Latest update:
July 25, 2005 at 01:08 AM CDT
WEll, I'm gonna write my own soap here entitled "As the Chest Tube Drains." I swear if I see Big Bird one more time, he is going to be plucked, beheaded, and stuffed sitting on one helluva big serving platter...............sigh!
Since Katie still has those darn chest tubes, she can't go play on the playground. When the security guards aren't around, we go careening through the halls..........but mom's only good for so long at that game.............the old gray mare is just that - old and gray! So we visited the bird three times today........
Not much new to report healthwise. Stopped the IV fluids this morning, but kept the IV in, just in case. And yes, Kim, I took your cue. There is a sign up saying NO HEPARIN FLUSH ! 'Course that assumes that people can read. So, we'll see how we are doing tomorrow. Fluid intake is still not where it needs to be - just my two cents. Solids are picking up slightly, if you can call two chicken nuggets picking up............
Question for post-fontan moms or anyone who wants to throw in their two cents: Katie's feet remain puffy and cold, and she complains about her feet hurting when she walks. Even when she was dehydrated yesterday, her feet were puffy. This tells me that her circulation is impaired. Is it due to the fontan? being off her feet for two weeks? did the HIT take a toll? the central line and arterial line being in her groin for so long? There is some perfusion of course, but it is hard to really time due to the puffiness. I will address this to one of the docs tomorrow, but would really like to hear any similar experiences with this in case I get an evasive or ambiguous answer.
Just for inquiring minds, we are on aspirin and coumadin both. Will check our INR tomorrow and have our coumadin "clinic." Supposed to be getting a home test kit. Am curious to know which one. Hope it's the INRatio, but it probably won't be.
Found a full saline syringe with the cap off in Katie's bed. Fortunately, I found it before Katie did by rolling over on it. Then our chest tube drainage contraption got knocked over in the playroom. Since the fluid got divied up in all four columns, the nurse insisted we change it out as it would now require GASP! math to figure out how much she is still draining...........all that adding and subtracting (the horror, the horror!)............so they switched out the box.........and just happened to forget to add water and seal it, so that air would not be allowed to enter the tubes in her chest..........sigh! I don't think much could have since she is still draining a fair amount, but you never know......... The night nurse - who is very good - caught it at midnight and the box was switched at four.......so eight hours without a seal. Will have to ask about this tomorrow, too.
Hate to sound like a whiner when we have so much to be thankful for. We had visitors today. I got to meet Ann and Halle Frank. They are so sweet and brought Katie a present, which she couldn't wait to open and start coloring with her markers. Thank y'all somuch for thinking of us and stopping by. And Halle is so cute!
Katie is still not quite with it. A few laughs, but still seems pretty distant at times, and I can't figure out what is going on in that little head of hers. She's probably planning her escape route in that taxi of hers.
Well, better run myself (and no, not to cook that big fat goose down in the lobby). Suzy, BTW, are you saying I have a big butt? It should be a busy day tomorrow. I hate to always sound like a broken record, but we do so appreciate your support, your messages, and the prayers. Jerra is hanging in there, but still very critical, so please keep her in your prayers, too.........and her poor parents.
P.S. Kim, happy birthday to you and Tommy! Can't believe you just both turned 29! heehee! Hope the celebration was grand.........well, as grand as it could be without me.
Much love. J.
