I need a lot of them right now.
Like the little zit that is right on the edge of my nostril. It’s super annoying. And yet focusing on destroying it and its annoyingness is a good distraction from having to think about REAL LIFE.
Cause let’s be honest, it’s been a pretty crappy week in real life.
Have you ever had one of those? A week where you just thought, ok it can’t get ANY worse than this – except that was only on Tuesday and you still have five more days of getting-worse-ness to live through? Yeah, that’s been this week. Go get your coffee or a nice large coke from McD’s (still only one dolla!!!) and settle in for a nice long review of “My Week”.
It started out ok enough I guess last Sunday – had a CRAZY time in Kidstown with all those kids, and then a nice relaxing Sunday afternoon. We actually wanted to be social, but by the time I am leaving church on most Sundays, it’s a virtual ghosttown. So we just had a nice family cookout.
Monday was an ok day also, although I found out our darling Monday nite babysitter (and effectively, every other babysitter I could ever hope to use from our church) can no longer work on Monday nites!!!! I have MEETINGS on about 3 out of every 4 Mondays – and Ben is typically gone most Mondays also. Not good. And if I thought that THAT fact wanted to make me whine, boy did I have another world of think coming…I should have known things were headed south when our darling dietician for Kendall came (on her day off) Tuesday JUST to see what her weight was doing since she’s been having such a hard time. Sure enough, she was down 3 ounces from last week, which puts her at –1 ounce from her weight 7 weeks ago. (and I would just like to interject here God, can’t you PLEASE switch my metabolism with Kendall’s!?!?!? PLEEEAAAASSSEEE??????????) Anyways – my moods are definitely up and down based on Kendall’s weight checks – always have been. I hate that it has to work that way, but for now, I don’t have the oomph to try to lift myself out of this rut. Her dietician and I talked for a good while about what other options were out there, and combined with some of Kendall’s other medical oddities over the past two weeks of having this bug (puking bile out her tube, odd colored/consistency stools, more bloody mucus, dark urine) – she agreed that it most likely was starting to affect her internal organs and processes. We were clearly seeing signs of her liver and kidneys all trying to work pretty hard to keep her stabilized, and all of that work was just wearing her out. Where she typically will last almost a whole therapy session (about 45 minutes), she pooped out after about 20 minutes these past few weeks. Obviously, our much touted trial of the new formula with medium chain fats was not the big hit we all hoped/expected it would be. So I put the call in to her GI to see what the next step was going to be.
Luckily, Tuesday was mostly redeemed by an awesomely super fun dinner with some good friends at one of my favorite restaurants ever. I can hardly believe the amount of good food that we consumed. It was just what I needed – lots of laughing, lots of food – what more can you ask for?
but Wednesday morning came right back with reality. Speech therapy is on the docket early in the mornings on Wednesdays, overlapping with gymnastics. it’s always a bunch of fun. so once again, Kendall was too tired for much in the way of therapy, and was just really uncharacteristically grumpy. Megan (therapist) and I spent a lot more time talking about what to do from here – just disheartening in its own way. Everyone can see that things aren’t drastically improving much, in spite of having a lot of her issues “under control” (the vomiting and eating/hydrating) with the fundo and G-tube. And yet, for the most part, she’s a pretty happy baby. That was part of my hesitation to “take her in” to the ER (as had been suggested by a few people) simply because she looks and acts, outwardly at least, like a happy baby. If you didn’t know what was going on with her, you might think she looks like a happy 4 month old, content to hold her toes and observe the world around her. Certainly you wouldn’t look at her and think “oh my gosh, her liver is working overtime and she is barely above a metabolic acidosis episode”. not that I want a sickly looking unhappy baby. But one who doctors might take a little more seriously before it gets to admission level? That would be nice! anyways - so wednesday again started out crazy with the DSL man here to try to fix our computer service, Megan the speech therapist, an insanely unhappy Kendall, a frazzled me, the dog barking at the phone guy, the kids following the phone guy around, the babysitter coming to take the girls to gymnastics, and getting the two babies down for a nap so i could tackle Mt. Laundry. Phew. Phone problem was fixed, babies slept, girls gymnasticked, so we all went for a picnic. It got hot pretty fast so home we came for some nice quiet time. Since babysitter was here, I went to my “office” to work, and just as i was leaving, GI doctor calls me back.
