Latest update: Seems like Katie is having lots of new struggles but she sure has spunk.
65 July 29, 2005 at 02:57 AM CDT
As the Chest Tube Drains.........and drains........and drains........
thought we were slowing down for a while yesterday, but then we dumped 50 ml first shift this AM.........argh! Over 100 for the day.
WE have managed to salvage our IV, so no Picc line and no argatroban. We were able to drop the vancomycin as they determined that gentomycin and the Kefsol were effective in fighting our "growth." Soooooooooo.......that's good news anyway.
And the best news yet. LIttle Jerra made it through surgery and is in Pod A, PCTU. Still very critical, but this is a miracle no less. Thank you all so much for adding her to your prayers and please keep them going.
Now the rest of the news sucks. INR today was 1.7, which I am not at all comfortable with. (I knew that 2nd dose shouldn't have been held. Can we say "I told you so"?) The clinical N.P. Laura assured me that this would be our low as we restarted the coumadin last night (Wed.) with a 2 mg tablet and repeated tonight. So far, though, I've been unimpressed with her coumadin "expertise." We should not have been permitted to go all weekend without an INR check, thus resulting in our surprise 6.1 INR Monday.........
Katie had a rough day - not heartwise, just a tough one. We started our day with a GI barium study. I so hated putting Katie through yet another tortuous procedure (and to NPO her again when we barely have her eating and drinking now), but felt like we really needed to have it done........just to make sure that there isn't a malrotation of her intestines that so many heterotaxy kids have - Katie's stomach is on the right side. This has been an ongoing battle since last week. I will spare y'all the whole saga, but a senior fellow from general ped surgery finally came and talked to me yesterday. Her name is McCrudden with emphasis on CRUD and had the bedside manner of a car repo guy. Anyway, she convinced us that we needed to have this done........argh! So, we did...........
I knew it was not good news when a ped surgeon by the name of Hershel (sp?) marched in with McCRUDden in tow.......Yes, there is malrotation. SOOOOO NOT the news I wanted to hear. Yes, Katie is at risk of volvulus (the intestines twisting and pinching closed, which causes the intestines to necrose or die within a matter of hours - serious stuff requiring immediate surgery!). Now that Katie is on coumadin, volvulus could be fatal as they it would take time to bridge her with argatroban, give vitamin K, lower her INR and operate. It would definitely require being in the right place at the right time...........UGH! Anyway, McCrudden is sitting back all quiet and almost grinning - she really missed her calling as she would make a great executioner, just sitting around drooling until she gets to pull the switch. She was much too happy while delivering really crappy news.
Okay, so they want to do the Ladd's procedure which would basically be tacking the intestines in place, so they can't twist in on themselves. (This would/should have been performed much sooner, but Katie was not born here at UofM, so never received a full heterotaxy workup.) They are going to talk to the cardiothoracic team and all reach a consensus and get back to us with their decision and then we will have to make ours. So, we are making our list of questions.....how invasive, etc. I sure wish God would quit dumping these kinds of decisions in our laps..........sigh! I need to remind him that lapsize is not equivalent to butt size.........and mine is MIA anyway. Pray for wisdom and guidance here.......... not doing anything without some serious talks to Dr. Bove (like what is this guy's reputation - is he a hatchet guy who is overly eager to operate?) and God.
To be continued in part ii..............read on please!
64 July 29, 2005 at 02:54 AM CDT
Part II..........
Katie was great, though.........such a trooper. She drank her chalk, albeit very grudgingly, and she did later comment later that the "lady lied to me. She told me it tasted like strawberry, but it was yukky. She's so stuuuuuuupid!" Hung in there for the repeated x-rays. Suckered the radiology tech out of five stickers and a little heart pillow. Now she keeps trying to poop every hour on the hour. Demands to sit on her throne, but to no avail. She doesn't really have to go.........she's just anxious to see the "white poopie" they told her she would have. (Hey, Jayne, there's your marshmellows.......yuk!)
She's back in her big girl panties - Ariel tonight (Little Mermaid) and eagerly shows them off to whomever walks in thedoor. Had to show the nursing tech the ones she had on and the other four pairs I had brought over and promised to show her all the rest tomorrow..............guess I'll be packing a suitcase as she insisted we bring like fifteen pairs.................
Then this afternoon, they decided they needed to remove her stitches as they have been in for two weeks now. They had been waiting to do it when they knocked her out for her chest tube removal, but since that hasn't happened, they decided that they really needed to come out. They gave her a little versed, but not nearly enough - it did not calm her down at all........and it hurt like hell. The stitches at this point were really imbedded and scabbed over. If I had only known how bad it was going to hurt, I would have put my foot down and insisted they zonk her completely. The N.P. kept saying that it shouldn't really be hurting...........well, hell, you pick scabs off all the way down your chest and see if it hurts. Katie has little bloody spots all the way down her incision with a fairly large one at the bottom where the knot had dug in for the winter. I did put my foot down on the top knot which is deeply imbedded under the skin. They are going to remove that one when they do her chest tubes. My poor baby. Not a good day overall. ONe bright note is that when we got back from the treatment room to Katie's bed, there was a big package there from Kendra and Kenny. Thank y'all so much. Katie loved the baby tiger and the doll. I foolishly asked Katie what her new baby doll's name was - don't ask a kid who is partially under versed this. The new doll's name is Baby! How original! We now have a doll named Baby and a fish named Friend. (who is still alive, btw. Whenever I call home, I have to give Katie hugs from Trip and Grandmommy. Katie always wants to know if Friend misses her. Yes, Friend sends hugs, too.......sigh!)
They also dropped her lasix down to twice a day since she is looking a little dry - read that as borderline dehydrated, which makes me nervous on top of the low INR.
Well, I think that is it............dunno, brain is beyond mush.......it's probably that white poopie that Katie is looking for......I've started wearing my nametag with room number on it all the time in case they find me in a corner somewhere babbling like an idiot. I reallly think I could get off with a handspanking if I do cap the bird - either justifiable homicide or temporary insanity.
Keep those prayers coming and thanks for checking in on us................much love. J.
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