waiting.

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.

 

t.

Bring Your own cheese.

Cause we got a whole lotta whining about to get down in here.

First of all – I feel horrible. Let me just whine about my sinuses, ears, eyes, nose, throat and head for a few seconds. I went to bed last night feeling ok, woke up this morning feeling like a truck ran me over. That truck may or may not have been kaylen crawling into bed with me and then hacking up her germs on me all night long. Ben is once again gone on a week long business trip, so there’s no rest for the weary here. (Yes this is all just purely whine, don’t judge!)

The girls came home from school yesterday and kaylen was in tears from how bad she felt, and karissa was about a step and a half behind that. Loaded everyone up on vitamin C and ibuprofen, and they had definitely perked up a little bit. (Oh and a CFA milkshake. Because it was Milkshake Monday, duh. And CFA milkshakes fix a LOT of problems.) Karissa never really had a fever, and seemed improved this morning, so I sent her off to school with Kealey. I’m still debating over Kaylen – who hasn’t had a fever through the ibuprofen so far, and is looking ok. Thinking I still won’t risk it – but not sure I can convince her to lay down with me later and take a nap (which is really all I feel like doing!)

IMG_0104

Kendall made it up and out the door to school with her nurse – but complained all morning about her throat (which isnt actually her throat, but usually more often means that she’s very nauseated, because she has this gaggy little retch-cough that she does with it). She actually asked me this morning in her groggy little voice “mommy, when I gonna feel better? I just want to feel better!”

Stab my heart.

I know she has felt like absolute poop for a few weeks now – between being sick with regular winter stuff, the raging UTI from a couple weeks ago, and being super anemic (low blood counts to overgeneralize it), i cannot fathom how the kid even wants to get out of bed in the morning.  But that’s Kendall. That’s why she’s my hero. I can personally barely function with a touch of a virus, but there she is smiling, asking to go downstairs and see sissies, and learning how to voice request “little mermaid disney world ride” on YouTube. She seriously watches this video of the Little Mermaid ride at WDW over and over and over again. Freaks out over Ursula every. single. time. and wants me to explain why King Triton is holding a triton at the end every. single. time.

(Don’t worry – Cinderella is still the fave – but Belle and Ariel are starting to creep in. Variety is sometimes nice!)

Other than that – we’ve just been here. Surviving. Getting some snow (FINALLY!!!!) I’m a huge fan of a good old fashioned snowstorm. When my family is all home together. We haven’t had any all winter –then got two good ones in one week! In March no less…

I feel like my weeks as of late have been full of just “blah”… the dreariness of doing the same thing over and over and over again – always cold, always feeling just slightly under the weather, always exhausted, always running around with kids or cleaning up after kids or chasing down doctors for kids.  There are always more bills to be paid (just got another stack of medical bills in the mail today – not helping my mood at all!), more things to clean up, more laundry piling up – and never enough me to go around to everything. (I’m purely just whining at this point – i know everyone goes through this, our situation is not unique, i’m not looking for sympathy – just purely venting!) i am tired of feeling tired and worn down and like i will never get out of this hole I feel stuck in. Tired of the gray hairs that cropped up overnight during last week’s logitical nightmare with the party/hospital stay craziness. Tired of making excuses for my own poor eating/health habits. Tired of not having nearly enough energy to make any kind of changes to the above.

thank God for a few very good friends who can deal with my blahness and whininess and pull me out of my funk for a few hours at least. Thank God for the hundreds(? – it seemed like it was that many!) of you who helped make Kealey’s party a success. I seriously could not have done it without you! (And also I have bags and video games and tupperwares that need to be returned! contact me to claim yours today!) You are all the reason I have not fully resorted to rocking in the corner sucking my thumb. Seriously. I cannot even begin to tell you thanks – your notes, messages, help with everything i’ve needed help with, prayers – they all help me function.