We proceed to have yet another hard conversation about Kendall’s status, which ends with the doctor telling me that he feels pretty confident that she has a mitochondrial disease of some sort, and that there is really nothing more he can do to help us. He suggested we get up to Milwaukee Children’s hospital, or some other place with a metabolic/endocrinology team to get a hold of her nutritional status as soon as possible. That was hard to hear, hard to swallow, hard to accept. A mitochondrial disease has definitely been put on the table before, but its something that I don’t want to have to deal with just yet, so I’ve been viewing it as more of a “let’s rule it out” type of diagnosis vs. “let’s see if this is it”. Hearing that there’s nothing more one of the best GI’s in the area can do for your baby who just can’t get good weight/nutrition – that’s a bit of a blow too. It felt hard to breathe for a few minutes after that conversation. But you know, around here we just pull ourselves up by our bootstraps and keep on keepin’ on, right? So I went home determined to start finding the right team to help Kendall, and to make our night a fun family night without a pouty mommy. I encourage the girls that if they can eat in a timely manner (vs. the lonnnnnngggg dragged out meals the middle two like to create) that we will go on a walk/ride together, come home for baths, and watch our show (America’s Got Talent – don’t ask why we like watching this together, its just become our weekly thing…).
so they eat, we clean up, and out we head. Karissa, who has only recently learned to ride her bike without training wheels, takes off ahead of us all. As this got them all (the older 3) in BIG trouble last week, kealey being the typical oldest child, responsible for everyone and blamed for everything, goes tearing after her yelling STOPPPP!!!! STOPPP!!!! Mommy’s behind us!
well, Karissa DID stop, and Kealey didn’t. Kealey plows into Karissa’s bike from behind and Karissa went flying off. As I was able to piece things out in my mind later, apparently what happened is that Karissa hit the pavement teeth first, saw blood, and flipped out. What i SAW happen (from four houses down the block) was Karissa fly, Kealey chasing her, and lots of screaming. Now these girls fight on a pretty constant daily basis. I thought that what I was seeing was Karissa running away from Kealey because Kealey was telling her what to do. Secondary to that I thought perhaps a bee was chasing Karissa or possibly stuck in her hair or EVEN possibly had stung her. I mean they are tearing back to me on foot like they are being chased by the devil himself and I am just ambling along pushing the stroller with the babies in it, determined to be unfazed by the drama of the older two, at least until we get home. Let’s just have a nice calm quiet evening…
Karissa gets to me and blood is GUSHING – do you hear me?—GUSH – ING down her face, throat, everywhere. Out of her nose, bubbling out of her mouth – it was like a horror movie. She is hysterical, and Kealey is too by this point (she hates to see blood, plus she knows that she has caused this massive hemorrhage, somehow, someway). I really truly thought Karissa had bit her tongue off and I had the strange though “oh my gosh, how are we going to find the other half of it? do I send Kealey back to look for it?” But I was able to see enough to see that it wasn’t her tongue that was missing – i couldn’t tell WHERE all the blood was coming from, but I know facial injuries bleed like stuck pigs, so I threw Kaylen in the basket under the seats, Karissa in Kaylen’s seat, and proceed to push 70 lbs of children back around the block to our house. Kealey is put in charge of riding both bikes home (which, she actually managed to do quite well – she’s a quick thinker!), and I notice on the way home that Karissa appears to have bouncy balls growing under her knuckles. I am pretty sure that at the very least she has sprained her fingers, but, not wanting to be THAT MOM who is always overly concerned about her children’s medical issues/emergencies, I call Ben to ask what he would do if he saw what I was seeing. Luckily he was in the area, just up north, so he said to go to the ER and he would meet me there in a while. Thank God for my beautiful lovely neighbor Diane who met me halfway down the street to take my filthy, tired, freaked out children so I could run Karissa to the hospital.
Let me just interject here that if you DO live in the bolingbrook area, you know that for (well at least since I have lived here!) the last few years, if you needed EMERGENCY care, it was usually best to just jaunt on down to Edwards, traffic be darned, because they were really the only place to get complete care. 3 years ago when Karissa fell off the play structure and had a concussion/possible skull fracture, we went to the Edwards Urgent Care and ended up being transported by ambulance down to Edwards anyways. But since the new hospital has been built, I have been wondering how their ER stacked up. and let me just say – TOTALLY awesome. It’s calm, clean, organized, and QUICK. Maybe because the only two times i have gone were because I had a baby with a hole in her stomach and tube that was supposed to be in its place and then with Karissa gushing blood like she had the plague, but either way – it has my thumbs up now.
