We didn't make it long at home before we had to head back to Primary's. Alivia's ascites just wasn't improving. Her abdomin continued to grow and be hard. The diuretics didn't seem to be doing much of anything so on Friday, July 15, Alivia and I headed back down. They did a paracentisis again and drained a large amount of fluid off. Her abdomin went from 52 cm to 44 that night and eventually worked its way down to 41 cm where she consistenly has been measuring. The problem with losing all that fluid is that it was weight. She is now back down to less than 11 pounds, so a loss of about 2 1/2 pounds.
So now our focus is on her nutrition. To gain weight, they've put her on a formula called Pregestimil Lipil. She HATES it. I could trick her into drinking 1/2 - 1 oz of it before she realized what it was....but she had to be pretty hungry at the time. We were able to come up with a mix of 1/2 pregestimil and 1/2 similac 24 and add MCT oil to help it absorb better. She drinks this mixture much better. They placed a ng tube to help her take in more formula and calories. She did so well after 2 days, that we were able to remove it before discharge.
They did an ultrasound to check portal vein flow. It was low, but still good enough that no additional measures needed to be taken.
Things were going really good and then her IV went bad. They placed a new IV in the other hand and shortly after they did that, we noticed a rash on her original IV site. So infectious diseases checked it out and they had to run cultures on it. They ruled out all the infections and viruses they thought it possibly could be and determined that the bad IV had just infiltrated the tissue and caused the rash.
We were finally able to be discharged on Saturday, July 23. Boy were we anxious and excited to be back home.
On a good note, as of July 15, Alivia is officially listed for transplant. And they increased her PELD score to 23. YIKES!
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