finally, yet already, the moment came. The paradox of our existence came full circle. The Doctor and nurses came into the room and began to remove Hailee from the machine that was breathing for her and making her look so peaceful, and alive.

My hands shook, my heart shattered in a million pieces. I wanted to scream STOP! But I said nothing. I looked around the room and saw torture and sadness in the eyes of our loved ones. We were in this together, yet I felt alone. Naked, in a crowd of people. Exposed. Every bit of fear, horror, torment was evident in my body and face, I am sure of it.

Then, the nurse (I think her name was Michelle), told us as kindly as she could that she was going to turn it off. And she did.

We waited and watched as Hailee's living body joined her brain that had gone on ahead of her.

It was fairly uneventful. It was quiet. There was nothing. No movement, no breaths... no real sign that she had gone..... except the machine. When the time came, the nurse turned down the volume on the machine, indicating to us she had gone.

Her beautifully summer tanned skin turned ever so slightly pale. She was gone. ....... gone.

I can't really tell you what happened in the very next moments. A very thick fog resides where that memory is so it is hard for me to try to describe it.

Eventually, we said our last goodbyes and made our way back to the main waiting room. It was a mess in there to be honest! We had more visitors than I think they knew what to do with. We collected our things and prepared to leave the hospital. This was such a somber, somber time.

I imagine the staff at the hospital helped us, and said goodbye to us but I don't really remember it. I do remember them handing me Hailee's personal belongings in a hospital bag. And then, we left. We got in the elevator and starting walking down a very long hallway to find our car. Chad, Marcus, Justin and I.

Our newly numbered family of four left that hospital and left our angel girl there, in a hospital gown waiting to be collected by the funeral home. Leaving without her was one of the most devastating moments. But, what were we to do? It was over. (But, it was just beginning.)

We somehow arrived at our car and got in. I turned around to see my boys in the back seat. Justin was behind Chad and Marcus was in the middle seat. I must have looked confused because he said to me... "I'll take the middle seat and leave the outside seat for Hailee". My precious, protective oldest boy just said and did THE most Man-like, Chivalrous thing I had ever seen. My heart warms right now remembering it.  This is how we rode home. No radio. No talking. Windows cracked open, hot air coming in the car. How dare it be so nice out?

The only thing that was discussed on the way home was from me. I told all the boys/ men in that car that no matter what happens, we all have to stick together. Each persons thoughts are important and need to be said right away. No harboring feelings. We need to just say it out to one another and everyone needs to be there for one another. It was agreed. This is what we would do. It was our very first plan for the future that we had and we were going to stick to it. It was a very long, long ride home.

More to come,


Monday, June 24, 2013

Part 5: Decisions, heartache and tears......

The next hours were some of the worst we have ever seen as a family. There were so many decisions that had to be made in a very quick time-frame. First, Chad's brother Mike, Sister-in-law Sami (about 4 months pregnant) and his youngest sister Sarah were on their way from Colorado. They were told that Hailee was critically ill, but had not been told that her brain had died. Did we try and reach them and tell them? Did we wait for them to arrive to tell them? Did we wait until they arrived to turn off the life support? Chad, I, our boys and our parents sat in a private area to discuss. We determined we would not wait for them to arrive to remove the life support, however Bruce or Sue would call Mike and tell them that she had died. How very hard for them to be so far away!!! Our hearts broke, but we knew that we had to do what needed to be done. We could wait forever if we thought about it. We set the time for 4:00 PM. We told the hospital staff. They sent us a chaplain, social worker and all of what I suppose is normal. We prayed. And then we cried more.

All throughout this time, more family and friends were arriving. Meanwhile, we were still being asked many questions.
1. What funeral home did we want to go with?
2. Did we want an autopsy? (The Medical Examiner (Coroner) declined doing an autopsy, however we could request the hospital perform one for scientific purposes).
3. Did we want burial or cremation?
4. Did we want a visitation with an open or closed casket?
5. Would we want to privately view her body before the service?
6. Who would be present when life support was removed?
7. Did we want to help wash her hair, body and prepare her body for death?
8. Did we want a disposable camera so we could capture some final photos of Hailee?
I think there were more, but these are a few that come to mind.

