Today is one of the hardest days of the year for me. So for this post I am going to add an additional trigger warning. This talks about a child who passed away. If you can not handle that please take a look at some of the other writings I have. This is part of who i am though, and a big part. Also many of the triggers for my ptsd have been written down. This child is my role model. There will be memories of the worst moments, however there will also be stories about this little warrior that are good.
March 5,2017 I lost my daughter at the age of 4. No one knows what she had. It presented like aplastic anemia but in that the blood cells are ragged and break up. Her blood cells just would not mature. We fought for several years with this little girl to keep her in our arms. We failed at 1:13am. Since just after her first birthday she was in the children’s hospital more often then not. The longest stay was the first stay. It was several months. They did tests which thankfully I was able to be in contact with her so she never felt alone. My biggest fear was that she would blame me for what the drs were doing to try and save her life.
We had team after team of specialists try and figure things out. Her pediatrician; who was also mine as a kid, has practice rights at this children’s hospital. We could not have a better dr as lead in her care. He deals with the hard cases, the cases that tear drs apart. His patients are his children. in his office the walls are covered with photos of most of the kids he has ever treated and he can probably tell you how most of them are as well as what they do work wise. In his personal office is his wall of angels. The patients he has lost. He is one of those rare drs who will fight just as hard as the parents and will not give up. He is asked for help often from many other drs with hard patients. My daughter’s photo now sits on that wall.
She was never diagnosed so she was medically NYD not yet diagnosed). She had fluid build up all over her body. Needed blood transfusions almost every day by the third year. She had no immune system at all because of whatever was making her body do this. She had symptoms that would contradict each other.
She needed platelets the most often and they are the ones that help you clot. So she always bruised up for no reason at times. There were days when the shortage of platelets caused delays in patients who needed them because they needed to triage them to see who had better odds and needed them more. Platelets are the one blood cell that is often in shortage. Once a woman becomes pregnant even if she does not know there is a component to their platelets that causes rejection. You can go in and donate just platelets and you can donate more often. I urge every able bodied male who can donate to do so. You are needed badly.
There is an issue with getting so many transfusions. The risk factor of a reaction. This is why blood type and match and screen only lasts a few days. Every transfusion, does not matter if it is platelets, whole blood etc, the risk of having a reaction increases. So think about this with how often she needed platelets alone. Every few days she would need whole blood as well as her hemoglobin would be to low. There were days where her body would burn through the platelets that they went critical low in hours. I can not recall the reason they would not do two platelet infusions in a day.
During this time even her pediatrician would not give me crap for being a smoker at the time. Would actually encourage me and showed me a place away from a major city transportation station for buses and trains. So I would not get hassled and could just breathe. These were the only times I would leave her side. I will never forget the day I came back and seen that green soaker pad under her filled with a pool of blood. She had developed a gi bleed somewhere low down. I will never forget what that room looked like, smelled like, no detail will ever be forgotten. I called out and the nurses got the night team to come up. Now this is also a teaching school so at night you would see senior residents those about to become fully fledged and trained Doctors most of the time. The unit we were on was for patients who were called frequent fliers. So every nurse knew me after all we had only gotten the odd stay at home for a few days before we would have to go back. The reason they are called frequent fliers is because the patients would keep returning. This helps keep care consistently and you never mention the name of a patient who has been discharged who is a frequent flier. It became a bit of a superstition.
So we have these drs technicality come up and they asses. I am standing there holding my little girl. At this point terror and fear does not hit me. I did not know it was because of the ASD then as I was not diagnosed. In crisis I can push back my emotions and do what needs to be done. It’s after when those feelings hit me. They were taking to long and we were right across the nurses station and there was no nurse in room even monitoring. I poke my head out and I have two choices, yank the call bell or go and make a demand for the code team. Anyone decides this is needed even parents can cause this code to be called.
Why did I only have two choices? Those residents and students who by that time there were half dozen of them. They were searching for what to do on their PHONES, texting others I do not know nor do I care to know. Now being a front line responder I have that voice that can carry without being loud and gets people’s attention (think drill Sargent). I also have one hell of a medical background and during that entire time we were fighting I was reading medical journals, researching etc. I had one patient and they had several was my reasoning, so I could focus just on her. I also think it helped keep me together. More on that later.
