I feel like that’s all I do some days.
Wait for energy to descend upon me like a magical glove from heaven. Wait for the fax machine to ring announcing Kendall’s labs are done. Waiting for a doctor to call back with a plan. Waiting for Kendall to feel better. Waiting for a break to come.
Yesterday we were waiting for Kendall’s lab results. They should have come in around noon. They were dropped off at the lab around 9:45 am and ordered “stat”. We knew we needed the info to make an informed decision about what or where or how to help Kendall. See, she’s been “anemic” for a while now. Most chronically ill children/kids on TPN are anemic to some degree. It’s just par for the course. Kendall’s body has mostly learned to adapt to this anemia, and she has her own set of “normal” ranges. In December she all of a sudden started lowering that range – likely due to all the infections she fought last fall, as well as the blood thinning medication she was on for her DVT (blood clot in her chest). She was actually kind of iffy for whether or not she would tolerate Disney without dropping her counts further – but by the grace of God, she managed to stay stable that whole time. After we returned from Disney though, she did start to slowly drop again.
My belief is that her hospital stay in early february with the tachycardia was her body’s way of trying to compensate for the lowered counts – except that her counts weren’t super low at that time. But her body eventually found it’s rhythm as it compensated and adjusted to a lower blood count than it’s previous low normal. After last week’s hospital stay, her numbers had dropped even further, but symptom-wise, she was still hanging in there. Anemia symptoms include things like an elevated (fast) heart rate, paleness, shortness of breath, tiredness/increased sleeping, grumpiness – you know – pretty much standard preschooler behavior! Kendall “acted” more anemic in early february, but her numbers didn’t show it. Now her numbers show it – but her body is compensating.
the question becomes “compensating at what cost”? How long can her body last at these lowered numbers? (last time her hemoglobin was this low she was getting a transfusion – but she had also just been pretty sick, and was younger/had less reserves than she does now). How hard is her heart working right now to try to keep oxygenated blood flowing to all the important organs? How is her body deciding what is important and what isn’t? Will she just crash suddenly or will she continue to slowly decrease until someone decides enough is enough? I don’t know the answers to these questions. That’s why I anxiously wait for her labs to come, to tell me via some numbers on a page how her body is handling the stress.
At some point, her team in milwaukee will have to decide that the enteral iron (liquid iron we give into her gut, where iron is absorbed in our bodies. Iron is the building blocks of red blood cells, red blood cells indicate your body’s level of anemia or not.) is not helping the matter, and decide whether it is time to order a blood transfusion for Kendall, or start doing IV iron infusions. Transfusions obviously come with their own set of risks, but would be “an easy fix” for Kendall’s issues right now. Iron Infusions can cause some crazy reactions in the body, because you are forcing iron into the bloodstream when it is typically a process that your gut does for you. You have to have your first one or two iron infusions (typically) in a hospital setting/infusion clinic where you can be monitored for reactions and treated appropriately – but thereafter there is some “proof” that adding a small amount of iron to the TPN (Kendall’s IV nutrition) would help boost the ferritin levels enough that the bone marrow could continue producing adequate levels of hemoglobin on it’s own, without the need for transfusion.
I don’t know what is the right answer for Kendall right now – that’s why I am depending on, WAITING on, her team in Milwaukee (GI, complex care, hematology) to make a decision about what we do for Kendall. Apparently, however, as I’ve been assuming they were seeing all of these drops over the past couple weeks that I have been seeing (they get the same labs faxed to them every other week) – they have NOT actually been seeing them. They have a new records system in place up there, and as I just found out last night – labs from outside hospitals are taking weeks to MONTHS to be entered into the system. And since I am not the mom to be calling them week after week to ask for help, they have assumed “no news is good news”. when I found this information out, I was disheartened. Frustrated. Disappointed. Sad for my baby girl, who has continued to deal with more and more crappiness every week as she drops lower and lower, waiting for her doctors to say enough is enough let’s help her. My faith has been blown. I know it’s no one’s “fault” – but still – I feel like I found out that when I thought I was swimming towards a rescue vessel. it was just an illusion, and I’m left treading water in the ocean keeping kendall afloat all on my own.