It was exhausting, as you might imagine. I wanted to SCREAM that I wanted NONE of it. I only wanted Hailee to live. That is all. I didn't want these questions. I didn't want any of it! None of us did.

At some point, and to be honest it might have even been earlier in the day... but Chad and I both decided to get cleaned up. We were worn out. Now up for about 36 hours straight. To be honest, we both smelled. The stress and pressure and cold sweats, hot flashes and anxiety were enough to not be able to stand ourselves. So we took advantage of the little suite we were provided and took showers, washed our hair and brushed our teeth. I stood in that shower and bawled and bawled and tried my best to wash it all away. I can't be 100% sure, but I believe Chad was in the next stall doing the same. It was a living nightmare. Everything had gone pear shaped. I could barely function to take the shower. My body felt odd. In slow motion and off kilter. I was a mess.

We, (my older sister Heather, and my best friends and Mother-in-Law and Chad's Godmother Mary) spent time "preparing Hailee". With the nurses help, I washed Hailee's hair. It was very tangled and messy from all that had been done. The EEG machine had a lot of glue associated with the electrode placement and then there were the tiny drill holes. My heart raced as I washed her hair. Was I hurting her? No, I couldn't have been. Her body was cleaned. Clean Hospital gown put on. Clean sheets, blankets. My best friend Leah had taken on the task of finding some pink fingernail polish. She went to the hospital gift shop, but they didn't have any. One of the volunteers in the gift shop offered to go down the street to a pharmacy and pick up some pink polish. Leah came back with 3 or 4 shades to pick from. Together, as a womanly, motherly team we painted both toenails and fingernails. I have beautiful photos of this and will share a few here that do not disrupt Hailee's privacy.

After washing her hair, I was able to braid it the way we had planned her 1st day of 6th grade hairstyle would be. It was a braid that went sideways across her forehead with the rest of her hair hanging down. We had practiced it a few times at home. She looked beautiful. Simply angelic.

When Chad and the boys came in the room after we were done, it was so hard for them to see. They cried their hearts out. But, it was done and the women closest to me in my life stood by my side and did what was needed, in our time of need. These women are beautiful. As you can see from the looks on their faces, this was no easy task. It was heart-wrenching. But, I feel my daughter had the very best of care in her final moments on this earth. Thanks to the love and support of a wonderful nursing team and loved ones.

As I said before, more and more family and friends arrived at the hospital. One of my most vivid memories is of Chad's best friend Doug arriving. I saw them through the small square hole on the hospital doors that led from the PICU out to the main waiting area. The look of torment on Doug's face will stick with me for the rest of my life, along with the gut-wrenching cries from both men, friends, for the better part of their lives. Never did they imagine they would be in THIS moment together.

We sat as a family, Chad and our two boys just 16 and 14 years old at the time and discussed our options. First we discussed the idea of requesting an autopsy. We weighed it out the best we could between the sobs and sadness and decided we would not request an autopsy. We all felt like her little body had been through enough. We did allow them to take additional blood and spinal fluid samples post-mortem for further testing purposes.

We also asked about organ donation. We all agreed we wanted Hailee to be an organ donor. Unfortunately, she was rejected due to her infection of an unknown cause. That was heartbreaking, and has continued to be heartbreaking.

We then talked about burial or cremation. I had never in my life, ever considered what I would want for a child of mine. I wasn't even entirely sure what I wanted for myself! We discussed it pretty methodically for a grieving family of four. All of us came to the same conclusion, we did not want her beautiful body to be put under the ground. I can't even describe how we came to this conclusion, but it was unanimous. We chose cremation.

