Tuesday, May 21, 2013

Preparing to leave for CHKD tomorrow

When I left CHKD, I spent the afternoon kinda in a haze. Grammy knew I was trying to enjoy the day, and I definitely did, but I was also trying to process over and over how my conversation with Dr. Konikoff went. I made up my mind on the drive down 295S, looking in my rear-view mirror at a silly little girl blowing bubbles, that I would give the new medication a good shot and try my hardest to push foods and work on more smiles all around in the home. I have 2-3 weeks and I think I can handle it!

Two days later I received a call from the Surgery Center at the hospital, ready to schedule Annabelle's surgery, just like I expected. She informed me that Dr. Konikoff himself called down the day before and asked that we get her in as soon as possible, which happens to be next Thursday. Wait, what? I thought I had a couple weeks to show off all our improvements and great strides, what do you mean I hard have 7 days?! He wants her scheduled Thursday afternoon but wants her near the hospital next Tuesday evening to check in so we are near during the prep-work for the Colonscopy in case anything goes south. The wonderful nurse put me in touch with the Ronald McDonald House for accommodations and we discussed my goals in the meantime and what would happen once we arrive next week. Everything moved very quickly from there, and I am now staring at a computer at 11pm the night before Annabelle and I head to Norfolk alone and I cannot make my mind stop racing to save my life.

I speak with someone from either Dr. Konikoff's office or the Surgery Center almost daily. They call to confirm another bit of information, discuss allergies to medications / prior experiences with surgery / etc etc. I am pretty sure at this point I shouldn't hear anything further and we are all set to go. I will call tomorrow morning at 10a to ask what time to report to the Surgery Center at the hospital, they currently have us scheduled for 2:00pm which will require we arrive at noon. The procedure itself will take about an hour, then a couple hours afterwards to make sure she is coming out of anesthesia safely and is doing well. I figure we will get on the road from Norfolk at perfect rush hour 5:00pm, with a very irritable baby that just went thru hell in the backseat alone with me for 3 hours. This is promising to be quite fun.

I decided to pass on the Ronald McDonald House and take a friend up on a generous offer to let us stay with her at her home with her two sweet little girls. I fear sitting in a hotel room / equivilant alone with just Annabelle and myself, and watching her beg me to eat all day while I am unable to keep her entertained... for two days. I am looking forward to catching up with Ginny and I think Annabelle have new friends and toys to play with and I have a girlfriend to also talk to, will be a welcomed distraction until it's time to head to the hospital. She lives very close to the hospital so it will be a benefit all around. 

What's racing thru my mind right now:
  • Anesthesia. That will never be something in the back of my mind, I dwell on it constantly. I don't know what it is about anesthesia but I cannot stomach the thought of my daughter being put to sleep but not waking up. Ive never had a bad experience with it, but something has also never sat right either. I hate it, I hate every single bit of it.. and this time it won't be 8min, it will be over an hour. 
  • Keeping Annabelle distracted. She's going to be starving and I cannot feed her for TWO DAYS. It's one thing not being able to feed your child food any longer, and it's heartbreaking but it's another not even being able to give her formula when you know her belly is growling. I hope we can keep her happy and smiling.. even during the long drive down there.
  • Oh crap! Yes, literally. My tomorrow will be full of changing more diapers than I can blink at. Im not concerned about my responsibility in this as much as I am worried about how it will make Annabelle feel. I don't want her tummy upset, or hiney raw (as it usually gets anytime she has these issues. She goes from a perfect hiney to open, bleeding sores in hours and I worry this will happen). Tomorrow may also promise to be a lot of baths for us too. I hope she can slow down and get comfortable enough to give us a break in the day to get to Va Beach without too many stops to change. I just have no idea how the day will work and I hope I can navigate around this un-fun part of the process and keep everyone from getting frazzled.
  • Madelynne. I try hard to spend lots of one on one time with her.. letting her stay up later, watching movies and cuddling together but also keeping her informed on whats going on around her and in our lives. She deserves to know that her sister is sick and when she asks questions, I will give her the honest truth. I told her that tomorrow I will be going out of town with Annabelle and she will be here with daddy by herself. She was upset because she also wants to go with me.. explaining that she cannot and needs to stay here was a little difficult. I told her that Annabelle has to go to the hospital and she distinctly remembers what happened last time this procedure was performed, and how scared and upset Annabelle was. I think she is nervous for her sister but I don't want Mady to have to carry that fear or burden. I hope this time with us away from home this week will move by very quickly for Mady too and all be over before we know it.
I need to pack our bags but I have no idea what to pack. Something comfortable of course. Lambie, duh. My new CURED T-Shirt that just arrived, absolutely. Jammies and probably 15 extra pair of clothes in case they get soiled over the next two days.. I just need to get started, but everything inside me is procrastinating because I don't want to leave. When I get in the car tomorrow with bags packed, just Annabelle and I cruising East sporting our sunglasses, I know that when I come home I would have just conquered a new level of 2-Day Hell and that in itself scares me, for both of us. Annabelle is so strong, she's brave, she's a trooper but she also has no idea what is in store for her - and that too makes me feel so guilty. Oiy. Wish us luck. Keep my sweet baby girl in your prayers and say a good word for her upstairs that we have a safe surgery Thursday afternoon and get good answers next week.

Sweet Dreams

No comments:

Post a Comment