12 days post surgery - looking great!
We are still here in the hospital...but continue to move forward, so we are trying to be patient.
Found out that Taylor has a mild urinary tract infection along with a wicked cough. Started antibiotics today. Sounds like her congestion is moving out of her chest and she is working hard to get rid of it. She is able to maintain her SATs without the assistance of oxygen and seems overall to be breathing comfortably. She continues to receive nebulizer treatments and chest/back PT to help move all the mucus up and out. Also found out that the anti-coagulant she is on was not strong enough to break up the clot in her leg. Her leg looks great, but she will continue to recieve shots twice a day until it is gone, which might continue when she heads home.
The cardiologists are very pleased and want to move her out of here as quickly as possible which right now sounds like may be this weekend. Still have to move the feeding tube back up to the stomach, tolerate it there and then move back to the bottle. The way Taylor is mouthing her toys and trying to suck on things, Jason and I don't anticipate a problem there. :)
Her incision scar looks amazing and she is already tolerating tummy time, especially to sleep. This evening she even played for a while and I saw one little smile. I was so excited that I made a big fuss which ended up making her cry.
Overall things are looking up. Keep up those prayers! We want Taylor to be completely healthy and stable so that she can enjoy being at home - and stay there!!!
I am staying with her tonight and looking forward to hearing how Cameron did in the swim meet. He was going to try to swim butterfly! :) Em is doing OK - very anxious and clingy when I leave. I keep telling her that as soon as Taylor is well I will be home. Our babysitter Genevive is wonderful and has really been helpful in keeping the kids' routine.
We have had visits this week from friends Elisabeth, Carolyn and Miriam and lots of offers to come by. Since Taylor had a little fever and nasty cough we have limited contact a bit, but now she is looking great. Looking forward to seeing Jason's sister Blaine and our nephew Jake this weekend and my aunt and grandmother later next week - hopefully at home!!!
July 9: Taylor had a GREAT night!!! No need for Oxygen and she was very feisty and played quite a bit. Had a bit of trouble settling the two hours prior to her lowered Methadone dose, but once she had that she slept peacefully even through two nebulizer treatments! She also pulled out her feeding tube for the second time and the doctors agreed to leave it up in her stomach rather than put it back down in her intestine. Way to go Taylor - you just advanced another step and made your wishes known.
Found out that Taylor has a mild urinary tract infection along with a wicked cough. Started antibiotics today. Sounds like her congestion is moving out of her chest and she is working hard to get rid of it. She is able to maintain her SATs without the assistance of oxygen and seems overall to be breathing comfortably. She continues to receive nebulizer treatments and chest/back PT to help move all the mucus up and out. Also found out that the anti-coagulant she is on was not strong enough to break up the clot in her leg. Her leg looks great, but she will continue to recieve shots twice a day until it is gone, which might continue when she heads home.
The cardiologists are very pleased and want to move her out of here as quickly as possible which right now sounds like may be this weekend. Still have to move the feeding tube back up to the stomach, tolerate it there and then move back to the bottle. The way Taylor is mouthing her toys and trying to suck on things, Jason and I don't anticipate a problem there. :)
Her incision scar looks amazing and she is already tolerating tummy time, especially to sleep. This evening she even played for a while and I saw one little smile. I was so excited that I made a big fuss which ended up making her cry.
Overall things are looking up. Keep up those prayers! We want Taylor to be completely healthy and stable so that she can enjoy being at home - and stay there!!!
I am staying with her tonight and looking forward to hearing how Cameron did in the swim meet. He was going to try to swim butterfly! :) Em is doing OK - very anxious and clingy when I leave. I keep telling her that as soon as Taylor is well I will be home. Our babysitter Genevive is wonderful and has really been helpful in keeping the kids' routine.
We have had visits this week from friends Elisabeth, Carolyn and Miriam and lots of offers to come by. Since Taylor had a little fever and nasty cough we have limited contact a bit, but now she is looking great. Looking forward to seeing Jason's sister Blaine and our nephew Jake this weekend and my aunt and grandmother later next week - hopefully at home!!!
July 9: Taylor had a GREAT night!!! No need for Oxygen and she was very feisty and played quite a bit. Had a bit of trouble settling the two hours prior to her lowered Methadone dose, but once she had that she slept peacefully even through two nebulizer treatments! She also pulled out her feeding tube for the second time and the doctors agreed to leave it up in her stomach rather than put it back down in her intestine. Way to go Taylor - you just advanced another step and made your wishes known.
More later once we hear from the doctors...
So happy to hear of Taylors progress.Feistiness can be a very good thing:-) She is quite the fighter! We continue to hold your family and medical team all in our prayers.
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