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Tuesday, July 21, 2009

Round 1: Winner- Gabriella!

We are home and I am writing from the quiet of a dark room with Disney Channel playing and a smiley girl laying next to me.

We went to the doctors office on campus of the hospital today at 1130 to see if Gabriella was tall enough to work the treadmill for a stress EKG test. Good news was she was tall enough! That made for one less test to complete while under anesthesia today! We headed over to Phoenix Children's and got all checked in for MRI. Transition from the waiting room to the MRI prep room was quick and timely. The Child life specialist came in and showed Gabriella a Barbie sized MRI machine made of wood and Barbie laying on the table of it. (I thought of my brother-in-law Abel. He so would have made that) Gabriella transitioned into her nervous mood, where she got quiet and blocked out things. She completely ignored the mask the CLS was trying to show her, but colored the most adorable baby doll with their markers. The anesthesiologist came in to talk to me and get Gabriella going and she started to panic a little. She didn't want to do the 'breathe thing' and was firm about it. Again, like I did on April 24, I had to go with her and hold her while she was put under with the mask. Screaming, crying and looking at me desperately. Not any easier this time than last. Still the same fears, the same image in my head of her looking at me with a plea to help her.

My sister in law, and Gabriella's godmother, stopped at the hospital to hang with me since she works close to there. We grabbed some lunch at the cafeteria and I ran into someone that put a huge smile on my face. We saw Sheila, the amazing recovery nurse who cared for Gabriella in April. I was able to tell her the final results from April's testing and give her a Gabriella Band and a card I made with my contact info and a link to this website. (Hi Sheila, and thank you for leaving your footprint on my heart!)

We sat in the waiting area and ate our lunch (more like I inhaled it. I was starved, and my poor Gabriella was too). It is a busy hospital and I wasn't minding much to the people walking around. But as I was talking to my SIL, I looked over and saw an angelic face sitting in a wheelchair being pushed by her mom. It was Kate. I looked at her mom and said "This is Kate" and she said "yes". I spoke to her for a short moment, but a short moment that felt like the deepest of connections. Not that we have similar ailments to compare, but that she was going through such a deep and profound struggle with her babygirl. I know that feeling. They are 3 weeks post-news and when she said the tears just come, I understood. I understand the struggled words she writes in their journal. I understand the helplessness she feels as a mother. I told her about Gabriella (because she asked what was wrong) and told her how many people in my family were praying for them and Kate. Told her about Gabriella's prayers for Kate and how Gabriella always says she wants to meet Kate. She told me to come and see Kate with Gabriella, which I want to do before we board our seats on the roller coaster waiting for us. I had to hug her, and assured her I wanted to reach out to her as things calmed for them. Of all the worries and stress I had today with Gabriella's testing, there was so much happiness in my heart to be able to tell Kate to her sweet little face how beautiful I thought she was and that we were praying for her.

Gabriella was done in about 50 minutes and was sitting up when I got to her room! She had a hard time coming out of things because she said she felt yucky, but was 100x's better than she was in April. The nurse said they got all her blood work done and got all the images they needed for the MRI, Praise God. I stayed by her side and the nurse took out her IV (after I subtly asked for a dose of Zofran via IV to help her) because she wanted to 'be done'. We got out of there what seemed to be so quickly, but it was because we didn't have to make her lay flat for so long this time!

She is home now and like I said previously, doing well. She slept a solid 2.5 hours, barely waking for daddy's lunchtime visit from work and my friend Heather's visit with pizza. BUT she needed it and I enjoyed watching her sleep so peacefully. There's a reason Sleeping Beauty is her favorite princess!

So results should be in in about 2 days. Not that I expect any findings on a brain MRI, but then again I wasn't expecting any of this with her heart. Question I have been asked: Why do a neuro MRI/brain scan? Same reason we are doing a kidney ultrasound. To create a baseline. If 6months down the road, post-transplant, she has any issues, they have scans to compare them to in her more healthy state.

Schedule for the coming 2 weeks: This Thursday we will do a chest X-ray and renal Ultrasound. July 28 is her every-4-week maintenance Echo. July 30 is her in-office stress test. Then I THINK this is the end of testing HERE before we head over to do the intake appointment with Loma Linda. I am still trying to figure out when she gets on the list, but I'm guessing it'll be a few weeks before she's in line for a new heart. Just saying that makes a ball magically appear in my throat.

Thank you for all the prayers! I owe every step I am able to take even when I feel too emotionally weak to walk and every bit of this process Gabriella is able to endure with grace to those prayers and God's protection over our family.

1 comment:

Megan@SortaCrunchy said...

AbsoLUTEly Gabriella was the winner of this round! YAY!

What an emotional day. I am glad you got to meet Kate and her mama, but sad it was under those circumstances. Two little girls who are ever on my heart.

Thanks for faithfully keeping us updated, Kristi. It really does help me know how to pray.