87 Days

Today was our 87th day in the hospital since we learned Chelsea had leukemia on September 26, 2007. It's hard to believe how much our lives have changed since then. I went back and read my earlier posts from when we began and I'm surprised at how accurately I was able to explain the events that were taking place. I remember how heartbroken we were but yet I was still able to keep my mind straight enough to learn about this disease, I'm quite impressed if I must say so myself. Anyways back to the relevancy of Day 87. I finally made a decision about this whole living in the hospital business. Let me give you a little background first.

There is the cutest little baby up here on the oncology floor that Chelsea loves to approach and talk to (and steal her toys). We see the baby a lot when we're cruising the halls, b/c she spends most of her time with the nurses up front. I'll never forget my first encounter with her mother which took place during our second round here. It went something like this:

me: 'You're baby is SO cute, Chelsea just loves her!'
the other mom (tom): 'thanks, yes, she's a handful'
me: 'I don't know how you do it, it must be so hard to work and have to leave her here.' (I had made this assumption b/c the little baby spends so much time here alone and I had never seen mom here before. I also saw another small child w/ mom that was looked like Logan's age, so I was guessing she was probably a single mom trying to take care of her other daughter AND work.)
tom: 'oh I don't work. this is my full time job (she points to her kindergarten aged child and the baby who stays at the hospital alone.)
me: (in recovery mode) 'Oh, yes, I know, they sure do keep ya busy.'

Fast forward to night 86 (which would be last night). Chelsea was super grouchy and I was on the verge of missing my window of opportunity to get her to sleep. She had a fun weekend and was pooped from chasing her brother around. At shift change I went to look for our nurse and care assistants to let them know the status of my little spitfire and to tell them if they were busy they could do vitals after I put her to sleep. Then I noticed Chelsea's nurse was in the room with the baby who is here alone. She came to our room around 8:30 (an hour after shift change) and assessed Chelsea so I could put her to sleep. I asked if her care assistant wanted to do vitals now or wait. She said she didn't know, and that the CA was in the room putting the other baby to sleep. (I want to make it clear I am not complaining about staff *** isn't it sad that I have to point that out?)

To my point... As I rocked Chelsea to sleep last night, I grew increasingly frustrated at the fact that my child was having to wait and wait because this other mother is not here with her poor little baby. As you know, I am here with Chelsea day and night, and I try not to leave her for long periods of time. I do indulge in the occasional lunch break, hot bath, or scrapbooking session in the parent room once a month, but other than that, I'm here with her. She's my full time job. I'll admit though, when I do leave her, or ask someone for help, I feel guilty. It's not the nurses job to babysit our children, and I would be the first to speak up if I were a nurse and was being used in that way. That being said, I made a decision for myself, for my well-being, and for my sanity last night. I made the decision to leave my daughter for an hour in the morning. (okay with the drive, it's an hour and a half) I figure if other parents can leave their children for long periods of time (even over night) then Chelsea would be fine for a short period while I went to exercise. I've got my plan all mapped out, and was able to execute it without any problems this morning. I awoke with my lovey around 7:45. I ordered her breakfast and called the nurse into the room so she could unhook her fluids (yep she's not drinking very well lately). I told our nurse I was leaving and that I already ordered Chelsea breakfast. She didn't hear me say I'd be back in an hour and she said, "oh, are you going to be gone all day?" (I think she was shocked, but she's so wonderful, she was just going to go with it). I assured her I would be back shortly and she said good-bye with a smile. Of course before I left, I told the nurse and CA all the stuff about Chelsea that they already knew; be sure to buckle her in her high chair b/c she'll climb out, if you have to leave her she'll be okay in her crib with all the rails up and her signing time video on, don't leave her unattended with her fluids hooked up or she'll pull it until it breaks...just the regular toddler FYI. Then with confidence, I left. I drove to Jazzercise, enjoyed my one hour class and returned promptly to 4 Henson. And would you know upon my return the CA informed me that I had just missed a total blowout diaper! Of course she saved the dirty laundry for me though.

It's pretty sad that it's taken my 87 days to come up with this plan, but I've finally reached my limit and I know I need to do this at least a few times a week to maintain my sanity. I'll admit, it doesn't help to see Ryan on the weekends, who has lost over 30 pounds in 6 weeks ... meanwhile I've been sitting in the hospital lacking the tools to sway the scales in my favor. Hopefully my new plan can at least make a dent! So know that I've blogged it, I'm committed...to make a little bit of time for myself in the morning. If she's still sleeping when I need to leave and I can sneak out, all the better. Don't tell the nurses, but I've learned to leave the call button in her crib so that when she wakes up she'll be sure to call them to let the know she's awake!

***edited to add...of course I won't leave her when she's sick, it's only a 'plan' for the days that she's acting like the super healthy sick kid she usually is.