Thursday, January 8, 2009

McDonald's and Surgical Incision

We made it to this point- and that's saying a lot! It has been a truly difficult week- crazy days. On Monday night we decided to stay closer to the hospital to maximize our time with Grace- so we cashed in our airline miles for a night at the Embassy Suites: Paradise Valley/Scottsdale. The hotel was wonderful- very restful, probably the last good night's rest we've had since that point! We were offered a VERY discounted rate to stay there a few more nights because of our situation, but we were informed that we had been offered a sort of "grant" at the Ronald McDonald House next to the hospital. The Nick and Kelly Heart Foundation pays for all cardiac families to stay as long as needed, free of charge. I didn't expect the room to be very nice- but it far surpassed my expectations- it was nicer than some hotels!! I have taken for granted each time I walk into a McDonald's and see the change collector. I always think about throwing money in, and often throw in my change, but I never, ever thought it would be me who would use it and need it. Furthermore, the RMH told me that they get NOTHING from McDonald's outside of what comes from those boxes- isn't that a shame!!!???!!

Wednesday morning I woke up feeling good about the surgery- I was far more calm than I ever could have imagined- we all had really good vibes about the day. To my dad- I saw a coke truck- he'll understand that reference. We settled in for a long wait after kissing her all over and wait we did. They wheeled her away at 8 am and we got a call around 10 am letting us know the prep was completed and the operation had begun. About 1:30-ish Felix and I started to get anxious so we walked into the area where her post-op would take place. Our nurse immediately came over and explained that there had been some complications- and they couldn't find us. I was shocked as I'd already gotten 2 phone calls from the OR, but I wasn't in the right frame of mind to question it. Apparently, the shunt was too large for her tiny arteries. Imagine the artery is the width of your pinky finger and you try to attach a shunt the size of your middle finger width- too much blood for a smaller area, a sort of bottleneck if you will. So- they had to start over. At 1 pm, they begun phase 2 of the operation. They cut away some of her artery to add a patch to it, which would increase it's width, making it easier to handle the amount of blood flow. The surgery was a success and she came out around 5 pm. After the surgery her oxygen saturation levels were still very low- but she was on a ventilator that was breathing for her. The docs messed with the settings all night. Around 10 pm she was pretty stable so Felix and I went back to the RMH and passed out. I woke up to check on her around 5 am, and was told that they changed her ventiltator because her sats were still low, but she was doing better. I went back to sleep and was woken up by the surgeon calling to inform us that Grace was fighting for her life- her sats were dangerously low and even after increasing/decreasing settings there was still no change. The doctor was worried that something had gone wrong with the operation and was calling to get our authorization for them to do a cardiac catheter so they could map the blood flow for any kinks, blockages or twists. We ok'd it and jammed to the hospital. We walked in on her getting wheeled away. She was put under anesthesia again and it would be several hours before we would know anything. Two hours later, the surgeon informed us that because of her tiny size they had a difficult time finding a vein large enough, so they hadn't been able to start just yet, but were expecting they would be starting and that we would be waiting a few more hours- pure TORTURE!!! The surgeon came back later with the results- it wasn't the surgery, and it wasn't her bloodflow. Somehow her lungs were compromised and the reason was unknown- it could be RSV, Pneumonia, Preemie lungs, etc. The doctor wanted to go in and open her chest back up and just see if doing that (allowing the lungs to get more movement- with the swelling and her closed they may be too tight) and see if that would work. Again, we were told it would be hours of waiting. Felix stayed in her room, by himself and I went back to the RMH to shower. As I was getting ready to come back to the hospital the staff stopped me to ask if the hospital social worker had gotten in touch with me. I panicked, thinking it was about Grace, but it was because they had a vacancy at the newer RMH on the hospital campus, eliminating the need to drive. I agreed to switch rooms, and went back to check-out and pack-up. While packing, Felix called me ecstatic- he had run into the surgeon on his way to the bathroom, of all places. The surgeon let him know that it worked and he'd be by to explain in a bit. HUGE sigh of relief! The doctor came back to tell Felix that he was somewhat shocked that it only was that simple, but obviously optimistically cautious. It would take a few more hours to be sure. Felix met us at our new room- AMAZING!! The room was beautiful- huge too! We are blessed with the RMH being in our lives. We met the doctor back in Grace's room and he gave us our first smile- that said volumes! She was doing amazing. We still aren't in the clear, but several doctors have given me a thumbs-up. The doctors had to leave her chest open (with plenty of sterile "plastic" over it) and we can see her heart beating- but she seems so much better and the whole mood of the staff has changed drastically. Another surgeon just walked in while I was typing and gave me two more thumbs-up! YEAH GRACIE!!! Stay tuned- more rollercoaster coming your way soon. God bless all of our friends and family- for your prayers, thoughts and support. We love you all!

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