I'm still officially on a break from blogging, but I did want to let you all know that we heard from MUSC yesterday and the surgeon at MUSC would like to try to wait until August to do Anna Grace's next surgery, the Fontan. So, the plan right now is that her cardiologist is going to follow her closley throughout the summer and as long as she remains stable then the plan will be surgery in August. Right now her sats are hanging out at about 75 so I think that is the big thing they are going to be watching for.
So, we are planning a few family vacations this summer to have fun and make some memories together before surgery. It will be nice not to have to restrict swimming this summer because lets face it... its the south. It's hot here in the summer and it is almost impssible to play outside in the summer in the south without getting in the water... pool... lake.... sprinkler.... whatever. So, that is certainly a positive about having an August surgery.
Oh... I also want to update you about the 5K race that I am helping to plan. You may remember the race is coming up on April 14. This is the first 5K that Palmetto Hearts has ever planned and no one was really sure how many people/runners to expect. The committee has hopeful that we would have about 150 registered runners for the event. I am hapy to report that as of today there are 253 registered runners for the Palmetto Hearts 5K Walk and Run. Isn't that amazing??? We are expecting more people to come to the "festival" as well so we are really planning for abour 400 people to show up on race day. This has far exceeded any of our expectations and we are so thankful and humbeled by the support our friends, family and the community has shown to our heart babies. Truly we are thankful and so grateful. We are excited about the race, and to be honest I am a little nervous about all the details coming together! We are praying for God's blessing of terrific weather and for a safe fun filled race day! Thank you spedifically to my friends and family who have registered and helped and volunteered. It has meant to much to me. Truly.
Thank you for continuing to check our BLOG even though I am not really officially blogging right now. Thank you also for continuing to pray for Anna Grace.
Wednesday, March 28, 2012
Sunday, March 4, 2012
Signing Off For A While
We are home from MUSC now. We ended up not having to spend the night in the hospital after all. It turns out that what appeared to be a narrowing of her left pulmonary artery turned out to be a fold of her left pulmonary artery. So, the solution would have been to put a stent in, however, since the plan is for surgery for her in the next few months the cath doctor felt it was best to leave it alone and let the surgeon fix it during open heart surgery. If the surgeon decides not to do open heart surgery in the next few months then we will need to go back to MUSC for another cath to have a stent put in. We should hear back from the surgeon in the next couple of weeks either way.
Anna Grace woke up far better than expected from anesthesia. She was fussy for about an hour and then did really well. She tolerated water, milk & jello very well after waking up. Since then she has acted normally like nothing ever happened and our attempts to keep her quiet and playing gentle have been futile. She is back to her old self again!
I want to thank you all for praying for Anna Grace and our family. I feel that the Lord has certainly answered each one of those prayers in carrying Anna Grace through this. I am humbeled by your faithfulness to continue to pray for my family. Truly so hambeled.
Having said all that, I want to let you know that I won't be posting on the BLOG for a while. I'm not sure when I'll get back to it. I feel that any spare time I have right now needs to be spent in prayer and communion with the Lord. I am really struggling with something right now that the Lord will guide me through if I just seek Him. So that is what I am going to do in a most earnest fashion. Thank you friends for understanding!
Anna Grace woke up far better than expected from anesthesia. She was fussy for about an hour and then did really well. She tolerated water, milk & jello very well after waking up. Since then she has acted normally like nothing ever happened and our attempts to keep her quiet and playing gentle have been futile. She is back to her old self again!
I want to thank you all for praying for Anna Grace and our family. I feel that the Lord has certainly answered each one of those prayers in carrying Anna Grace through this. I am humbeled by your faithfulness to continue to pray for my family. Truly so hambeled.
Having said all that, I want to let you know that I won't be posting on the BLOG for a while. I'm not sure when I'll get back to it. I feel that any spare time I have right now needs to be spent in prayer and communion with the Lord. I am really struggling with something right now that the Lord will guide me through if I just seek Him. So that is what I am going to do in a most earnest fashion. Thank you friends for understanding!
Friday, March 2, 2012
At MUSC - The Waiting Game
We are currenlty at MUSC and Anna Grace is having her heart cath as I type this post. It has been quite a day already!
We arrived in Chalreston last night around 9:00 pm. The sweet family who loaned us their vacation home during Anna Grace's Norwood and Glenn also loaned us their vacation home for this cath. My parents also drove down with us to help take care of Zachary and to be here as support for Anna Grace and for us. After a couple hours last night it was way passed time to turn in, but Anna Grace was not having any of it. I'm not sure how long she cried for, but it took her a while to wind down. It was late. None os us slept well. We got up early and arrived at the hospital at 7:15 am as instructed.
After checking in with admitting we headed up to the cath lab and checked in with them. They were able to obtain oxygen saturation on her (80) and also a blood pressure. They wanted an EKG, but they didn't realize it was Anna Grace they were dealing with. She wasn't cooperating so they said they would wait until after she had her Versed. A cardiologist that we had never met before came in to talk with us about yet another study they wanted Anna Garce to be a part of. After explaing to us the study and the risks we decided not to partake in this study. It's hard to make this kind of decision on the fly.
