SHE’S HOME…FOR NOW

So happy that our girl is home for the first time in 10 days.  She had dialysis today for two hours and it was the first time I was with her for it.  I must admit it was difficult to watch them hook her up to the machine as she seems really sensitive about her port.  I’m not sure if it’s a physical sensitivity or an emotional sensitivity, but when you try to show people the port, she pushes her shirt or dress back down.  This is what dialysis looks like:

After getting discharged yesterday around 2 pm, I brought her home to finally be reunited with her sisters and it was really great to see them all together.  Sophia is a little rough so we’re working on getting her to understand she has to be sensitive with Piper, but she’s just so excited to have her little “Pipes” home.  Desiree was over and we all played outside in the yard because the weather was so perfect and then we all went out to dinner.  Harper and Sophia got a bath and then all the girls hit the hay after a long day.  It was really special having everyone sleep in the same house for the first time in a while.  Trading turns sleeping at the hospital was starting to wear us out a bit!

Piper has dialysis again today for two hours, but then she can go back to daycare.  Her routine should be fairly normal over the next week, but she will be back in the hospital for her nephrectomy next Tuesday.  In the meantime, I go to the hospital for a bunch of tests and doctors visits tomorrow at noon.  My schedule includes:

1. Chest X-ray

2. Meeting with transplant surgeon

3. Meeting with living donor advocate

4. Meeting with social worker

5. Meeting with pharmacist

6. Meeting with nutritionist

7. EKG and Echocardiogram

I also have to do a 24 hour urine collection which is a little difficult to do when you work in an office, but I’ll do whatever it takes!

Erin and I are holding up pretty well.  We’ve definitely had our moments and our fuses are a little shorter than usual, but we’re trying not to take it out on each other or the kids.  Each day we get further into this, we get closer to fully accepting it, which leads to fewer emotional highs and lows.  I never thought we’d have to deal with something like this, but we can’t change it, so we might as well buck up and do whatever we have to do to get Piper as healthy as she can be.

Thank you again to everyone for their thoughts and prayers.  Thanks especially to our friends here in Delaware who have been with us every step of the way.

Love, Chris and Erin

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