THE PLAN CONTINUES TO CRYSTALLIZE

Another day, another night in the hospital.  I love spending time with Piper when it’s just the two of us, but the shared rooms at the hospital are not the ideal place for it.  I also miss my other two little girls when it’s my night to be with Piper.  I know Erin feels the same way.

Other than a 45 minute period where the nurses unsuccessfully (again!) tried to get Piper’s blood pressure around midnight, it was a pretty good night.  Piper slept well and I slept well.  I think Erin got the short straw as apparently both Harper and Sophia were clingy and difficult this morning.

I need to take two seconds to praise all that Erin is doing in regards to Piper.  She has really spearheaded all of the details of Piper’s care and I am truly grateful.  She’s a wonderful mommy to all of these girls and in truth, I’m happy she’s willing to take the reigns on the details.  I’m happy to spend the evenings, nights and mornings with Piper every other day, but I’m thrilled that Erin is willing to coordinate all of the things the hospital needs her to do.  We’re all really lucky to have her.

Anyway, this morning, the transplant surgeon paid Piper and I a visit to tell us that Piper’s kidneys will be coming out on September 16th.  She will also be getting a peritoneal dialysis port as well.  That’s a dialysis port in her stomach which will allow her to be dialyzed at home while she sleeps at night instead of in the hospital.  That means that the first of her two big surgeries is just about a week and a half away and we feel very good about it.  Hopefully the pathology will come back with no evidence of cancer and we can move right into transplant mode!

Dr. Tapia also visited this morning and was very pleased with Piper’s appearance and appetite.  Prior to Dr. Tapia’s visit, Piper ate a giant breakfast of eggs and pancakes, and that was really wonderful to see.  There’s not much worse than when you have a sick kid who the doctors want to eat and she just won’t eat.  I was so relieved to see her eat!  Tonight, she will get a special dinner of chicken nuggets from the grocery store (instead of the hospital kitchen).

Piper is getting some dialysis now, but then should be good to go until Sunday.  As things stand now, it is looking very good that Piper will be coming home on Sunday or perhaps Monday at the latest!  We are so excited to get her home and back around her sisters.  Yesterday, her sisters got to see her for the first time in a week and it was so great to see them together.  I have such wonderful little girls who love each other so much.  I was just overwhelmed seeing everyone together.

I also got a visit from the transplant coordinator, Cathy McAdams, this morning, and she informed me that I have been approved for further testing.  That means I will spend the second half of the day on Tuesday having blood drawn, getting an ECG, EEG and some other imaging studies.  Hopefully everything will be where it is supposed to be inside my anatomy and we won’t hit any roadblocks.  She should also have my blood work back from Jefferson at that time which will finalize my compatibility.  I’m very excited about all of that.

All in all, things are moving along nicely.  Tonight, Erin and I are going to see Miranda Lambert up in Camden.  It’s a concert Erin has wanted to see for so long and we’re so lucky to have great friends Desiree Headley and April and Autumn Fedale helping us with the kids while we do this.  I even got us a car service so we don’t have to worry about driving and can have a few adult beverages.  It should be a great time!

Thanks to all of you as usual.  Your support and words of encouragement mean so much to us.  We really feel so blessed to have you all in our lives.

Love, Chris and Erin

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