anyways – Karissa has a fractured growth plate in her left hand, and her top four front teeth are pushed back in her mouth. We are sent home with lots of good painkiller for Karissa, antibiotics to keep teeth infections at bay, and instructions to follow up with a surgeon to see if her hand will need surgery. She is put in a temporary cast and sling and home we go. It was a LONG day. I could hardly believe, crashing into bed that nite around 1 am, that I had started the morning with the chaos of the phone man coming. It seemed like a week had passed in that one day. I found myself sitting on the couch that nite, after the kids were in bed and Ben had gone back up to his hotel (he had work meetings early the next morning), watching TV and feeilng strangely disconnected from all that had occurred. Like I was watching someone else’s life. Like I should have been dead tired, and yet I wasn’t even remotely sleepy. Maybe it was an overload of adrenaline, maybe it was my brain’s way of just shutting off for a while so I could deal. either way, I knew thursday was going to be crazy by itself so I did eventually go to bed, although I never really felt “affected” by Wednesday’s events.
Thursday morning we have to take Karissa in to the dentist to have her teeth looked at. Thank God that she did not do any nerve damage, nor did the teeth impact her permanent teeth at all. For as bad as her mouth looked, it was the best possible news. The plan there is to give them a week to let a lot of the swelling go down, see if the teeth kind of find new footing in their new positions, and check in a week to see if they will need to be pulled or if we just let nature take its course and have them fall out when they’re ready. While Karissa is back getting X-rayed and having her teeth cleaned off from all the blood, I am on the phone with two doctor’s offices trying to get the referral up to Milwaukee children’s started. Never a dull moment. We get out of the dentist’s office, race home to pick up the babies, and back in the car we go to the pediatrician’s office for everyone’s yearly checkups/school physicals. All three of the older ones. Two words sum up how that went:CHA.OS.
Luckily, those three were healthy. Other than having to add insult to Karissa’s injury by giving her the school booster shots all Kindergartners must endure, it was pretty ho hum. I love Dr. Natalie, I really do. She asks how Kendall is doing and I give her as brief a rundown as I can about all the weird kidney/liver byproducts I am seeing, on top of the weight loss and the GI shipping us onward, and Dr. N says “ it might be time to have a talk about TPN.” (The Cliffnotes version of TPN according to Terra is that it is food nutrients broken down and delivered via IV into a line that is permanently placed in a baby’s or child’s chest, delivered directly to the heart. It’s not a good step, but can be very helpful in certain situations). I didn’t think Kendall was one of those situations. I have known it could be a possibility for a while, as her nutritional status has constantly bounced around and seems for the most part unrelated to what she eats, how she eats it, or how much of it she consumes. But it was, again, just one more dart into my heart on this crazy week. Dr. Natalie has about 3 of her nurses and a medical student start calling various hospitals downtown to track down a doctor that she has referred us to before, but that I thought wasn’t really pertinent to Kendall’s situation. She is a neurogeneticist (I think…), but comes highly recommended as being basically a “Dr. House” when it comes to pinpointing medically complex and previously undiagnosed kids. Even Dr. Natalie agreed that it was looking more mitochondrial in nature for Kendall (whereas previously she was pretty adamant that certainly we weren’t looking at that as Kendall’s diagnosis). the word “disheartening” just keeps echoing through my mind at this point. It’s all just so disheartening. She’s doing “okay”, she looks “pretty good” most days, but everyone agrees – at what cost, and how long can she keep it up?
How long can your liver work overtime to keep your body stabilized from lack of nutrition, without any continued nutrition to stabilize the liver itself? How long can your body handle wild swings up and down in your blood sugar from a pancreas that doesn’t know whether it’s coming or going? How long can you go without actually digesting and using your food as a nutrient source? I guess as long as God gives you strength and grace for. Cause that is about all Kendall is running on at this point! We are on the calendar to meet with this neurogenetics doctor on august 6th, but Kendall is at the top of the priority list for any cancellations in this coming week. We are trying to gather all of her medical records from both hospitals (Rush and LG) to send to this doctor so that she can get a feel for the complete medical history before we get there so she can make a recommendation to us. By the grace of God, I think Kendall is finally clearing what I have been thinking was a bug from her system, although more and more I question whether it was maybe another metabolic crash. Or maybe one set off the other. 2 weeks of the stomach flu sucks for anyone – especially someone who physically can’t puke and lives on the verge of dehydration all the time. I am hopeful that this week will be a much better week.