We then had to decide right away if we wanted a visitation or if we wanted to be able have an open casket at that visitation, either privately or publicly because if we did, she would have to be embalmed. If she were going to having a direct cremation, then embalming was not necessary.

WHAT????? Who ever heard of all this??!!!!

So...... together, the four of us decided that we didn't really know if we wanted an open casket for the public to view, but we knew we wanted to see her again, so embalming it was.

Can you believe what went on in just a few hours of time from when they told us she had died, to 4pm when the life support was scheduled to be discontinued? It was a whirl-wind. We were completely shattered and only putting one foot in front of the other with the help of our dear friends and family that stuck with us.

All for now...... my heart aches.


Wednesday, June 19, 2013

Part 4: Trying to remember it all.....

This next part of the story is very surreal and mystical to me. It is if my being was in a different time zone. I remember the boys getting to the hospital. I believe we sat them down and told them how grave of a situation Hailee was in, and the extreme risk to her life. I can remember them welling up with tears. I remember the rest of the family arriving as well.

At some point, after family arrived, we were called into the conference room to hear the results of the drilling into her skull. It was a poor result. We were informed that the procedure was actually abandoned, because after drilling five holes into her skull, there was no relief of the pressure. In fact, there was not even any bleeding associated with the drilling. That is how swollen her brain was. Of course, the neurosurgeon was delivering the news in the most nonchalant way you could imagine. It was so infuriating.  The news was devastating, yet we still didn't really understand or realize what that meant. The doctors told us that her chance of survival was extremely slim at that this point. They did tell us they were going to take the next several hours to run tests to ensure that they were not missing anything.

I remember the doctors saying they were going to be taking Hailee to a test that would determine if there was any brain activity. They would also do a number of other exams that would determine if there was anything there. There were hours of tests that were performed including ice water being placed in her ears and other stimulus type tests. There were tests that would bring her off of the life support enough to see if she would take a breath independently. There were brain scans.

Seriously?? HOW could this happen? I just could not wrap my brain around what was happening. The sequence of events during this time remains blurry. One thing that stands out in my mind is my boys following Chad and I wherever we went. Even if I went to the bathroom, I would come out and Marcus was right there waiting for me. It was very somber. Very scary and a very long wait.

Finally, the doctors were ready to talk to us. They brought us to a conference room inside the PICU just outside of her room. We invited our immediate family members and my best friend Leah back to the room, while others that had congregated in the main waiting room stayed out there and waited for us. As we passed Hailee's door to her room, where she had a 1:1 Nurse with her at all times, I said to my sister Heather that I thought they were going to tell us that she died. Even then, Heather said, "No, she couldn't have".

We sat down in the room. I was sitting with the most important people of my life, except for one who was lying in a bed nearby. The internist and the neurosurgeon and I believe her nurse were there. They told us in quite a brief fashion that all of the tests that were performed showed no brain activity. No response to stimuli. Nothing. Then they said it. "Hailee has no chance of survival. She has been declared to have had brain death at 1:something- or- another PM today. We are so sorry, we really thought she would be okay." That was it. I looked around the room for someone that loved me to tell me they were wrong. The faces of my loved ones were in pure torture. My boys dropped to the floor, sobbing. Chad, grasping my hand beside me, sobbed. Our parents, siblings looked ashen and in shock. My best friend looked like she did not know what to say or do. Chad's Godmother Mary (who used to be a pediatric ICU nurse and had arrived earlier in the day and held vigil to Hailee through all of the tests) was next to us, her head down, crying.

I looked at the team of Doctors. The very nice internist and the nurse and the self-centered neurosurgeon and told them, "No. It is not possible. You have to do something else. There is no way!". I, of course was sobbing these words out like a 2-year old that didn't get her way. They again apologized and wished there was something they could do. I recall saying "You just don't understand! We don't work without her!! We have to have her in our family! Our world will not spin without her!" I begged. I pleaded and I begged some more.

