Saturday, November 17, 2012

The average time between Mallory hospitalizations= 6 months  +/- 179 days.

Wednesday night Lily was not feeling well. Sometimes when Lily has to air in her tummy- it's like the world is ending. Normally- in a 7 year old- such behavior would not be tolerated- but she is given a minute amount of slack since at one point in her young life she was split in half and opened up. I knew we were headed for trouble when she didn't eat dinner. It was pork tacos- not much can possibly come between Lily and as many bites as possible of pig. When I cook pork in the crock pot- she walks into the house and begins to jump up and down screaming- I LOVE pig!! Wednesday was no different- except after 2 bites of pig- she went and laid down on the couch. My mommy sense tingled- we were in for a long night.

After her second time waking me up- I took her downstairs to sleep on the couch with me. I knew Phil was flying the next day and I needed him to get enough sleep. We spent the night with Lily wrapped around me, sporadically screaming and kicking- falling into sleep when the pains passed only to wake up and vomit. I gave her extra hydrocortisone and hoped it would be like the week prior- a little bit of puking followed by a day of resting. Not so much. While I was getting the other 3 ready for school- I gave her another big dose of hydrocortisone. It came right back up. Ugh- I know what this means. I decide to let her tummy rest- get the kids off to school and give her meds one more try. Although she manages to swallow one pill- the pain is bad and she is asking for the shot. When the stomach pain is severe enough for Lily to ask for her IM shot- that's speaks volumes. I call her endocrinologist. She tells me what I already know- it's time to give her the shot which is an automatic trip to Tripler and a 24 hour observation period. I get out her shot and manage to stab my finger with the needle as I am opening it. Ugh. Now I have to find an appropriate sharps container- which you would figure in a house with a diabetic wouldn't be as tough as it was. Lily is writhing around begging to go to the hospital. I am beginning to wonder if there is a little man with a funny name I can give my first born to that will alleviate this curse incurred by our family. I get her shot loaded up with a new needle and although she says ow!!- Lily doesn't flinch. Now it's time to pack a small bag and hope for the best. I decide to travel light, which is stupid, idiotic, and just plain silly. I know better. Phil later laughed at me saying- yeah- that's quality denial right there- kind of like the time I drove Phillip to the acute care clinic thinking they would just prescribe up some insulin and send us home.

Our time in the ER, expedited by a call from our endocrinology team was a swift 5 hour visit before we were transported up to the ward.  All hopes were on this being a quick virus- yet as the hours dragged on and there was no fever, no more vomiting, or diarrhea- flags were being raised. Lily writhing around in pain every time a doc walked by bought her a trip to morphine land- which although funny and a relief from pain- makes a mommy cringe. If they are giving the 7 year old morphine- we have more to worry about than a virus.  That also buys us a trip down to xrays to make sure there isn't a major city or anything residing in her abdomen. All of our favorite nurses swing by to check on us- even Lily's surgeon stops in to say hi. Always a good idea to have her near.  I watch the clock until the approximate time Phil is supposed to land- I get the text he is always so kind as to send and reply with a request for him to call when he is done debriefing. I know he will be upset I didn't tell him sooner- but flying is the one part of his job that he loves- no sense in us both sitting around worrying for that hour and a half. He calls right away and asks if Lily is doing worse. Um- kind of.  He says he will be over to Tripler as son as he can. Hate those calls. I hate that I keep having to make them. I hate that people don't know what to say and that we have become so accustomed to crisis mode- that it is our normal. When something becomes your normal- people assume you are fine and can handle it. If it weren't for my neighbors and the friends we have at the hospital- we would feel completely alone in this. In a world where Twinkies meeting extinction is a crisis, not sure where we fit in. Oh well- back to what we do - just keep swimming and be grateful for our time together-even if it is in a hospital room with the incessant beeping. 

When Phil gets to the room, Lily has a look of horror- I want mommy to stay!  Our routine in the past meant Phil spent most nights- I don't do well in the late hours. I reassure her that daddy cannot stay- he has to work tomorrow.  He makes sure I have food for dinner and I get him up to date and he heads home to relieve Monica from babysitting duty.  My IOU list for her is so long now- I don't even know where to start. Lily and I settle in for the night. When the meds wear off, she is still in a lot of pain. By morning, the situation is the same- which isn't a good thing. At least it's not worse. Phil drops the kids at school and brings me coffee. I love that man. He too sees the score. The time vaccuum that is the hospital takes over. A particularly bad wave of pain buys Lily a CT scan. Fortunately the new ped oncologist is the ward attending- she is fabulous. I get the eerie feeling the powers that be are at work aligning the forces for Lily and it is reassuring and unsettling all at the same time. The CT has to be done with contrast. Oh happy happy joy joy. One sip of water instigates 30 minutes of writhing- 32 ounces of contrast may just kill her. We load her up on morphine and zofran and get to work. After 2 sips she looks green and just shakes her head. Phil offers her a movie- she chooses Tangled. I have an idea- a wonderful, awful idea. I ask Lily- How about every time they say hair or light in the movie- you take a sip? She shrugs- Ok. Which word do you want to do? I'll do both she says. Phil is shaking his head at me- you are totally going to hell he whispers, for the contrast drinking game. All I can figure is that when she gets to college- she will suddenly have the memory and then she will have the resources at her disposal there to effectively deal with it. After all she will have perfected the drink vile stuff and try not to puke part. We made it through the contrast and get down to CT- which showed a little thickening of the appendix wall- one more thing to keep an eye on and several swollen lymphnodes which could be due to several factors- all of which require a careful watching period.  So that's where we are. We are waiting and watching and hoping for the best. Phil spent the night last night- I came home and crashed with a Bella who is obviously distraught that her roommate is absent, Kiera is busy retreating and withdrawing- that's how she handles it and Phillip finds it to be a great reason to be alone and watch inappropriate programming on television. SO I guess it is kinda normal here.

1 comment:

  1. Stinks,,, may your swimming monkey come home soon! xoox


Lily Kay Monkey

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