Thursday, November 13, 2014

We've been keeping a secret...

A couple of months ago I wrote a post about a topic that was weighing heavy on my mind. At the time it was the question of the day, and it seemed that I couldn't go more than a couple of days without someone asking it. The question was simple, but I'm pretty sure that most people probably didn't realize just how much our hearts broke every time it was asked. The question quite simply was, "How much longer does he have to keep that tube on his face?"

I ended that post telling everyone that I would be sure to let them know as soon as his tube was finally out. Well,  I'm happy to tell you all that we have been 2 weeks tube free now! It's a huge milestone for us, because this is the first time in his entire life that he is completely tube free. Of course, this milestone comes with several stipulations. Parker has a calorie and fluid requirement that he has to meet everyday, and, in true Parker fashion, these numbers are much higher than most 3 year-old boys. He has to eat over 1300 calories, and drink more than 1400 ml of fluid a day. Yes that is right, he has to drink a liter and a half of fluid every day. I'm pretty sure that as a 29 year old adult, I do not drink that much fluid in one day. I know this because I tried to accomplish this recently and struggled. If for any reason he does not meet his established daily goal, the tube must be placed again. Some days are really good and he drinks it all without any question, but some days end with me in tears from fighting with him to drink all day, and barely meeting his goal. Every day is a struggle, but so far we are doing well.

There is a downside to this situation, but it is something that we have accepted. A person's kidney function is directly related to their fluid intake. While Parker was getting continuous fluid throughout the night, his creatinine (kidney function) was 0.2-0.3, which is amazing. When speaking kidney language, the lower the number, the better. Now that he is going all night without fluids, his creatinine has taken a jump up to 0.5-0.6. We redid his labs several times this week just to be sure, but no change. For a couple days, we weren't sure if we would have to put the tube back in, but all other numbers look great, so his team is fine with it staying out. Their explanation is that he is now going 9 hours without fluid before labs, whereas before he was only going 1 hour. This simple act can make a huge difference, but he's making up for it tenfold during the daylight hours, and is actually getting more fluid intake now than he was before. We are so happy, and so proud! Thank you to all who have prayed for this!


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