The neurosurgeon became a little more direct and insistent at this point and began to speak to me in a way that apparently Chad did not appreciate. He suddenly told the neurosurgeon to "Shut your damn mouth, I have heard enough from you!" He then slammed his fist so hard on the table in front of us that I was sure he broke something.

We all sat there for a few moments and the sounds of the pain were something I will never forget. I heard mixes of "no, no, no" and "Dear Lord, please no". Sobs, sniffs and groans. Then..... we needed to go out and talk with the others in the waiting room. The doctors told us to take our time, and to let them know when WE would like them to remove the life support. Seriously. This is what it came to.

I knew that I would not be able to speak to everyone else waiting in the room so we asked Chad's Godmother to make an announcement to the rest of the family and friends waiting. We walked together back to the main waiting area and Mary told the group. She said something on the lines of "Hailee's swelling in her brain was very severe. The doctors have done a number of tests, however her brain has died. Chad, Heidi and the boys will be discussing when they will be removing the life support". Everyone waiting was told they were welcome to wait and welcome to go and see Hailee in the next period of time. The eruption of first silence and then sobs were equally deafening. I wanted to run. Far and as fast as I could. I found a corner of the room with Chad and the boys and we sunk to the floor. What in the Hell just happened? How could it be. I was sick. I wanted to vomit. I wanted to scream. I wanted to die. HOW could we go through this next part?  I clung to Chad and my boys so that no one would take them away and I sobbed as they sobbed. We still had a long road ahead.


Monday, June 17, 2013

Part 3: Sounds, Scents & Sights...

It is surreal. You just can't figure out what is happening. This are moving at snail speed and at hyper speed, simultaneously. People are talking so fast and so slow all at the same time. You can't wait to be through it, but are afraid to go through it. It is THE strangest place to be. Some of the sounds and smells and memories I have are so vivid, I will never forget them. I remember the sound of the loud pipes in the ceiling of the waiting room. By the end of our time there (just a brief 18 hours or so), I can remember you could do a literal countdown from the time the toilet just outside of the waiting room would flush to when the pipes in the ceiling would make a loud banging sound. Flush..... 5, 4, 3, 2, 1   BANG, BANG! Or.... the fact that it seemed like the Twins Game was on for hours and hours and hours. And it was! It was on earlier in the evening and then it was replayed in late night. None of us thought to change the channel or turn it off. Baseball is hard for me to watch to this day. I can remember the smells of the hospital. In particular, the smell of the plastic tubing, iodine, alcohol and items so sterile you were afraid to touch them. I remember the faces of our loved ones, care warned with worry and fear. These images become more vivid and difficult as our time went on and I will talk about that later.

As the long evening went on, friends insisted that we try and eat. I remember well the taste of the vending machine sandwich that I tried to choke down. It felt like swallowing rocks or sand, or clay. I just couldn't do it. I did however, drink water like I had never tasted it before. I could not get enough. That was probably good, because they way I was in and out of cold sweats, I am sure I needed the dehydration. We settled in. The hospital gave us a small hotel room like area that we could sleep in and shower because they told us it would be a long haul. That room was one more door away from Hailee, so we brought the pillows and blankets out into the main waiting room and we waited. And then, we waited. Friends and family took turns with us going in to room to be with Hailee. It was so difficult to see her like that. Chad and I could only take small doses of it at a time. Thank God for our loved ones who watched over her when we needed to breath, and scream. Hailee's temperature, while still very high started to ever-so-slowly come down. By about 2 or 3 in the morning, it was actually normal. Our loved ones celebrated. Everyone was so happy and just knew she would be okay. I tried my best to join in and rejoice, but again...... something was nagging me from afar. Maybe it was my nursing background??? It just made no sense. For the life of me I could not figure out what was happening and just didn't believe she was out of the woods. After her temperature became normal, most of the visitors hold vigil headed for home. By this time Chad's Mom and Paul had arrived from Mille Lacs. So, it was Chad and I, My mom and Dad, little sister and Bonnie and Paul waiting through the night. Sometime after people left, and somewhere between the 6th and 20th inning of the Twins' game... I must have nodded off. I can remember having that jerking sensation.... like you are falling. I was restless.... but exhausted. I kept opening up one eye to check on Chad next to me and he had nodded off as well. I allowed myself to slip a little further into sleep. Strike one..... line drive to center field..... RBI's, Base hit. All of a sudden I heard "Heidi!". With my Dad on my left and Chad on my right, I shot straight up and said "What?" The Doctor had come to the waiting room. He seemed in a flurry. He had tried to call us on our phone in our little sleeping suite, but we were not there, of course. We were still in the main waiting room. If I could describe his face to you all I would say it looked like fear, shock and anxiety. I immediately knew something was very wrong. "Heidi", he said. "Hailee's 4am neurological evaluation went poorly. It appears that her pupils have dilated, and that is a very bad sign. We are taking her to CAT scan immediately". And then he was gone. We waited, and waited, and waited. I was pacing the floor like I used to when I was 15 and talking on the phone in my parents kitchen. (Incidentally, I got in so much trouble for that because back in those days the phone still had a cord and I would stretch it out to the point it wouldn't work)... anyway, I digress.