I tear into these student’s and residents and the charge nurse who knew me well enough as did all the others, that I am not a parent who sits by and prays. I look to the charge nurse and ask why there has not been a RAP code called. The nurses I do not blame. They took great care of my daughter. She just hung her head, she was lead nurse on that unit. I demanded a RAP code to be called. Why do I mention the call bell as an option that night? In this hospital at least, if you pull it from where it is plugged in you get a similar response as a RAP just bigger scale.
The code get’s called. You get people from each major specialty from the PICU or ICU depending on which unit is called out with the code. They rotate the staff in the various ICUs who are on these calls staying within that specific unit’s staff. They got there fast. They tried to get me to leave the room. That was not going to happen. I spell out my own back ground and that I know when to move so piss off. I think I might have made them a bit nervous as this is not a common thing. I stayed with one hand on my daughter at all times while they assessed. This lead to the PICU, the first stay there. Her pediatrician and the PICU drs do not get along the best to say the least. This dr didn’t sugar coat anything. Blunt and to the point. He also didn’t tolerate fuck ups. We were always in our own room even in the PICU this was due to the lack of immune system. The common cold could kill her within hours type of no immune system. So we also got the special pressure rooms. Now by this point my daughter had deveoped a terror of Xrays and would wet herself so bad that there was usually a mess to clean up even if she was in a fresh diaper. So the usual standard is to do an x-ray. I asserted my right to ask why this was needed, if it was just normal routine or if there was a reason. There was no reason so I told them to piss off with it. If HER primary dr decided she needed one then we would do so not a moment before. We were there a couple weeks.
One of the nurses in there was a special nurse. She brought in a fairy wand and a few other princess type things you can find at the dollar store. We would always get my daughter up despite all the extra lines at the time going and let her be in her chair. Now she was delayed with her speech but she got her point across. Before her first admission she was walking. By this point she was unable to do so. She would however refuse to stay in that bed all the time. I got a photo of her all dressed up and giggling in that chair in the PICU. It is a fond memory, yes sad but a good memory and you have to take those moments and hold onto them. A couple of the PICU nurses ended up banded from being part of her care team. That is the problem with having a mother with a medical background, she kinda watches what you do and if you argue with a call out it does not go well. Like with the first one where a new IV line was being set up as they have to change the tubing every so often. Part of this line landed in the garbage and the nurse just pulled it up finished what she was doing. I was waiting till she got to the bed. I wanted her to look me in the eye and explain why in the hell she would use a compromised line that had been in the garbage oh boy did she argue that it did not happen. The dr ended up coming in and telling a second nurse to use a different line if there was even the smallest chance it was contaminated. I told the dr that this nurse was not welcome to be part of my daughter’s care team. This is a big thing and well within the rights of the patient or guardian. Besides that my little girl had those nurses trained that Frozen and then eventually Trolls had to be restarted the moment it went to credits even in her sleep because she would wake up. She didn’t speak but it was loud and clear and made most of us smile especially when she would giggle at her favorite parts or gesture for what she wanted. You could not help but look at this kid and go holy fuck that kid is strong.
There are many good and bad memories, eventually (maybe a few months) into the journey her primary care dr had it written in her chart that if mom says something they are to act as if it was coming from him. We were often on the same path for her care and educated guesses into what might be going on. Sometimes I would bring up something he didn’t think of…. i had more time to focus on just my girl not many others… for awhile a gluten free diet seemed to slow the blood cell count crashes. It did not stick. You see this dr, he listens to the mother especially because of our instincts even if we don’t know what is wrong if we say something is wrong it is as far as he was concerned and to this date I have never heard of that not being the case. Smart man uses all his tools in that dr bag including the patient and guardian. He also knows how to say I do not know.
