Wednesday, April 13, 2011

No News is Usually Good News

I know that it has been a while since I have written and I am sorry for that. Procrastination is a big problem of mine ( I will solve it tommrow :-)), I always mean to write in this but I never think about it until I am in a place where I can't do it. Rest assured though nothing big was really happening, well from a medical standpoint. She is talking more and she is asking for things, in fact one morning she woke up and asked for her medicine. She is starting to voclaize what she wants more and more, which is awesome. It is so cool to be able to hear her little voice, though she is two, so sometimes that little voice turns into a big whine...that isn't so cute. She has started the temper tantrums, not real bad (no throwing herself on the floor), more just screaming and waving her arms around like a bird trying to fly. I am thinking about trying that at work and seeing if that gets me anywhere...maybe ask for a raise, and while they think about it start screaming, crying and flapping my arms. Hmmm, that may work.
The reason why I am writing, though, is to let you know of something that has been going on for a little while. See, my daughter is getting bigger in alot of different ways. She is getting bigger in height, in weight, in vocabulary, in development, and in STOMACH. My daughter has a gut on her, that rivales mine, o.k. slight exaggeration there...her's may be a bit bigger. All kidding aside her stomach is getting bigger and has been for the last month or so. At first, we thought it was a good thing, she is gaining wieght WOOOHOO!!. Then we thought mybe it wasn't so good, she is gaining too much weight. Finally, we weren't sure what was going on, we just knew that my daughter was turning into a oompa lompa, and we couldn't explain it. Today we had an appointment with her Gastrointestinal Doctor, fancy medical term, for Stomach doc, and he took a look at the belly and sent her off for a STAT ultrasound and blood work up. For those you who don't watch GREY'S ANATOMY or ER, STAT means NOW! The blood work up showed that some of her liver enzymes were off, but not enough to be a blaring red alert. Her ultrasound showed that a lot of fluid has gathered around my daughter's liver and that the fluid was causing her daughter's abdomen to swell. So my daughter has gone from an oomp-loompa, to a water ballon, GREAT, I no longer have a child I have a picnic toy. ( sorry that one may have been a bit over the line). So the next stop was to get Dr. Suarez involved, he is our cardiologist, Kylie's heart doctor. He wants an ECHO of the heart, once again for you none medical drama watchers, an ECHO is a video of the heart as it is working. The thought is that something is putting stress on the liver so that it is malfunctioning, and oozing fluid, and Kylie's heart is the main suspect. The only problem is that the heart is looking great, well, for Kylie anyway. It seems to be working fine. So we have a liver having issues, labs that indicate that something is wrong, but not with a strong enough indication of what, and the main suspect has just been cleared. So now we have no clear idea of what is going on. We just know something is wrong. My daughter never does ANYTHING easy. I am considering putting her in time out until she starts copperating.
So our next step is to either pull some fluid out of Kylie and test it or do a liver biopsy and send that off to be tested. We are still deciding on which one to do. Testing the fluid would be a bit less invasive, but it also has a higher chance of being inconclusive and we could just be wasting our time while waiting for the inconclusive test results to come back, while my daughter stlll collects fluid. The liver biopsy is more invasive and has higher risk of bleeding but it is more likely to produce results. So we are going to call the doctor in the morning and see what we can do. From what I understand, this could go either way, either this could be something very simple, like irritation left over from surgery, or it could be REALLY bad....so I am asking for you to pray for us, as I know you are. God has brought Kylie through so much and alot of thanks is owed to you for the prayers that have been given up on her behalf, even when I forget to write. Well good night all I am off to bed, I couldn't sleep until I got this off my chest, sleep well.

1 comment:

  1. Why is practically everything medically related seems to fall within the explanation of really simple or very complexed? Where's middle ground. Or easy ground that always produces best and fast results. But no, the more invasive, lengthy procedures are the ones that have to be what gives clearer results. Is it God's way of trying to sneak in extra opportunities for us wee humans to practice our skills in patience and sound minds? I hope not because I am far from having those skills down pat and I don't want more opportunities to be given so I can learn. :)

    Praying for you all! And please, please don't procrastinate on the update when you know something. We'll be thinking of you.

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