Here's the latest on Katie.
Here's the latest on Katie.
67 July 31, 2005 at 05:42 PM CDT
"What's my name? Who's my daddy? Beware......" Okay, I stole this from the Zombies, but this just seems so appropriate all the way around...........
Sorry about not updating sooner, but just haven't had time to sit down at the computer. No more As the Chest Tube Drains...........will have to think up a new name for the sequel if we stay here much longer.
I have good news and bad news. The good news is that Katie's chest tubes are out- yes! Finally! Hurray! One major step closer to home. It was not pretty, though. Gave her a full dose of morphine and 1/2 of versed and it didn't even phase her. She was screaming and crying just going into the treatment room and decided that she would much rather take her chest tubes home with us still intact, complete with drainage box........I know the morphine had to have dulled the pain some, but it couldn't have completely as she was literally screaming at all of the appropriate times that it looked like it would have really hurt. The poor fellow doing the job was trying to hurt her as little as possible, but since the tubes had been in for what? some 18 days now, the stitches and pacing wires were all imbedded and crusted in. When "we" pulled the chest tubes%2%2, one came out with a long white catheter type thing attached to the end of it. The other one didn't have one............they assured me that this could be entirely possible - that there might have only been one..........well, I certainly hope so..........otherwise, the other one is still up in her chest????? Katie was so upset and so agitated that the fellow said he didn't dare try and remove that really imbedded stitch at the top of her incision, so it is still there. He said it should just work it's way out...........hope that's true, too, and it doesn't get infected. It's not now, but, of course, we are still on IV antibiotics. Dunno what happens when those are stopped...........
And Jackie and Aiden and Michelle and Taryn and Ben, thank you so much for the packages. They were waiting there after the tube removal and really helped immensely. Thank both of you moms so much for thinking of us. Katie is working on her "thank you" notes now..........
And Dawn and Spencer stopped by to see us yesterday. That was such a treat. Spencer is such a cutie . They brought by brownies, which Katie has been chomping on periodically, and some flowers. Katie was pointing her "tulips" out to everyone who entered her room - hey, beats the heck out of showing them her panties. And Dawn, I apologize, I just got your voice mail this morning. I forget to check my phone as it just doesn't work in the hospital. It was so wonderful to finally meet y'all.
BTW, Mrs. Carol and Papa. Just got yours, too. Kim was so sweet and gave us a calling card. I am going to try and figure out how to use it, so Katie can give you a call.
Haven't heard the decision on the gut malrotation, so not sure what the "verdict" is...........
Katie's INR continues to fluctuate. 2.4 yesterday; 3.8 today (which I am fine with the 3.8 - I'd rather be slightly higer than lower); 1.5 mg coumadin tablet Friday; 2.5 last night. Dunno why we dropped to 1.5 - sounded logical at the time, but now, looking at Katie's chart I am keeping, it doesn't. I know coumadin is supposed to take 3-5 days to load into the system, but Katie appears to be registering changes much sooner. Might be due to how little food she is consuming - dunno. Will have to try and get with Al L.(licensed coumadin guru) and see what he can make of this to help us figure it out.
Continued in Part II..............
66 July 31, 2005 at 05:41 PM CDT
Update part II:
Little Jerra is continuing to make steady progress. She has a long way to go, but she is definitely headed in the right direction. I talked to Ida today and she is such a phenomenal woman........so strong, so faithful, so compassionate, and so inspiratonal........... Please do keep them in your prayers.
Please add little Evyn and her parents Andy and Tammi to your prayers. They were well on their way to being discharged Friday when Evyn's pleural effusion doubled in size within a 24 hour period. Her chest tubes were already pulled, so now they have had to reinsert them. For three days, poor little Evyn was NPOed, only to find out some four hours later each time that her INR was too high to perform the procedure (Evyn is on coumadin post EC fontan as a precaution). It was finally done this morning. She immediately drained 70 ml, so she is back on suction and oxygen (nasal). Her sats have dipped down into the sixties and no one is quite sure why. So please pray for little Evyn and her mom and dad's sanity.
Now the really bad news. Tommy and his mom Colleen stopped by to see us Friday before Tommy's routine checkup with his PC (they are a delight - that is not the bad news. Tommy just had a tricuspid valve replacement in June - the same kind of mechanical valve that Katie just got for her common AV valve. He was admitted to the hospital and is right down the hall from us. His mechanical valve is clotted shut!!! His hypoplastic left ventricle is miraculously pumping all of the blood to his body! Otherwise, he would be dead! How scary is that? You would never know by looking at this little boy that he is so critically ill right now. He is running around, laughing and charming everyone in sight. He is "stable" on heparin right now to try and prevent a stroke since they know a clot is sitting there with a cath scheduled for Monday to figure out a plan. I am scared to death for them, as this probably means more surgery. His parents are relatively calm, but I think are definitely shell-shocked. They just spent much of June here, thinking that they wouldn't have to see this place again - at least as an inpatient - for a long, long time. Now this. There is some speculation that Tommy had just enough left ventricle to allow blood to pool there, thus permitting a clot to form.
This also scares me to death as Katie has both ventricles. Her common AV valve is in the right ventricle. She does have both a VSD and an ASD, but are they large enough to keep blood from pooling and clotting as well? I don't know, but it is very, very frightening. If Katie's valve clots shut, she is dead, as that is her one and only: her mital and tricuspid are merged. Could we be potentially in this same situation one day? Now I am second-guessing everything..........I don't know. I don't know. I do hope that Dr. Bove can shed some light on this before we get out of here or I will never get any rest. And that poor man has been in one crisis in the OR afer another. I don't know how he maintains the pace that he does and still manages to be so calm, cool-headed, and compassionate. Please pray for Tommy and his parents. Please pray for Dr. Bove and the rest of Tommy's cardiac team while they figure out a plan. And please pray that Katie is not at risk of this same thing happening to her..............
Well, now you know why it has been hard to come update. Lots going on. Katie is doing so much better - really she is. Our biggest screamfest today was over a bath, no less - a little of an ordeal in trying to keep her IV hand and chest dry. Everyone around us was concerned about what procedure our child was having done - nope, no procedure - just a bath. Then Katie started crying because she couldn't go swimming................"I just want to go home to my Texas."
I know there are some gaps and will try to fill those in later. Much love and I DO so appreciate all the support and prayers. J.
Trying to send all the prayers and strength your way. Keep your sense of humor and I hope today turns out to be better than yesterday.