Karissa had her followup ortho appointment yesterday – the one where we found out how many thousands of dollars her jacked up teeth are going to cost us. She is going to need three phases of treatment. The first involves an expander. I can hardly type or think of that word without cringing. I’m sure some of you have dealt with these nastified things before. I personally do not know how i am going to do it. supposedly we are supposed to adjust it every night? Hers is going to be more like every weekend, when Ben is home to do it. I can drop an NG, drain intestinal contents, catheterize, and beat mucus out of lungs. But I draw the line at twisting a metal appliance in my child’s mouth meant to stretch her bones out. Nope. Not gonna happen. I about fell off my chair with how bad i was cringing at the doctors description of all this. I do not do teeth. I don’t do them in myself and i certainly don’t feel like subjecting my child to that torture. You know that part in Princess Bride where they hook Wesley up to the sucking machine? That’s how i feel about this torture device they want to put in Karissa’s mouth. She will have to wear it with a facemask at night for at least one year. She has to have two baby teeth yanked, neither of which has an adult tooth behind it. (We share this dental disease – missing adult teeth. I’m just smart and never went to the dentist to have them tell me my teeth were in the wrong place.) The tech was like “this isn’t painful, it’s just pressure”. I was all “that’s exactly what childbirth is, but they still give you an epidural if you cry hard enough for one.”

So we get to start THAT fun merry-go-round of MORE appointments some time next month.

And last but not least – Kendall’s anemia. Kendall has had “anemia” her whole life – in the sense that her hemoglobin and hematocrit (measurements of the red blood cells in your blood, the ones that carry oxygen throughout your body) are always low (below the limits that the lab considers a “normal” range for someone Kendall’s age). She has needed transfusions before, but typically only when she is septic and her body is chewing through blood faster than she can produce it. You remember her early February hospitalization? For the high heartrates we could not control? That was due to the anemia. Except at that point, her lab numbers were still in the “too high for a transfusion” range. Now that she’s dropped a couple points past THAT low, her body is not giving us the red flags that it had been – it is yet another kendallism. She is obviously not feeling very good at all (totally expected with her crappy counts), and is very tired most of the time. Her body would be doing TONS better with a blood transfusion right now – but unless we go camp out at the hospital, there’s no good way to do this. She had dropped again last week, but held on all weekend (as far as her vitals go – her body is in a hugely compensatory mode – but it IS compensating, which is a good thing). Tomorrow morning we will pull more labs and hopefully have the results by the afternoon so we can make a decision either way.

We know she has a mixture of iron-deficient anemia (iron/ferritin being the building blocks for red blood cells, and most of us get iron via the foods we eat as they are broken down in our stomachs. Not having a reliable stomach-breaking-down-ability combined with not eating a whole lot of anything of substance doesn’t make for a very high ferritin count), along with anemia of chronic disease. She has been receiving oral iron supplementation (it goes into her tubes) for a couple months now – but it is very hard on her GI tract and we have had to stop it in the past due to it causing GI bleeds. Her body HAS been doing a good job of keeping her iron stores up, keeping her counts up, compensating in every way possible. But it’s getting worn out now. I do believe that it CAN bring itself back up – but it’s going to need a boost of some kind. It is unlikely to come up on it’s own anytime soon, which leads us to needing to do an iron infusion (IV iron) as a very likely solution. Some people rely on iron infusions for a few months/years – Kendall may only need one or two to give her that boost back up that she needs. That’s my best case scenario hope at least.
I am not sure what the timing of such a thing would be. Iron Infusions need to be done at the hospital until there is proof that they are well tolerated. Ben is in some warm southern state this week, and will be leaving a few hours after he gets home again to drive to Texas to help his mom move up here. Leaving me trying to juggle kids and schedules again if we need to drive up north (why does he get to go south to warmth and I get to go north to coldness???) Anyways – let’s just all hope and pray and sing kum-ba-yah in an effort to ignore the possibility that we might need to go up there anytime soon.

daily attitude Ok I think that is about as much whining as i can stand from myself for one day.
Sorry i’ve been gone for so long. I really do miss blogging when i go on these hiatuses –b ut some days i just don’t know how to say what i’m feeling, without just absolutely hating how whiney it all sounds. Warm weather is coming though right? And at the end of the day, it’s all about the CHOICE to change your attitude, and change your life. I know I’ve got a lot of changing to do.
Hopefully there’s some great news next time I update!

Thank you again, all of you –for reading, messaging, commenting, praying – in general – thanks for being my friend.

Love and hugs~

T.

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