This little girl could go through some of the most painful tests such as bone marrow testing. Which was done in both hips each time. It gives a more clear view of what is going on and some gets sent off to a genetics place. She even stumped them! She would wake up from sedation and we fast learned if she wanted a drink of something other then water then her tummy was ready same with food. It never took long for that one to kick in. The way this girl bounced back from sedation was something else. She would want her mom and no one else for a bit and then once she was feeling secure again she would interact and laugh and just make everyone smile. She took every single thing thrust her way and told it to fuck off and savored every moment of life.
We had at one point needed two heart surgeries because she was starting to displace fluid there. This was one of the … there are no words… the first time it was just a small drain with basically a catheter to a tiny bulb. This little girl got back to her unit after all the extra monitoring and stuff. By then I am known well enough even by security that I was either your best friend or your worst nightmare. I am that quiet one that people underestimate way to often. This little girl by this point had taught herself how to walk again twice, pushing through some major pain. She was one determined little fighter. She would walk around with that little drain bottle and play. The second heart surgery though was one of the top scariest moments.
You see when she came out of the anesthetic she was not as perky. The light not as bright in her eyes. She was loosing that spark in her that drove her to amazing things in that hospital. The nurses would also know when she was mad though often from a few units away. My kid was a ginger lol. We were all scared because that fight inside her was so muted.
Then her dr cleared the therapy dogs to come in as long as she was first. Kaya was a golden labradoodle, she worked magic that day. It took a bit of coaxing from the dog but eventually she had my daughter laughing and that spark back. It was then that it was decided no matter what when these dogs were doing rounds she would be the first stop. We have photos of her with so many stuffed animals it was hard to find her in the bed with these larger dogs that were so patient both her and the dog wearing those hair nets, and the dog was covered in bandaids. She would laugh when the dog would use the puzzle toy were they have to figure out how to get the treats. Her glee when they did was contagious. It wasn’t long before we had the nurses poking their head in to see those smiles and her being a kid.
We went through hell and that little girl did not give up, she was going to beat this. Eventually her numbers seemed to start improving however it was never enough for safety. It was time to look for bone marrow donors. We could not find a match in the months and months we searched.
We were at a point though that for a bit we were home and she could go into the day unit for transfusions. They monitor close for reactions but these reactions can occur up to 72 hours later if I recal right. The rule was any rise in her baseline body temp which was to be taken every four hours and it was ER for broad-spectrum antibiotics. We could not wait and see if it would go down on her own. Time was always against us because there was a very small window were it would work, we never waited in the waiting room is the level she was triaged at when arriving.
I recall the way her big brother would bow to her whims despite nearly ten years between them. He would play tea parties with her, he would even wear the extra pair of fairy wings. When we could go outside in the winter he would do anything to get her to laugh and play. She would ride him like a pony and he would go into her castle that she got that could be colored. Things a ten year old boy typically would not do even for his sister. He was amazing with her and they were very close.
She loved dressing up as a fairy, you would even find her doing that in the hospital. I have a photo of her pediatrician bending down to put one shoe on her foot because she was dressing up like Anna (not sure on the spelling but the sister in Frozen) a costume sent by a very special woman in the states that would send little surprises like that. Even a tablet because my kid did not focus on how sick she was, she wanted to be treated like everyone else and even get in trouble like any other kid. She wanted to learn and she did. To this day on the facebook page i created for her journey I get messages saying her story gives them hope. It is a page similar to this section of the website.
The nurses on quieter days would go and hunt down this push car and take her all around the unit as long as she kept the mask on. She did not let anything take her down not even pain and there were times where the pain she was in would make anyone sob. There are many good memories in this walk through hell. I can now look at them and not want to scream in pain that hits my heart. She had her grandpa wrapped around her finger and then some. We had issues getting her to eat, and who can blame her with hospital food. So when she wanted grapes, he got her grapes real fast, if she wanted a smoothie she got that real fast. There was a special bond between my daughter and my father, one that I think helped her get through some tough things. He would be able to brighten her day just by walking into the room. Her grandmother, my mother, in the three years of this battle where we were walking the line of life or death only visited three times. My dad would rarely miss a day coming in to see her. My aunt and uncle who are my god parents would come in and visit with her often bringing a toy. She did not want for toys that is for sure. You see at this hospital even when you get blood drawn you get to pick something from the treasure chest. Every few months there would be the blankets hand made by grandmothers and donated for the kids. She had quite a few of those. She was very well behaved. Though when one senior resident taught her how to use a syringe as a water pistol we all learned to look first before going into the room cause she had good aim.
