Thursday, May 19, 2011

Taking Shots

When Lily was diagnosed with adrenal insufficiency, we were given the emergency kit. A vial, a syringe and instructions. Phil got the initial instruction and relayed them to me in the style o Pulp Fiction. To this day he doesn't understand why I don't keep a sharpie in the kit. Because you don't give the shot in her heart, dear. That isn't to say giving the shot won't get you in the heart. Because when you have to give the shot- you are in dire straits.

So we have had the stomach flu. The good old fashioned, getcha every which way with a vengeance virus that makes you question your mortality and leaves you praying to the porcelein god. It was like clockwork. Phillip was the first hit and I questioned whether or not it was pancreatic insufficiency or just a tummy bug.   A call to the doctor earned Phillip an extra emergency shot and me a lesson in advanced diabetic treatment. Usually ketones are high when blood sugar is high-you solve the problem with an insulin shot. SO what happens when a diabetic is sick and ketones are high and blood sugar is low? Problem #1 You get a lesson in advanced diabetes management. So you have to mix up this special glucagon shot which tells the liver to release all the sugars it's got stored. But since he was sicka nd not unconscious- we only needed part of the shot. Yet since he uses an insulin pen- we were never issued syringes- problem #2. A Dr. Pepper later and a trip to the drug store by my neighbor- procures us the correct equipment to treat the problem. Lesson learned. Then 2 days later- Lily gets it. Narrowing down the field of suspicion of causes- yet her immunity is questionable as well. I worry that she is having insufficiency issues. I don't get the luxury of dismissing a virus anymore as just that. For both kids, regular sicknesses can rapidly become medical emergencies.

SO Bella starts puking a couple days later. I have now confirmed it is not a bit of bad luck for the insufficient children- and by insufficient I mean Organ-izationally challenged- not that they aren't good enough. I get her on the mend and we have a whole day with no one puking. The next morning Lily wakes up with a tummy ache. Lily frequently has tummy aches- when she's hungry, when she has to go to the bathroom- when the wind blows. I take them seriously- but I also know they are fleeting at times. She tells me she threw up. I am about to question the authenticity of this when she dodges into the bathroom again. Lovely. I think this technically makes it an epidemic.

One of the problems with adrenal insufficiency is illness. The adrenals boost cortisol production to help keep all the systems in check- blood pressure, heart rate, fluid balance, temperature. Mess with the system and you get one sick kiddo. I know the importance of getting Lily to take her meds and keep them down. We try two more times. No luck. I break out the stores of her chemo anti nausea meds. I wait 15 minutes and try her hydrocortisone again. I even mash the pills up really fine and dissolve it in ginger ale. This time it stays down a half an hour which is on the cusp of counting. We are approaching lunchtime. Since she is sick, I need to triple her dose and I am not even sure she's had one. I call the doctor's office. No answer. I get distracted by repeated pukings. Next thing I know- it's almost 2. We have reached emergent status- I page her endocrinologist. We are into needing the shot territory. As I call, Lily starts to get sleepy. Her endo says get the shot ready. 2 months ago I would have been unsure of this process- but due to the presence of a certain diabetic in the household- shots are kind of a regular thing. A sardonic thought crosses my mind- everything happens for a reason.  I call my sitter over to help hold Lily, it isn't too necessary as the shot is quick. I know she needed it because she hardly cries. Her endo calls back immediately and wants us to head into the ER. 

We go. I hate the ER. I hate the necessity that brings us there. I hate feeling like I am faced with an indomitable challenge-parking at Tripler, or just day to day life anymore. There is one of me, 4 kids and my husband is TDY. The night before he apologized for leaving, I promised we'd be ok after all we needed the healthcare. Way to jinx it.  It's not a good feeling. I would stop to cry or maybe even scream, but there is no time. My phone rings- it's the husband. I am too tired to pretend we are OK. He promises to be on the first flight home after training the following day. We'll be fine, at least that's what I keep telling myself.  We get triaged and her heart rate is very high- 137. She is in crisis. They give her more Hydrocortisone. Lesson learned- I waited too long on the shot. This run of the mill virus just bought us a stay at Hotel Tripler via the better safe than sorry passage. Another night of no sleep. But that's nothing new- the accomodations are just less comfy to toss and turn in.