Then we began waiting..... Anna Grace was a trooper even having no food, water or milk. However, she is Anna Grace and we had to start strolling the halls until the playroom opened at 10. After the playroom opened Zachary and the grandparents came to the hospital and played with us in the playroom until the nurse came to get us and told us it was time.
After returning to the cath lab she was given a full dose of Versed which is a sleepy, good feeling medicine. But, it didn't phsae Anna Grace. She was still walking around saying she wanted to go for a walk. Hmmmm... so after anesthesia had a look for themselves they authorized an additional medicine, Ketamine (sp?) which was given on top of the Versed. It finally did calm her, but never made her sleepy. They finally were able to take her around noon. She wasn't screaming when they took her, but she was whining.
We were told the cath should take 3-4 hours. We have had two updates so far. The first update was that they had completed the sedated echo. The second update was that they had the catheters in place and were taking measurements. This time they are placing a catheter in her groin (arterial access) and one the right side of her neck (venous access).
We still don't know if we'll have to spend the night. It will all depend on what they have to do while in there. I will try to post more later, however, knowing Anna Grace, she is going to wake up from this cath mad as a hornet so it is unlikely that I will be able to make a post becaue it will be a full time job keep her calm and still. I was told she would have to be calm and still for two hours after the cath. Uh.... she's two AND she's Anna Grace. I talked with Anesthesia directly and explained to them her temperment and asked that anxiety medicine go ahead and be ordered from the pharmacy so that it would be there and ready when she comes out of anesthesia. They said they would go ahead and order it. That should help.
Thank you all for praying for her. Considering everything, she did remarkably well this morning and only asked for milk once. She was easily distracted with toys and bubbles. She remained relatively happy unless someone was directly messing with her. Other than all the waiting so far the morning has gone smoothly. We are trusting the Lord with the timing and results of this cath. I will post again when I am able.
Grace to you!
P.S - They just sent me a new update. They are ballooning her left pulmonary artery. Looks like we'll be spending the night.
We arrived in Chalreston last night around 9:00 pm. The sweet family who loaned us their vacation home during Anna Grace's Norwood and Glenn also loaned us their vacation home for this cath. My parents also drove down with us to help take care of Zachary and to be here as support for Anna Grace and for us. After a couple hours last night it was way passed time to turn in, but Anna Grace was not having any of it. I'm not sure how long she cried for, but it took her a while to wind down. It was late. None os us slept well. We got up early and arrived at the hospital at 7:15 am as instructed.
After checking in with admitting we headed up to the cath lab and checked in with them. They were able to obtain oxygen saturation on her (80) and also a blood pressure. They wanted an EKG, but they didn't realize it was Anna Grace they were dealing with. She wasn't cooperating so they said they would wait until after she had her Versed. A cardiologist that we had never met before came in to talk with us about yet another study they wanted Anna Garce to be a part of. After explaing to us the study and the risks we decided not to partake in this study. It's hard to make this kind of decision on the fly.
Then we began waiting..... Anna Grace was a trooper even having no food, water or milk. However, she is Anna Grace and we had to start strolling the halls until the playroom opened at 10. After the playroom opened Zachary and the grandparents came to the hospital and played with us in the playroom until the nurse came to get us and told us it was time.
After returning to the cath lab she was given a full dose of Versed which is a sleepy, good feeling medicine. But, it didn't phsae Anna Grace. She was still walking around saying she wanted to go for a walk. Hmmmm... so after anesthesia had a look for themselves they authorized an additional medicine, Ketamine (sp?) which was given on top of the Versed. It finally did calm her, but never made her sleepy. They finally were able to take her around noon. She wasn't screaming when they took her, but she was whining.
We were told the cath should take 3-4 hours. We have had two updates so far. The first update was that they had completed the sedated echo. The second update was that they had the catheters in place and were taking measurements. This time they are placing a catheter in her groin (arterial access) and one the right side of her neck (venous access).
We still don't know if we'll have to spend the night. It will all depend on what they have to do while in there. I will try to post more later, however, knowing Anna Grace, she is going to wake up from this cath mad as a hornet so it is unlikely that I will be able to make a post becaue it will be a full time job keep her calm and still. I was told she would have to be calm and still for two hours after the cath. Uh.... she's two AND she's Anna Grace. I talked with Anesthesia directly and explained to them her temperment and asked that anxiety medicine go ahead and be ordered from the pharmacy so that it would be there and ready when she comes out of anesthesia. They said they would go ahead and order it. That should help.
Thank you all for praying for her. Considering everything, she did remarkably well this morning and only asked for milk once. She was easily distracted with toys and bubbles. She remained relatively happy unless someone was directly messing with her. Other than all the waiting so far the morning has gone smoothly. We are trusting the Lord with the timing and results of this cath. I will post again when I am able.
Grace to you!
P.S - They just sent me a new update. They are ballooning her left pulmonary artery. Looks like we'll be spending the night.
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