Sunday, July 31, 2016

Day 2-3 Steroid diaries. Shit hits the Fan

I've been bad about journaling and my friend Cheryl likes the daily reports so I figured I'd start with the steroid reports. You know- days and days of me fighting the inner hulk, the tales of insomnia. My friend Murphy well- he and karma(who sometimes is a bitch) seem to be in cahoots.

After a few hours of sleep- I got up and started catching up on nonprofit work. I'm still woefully behind, but I had plans of productivity- the kids go back to school next week- I had all this week to get organized......famous. last. words. 

Tuesday starts out good. Right until Phillip wakes up and wanders into the bathroom. He's 16- I do not inquire as to what goes on in there I just set out water usage and cleanliness guidelines. After awhile I hear the sounds. Those sounds. The puking sounds. Then the explosive sounds. Oh- I see how we are gonna play this Murphy. Awesome. He opens the door- drenched in sweat. No fever. I kinda don't want to go anywhere near him- but it's kinda my job. I ask him about sugars and insulin pump function(there was a small issue with it last night, so if the site goes bad, he could build up ketones which produces ketoacidosis- vomiting, just really bad for the body. Critical and quick. So I test his sugars and ketones. Sugars high, ketones low. Ok. He takes some insulin. This sets the tone of the day- he wants to rest and this means every 2 hours he needs to check blood sugars and ketones. My job is to remind him, aka be the nag. It's in the job description. I remember having a concussion as a kid and only wanting to sleep but not being allowed to- it sucks- but...job description, triage, health, hospital avoidance, yada yada.  

Kiera and I had days of organizing planned- it's easier to start the school year with a little order because it gets busy and hectic fast. We have to run to the post office and the store for bins- after 2 stores we cannot find what we need. Standard. Kiera is texting Phillip and Lily for updates. Phillip is not able to drink without throwing it back up. We are at stop 4, it's time to ditch and take care of the boy- its after noon and he's been puking since this morning. We grabbed chicken noodle soups, jello, ginger ale, maybe a swimsuit for Kiera and a couple school supplies and we were out. Sans bins- the original purpose. But that's just how it goes sometimes.

Phillip is in bed and he looks awful. I know mumbling grunts in response to questions are kinda the norm for teens- but this is more. We are getting to the point I'm gonna have to make some unpopular calls. I take his blood sugar and ketones. 300 and .6. Damn. He can't keep water down, he hasn't peed. damn. Still no fever. I have him give himself some insulin- god bless the pump that does all the calculations for you and your sick kid.  I call Phil first. damn. See I don't have Dr.P's pager in my phone- I usually call the wonderful nurse Drizza and she makes everything all better. Phil says go directly to Dr. P. damn. I know what this means.  After I page her, I start throwing stuff in a bag.  She calls me right back and I explain what's up. She knows we don't call unless it's big. She's already giving residents orders in between asking me questions and my trying to rouse answers out of Phillip.  She tells me what I already know, dehydration is bad, ketones, bad, it's best to stay ahead of this and come in and she's trying to find the easiest way for us. I appreciate it so much because well I don't know if it's the steroids or adrenaline but I'm worried. Usually I avoid the hospital at all costs but I've also learned- sometimes caution does save a lot of pain in the long run. The quickest option she has for us is the ER- she promises that she will call ahead, they will be waiting for us and she will meet us as soon as we get there. She warns me if there is the possibility of admission. I realize this and we both know we are hoping to avoid that. I ((heart)) her. How quick can we be there? Since I've already packed my overnight bag(in order to avoid an overnight visit the overnight bag must be packed and ready- it's a rule)- I tell her if there's no traffic maybe a half an hour. I am smoking crack apparently because I just jinxed the fuck out of this. Yeah I dropped the f-bomb. completely warranted. would do it again. And not mention traffic or estimate being to the hospital in 30 minutes. ever.

I stuff Phillip's supplies in his bag, grab him a sweatshirt, continually tell him to get dressed, like no really, we are leaving, like I know it sucks but we have to- like really I can not do it for you- you are huge- buddy just flipping put a shirt and shorts on and lay on the couch. I grab the emesis basin, line it with paper towels(learned the splashing vomit in the car lesson the hard way....more than once. )Water bottles, towel- Lily helps carry everything to the car. Kiera has ballet, so the littles will be alone for a couple hours. fuck. I forget they are still little and even though they can stay alone for a couple hours, I don't know how long we will be- I can tell they are worried. As we leave the neighborhood- I call Phil to let him know the plan, I call My wonderful sister in law's sister to see if she can take the girls, I call Kiera to make sure she has all the numbers and will lock the door. As we get about halfway to Tripler, traffic stops. Yep I did that. way to go jinx face.

Phillip is hanging in there but the way he is shifting around tells me- vomit is not my only worry here. Not much we can do, I try to talk with him to distract him. It's clearly not helping, he tries to sleep. We get to Tripler well over an hour and a half after planned. I park by the door- where there is no parking- it is truly truly cruel the lack of parking by the ER- but that is a discussion for another time. Phillip says- I have to go and is moving at a slow but determined pace. I throw the emergency lights on- which is my small attempt at signaling- please don't tow me I need to emergently help my son to the bathroom before the shit hits the fan. He makes it. The lady hobbling in front of us is hacking on a level I hope it is seriously not contagious. I get him checked in and the receptionist just hands me his wristband. The noises coming from the bathroom are fairly explosive. The triage nurse peeks out and I shrug- she says to just bring him back when he's done.

