Last Thursday we had a trip to Pittsburgh. First we saw Neurosurgery. The appointment went great! They said that nothing is wrong and they don't ever need to see her again, yay! The doctor actually said, "Congratulations, you don't need a Neurosurgeon! I don't get to tell many people that!" They were mostly checking to make sure she didn't have excess fluid and she doesn't. Her head is a little big, but is in the 50-75% range which she said is still normal. We are so glad that we can cross that one off our list!
While we were waiting for the doctor to come in she was put on her new vent. The main reason we decided to change ventilators is because of the battery. The old one had a 15 lb battery that we had to lug around with us if there was no place to plug it in. This one had an internal battery and a tiny little detatchable battery. It will be so much easier! And the other reason is because the old one had 2 hoses and this one only has 1. Less for Fiona to play with! (In case anyone would like to know we changed from the LTV 1150 to the Trilogy 200.) She is doing great on it and yesterday we changed her Pressure Control from 12 to 10. She has been doing awesome with her "sprints" off of the vent. Today she was off for 5 hours and 45 minutes twice! She is chugging right along and we have high hopes that it won't be too much longer until she is off that dang thing!
Those were supposed to be the only 2 appointments we had, but while we were in the waiting room I called her surgeon to see if he could fit her in. Her O has had the most awful smell to it. Not a sweet smell like before. It was just a BAD smell. He is so awesome and got us in right away. He had to "debreed" her O (he had to take off all of the dead, black skin that was causing the smell). I couldn't even watch. It wasn't hurting her because the skin is dead and underneath it is just the Gortex patch. She was just really mad because the nurse was holding her legs down. Tom thought it was the coolest thing ever though, haha! Now it looks and smells much better!
CAUTION: O PICTURES BELOW!!
Before the debreeding:
After the debreeding:
While we were waiting for the doctor to come in she was put on her new vent. The main reason we decided to change ventilators is because of the battery. The old one had a 15 lb battery that we had to lug around with us if there was no place to plug it in. This one had an internal battery and a tiny little detatchable battery. It will be so much easier! And the other reason is because the old one had 2 hoses and this one only has 1. Less for Fiona to play with! (In case anyone would like to know we changed from the LTV 1150 to the Trilogy 200.) She is doing great on it and yesterday we changed her Pressure Control from 12 to 10. She has been doing awesome with her "sprints" off of the vent. Today she was off for 5 hours and 45 minutes twice! She is chugging right along and we have high hopes that it won't be too much longer until she is off that dang thing!
Those were supposed to be the only 2 appointments we had, but while we were in the waiting room I called her surgeon to see if he could fit her in. Her O has had the most awful smell to it. Not a sweet smell like before. It was just a BAD smell. He is so awesome and got us in right away. He had to "debreed" her O (he had to take off all of the dead, black skin that was causing the smell). I couldn't even watch. It wasn't hurting her because the skin is dead and underneath it is just the Gortex patch. She was just really mad because the nurse was holding her legs down. Tom thought it was the coolest thing ever though, haha! Now it looks and smells much better!
CAUTION: O PICTURES BELOW!!
Before the debreeding:
After the debreeding:
It is so hard to get a good picture of it now because she moves around so much! But you get the idea!
P.S.: I can't believe she will be 1 in 4 days! Be on the lookout for a major picture post, haha!
All great news! I got Harper's fashion Co-Ban online. It's actually made by Co-Flex, a competitor but is the same stuff. They have the patterns but also variety packs with bright colors. Google Co-Flex and look form the color packs. Any med supply company that sells it has the colored options. We have the yellow bumblebee, pink with purple hearts, neon green, red and baby blue. Let me know if you can't find it and I'll send you the specific website.
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