CLEARED TO DONATE

It was another hectic weekend with all of the kids, but a good one in that Piper did not have to have a dialysis treatment on Saturday or Sunday.  Piper remains a tired, clingy and sick little girl though.  She needs almost constant attention, oftentimes needing to be held.  It’s very rare if one of us isn’t holding the poor little thing.  She just doesn’t feel well and it’s so hard for us to see.  Today, she woke up quite puffy and I’m sure she’ll weigh over 11 kilograms at dialysis today, which is almost a full kilogram more than she should weigh.  We had to switch her clonodine patch on her back on Saturday and the potency of her new patch made her sleep almost 15 hours on Saturday night!  These blood pressure medicines just really take it out of her.

She will have dialysis three times this week and they’ll do blood work on her on Wednesday to see how she looks as we prepare for her tentative surgery date of next Friday.  Hopefully her hemoglobin levels will be looking good and she will otherwise be in good shape.  We are really anxious to get these kidneys out of her as that will solve so many of her problems.

Thankfully, our great friend Des spent much of the weekend with us providing us with those almost necessary extra two hands.  It’s great to have such a good friend to take some of the pressure off of us.  On Saturday evening, Des stayed with the kids while Erin and I went to our friends the Deputy’s open house party.  At the last second, we decided that we should try to class the party up as much as possible so we went in full formal attire for absolutely no reason whatsoever.

Here we are:

The other party goers were perplexed, but my response was simple:  “It’s after 5 o’clock.  What am I, homeless?”

In terms of my status, I had my final pre-donation clearance appointment on Friday with Dr. Stephanie Gilibert.  Dr. Gilibert is an adult nephrologist associated with Christiana Hospital and she was really great.  I’ve never met a doctor with such a great bedside manner!  We went through all of my testing results including blood work, ultrasound, CT scan, chest X-ray and then discussed in depth what it will take to ensure good kidney function for the rest of my life.  She was really informative, positive and helpful and she gave me the final clearance I needed to donate my kidney to Piper.  I got a text message from Cathy McAdams this morning that I am fully cleared to donate.  The only thing left is to speak with the transplant surgeon up in Philadelphia at the end of the month for him to really spell out what I’m going to experience.  Although I have a pretty good idea, I’m sure he will go into great detail!

I feel very fortunate to have had my parents come up a few weeks ago as I feel like it helped me turn a corner from grieving over this situation to fully accepting it.  Erin and I have been meeting with a psychiatrist who works with the donation team at A.I. and it was interesting to learn that everyone experiences the grieving process differently.  Being able to talk about this with Erin and the psychiatrist has been really helpful for both of us as neither of us really thought about where in the stages of grief the other might be.  I do feel fully accepting of everything now and much less upset about it all.  This has become our “new normal” and although it totally sucks, it’s not so emotionally difficult anymore.

We went to the zoo on Saturday and although Sophia told us she didn’t need a nap that day, this is what we saw when we turned around after pulling into the parking lot:

And here’s a cute one of Harper:

Thanks again to everyone for all of your support through this.  We truly appreciate it.

Love – Chris and Erin

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