When we finally get him over for vitals, the nurse is amazing. Her daughter has diabetes, she knows the drill and asks the right questions, like- is this diabetes sick or does it feel like something else? Phillip says definitely like something else.  Dr. P join us and hugs me and says I'm looking pretty good- which is not to say smelling good because well I'm pretty sure I hadn't showered recently. She mentions she expected us sooner and I explained traffic had other plans. I take the opportunity of Phillip being in capable hands to run and park the car. It is now late enough, parking is not a problem. thank you traffic? Phillip gets some zofran and a sip of water.

A room isn't immediately ready, so we wait a few minutes until Triage 2 where they give him an IV and draw his blood and then take him to a room. I know things move kinda slow from here, which is ok- that is a good sign. When things move fast I get twitchy. The attending stops in and sounds grateful that Dr. P pretty much ordered everything needed and they just had to set it up. I round up some blankets for him and pretty soon he is all hooked up to the machines and some fluids. Within the hour he is starting talk to me again. The fluids helped tremendously, he was pretty dehydrated. The water bottle I grabbed is sweating all over my bag so I ninja a special Koozie for it out of a napkin and Coban wrap. Phillip is not impressed. He is doing better and my role is to hand him his water bottle whenever he reaches- he's reaching more and more. Nurses are in and out- it's right around shift change. His blood work is trickling in, so far so good- no alarms. He doesn't even have ketones. Um yeah well maybe our old glucometer we use for ketones is set to 2011 because the ketone strips I could find expired in 2012 and maybe that might not be the best. The doc shrugs, probably didn't matter, as dehydrated he was, he probably was throwing some. She orders some new strips for us. And some zofran. As soon as he pees and finishes the fluids, we can go. He is ready to go and wants something to eat. what the heck. I'm glad, but dear God. I look at the clock 3 hours- I think that might be our Tripler record. sweet. This ensures that Phil will competitively commandeer the next ER mission in order to beat my time. mwah ha ha. yeah I know, jinxed it.

We stop to get jamba juice and I call and let Phil and the girls know we are on our way. Phil asks Phillip if he wants anything from McDonald's. Phillip looks a little green. He passed the dad test. We make it home knowing it's going to be a long night of every 2 hour blood glucose checks and keeping him hydrated. I am thankful for the steroid energy. We get all the littles into bed and I start the cleaning routine. Laundry, kitchen- I dump out both of the boy's bags, glucometers and such into a bin and proceed to clean and try not to gag. We are lucky if this isn't the plague. Teen boys are gross. We warn the sick child there will be big discussions about this when he is feeling better.

I am feeling exhausted, Phil is drained, I check Phillip's Blood glucose and Ketones are measuring on his glucometer.  I have him give himself some more insulin. I'm wondering if the meter needs to be calibrated but I can't find the darn solution and I'm pretty sure if I did, it would be expired. Damn. Phil says not to worry, it will be fine but I know I won't sleep so I run to the drug store and grab some urine ketone test strips. I feel like I'm out of diabetic crisis/sickness practice. This is a good thing. I don't have much faith in the urine test strips. But more so gonna compare to the glucometer. So on and so for the next few hours. And of course when I get back and wake him to test ketones and sugars, he has a fever. So that's another tally for viral/bug/plague. I finally laid down on the couch and just closed my eyes when Bella boo comes down, her tummy hurts.  Well damn. I don't want a house full of puking, but if it is a bug then I know it has to run it's course and I also then know that Phillip just has a bug. Or that he and petri dish are licking the same plague source. I send her upstairs to get her pillow and I am following her to grab the other emesis basin when she dives into the bathroom. Now is a true proud mom moment- Bella is a notorious bad puker. Like everywhere- you could be holding the bucket under her mouth and she would pull away and splatter everything. She made it to the toilet. Yep. I done good- big milestone.

I grab a ponytail holder and tie her hair back, in a gesture she hopefully will repeat for her sisters or dear friends many many years from now. I get her cleaned up and settled on the couch and go back to clean the bathroom. It's a superficial job until morning as I have to supervise the accuracy of the newest puker and then it's time to check the diabetic. I take the chance to try to sleep next to Bella on the couch, but my head is spinning, my stomach feels off and I hope it's just the adrenaline and steroids and lack of sleep. I drink tons of water. It is Thursday. It is a new day. I can do this. My hands sting already from the incessant hand washing. I really don't want to puke. I think it's probably bad to have that much pressure with a brain tumor in the cerebellum, but I can only do so much.

The rest of the wee hours are a vague blur. I remember Phil getting up for work and saying goodbye, then chasing my steroid dose with some coffee. Good luck stomach. Then setting about to disinfect all common surfaces and loads and loads and loads of laundry. I called to cancel my ECHO which dang- gotta reschedule that. I call nurse Drizza to check in and ask about the worthlessness of urine ketone strips. She always makes me feel like I'm not an idiot, I appreciate that. By midmorning Phillip perked up and was laughing hysterically over some silly internet something- Lily helped me clean her and Bella's room, Kiera remained quarantined in her room- she doesn't DO sick. I texted my Sister in law with tons and tons of apologies that we may have exposed them to the plague. So even though it completely sucks to be on steroids and have 2 sick kids- their bathrooms are a level of clean they have not seen in awhile. It is a bit empowering to know that I still can function in normal crisis, albeit with performance enhancing drugs. And somewhere in there Phil came home from a really long day at work and it hit. The what on earth will I ever do without this woman? Will it ever get easier? But mostly- WHAT THE FUCK. Because part and parcel- it's normal sick shit. It happens- people get sick all the time. But during a chemo week after a really long ass few weeks- it just slams into you sometimes. Was it the hardest of weeks- nah. Top 10- not even. It just tends to be cumulative and you get tired. And sometimes you want to get bitter or pissed, but then you realize as always - it. could. be worse. So instead of grabbing the bleach spray, I grab the husband and we go to bed and although he sleeps, my mind won't rest but I know he needs me there- so I stay.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)