Hey everyone,
So sorry I have not updated since leaving for California. We did not bring our laptop as it is pretty much shot from spending a year in Afghanistan with Rod. There are no computers at our hotel so we have had to wait until being at the hospital to use their computers. I also don't have a way to add pics from this computer. So sad, as I have taken some good ones since being here. Oh well, will add them later.
Since arriving, we have totally enjoyed the beautiful California weather. We've been wearing jeans and jackets, so different from Texas. Our first day, after stopping at the first In-N-Out Burger we could find, we finally made it to our hotel and spend the rest of the day exploring the grounds around the hotel which are quite nice. The boys, Nolan & Rod, brought their baseball gloves so they have taken every opportunity to go out and play catch since the weather is so great.
Sunday morning, we were able to watch the Women's World Cup game in our hotel lobby on the big screen with other USA fans. Unfortunately, we lost but it was a fun game to watch. We then walked to the nearby movie theater and took in a movie together as a family.
Monday, we had planned to go up to San Francisco for the afternoon and catch the Giants game that night. Unfortunately, we were having trouble getting tickets online so decided to try our luck at the gate. Our luck turned bad, as the only tickets available were Standing Room only. Rod & I were not up for spending 3 hrs. standing with kids so decided we would shoot for Friday night's game instead. We then went to a nearby park and while Reagan played, the boys played catch again near the park. It was so great being out as a family and letting the kids play without sweating to death until.....a little boy accidentally knocked Reagan over at the park. She was on a platform about one step high and lost her balance and fell to the ground. She immediately began crying and had a bloody nose. After finally getting her calmed down, we decided to find somewhere to have dinner and then head back to our hotel in San Jose & call it a night. Fortunately, we found a nice casual place where we could sit outside and eat with our bloody nosed daughter. The place we ate were kind enough to give us a cloth to put ice in to try to stop the bleeding. As Reagan takes aspirin daily, it was quite the challenge. In fact, it wasn't until we finally got back to our hotel, bathed her, and held her down with ice on her nose for quite awhile, did it finally quit bleeding. We put a band-aid across her nose to protect it from getting scraped again. The boys were teasing her and calling her the villain on the new Harry Potter movie because she looked like she didn't have a nose. To which, she let them know how she felt about that comment. Ha!
Tuesday, was Reagan's appt. in the Heart Center. She got an echo and we met with the cath/anesthesia team about her cath. We then were able to enjoy a little outside time again by our hotel pool. It was a little cool to swim but felt good just basking in the sun. That night, we were able to connect with some sweet heart friends we have met through this journey, the Nelsons. Justin & Victoria's daughter Moriah has the same heart condition as Reagan and are such a sweet family and testimony to persevering this life with a special needs daughter. It was great to share the company of their family and see their newest addition, baby brother Jadon, whose only 2 wks. old. Thank you Nelsons for a fun night of food, friends & fellowship!
And then we make it to today, Wednesday, which has been quite a day in itself. We have been at the hospital since 7am this morning. Reagan was the first cath of the day at 8:30. They had reserved 4 hrs. for her in the cath lab but as we know, Reagan usually keeps the doctors longer than expected. The cath showed all good numbers as far as pressures in her heart but it unfortunately showed she had narrowings in 4 of her pulmonary arteries which they were able to balloon and open up more. We then got the dreaded call about the time she should be finished telling us the cardiologist wanted to talk with us. He told us Reagan's coronary arteries, which Dr. Hanley severed in her last surgery but then miraculously repaired and saved her life, had a narrowing that needed to be addressed. We had to sign a new consent for them to go in and balloon that artery with hopes that it would open up and allow more flow. Otherwise, a stent would need to be placed in that artery and that is not a favorable option as those tend to clot more often. This is something adult cardiologist deal with more & so one was called in to work along side the pediatric cardiologist to attempt ballooning the coronary artery. We signed the consent, said a prayer together, and then anxiously awaited the results. It was a stressful time and not what we had anticipated at all, but finally we got the call that they were done and it went well. The cardiologist then took us back into the imaging room and showed us all the pics from the cath and explained each one. The before/after of each artery that was narrowed and then the ballooning of the coronary artery. Oh, by the way, they also explored Reagan's blood clot which they determined to not be a clot after all, but a narrowing and so they also ballooned that area and found better results afterwards. We are so thankful this intervention helped for now and pray that in the coming weeks, months, her vessels will continue to grow and not narrow again. Because of the issue with her coronary artery, we now will have to come back in 6 months for another cath to be sure these areas are doing ok. She is spending the night and will have a lung profusion scan done tomorrow and then hopefully discharge. She had some bleeding and discomfort at her cath site so has had to lay flat for longer than she wants. Hopefully, she will be able to rest and have an uneventful night.
We are sooooooo thankful for all of you, your supportive messages and prayers especially!! Thanks again.
