Wednesday, November 24, 2010

Next up... Kidney Failure?

Over the past couple weeks Harmonee has been in and out of the hospital for dehydration. I figured this was just because she had been sick. The second time she went in for fluids I was a little sad since I thought the minimum amount of fluid intake might not have been enough to suffice the winter colds and illnesses. Along with a very low blood count, and finding this blood in her stool I was getting a little nervous as to what this could mean. Not to mention the constant flash back of before transplant the day she was admitted to the ICU.

Stool samples and urine culture's were taken both coming back with a positive for ecoli. Of all things. Like I said before... if you can get it, Harmonee will. How did she get this?... Believe me, I  am still trying to figure that one out myself. What are the side affects?... Possible Kidney failure! Awesome. How do you get rid of it?... By taking all antibiotics away.

Dont worry I was a little confused myself.

Time for Action:
For starters. Ecoli causes kidney failure. This is especially vital to Harmonee since her kidneys have already taken the mother of all beatings. But also vital to ALL transplantees because of our best friend... Prograf. Prograf is a tricky medicine. If it becomes to high, your kidneys fail, but too low too soon, your liver (in Harm's case) with reject. Therefore it is time to pick and choose organs... doctor book is decreasing the prograf to give Harmonee's kidneys a much needed break.

Unfortunetly we just have to wait this out. There are NO antibiotics that will take it away. Oddly enough, antibiotics make ecoli worse. Go figure. So all antibiotics were discontinued. Including the antibiotics she was on for the prograf in case if she got sick.

Where are we at now?:
The ecoli is already starting to affect her kidneys, so we are keeping close eye on them. I keep a log of urine and bowl output. Colors, frequency, and amount. We are doing labs every other day. Todays labs came back to show that ther kidneys have declined even more.

The optimistic approuch:
If her kidneys don't take to much of a hit, they will bounce back faster then if they are hit harder then hoped. I am also hoping that in the long run her kidneys will bounce back with out having a liver repeat. On a brighter note... Liver is doing AWESOME!

Bored of being in the ER.

Never lets it get her down!

Wednesday, November 10, 2010

Liver Clinics Milestone!

I thought I would NEVER see the day that Harmonee's NG tube would be taken out. It seemed most unlikely since she had yet to start eating. Gagging if anything even brazed her lips. Oddly enough, we gave her bacon... Whala! Harmonee is eating anything and everything that can fit in her mouth that is edible! Bacon and chicken, soup and salad, bread and cookies. You name it. But still no bottle. Until one day... being the the overly excited mom I am, filled her to full of real food until she got sick over tubing her formula. This made her exceptionally thirsty. Who knew that just making her a little more thirsty would actually make her drink her bottle! Since then... its been quick progress to saying "see you later NG."

Excited I went to show doctor B at liver clinic that my baby was actually a tubeless baby. She chugged her bottle right in the middle of everyone. Not until after she made a mess of things first though. (see pictures). Doctor book was impressed and headed out to make arrangements so that Harmonee wouldn't have to ever put that NG tube in again.

Therefore, we came home from the hosptial with a glucometer since her blood sugar isn't staying up very well, and a scoop of cornstarch in her formula to add more sugar to her blood.

Here we are. Harmonee is tubeless, and straight on her way to walking! Early intervention is even planning Harmonee's graduation party since she is progressing so quickly on her own with having no Speach therapy, PT or OT since July.

Reading Dr. Suess in liver clinic!
I don't abuse her! I swear it! Its just a VERY large dose of apsrin and a baby who is learning to walk I promise.

Some how she got wrapped up in the paper, she drooled so much it tore right off while she was rolling around.

Birthday Picture