We waited for what seemed like an eternity and finally the doctor came to give us the news. Hailee's CT scan showed significant swelling on her brain. Her condition was grave. They were calling in a neurosurgeon who would perform a procedure to drill holes into Hailee's skull in an attempt to relieve the swelling. Time was of the essence as the swelling looked to be severe.

We again made phone calls. To my older sister who headed back to Becker, MN as her own daughter's 13th birthday was that day, to Chad's Dad and Sue and to my best friend Leah. We asked them all to come back as Hailee's condition had taken this turn. We told them about the drilling and how grave things looked. We asked my best friend Leah to go to our house and get our boys, asap. All of these wonderful folks had just gotten home and into their beds and got right back up and headed to St. Paul.

Shortly after that, probably the most insensitive physician I have ever met entered the scene. He came to give us the details of the procedure and get informed consent from us to bore the holes in her beautiful skull. After telling us about the procedure and the risks (including infection, of all things) my Dad asked him a question. Now, before I tell you about this question, let me tell you just a tiny bit about my Dad. He is a Rock. At that time I had seen him full out cry on one other occasion. When his Dad died. I looked at my Stoic father and saw crocodile tears streaming from his ashen looking face. His body moved with his sobs.
He mouthed the words... I am not sure how... but he did. He asked "Wh Wha What's Plan B?" The neurosurgeon looked at my Dad and said "Plan B?, What do you mean?" My dad replied, "Wha Wha What if this pro pro procedure doesn't work?" The neurosurgeon looked right at us as he said "There is no Plan B. She will die".
Just like that.
We we had option A only.
No other solution. No other miracle. No other way.
We were holding onto one hope. It was devastating.
We grabbed the paper from this cold-hearted physician that Chad still thinks we interrupted from a round of golf, and literally signed our daughter's life away.

Off he went. And we? Well....... we waited.

More to come,


Friday, June 14, 2013

Part 2: Back to the Hospital

We reached the hospital and were brought back to the Emergency room where the physician we had seen all morning long was still on duty. He was a fabulous Doctor, we really liked him and trusted him. He had Hailee's best interests at heart. He immediately told us that a spinal tap was needed. Because of her strange body movements and the fear of seizure, he also started some medications to help with that. Hailee was very out of it and I ..... was a complete mess. My heart was racing, I could not focus. I could not sit still. I was pacing and pacing and could not even manage to be in the room when the spinal tap was being done. Chad, the brave soul, sat right with her the entire time. I, however having just witnessed (which I had not yet told Chad) in the car with God and Jesus being present with Hailee, was visibly terrified. I was in full-on panic mode.