March 4 2017 she spiked a fever late afternoon. She had a transfusion that morning. She was having a reaction. Let me tell you this, when you go to a trauma bay instead of a regular room terror grips you. They actually had to get the triage nurse from the adult side to come and assess me and a dr to get me some ativan. I was scared but it was hard to tell that. That was the day I got diagnosed with PTSD because they had someone often coming over from the adult side to assess me just so they could get me the meds I needed if I needed them. I had left home without my medications I was in such a rush. She was going jaundiced. There were no beds in the PICU so we had RAP team down quite a bit. Now this seemed pretty routine if a little more intense so her dad went to go and take a nap. To this day he regrets that choice. While she rested I snapped a photo of her, I did not know this would be the last photo taken.
TRIGGER WARNING THIS TALKS OF HER LAST FEW HOURS
A bed opened in PICU finally, they knew me by then so I got to go with. This little girl even then did not want to pee in the diaper so they had to go and get a commode for her. She went potty and was so happy, I helped her get cleaned up and went to help her stand because she was very unstable but determined. Just as I got that pull up pulled up she dropped in my arms. Just went limp. I will forever recall all that they did. I will forever recall them trying and trying to get ahold of her father. They couldn’t in time. Her organs were shutting down. A reaction to the transfusion. Had I been paying attention in the trauma bay I would have noticed a few people were not wearing isolation gear like they were supposed to when going to her. I did not recall this for a bit. I went to the head of the bed where I really had to squeeze in and would sing to her. I also talked to her. At one point I stepped away cause I needed kleenex. That was when I noticed that the other patients had been transfered to the connecting PICU section created just for things like this, that was when I felt that heavy hand on my shoulder and looked at the dr “she is trying to die and the one thing that could save her will kill her”. I handed the charge nurse a list of people to call. I had prepared it near the start. We were doing so well, we had been home for our longest stretch. We were not fully out of the woods but everyone thought we had her stable enough that we had time to find a donor. I went to the head of her bed and said the hardest thing I have ever had to say and till now have never told anyone about. “my little warrior, my apisci waposos (my little bunny in english), I know your are in pain and have fought so hard. I want you to stay so bad and I hurt seeing you like this. However this is your choice. I will understand if you want to go, if you want to leave the pain behind. I don’t want you to but I get it.” That was when I felt her leave. I still held onto hope wanting that feeling to not be true. Eventually I went to stand by the dr and asked the charge nurse to make the calls. They were the people who would come to support me the fastest. I will never forget calling my dad and telling him while he was in the states. This broke his heart that he wasn’t here. I managed to make a couple more calls. To this day that is a very vivid memory every time my phone rings or I go to make a call. I rarely talk on the phone anymore. Eventually it was time to call it. The scream done on tv and the drop that a mother does. That has nothing on how you truely react, how gut wrenching that scream is for those who hear it. I needed them to detach everything even the breathing tube from her. I couldn’t see her like that. They argued that she would bleed with them taking it out. That was when her Dr walked in and told them to take it out. He sat next to me and helped me wrap her in her favorite blanket and just hold her. My godparents arrived next, and knowing my uncle he probably made a new land speed record to get there. I am greatful my aunt took a photo of my daughter in my arms that day even if I have not been able to look at it yet. Somehow my big brother got wind, he stayed separate from our maternal side as much as I did so how he found out is beyond me he arrived with my cousin who had helped me get through the worst test my daughter had to go through. She sadly knew what was needed because she had lost her own sister in a long medical battle. My daughter’s dr asked to hold her, my brother suggested that I let him and we should step outside. I have no clue how I got out there with how weak my legs are. He is a well built guy so probably half carried me. He held me while I had the entire pack of smokes that he had brought for me, by this time menthol was no longer sold in Canada so how he got them is beyond me. He is the one who told me much later how many smokes I had. Then the need to see to something with my daughter came over me and I HAD to go back in. Her dr was crying and still holding my