Friday we met with the surgeon to see about Karissa’s hand – and THANK GOD – no surgery is required!!! She was put into a hard cast for a few weeks (of course it’s pink and is now bedazzled with rhinestones) – and no gymnastics, no bike riding, no swimming…. AND she’ll probably have it on for a few weeks into school starting, just to give it extra stabilization while she gets used to a new routine at school. When they took the temporary cast off, i was SHOCKED by the size of her hand. It looks like someone shoved a tennis ball into the skin on the back of her hand, and sucked every last ounce of fluid and fat out of her fingers. Freaky.
but the drama queen has her pink “wand” to wave at us all now to remind us that “HELLO! I have a CAST ON!!! How do you expect me to help set the table?!?!?!?!”…..*sigh*. I’ve created a monster. We go back in two weeks to re-xray it to find out for sure when the cast can come off. Cause, you know, I needed one more specialist to fit into our schedule.
and lest I think that that was the end of the chaotic times for this week, Saturday rolled around. Ben was gone all day playing golf and having dinner with some friends, so again, my efforts to be A GOOD MOM, were going to bullheadedly move forward. We cleaned up our mess of a basement, went to find all the random things I needed at the store for Kidstown this week, and came home to clean out the car as a surprise for Daddy. So we get everything cleaned out, run to the carwash to vacuum it, then we come home and I let the girls ride bikes in the driveway while i Armor-all everything. WELLLLL let’s just say I’ve learned two valuable lessons from this exercise – make that three:
- apparently your car radio being on while you are working with all the doors open drains your battery faster than greased lightning.
- It’s pretty easy to START a 7 ton truck rolling backwards out of the garage down the inclined driveway. It’s much harder to stop it. The parking brake comes in handy here. And your garage door track can actually withstand a LOT of pressure (ie, a 7 ton car knocking into it) without ruining the garage door itself.
- When you have an unidentified odor of death in your car and you cannot find the source of it ANYWHERE, put two and two together and realize that your darling child’s blowout diapers that leak through the carseat, also leak through the carseat BASE. Enough said.
So after breaking my OWN finger/wrist (I have no idea what i actually did to it and at this point it doesn’t really matter cause i am NOT going to another doctor for at least a month!!!), I did manage to stop the car before it rolled into oncoming traffic, found jumper cables at one neighbor’s house, found another neighbor with a working car, got the car re-started, the garage door still works, we all ate dinner, and topped off our week by watching an insanely stupidly SAD movie, Marley and Me.
And this, dear readers, concludes this essay entitled “ The week I decided to stop being a coherent functioning human being and instead melt into a pile of caffeinated, drugged up goo.”
Seriously. Are you still reading??? Did you need a coffee/coke refill? My broken finger/hand is about to fall off from typing this all. I know that at some point the thought “ok surely it can’t get any worse than this” ran through my head – and it usually preceeded the next “worse thing” by about a half hour. Really, I know it wasn’t THAT BAD. It was just kind of… crappy. I wouldn’t wish it on my worst enemy. I know way worse stuff happens to people on a daily basis and my heart truly goes out to them. This was just one of those weeks where you know that old saying “That which doesn’t kill us makes us stronger” is TOTALLY true. One would THINK that it would have made me strong enough to stop my stupid truck from banging into the side of the garage…but apparently I need a few more crappy weeks to get THAT strong.
so that’s where I’ve been. In a glimmer of goodness in all this chaos, Dominicks was having a sale this week on M&M’s, the 10 lb bag. Good thing too. I needed every single one of those little happy pills this week! Shoulda stocked up and bought TWO! Seriously though – the flowers, chocolate popcorn, gift cards and well wishes from all of my friends have been amazing. Your comments here on the blog and in emails and texts and phone calls mean SO MUCH. They are the little bursts of strength I need to keep putting one foot in front of the other some days.
I KNOW this week will be better, even if its just in comparison to this week! I know God has His hand on Kendall and He is guiding the doctors even now to know how best to help her. I know God will use this time in Karissa’s life to ….. i don’t know, make her a better ruler of her fairytale kingdom some day???
I don’t have all the answers. I barely have any of the strength. But I know we are in the Best Possible Hands, being held up and lifted up by an amazing, awesome, caring God. This is all part of His plan – and boy I can’t wait to see how it all works out!
Ahhh and there’s the feeding pump alarm going off yet again… that’s my signal to shut up!
peace out –