The spinal tap immediately revealed a problem. It was cloudy, which was not a good sign. Dr. Moen told us that she either had meningitis or encephalitis at this point and began to prepare to have her transferred to Children's Hospital in St. Paul. I made phone calls to our family and close friends and we waited for an ambulance to take her. It seemed like it took a lifetime. At one point, Dr. Moen had told us that Children's Hospital had no beds available and that we would be going to the U of M. Shortly after, Children's did have a bed open up. All these years, I wonder what would have happened had we gone to the U of M.... but I will save that for a later post.

The ambulance did finally arrive and we prepared to leave. Dr. Moen had given the order to keep her calm using ativan and also had began running powerful antibiotics while we waited for the ambulance. He also began anti-virals because at this point it was unclear if it was viral or bacterial. He sent along the prepared bag of the the most powerful antibiotic ready to go for Children's to administer. They sent it with the paramedic. It was Vancomycin.

We decided that I would ride down in the ambulance with Hailee and Chad would follow in our car. I rode in the front with the driver while Hailee was on a stretcher in the back being monitored by the paramedic all the way down. I felt a sense of relief because we did not go lights and sirens. It made me feel like she was stable and that things might be okay.... but I still had that nagging feeling that would not go away.

We entered through the ambulance dock at Children's and were brought to a room. I felt like we would get there and she would be directly admitted to PICU, which is what Dr. Moen had intended, but we had to go through their emergency room process. That was frustrating. Hailee at this point was in and out of semi-alert states, but could not communicate more than a word or two. She was restless at times, in pain and she looked terrified. We mirrored each other on the terrified part. Chad and I started to notice that Hailee's posture was changing, her one leg was posturing in a strange way. The ER physician noted that too. The details are a little foggy for me but I am pretty sure one of the first things that was done was a CT scan. That was awful. Hailee's movements were kind of erratic so it took some time to get it done. Another goal was for them to start another IV in her other arm which would be a dedicated line for seizure management. That process was exasperating. To this day I still am angry that it took the ER nurse as long as it did to start an IV on a child who was now quietly resting, fully hydrated with fluids from the entire day. It was maddening. She ended up having to get help. We were then waiting, asking and waiting for the seizure medication to be delivered from the pharmacy, along with another bag of the Vancomycin as Children's Hospital would not accept the bag that Dr. Moen had prepared and sent with paramedics. Meanwhile, lab and xray were in and out, doing their tests. The ER doctor assured us that kids get as sick as Hailee was and recover. As a side note, I also broke my flip flop at some point so was walking around hobbling with a broken shoe, but I didn't care. Strange what comes back to mind sometimes. At one point, a technician came in to perform an EKG on Hailee. Just as she was about to start the test, Hailee sat up on the gurney and had the most horrible look on her face. She started to vomit. Chad and I stood by her side with the emesis basin and told her it was okay, that we were right there. Once the retching stopped, Hailee went into a full on Grand Mal seizure. It was by far the most horrible thing I had ever seen. Chad ran out of the room and into the hall and began screaming for someone to help her. (I won't type here what he said as it had some expletives in it). We had about 5 doctors in the room in seconds and low and behold the seizure medicine arrived at this point. To say the least, we were mad.

Family had begun to arrive at the hospital to include my Mom and Dad and Sisters, my Grandma (Meme) and aunts and uncles. Chad's Dad and Sue arrived during this time as well. Hailee was very, very sick. That is what we knew. As soon as they were done treating Hailee following the major seizure, the ER Director of Medicine spoke with us. They were moving Hailee to their trauma room to further stabilize her. They needed to insert a breathing tube to protect her airway. Her heart rate was very high, her fever was close to 107 degrees. The were planning to start a central line IV (in her neck) and insert a catheter with an internal thermometer. They were putting Hailee in a drug-induced coma. They were also putting her in a bed of ice. Her clothes were cut off of her and she was laying in the trauma room, exposed. It was so hard. So hard.

