gijanet
Well-known member
okay, a week late, but still considered her 2 month post-op! (Has it really only been two months..........that surreal world of Michigan seems like a lifetime ago). For Katie fans, you know I haven't updated her carepage in forever. That is going to be quite a formidable task when I get around to it, but, anyway, I just had to share with y'all.
Katie's sats were 99%!!!!!
Can you believe it???? Katie has never had oxygen sats of 99! She was 92 at birth and continued spiraling down from there. Even with the BT shunt and glenn, she was at 77% prior to her fontan and valve replacement. I hope this continues for a long, long, long time. She is a bundle of energy - yes, even more so than before, if you can believe it!
Now not all of it was great news, but most was. Her EKG looked fine - no more arrythmia problems for now............and we hope that also holds for a very long time. Echo looked good. X-ray looked good. Valve function looked good. Heart pressures were supposedly good, but her captopril was increased by her new PC. Don, being forever male, did not ask why it was being increased, since everything looked great. I, forever being anal-retentive me, want to know why her captopril is being increased if everything "is great." Obviously, there is a reason why the PC felt a need to increase the dosage. Maybe just growth, maybe not! Needless to say, I was working and didn't go to the checkup. Don did...............sigh! I'm trying to hand the reins over, but it is hard, since I usually write everything down and ask two hundred questions, and Don just sits and absorbs and writes down nothing...............argh!
And Katie's INR has dropped. The blood draw last week was 2.0, which I don't like at all..............especially after Tommy's valve clotted shut. We upped her dosage to 2.5 on alternating days with 2.0. (We were on a straight 2.0, which had been holding her at 2.5, but I thought that was too close for comfort, anyway.) It was 2.4 this week, so now we are going to do 2.5, 2.5, 2, etc., to see if that works................so weekly blood draws until we get a handle on this..............no more of the monster blood tech, though. Don just goes ahead and takes her to Cook's in Fort Worth now because they always manage to get blood on the first poke.
Speaking of, we kind of got fed up with going through Cook's to get the home test unit, so Don just went ahead and called QAS. Spent about thirty minutes on the phone with them while they got all of the PC and insurance info. They are going to process all of this and fight the insurance battle for us. Rep said it would take about six weeks, but he would get a unit for us............famous last words, but I am going to hold him to it. I am sure they are usually sympathetic - part of their job - but this guy really seemed like he was.......for Don to say so, I know he had to have been ...........guess because it's for a kiddo so young.
Well, that's us for now. Katie is ...............well, Katie, just non-stop now! We can't take our eyes off of her for a minute. Today, my mom and dad stopped by. Since my dad chain smokes, we all were outside. Katie got hot and wanted to go in. Next thing we know, she is at the door butt "nekkid." Says her clothes were wet, giggled, and slammed the door. Well, the little imp locked it. Soooooooo, we have to ring on the doorbell until Trip finally breaks away from his Gamecube long enough to come answer the door and let us in. I go inside and discover why Katie was nekkid. She had tried to fill one of her medicine syringes with water from the automatic water dispenser on the fridge. Her soaking wet clothes littered the floor into the kitchen and the kitchen floor was soaked for a 6 foot square area. Needless to say, she had not been very successful at filling her syringe because she was "thirsty."
Sigh.............we have managed to survive two weeks of pre-K two days a week. The director offered us three days a week at no additional charge since Katie is the only one going for only two days...............but Katie is not one bit interested in going three days a week because school is "boooooorring!" They didn't like her fingerpainting the table with her pudding at lunch..............imagine that! Sigh! I think we have a very long fourteen years ahead of us.
Much love to you all. Janet
Katie's sats were 99%!!!!!
Can you believe it???? Katie has never had oxygen sats of 99! She was 92 at birth and continued spiraling down from there. Even with the BT shunt and glenn, she was at 77% prior to her fontan and valve replacement. I hope this continues for a long, long, long time. She is a bundle of energy - yes, even more so than before, if you can believe it! Now not all of it was great news, but most was. Her EKG looked fine - no more arrythmia problems for now............and we hope that also holds for a very long time. Echo looked good. X-ray looked good. Valve function looked good. Heart pressures were supposedly good, but her captopril was increased by her new PC. Don, being forever male, did not ask why it was being increased, since everything looked great. I, forever being anal-retentive me, want to know why her captopril is being increased if everything "is great." Obviously, there is a reason why the PC felt a need to increase the dosage. Maybe just growth, maybe not! Needless to say, I was working and didn't go to the checkup. Don did...............sigh! I'm trying to hand the reins over, but it is hard, since I usually write everything down and ask two hundred questions, and Don just sits and absorbs and writes down nothing...............argh!
And Katie's INR has dropped. The blood draw last week was 2.0, which I don't like at all..............especially after Tommy's valve clotted shut. We upped her dosage to 2.5 on alternating days with 2.0. (We were on a straight 2.0, which had been holding her at 2.5, but I thought that was too close for comfort, anyway.) It was 2.4 this week, so now we are going to do 2.5, 2.5, 2, etc., to see if that works................so weekly blood draws until we get a handle on this..............no more of the monster blood tech, though. Don just goes ahead and takes her to Cook's in Fort Worth now because they always manage to get blood on the first poke.
Speaking of, we kind of got fed up with going through Cook's to get the home test unit, so Don just went ahead and called QAS. Spent about thirty minutes on the phone with them while they got all of the PC and insurance info. They are going to process all of this and fight the insurance battle for us. Rep said it would take about six weeks, but he would get a unit for us............famous last words, but I am going to hold him to it. I am sure they are usually sympathetic - part of their job - but this guy really seemed like he was.......for Don to say so, I know he had to have been ...........guess because it's for a kiddo so young.
Well, that's us for now. Katie is ...............well, Katie, just non-stop now! We can't take our eyes off of her for a minute. Today, my mom and dad stopped by. Since my dad chain smokes, we all were outside. Katie got hot and wanted to go in. Next thing we know, she is at the door butt "nekkid." Says her clothes were wet, giggled, and slammed the door. Well, the little imp locked it. Soooooooo, we have to ring on the doorbell until Trip finally breaks away from his Gamecube long enough to come answer the door and let us in. I go inside and discover why Katie was nekkid. She had tried to fill one of her medicine syringes with water from the automatic water dispenser on the fridge. Her soaking wet clothes littered the floor into the kitchen and the kitchen floor was soaked for a 6 foot square area. Needless to say, she had not been very successful at filling her syringe because she was "thirsty."
Sigh.............we have managed to survive two weeks of pre-K two days a week. The director offered us three days a week at no additional charge since Katie is the only one going for only two days...............but Katie is not one bit interested in going three days a week because school is "boooooorring!" They didn't like her fingerpainting the table with her pudding at lunch..............imagine that! Sigh! I think we have a very long fourteen years ahead of us.
Much love to you all. Janet
