Growing up Dr. Suess was one of the only doctors I ever wanted to be around. I about memorized Fox in Soxs. There is also those golden books that had Seasme Street, The monster at the end of book still makes me smile. Let me let you in on a little hint, the only reason I agreed to have children was so that I could have an excuse to read the kid books again, slight joke :-) ( I also wanted to watch the cartoons again). As I have been reading the books I have been realizing the great life changing messages that these books hold. You know, the lessons that when you were younger you weren't smart or perceptive enough to realize that you were being taught but as you got older you kind of caught on alittle. So, by the time I turned 25 I realized "Hey, I am learning something here!" That was a great day, when I learned the double meanings. For instance, The Little Engine that Could, means to keep on persevering and to believe in yourself, no matter what his/her size. Then, there was Humpty Dumpty that taught you to be wary of heights and to respect property rights. I am still trying to figure out the FOX IN SOXS I don't even want to begin to tell you about the scratches I got trying to put socks on that stupid fox, let him go bare foot, I don't care anymore. While, I have learned these life lessons, Kylie still is in need of learning these very important gems of wisdom. There is one story that has been handed down from generation to generation, through the ages of human history. It discussed the wisdom and practically of intestinal and colonic fortitude and the necessity of regular and decent bowel movements. I am, of course, talking about the great literary classic, EVERYONE POOPS.
The last few days has been hanging out and letting the chest tubes do its thing and clear out the fluid that is accumulating around her chest, due to the surgery. That is one of the main things that is keeping us here. Though as we sit here and watch that decrease, we have watched something increase. I will give you a hint, it is slightly south of the chest and is the new home to a shinny new pacemaker. That's right we have watched her stomach slowly begin to puff up again and to get harder, we have had a few other people notice it, as well. The doctors notice that it is starting to get a bit more firm, as well. This is incredibly frustrating, because this is one of the main things that put us in here, almost a month ago, in the first place, that and the E. Coli infection that was started because of the fluid. So let's just say they jumped on it rather quickly. They had a couple of different theories what it could have been. First, and most nerve wracking could be that the fluid is coming back even with the diuretics and the fenestration. That poses a few questions, did we miss something, is it not cardiac fluid, does that mean the infection is going to come back? If the infection does come back whats to keep it from hitching a ride on the pacemaker right to the heart. ULCER TIME!! Second option, she has been having a hard time pooping, I know not nearly as glamorous as the first option but much more wanted and very likely. Kylie hadn't poo'd (medical term, trust me, I am a professional, medical guy...not the other one, though I do that too....uhhh.....ANYWAYS, moving on) in the last 4 days. Granted, she hadn't had all that much to eat, since the surgery, so it was a strong contender but still had somethings against it. Thirdly and least glamorous of all the possibilities, they thought it might be gas, and if you had spent anytime around Kylie the last few days you could see, or more apt smell, what they meant. So, with these three ideas we did an abdominal x-ray to see what was going on and Kylie, being Kylie, made her own option, she chose both 1 and 2, she had both stool and fluid. The stool was easy enough to fix, Miralax and a suppository and I am happy to report that it worked, I am HAPPIER to report that it worked while was out and didn't have to clean up the mess ;-). The fluid was a bit of a ponder, we didn't know if it was new fluid or if just left over from everything else. We did an ultrasound and compared it to the ultrasound that they did during the tap, to see where to put the needle and it showed NO APPRECIABLE GAIN. That is very good, so we wait and watch it.
Just nothing fits, and the things that do seem to fit are just not acting in the way you would normally see it happen. Everything we can come up with either, doesn't fit completely or it is very rare or unlikely. I am seriously thinking about changing my daughter's name to either Kylie "HOW'D YOU DO THAT" Stowers or Kylie "WOW THAT'S RARE" Stowers
As a father of a CHD child I live in fear of that other shoe. I have a hard time receiving good news that isn't verifiable, because I am terrified of the unknown. This little girl was put in my charge to protect and provide for and, when it comes to her health, there is alot of times that I can't do that. I need to trust in the eternal Father, the one who not only sees the here and now but the will be, as well. It is easy, to say it but hard to do. An encouragement to other father's like me, because not all are like me, find a stress relief, It is not weak or chicken to step out for a while and recompose yourself. If you feel overwhelmed and scared, you are allowed, this can be scary stuff, take a walk, pray, journal, listen to loud music, do something semi-productive to help relieve the pressure. I say "productive" because going on an all night bender of alchol and drugs or something to that affect, while seem to relieve the stress, is not going to help at all. Also when you come back, be there a 100% because mom is going to want and need a break as well. Remember, this is a marathon and not a sprint. Pray for me and I will pray for you.
P.S. At the time of proof-reading this update, see I do proof-read ( I know hard to imagine) Infectious Disease has come and says that they believe it was an outside contaminant. After looking at the past month, they believe that it might have been ( I love the certainty doctors have), that while cleaning after a bowel movement, some fecal material got on her skin, was not washed off completely ( even with bath's and normal cleaning), was not cleaned off completely when the surgeon put the Betadine disinfectant before doing the tap and that it was introduced into the fluid by way of the first tap. They say they had to stand firm because they didn't want it to not be taken seriously. There is also the belief that the fluid mixed with stool that was in her belly due to the constipation and that is how the bacteria got introduced. My head is starting to hurt. We are going to watch her at home and take it from there.
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