I went to the waiting room to update the family. Then I sat down in the middle of the hallway with my back against a wall and started to consider everything that had happened. I let my mind linger back to my conversation earlier in the day in the car. The one about God and Jesus and more panic set in. I told my mother-in-law Sue that I thought Hailee would die. I said "What if she dies? What will we do if she dies?" Sue comforted me the best she could, saying no... they will save her. She will be okay. My heart wanted so badly to believe it, but it was telling me something different.

I made another few phone calls. One to my best friend Leah, who was arriving at her cabin for the weekend in Otter Tail, MN. The other was to Chad's Mom and Paul. They live near Mille Lacs. I filled Bonnie in on what we knew. I also talked to Paul and told him they needed to head down. Paul said he would have everything ready for when Bonnie got off work and they would head down. Leah also was getting back in the car and heading to us at the hospital, but it was a three-hour drive.

Chad and I took a moment to go outside and breathe. However, the heat was sickening. It was so damn hot out, even though it was well in to the evening hours. We shared a prayer and it is here that I told him what Hailee had said in the car. We just prayed for her to be okay. We checked in with the boys here and there, they were fine at home after having played football earlier in the day. We did not let on how critical her condition was, just that she was very sick, but that the doctors kept telling us she would be okay.

Another CAT scan was ordered and once again did not show any changes, which meant they were not seeing swelling at that point. Hailee was being transferred up to the PICU for management of her care. Pediatric neurology was becoming involved. Off we went to a new team of people caring for Hailee. It was surreal. After we got to the waiting room off of the PICU and we had waited quite a while, we did talk to the internist in charge of her care. He told us that Hailee is critically ill. He updated us on everything that had taken place. The placement of the central line in her neck, the EEG machine that had been added to monitor for seizure activity (as she was now in a coma and we were unable to visualize if she was having seizures) and measures that were being taken to try to control her very high fever. He told us at this point that he believed that Hailee would survive, but that she would need a lot of therapy and time to recover. He said we may be taking home a different type of child than what we brought in and that there may be some damage that would be ongoing. To hear this news was like music to my ears, because I didn't think we were even going to take her home at all! Even though every single doctor told us that she would be okay, as a mother.... I still had that feeling in my gut. It was going to be a long night.......

More to come.....

Heidi LaMeyer

Thursday, June 13, 2013

Part 1: Starting off..... by Heidi LaMeyer

I want to extend a sincere Thank You to those that choose to follow this blog. Swim Above Water appreciates the commitment of others to learn about and spread awareness to everyone you know about the dangers of Naegleria Fowleri and the infection it causes, called Primary Amoebic Meningoencephalitis (PAM).

My daughter, Hailee LaMeyer, died from this rare, but devastating disease just days after swimming in a Minnesota Lake. She was 11 years old at the time of her death, exactly one month away from her 12th birthday.

On Monday August 18, 2008, Hailee called me at work, begging and begging me to go swimming with her friend Kaitlyn. My first instinct (from I don't know where), was to tell her no. In fact, I did tell her no. She flung into a full out "whyyyyyyyy Mommmmmm!". Exasperated, I think I said something on the lines of "Because I said so". Well, that works about as well as a broken I said to her "Hailee, it is too hot outside to go swimming". Now this made her even more unhinged. "WHAT? How is it TOO hot to go swimming? I AM HOT, that's why I want to go swimming!" She had a point. I then pulled out some language from my dearly departed Grandpa Andy and said, "Hailee, the lakes are ishy this time of the year because it has been so hot. It is Dog Days". She said... "Phuleezzzzzeeeeee Mommmmmm! Kaitlyn's Mom is going and she won't let us if it is icky". I relented and told her she could go. I heard a very accomplished "Yeay! Thanks Mom!" and off she went.

I didn't give it another thought. Hailee, Kaitlin and her siblings, my other two boys would swim at our beach area just one block from our home all the time. No big deal, I thought. Summer is almost over, I thought. Let them have fun. I am not home to take them anywhere, so she might as well go. Man I hated being a working Mom that day and in the days that followed.