daughter. He had been on vacation so how he got there so fast is a mystery. I had a priest give last rights, I no longer considered myself Roman Catholic but I was firm that it would be her choice of what faith she would follow. This granted many of my family members peace of mind. My kid sister, the next oldest, she arrived with her boyfriend. That was the day in my mind he became family. He made sure everyone had water and was drinking it. He went for whatever was needed. Her dad arrived and was grieving…. all these memories I know are slightly off in the time line however I recall every detail in all five sense. I recall asking for a basin and some water with cloths. I was following my mother’s lead who knew a bit about Cree traditions. I planned to learn more when my daughter got better. I kept that promise to her. Apparently the family washes and cares for the individual who has passed away. That was what my heart was screaming for me to do anyway. This little girl would make some big messes but she hated being dirty. So she got clean everything. It was hours before anyone could get me to leave, surprise it was my big brother. No one else could get near me. I consented to an autopsy because she loved helping others and if answers could be found I needed them to and maybe another needed those answers. As we left we ran into my son who’s paternal grandparents brought. Obviously he could get close to me as well. When I should have been comforting him that young man was comforting me. He did the same at the funeral.
It was the common cold that took my daughter. Specifically the Rhino Virus strain (spelling may be off). That was the primary cause the secondary was the reaction to the blood she had gotten early the morning before.
When we finally got to my home though, the happiest (possible in that nightmare) was this path through the fresh snow. My girl loved rabbits and had a special connection to them. The path lead right to her bedroom window. Just the one path and there were bunnies all over. I will never forget that. It is bitter sweet yes but every time I see a bunny now I think of her and it is a comfort to many of us who knew her even those who did not meet her personally.
When we got back to my place I curled up in my brother’s lap and just crashed. I blocked the whole world out and slept. How he managed to not have to go to the bathroom until I woke up from this shut down my mind did to protect me I have no clue. I was usually the rock for everyone, and rarely did I have a rock myself. He was mine.
I found out about a month later that there was an image caught of the northern lights where it looked like pink was touching the earth and was a path to this great big castle even better then the Disney land one with the doors open. At the castle the lights start to shift to green. To me this is massive. That is were our spirits go when we leave this world, the northern lights are a version of heaven. So to this day that image is seared into my brain and I feel honored to have gotten to see it.
I choose to recall the good, but with ptsd the bad always comes as well. It feels good to get it out. So for those of you who could make it this far thank you so much. This day is always brutal for me. I wish that her story had a better ending but because of how that girl always managed to stay in good spirits (most of the time lol she was a kid after all) no matter how bad things were or how yucky she felt. This is why she is my role model. If she could get through that, there is not much a person can not get through. The pain of losing a child never lessens, it will sneak up randomly and sucker punch you as if it was the very same day the child passed. You just learn to carry that grief. It is not the way the world is supposed to work. So the pain doesn’t decrease. However as you learn to carry that pain you learn and recall the good memories more often and each time with less tears. I will tell you this. It took me hours to get through this post to type it up. It helped me get through part of the hardest day of the year for me. Thank you to those who shared in this pain. For the other people who have lost a child. I will never understand your pain but I can comprehend it. You are not alone. Feel free to reach out even to me a stranger on the internet spilling their guts out in a blog. I have two ears and can listen, sometimes that is the thing that helps the most, so if you need, then I am here. To everyone, remember this little girl who fought like hell, through pain I can’t imagine, who kept reteaching herself how to walk, would smile through almost anything and be the brightness in the darkness. If she can do this at the age of 4, so can you. Her story ends in sadness and agony however even today her story inspires people and helps them. When I am helping someone or feel like that, I can handle things better. I am a healer at the core. Tomorrow the posts should be better for awhile.
Who am I? 
I would love to hear from you!