I meant to post a blog once we got here yesterday, but the trip did not go as planned. For those that follow me on Facebook personally already know what happened, for everyone else, let me catch you up.
Yesterday we left at 10:30 am, I left the other pieces of my heart behind with the remainder of my children, my sister and her husband who is living with us, my nieces and nephew, and my husband. Lily and I started by going to breakfast, which went smoothly. I Should mention at this time that we rented a rental car, as not to put the wear and tear on my vehicle.
We got onto the road and were off, Lily's dad was about an hour and a half behind us, and it truly was a good thing he was. All of a sudden the car started flashing low oil pressure, so I pulled over, we called the rental company and they checked via onstar and everything looked fine, it was just a bad sensor, so we kept going. A few miles down the road, we stopped so Lily could go to the restroom, we came back out to restart the car, and wouldn't you know it, it wouldn't start. Not only wouldn't it start, it was so dead, it locked the key into the ignition. I called my husband, because I was so frustrated, I was afraid I would blow up if I called them. The company ended up bringing us another car, but it took them an hour and a half. By that time, Lily's dad had caught up to us, and had started to give the battery some go juice, and they rental company used a second battery pack to boost the power to jump it. All this time in the heat, (the gas station only had a swamp cooler) had wiped Lily out.
Once we were in the new car, she passed out for a bit, which she totally earned. She never complained, but you could see how hard her heart was working, because I could see the veins throbbing in her neck. The rest of the drive into San Diego was uneventful. We truly enjoyed watching the temperature drop, leaving from the 100+ temps, and arriving to low 70's, was glorious.
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| When we first arrived in San Diego |
She is starting to look older and older to me. Being able to talk with her more and more about what she is about to go through, makes me realize how grown up she is becoming. Although still a child, she is becoming such a beautiful young lady, and with this surgery, we can watch her become a beautiful woman.
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| Lily and Dad at RMH San Diego |
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| Lily and Mom at RMH San Deigo |
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| Lily and Daddy snuggles before surgery consult |
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| Lily waiting for lab draws |
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| At the Rady's Children's Heart Center made out of Legos |
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| This was on the board in the surgery consult room waiting for us. I may not be a McLaughlin anymore, but the sentiment was still the same. |
Ok, so there is a story behind this picture. While we were waiting to see Dr. Nigro, Lily picked up this book, and it was pictures with story of heart children. She was just flipping through it, not reading their stories, and came across this photo. She stopped and studied it then looked at me. The words that came out of her mouth next made me almost cry. "Mommy, I'm the one that is sitting out, while my brothers and sister jump behind me. But here soon, that will be me." I swallowed a lump in my throat and kissed her head and said told her yes she will.
Today during consult we learned that we have to have a cath tomorrow to help balloon the arch in her heart, that the narrowing is not what they want to see. If the ballooning doesn't help, then they will try something different in the OR but it will add length to the surgery. I also felt kind of defeated but it also reaffirmed the choice of coming here, when we were told that her new valve is leaking around it, and blood is once again spilling into the wrong chambers. Several different approaches to surgery were given to us, if the straight forward procedure doesn't work. I will let you know which one is gone with, after surgery is done on Thursday.
Until then, I am going to go enjoy a little bit of time with my girl before she is checked into the hospital this evening, because her INR fell to fast, and we have to start heparin injections. Thank you to all for your continued thoughts and prayers. I will update tomorrow after cath.
Yesterday we left at 10:30 am, I left the other pieces of my heart behind with the remainder of my children, my sister and her husband who is living with us, my nieces and nephew, and my husband. Lily and I started by going to breakfast, which went smoothly. I Should mention at this time that we rented a rental car, as not to put the wear and tear on my vehicle.
We got onto the road and were off, Lily's dad was about an hour and a half behind us, and it truly was a good thing he was. All of a sudden the car started flashing low oil pressure, so I pulled over, we called the rental company and they checked via onstar and everything looked fine, it was just a bad sensor, so we kept going. A few miles down the road, we stopped so Lily could go to the restroom, we came back out to restart the car, and wouldn't you know it, it wouldn't start. Not only wouldn't it start, it was so dead, it locked the key into the ignition. I called my husband, because I was so frustrated, I was afraid I would blow up if I called them. The company ended up bringing us another car, but it took them an hour and a half. By that time, Lily's dad had caught up to us, and had started to give the battery some go juice, and they rental company used a second battery pack to boost the power to jump it. All this time in the heat, (the gas station only had a swamp cooler) had wiped Lily out.
Once we were in the new car, she passed out for a bit, which she totally earned. She never complained, but you could see how hard her heart was working, because I could see the veins throbbing in her neck. The rest of the drive into San Diego was uneventful. We truly enjoyed watching the temperature drop, leaving from the 100+ temps, and arriving to low 70's, was glorious. 
Ok, so there is a story behind this picture. While we were waiting to see Dr. Nigro, Lily picked up this book, and it was pictures with story of heart children. She was just flipping through it, not reading their stories, and came across this photo. She stopped and studied it then looked at me. The words that came out of her mouth next made me almost cry. "Mommy, I'm the one that is sitting out, while my brothers and sister jump behind me. But here soon, that will be me." I swallowed a lump in my throat and kissed her head and said told her yes she will. 
1 comment:
Positive thoughts, Prayers and a virtual hug coming your way. :)
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