The next two days went by without incident. Wednesday August 20th, I came home from work at around dinner time and Hailee was napping. Not totally unusual for an 11 year old. I thought nothing of it. Later, I asked her to come out for dinner and she said she wasn't hungry was just super tired and didn't feel very well. Not alarmed, I believe I brought her some tylenol and something to drink. She stayed in bed the remainder of that night. The next morning, she seemed about the same, but of course I had to go to work. Midday, my husband Chad called me and said he had just talked to Hailee. She was running a fever and said her arms and shoulders hurt. Chad and I agreed, I would leave work and take her in. I took her to urgent care, where she was diagnosed with an early case of pneumonia. She was given prescriptions for two different antiobiotics and we were sent on our way. At home that night, she barely ate. She felt pretty poor. We got the antibiotics and tylenol/ ibuprofen in and she had some popcicle's etc.

4AM on Friday morning I awoke to Hailee crying. I ran to her room and she looked so flushed and ill. She took one look at me and said her head hurt and vomited all over the bed. I ran for the thermometer. 104.6. I quickly got some tylenol into her and brought her into the bathtub to clean her up and also try and cool her down. She continued to feel so ill. We decided we were going back to the Emergency Room. I called my work, told them I wouldn't be in. Something in my heart when Chad asked me if he should go with us told me yes. So he did.

We spent about 5-6 hours in the ER. More tests were ran, nothing conclusive, except dehydration. They started an IV and said if she did not improve, they would need to do a spinal tap. But, she did improve! She perked up and ate some crackers and some popcicle. Her fever was doing better. We did notice though that the lights in the room were really bothering her and at one point she had a significant rash show up on her face, chest and belly that went away as quickly as it came. The doctor was not concerned. They discharged us to home. My stomach still wasn't right. Something seemed still wrong, but I was glad to bring her home!

We got home and I tried to get her to eat a small piece of grilled cheese. That did not go well. She was so tired she just wanted to sleep. So I took her in bed with me and we both nodded off. Within 1 hour, she suddenly woke up, vomited and spiked a temp again. Chad came and took her, cleaned her up and brought her into her room while I called the hospital. They told me to bring her right back in. I went to get her and Chad and he was holding her in his arms. He told me that something was very wrong because her words were not making sense and she could not walk. He was right. Neurologically, she was very altered. It was the scariest thing I have ever seen. We raced her to the hospital, about 7 minutes away. While in the car, she was rambling on, making no sense at all. I was terrified. At one point, I kind of grabbed her shoulders to snap her out of it and asked her if she was okay. She stopped, looked me square in the eye (which she also had not been able to do) and said "Yeah Mom, I'm okay. When God and Jesus are right there, you know you are okay". My heart sunk. That was the exact moment I knew my baby was going to die.

Okay...... I need a small break as I can feel that same old anxiety coming in. I will finish this story soon, but for now need to sit back and reflect and chill out. Be back soon.

Heidi LaMeyer 

In loving Memory of These Beautiful Souls

Annie Bahneman~ Age 7~ Minnesota
Blake Driggers~ Age 8~ South Carolina
Christian Strickland~ Age 9~ Virginia
Courtney Nash~ Age 16~ Florida
Dalton Counts~ Age 9~Oklahoma
Elizabeth Simms Hollingsworth~ Age 10~ So. Carolina
Hailee Marie LaMeyer ~ Age 11~ Minnesota
Jack Ariola Erenberg~ Age 9~ Minnesota
Jeff Rosenthal~ Age 19~ Florida
John "Jack" Herrera~ Age 12~ Texas
Marissa Claire Cook-Norris~ Age 7~ South Carolina
Mark Kincade~ Age 27~ Texas
Mason Faubel~ Age 6~ Minnesota
Phillip Gompf~ Age 9~ Florida
Waylon Able~ Age 30~ Indiana
Will Matthews~ Age 14~ Louisiana
William Steven Sellars~ Age 11~ Florida
Zachary Reyna~ Age 12~ Florida