The nurse in the ward is new, but has been told we know our way around. She covers her bases while not going into overkill on the welcome. I laugh at having to fill out the admission questionaires- the qc for the floor to see if we can be trusted. She apologizes, but it's protocol. I fill it out joking along the way- when it asks for social support system- I put Facebook. I put a line through it with a smiley face and put the obligatory family and friends. Last time Phil was there the last question asked if the hospitalization was normal. He wrote truthfully- despite that we have done this dozens of times- it is not nor ever will be normal. I was looking forward to writing my own quippy response, but the question had changed- it was now- Will this hospitalization affect your lifestyle Yes or No?  Seriously. Yes it will flipping AFFECT my lifestyle. What part of hanging out in a small cell with beeping equipment, iv lines, routine vital checks, invasive procedures and barrage of parading residents says lifestyle of choice? That disregards the reason for being here- the serious illness of my child. Something I have little or no control over here. If something beeps at my house- I turn it off. If someone knocks on the door and I don't want to visit- I don't answer it.  I don't catalogue every ounce of urine my child excretes generally speaking- because it's gross. When people talk about living the glamourous life- none of those things are present.

When I am convinced Lily will live, I start pestering docs to order her CT scans inpatient style. No sense in me coming back in 2 days, making her not eat - when she currently has nothing in her stomach and is right there. Apparently this is something akin to an act of congress. But we make it happen.  It takes me, my mother in law, my neighbor and finally Phil all putting in requests each time a doc walked in the room.  These tests that a week ago, I agonized over. Tests that I worry will damage her already fragile system. Yet through all of this- I find a stasis. No news is good news. The CT doesn't reveal anything urgent. We will wait and see in 3 months. It is the best answer I can hope for. It is our new normal. Waiting and seeing. I don't know what it means- I don't know what 3 months time will do. I know that a lot can happen in just 2 days and we'll take it a day at a time. We take some shots along the way- but I found out I can give them too.

worried sick

Sick kids should not be in school. Sick kids need to stay home and get better and more importantly not infect me and my little petri dishes with their vomitude. A runny nose , does not make one "sick". It may make one "allergic" or "runny" but that too unless accompanied by another factor does not count as an exclusive reason to be kept home from school. SO what of a runny nose AND a vomiting episode, you might ask? Well experience tells me that in a child with a diminuitive gag reflex- such factors are so intrinsically linked that they should really be counted as one then therefore NOT and exclusive reason to be kept home from school. The only reason I would keep them home from school under these circumstances was to prevent them from having to lounge in the healthroom, picking up even more vile illnesses, which has happened now- twice.

The problem with routine illnesses is not that they are present- it's just that all of the sympoms mimic those of acute conditions or induce acute conditions in special endocrine patients whom reside in my home. Which is to say- life becomes and hour by hour mess until crises can be ruled out and virus ruled in. Lily has been coughing for a week or so. One of those allergic, postnasal drip annoying, gets worse when she lays down kinda coughs. Non productive, no real runny nose, no fevers- until Monday night. The night after her sedation for her scans. The night after her doc called to say there's a blip mid femur we would like to take a better look at with another CT and xrays.

So now the worry sets in again. Like it ever leaves, it just burrows in the recesses of my mind - a cancer in it's own right. What if the nagging cough is a symptom of something more- the first sign of a bigger issue? I am so tired. I haven't slept a full night in months. I try to push the worries back and duct tape them to the corner with the knowledge that we will take it as it comes. Nothing is permanent. The worry is as damaging as the radioactive rays they want to bombard her with. I need to find the positive and harness it. Many would turn to prayer. Yet their God is on my shit list once again. Part of me feels that by the destruction of one of the major sources of evil in the world has again tipped the delicate balance of good and bad. I don't see why a 6 year old has to take on any bit of evil when there are puppeteers available with too much good. The balance seems entirely out of whack.

I don’t want her to have unnecessary radiation exposure, but environmentally we are bombarded with it anyhow. Yet the manmade versions frighten me so much more. I can’t explain it- I just know it to be the case. I guess it’s written in my DNA. Or mutated into it anyhow. I would really like to not deal with any of it. But it won’t go away if I bury my head in the sand- it might- but the fear of it getting worse chains me to this progression of events. I’m not ready to throw up my hands and let cancer win- nor am I willing to give it ammunition.

Lily Kay Monkey

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