It is some days so very hard to play doctor at home. As much as I joke about her room being a hospital room – the truth is, I just don’t know some days. Most days. While I want to assume that for the most part things are going ok in her body – she can pull some crazy stuff. It leaves me (and her nurses) all scratching our heads going – is this autonomic and will straighten itself out? Is this because her kidneys aren’t functioning? Is this her heart? Is this her anemia? Is this all of the above? Is it time to take her in? Let her keep riding it out? It is getting old. and hard. and tiring. For the most part – you see pictures of Kendall smiling. And for the most part, Kendall is always smiling. But she’s tired. Her body is tired. It is working very very hard to find any kind of balance. She takes four hour naps most days, and some days would sleep even longer than that if we let her. She is wearing oxygen every time she goes to bed – nap and night time – in an effort to ease the work her heart is doing. She is complaining more of pain, and dizziness and just overall “hurting”. She asks me “when i feel better momma? I don’t know wrong wiff me.” It just breaks my mommy heart to see her like this – trying bravely to keep her smile on, to keep pushing on through life, because it’s all she knows how to do. keep moving forward.
But I want it to be fixed. I want to take her to milwaukee and show them my baby who is so pale she could make a vampire seem nicely tanned and show them the bruises up and down her legs and arms and make them watch her walk holding onto walls so she doesn’t fall down from being “soooo dizzzzyyyy momma!!!!” and show them how she used to get up off the couch and dance with her sisters and now she lasts for about ten seconds before she crawls back up on the couch and just watches them. I don’t let myself stop and see these things because they hurt too bad to see – so we all keep moving forward and acting as if everything is ok and we’ll all be ok and everything will eventually fix itself if we all just keep moving forward.
I’m so tired though.
Tired of being the only one here seeing this, making decisions on my own, being the enforcer on my own, keeping a running log of lab numbers and symptoms and differential diagnoses for every crazy thing kendall does in my head on my own. Tired of being the one whined to, cried to, needing comforted because the other three are sick too, and have problems too, and don’t understand this week’s multiplication homework and need this paper signed or that dance costume sewed or they don’t like what I made for dinner. Which, admittedly, is not anything great. But I’m just so tired. I’m tired beyond physical sleep. I’m emotionally tired, mentally tired, spiritually tired.
I yelled at Karissa last nite. And I mean YELLED. I was that mom outside of Target berating her daughter for dropping ice cream. you hear me? i yelled at my child because she dropped my ice cream. My one treat – one good thing to look forward to on an otherwise crappy day – and karissa dropped it all over the sidewalk because she was trying to hop from rock to rock and wasn’t paying attention. I made my baby boog cry the whole way home because I crushed her spirit. Because my spirit feels crushed. I stayed awake thinking about this for hours. I went in and laid with her and told her how much I loved her and I was sorry but I cannot take back those words or that tone of my voice. I have no sense of who I am anymore really. I am just a person who gets her kids from point A to point B, wears the same sweatpants every day, watches her child get sicker every day, feels more and more useless every day.
This weekend Ben is going to help his mom move from Texas to our home. I am glad the girls will be able to see their Nana, will be glad for the extra help every day, glad we can help her out in this way. We have a space in the basement that we were able to turn into a bedroom of sorts for her. I wish we had a real bedroom for her. I wonder how this will change the logistics and dynamics of our weeks. I already have had to give up my home, my alone time, to share our space with the nurses who help keep Kendall at home every week. I wonder how much more that will change adding another adult full time here. I think “will i ever find myself again, in the chaos?” People try to say the right things and do the right things and we could not survive without those good friends. I’m rambling because I am finding it hard to get my feelings out of my fingertips right now.
Somewhere inside is me. The me I used to be. The me that used to be a good mom, a good wife, a good person. I want to find her again. I’m waiting to figure out how.
But I think it starts with this. A verse I read the other night after seeing my brother’s facebook post instructing us to do so.
Psalm 29 – “God gives his people strength. God gives his people peace.”
And so I wait more. For strength and peace to come.
And i know they will.
I just have to wait.