St. Louis
We're in St. Louis now. We came in this morning from Jeff City. Going to Jeff City last night we only ran into blizzard-like conditions once. : ) Things were better after that, though the wind was horrid most of the way. This morning things were MUCH better, drive-wise.
Our first appointment was during nap time. Blaze had his echo and EKG done with a dvd player under his nose. It really helped and seemed to distract him. We met with a nurse who guides families through the heart cath procedure. She remembered us from last year and was really impressed with his size and growth. She answered our questions and gave us instructions for tomorrow. We are the first ones going in tomorrow. We're grateful, even though it's a 6:45 check in at admissions. He won't be able to have solid food after 1 a.m. or drink anything but water or apple juice after 5 a.m. Blaze typically wakes up a little after 6, so he won't have a chance to get hungry before he goes in for the procedure. The hardest point of the procedure is getting access to his vein. Depending on what they find once they "get in", they may need to observe him overnight. He will be sedated for the time after the procedure where he must lie still. We left that appointment feeling pretty confident on how things would go.
Then the x-ray. After waiting a long time to get in (though there are flat screens, x-box 360 games and books galore to entertain in the x-ray area), the x-ray did not go so well. It took three people, including Daddy to hold Blaze down, and then they had to do it 3 times because he still wouldn't lay still. He's just amazingly determined for such a tiny fellow. He did get 3 stickers for his troubles.
After the x-ray, we went up to talk with the anesthesiology department. The woman there was in the NICU when Blaze was transported there immediately after birth. She was astounded at how well he looked. It made us realize how small he was last year when he was here for his surgery. We're so grateful he's doing so well. She said, "it must have been a hard choice, deciding whether he should have surgery or not. Did they offer hospice care as an option?" I was just shocked. We were able to share our testimony of Blaze with her, and give God the glory for how well he's doing. She agreed that it had to have been God, for him to be doing this well. She was quite impressed with him. She ran a pulse-ox, checked his weight (again) and talked with the doctor. He said not to count on him spending the night, not to take the medicine we were told he should take before and in general sort of contradicted our first meeting. You've gotta love days like this. We're following his instructions for the meds, but we're prepared either way for Blaze to stay at Children's tomorrow.
By this time it was about 2:20, we hadn't eaten lunch and Blaze never did get that nap. So, here it is at 4:39 p.m. Both Tim and Blaze are napping, and I'm in the Business Center of the hotel updating the site with just socks on my feet. Blaze's crib trapped my shoes and there was no way I was going to wake him up to get them. It's been a crazy day, but we're grateful we're here safe and sound and have heard so many encouraging things today. Blaze noticed several things at the hospital that caught the attention of various doctors. Everyone's telling us how observant he is and how he's thriving. It's so good to hear. Music to a parent's heart.
We love you all. I'll update this tomorrow, once his cath is done and he's out on the floor.
Joy
Our first appointment was during nap time. Blaze had his echo and EKG done with a dvd player under his nose. It really helped and seemed to distract him. We met with a nurse who guides families through the heart cath procedure. She remembered us from last year and was really impressed with his size and growth. She answered our questions and gave us instructions for tomorrow. We are the first ones going in tomorrow. We're grateful, even though it's a 6:45 check in at admissions. He won't be able to have solid food after 1 a.m. or drink anything but water or apple juice after 5 a.m. Blaze typically wakes up a little after 6, so he won't have a chance to get hungry before he goes in for the procedure. The hardest point of the procedure is getting access to his vein. Depending on what they find once they "get in", they may need to observe him overnight. He will be sedated for the time after the procedure where he must lie still. We left that appointment feeling pretty confident on how things would go.
Then the x-ray. After waiting a long time to get in (though there are flat screens, x-box 360 games and books galore to entertain in the x-ray area), the x-ray did not go so well. It took three people, including Daddy to hold Blaze down, and then they had to do it 3 times because he still wouldn't lay still. He's just amazingly determined for such a tiny fellow. He did get 3 stickers for his troubles.
After the x-ray, we went up to talk with the anesthesiology department. The woman there was in the NICU when Blaze was transported there immediately after birth. She was astounded at how well he looked. It made us realize how small he was last year when he was here for his surgery. We're so grateful he's doing so well. She said, "it must have been a hard choice, deciding whether he should have surgery or not. Did they offer hospice care as an option?" I was just shocked. We were able to share our testimony of Blaze with her, and give God the glory for how well he's doing. She agreed that it had to have been God, for him to be doing this well. She was quite impressed with him. She ran a pulse-ox, checked his weight (again) and talked with the doctor. He said not to count on him spending the night, not to take the medicine we were told he should take before and in general sort of contradicted our first meeting. You've gotta love days like this. We're following his instructions for the meds, but we're prepared either way for Blaze to stay at Children's tomorrow.
By this time it was about 2:20, we hadn't eaten lunch and Blaze never did get that nap. So, here it is at 4:39 p.m. Both Tim and Blaze are napping, and I'm in the Business Center of the hotel updating the site with just socks on my feet. Blaze's crib trapped my shoes and there was no way I was going to wake him up to get them. It's been a crazy day, but we're grateful we're here safe and sound and have heard so many encouraging things today. Blaze noticed several things at the hospital that caught the attention of various doctors. Everyone's telling us how observant he is and how he's thriving. It's so good to hear. Music to a parent's heart.
We love you all. I'll update this tomorrow, once his cath is done and he's out on the floor.
Joy
posted by Blaze @ 2:25 PM
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