FEEDING TUBE IS IN

Well, yesterday sucked, but we got through it and Piper is doing great.  She is the strongest of the five of us and I can’t wait to see the woman she becomes.  I just know she is going to be something special.  But…that can wait.  We’ll just enjoy watching our little baby grow up to be just as strong and healthy as her equally amazing sisters.

Many of you probably know this, but a feeding tube is no fun.  The worst part, of course, is actually inserting the tube.  We got over to A.I. duPont yesterday around 9 a.m. and after I had some blood taken for a few more tests, we went to Day Medicine for Piper to have the tube inserted.  The nurse walked us through the process and we both got to practice using a doll designed for that purpose.  It turns out, there’s more to this than we expected.

First, we had to measure the proper length and mark the appropriate spot on the tube.  Then we had to get the lubricant ready, the pH stick ready and flush the tube with a few cc’s of water.  Before we put the tube in, we had to put a patch of duoderm on Piper’s face and get a few pieces of tegaderm ready so we could tape the tube to Piper’s cheek.  Then, we needed to get a few other pieces of tape ready to tape it to her back.

Just as we were ready to go, I had to leave to walk across the hall and get another CT scan taken.  Apparently, Dr. Frank up at Jefferson noticed some unique vein structure in and out of my kidneys and wanted to take a closer look just so he could determine which kidney was the best one to put in Piper.  It’s possible that I have two ureters going from one kidney into the bladder, so obviously, that one would be more difficult to transplant.  If that’s the case, then he’ll take the other kidney.  Also, there’s always been a slight chance that my surgery would have to be an “open” surgery instead of a laproscopic surgery, but due to my anatomy, that chance has risen a bit.  Anyway, the CT scan took about an hour from start to finish and as soon as he gets the results, I’ll let everyone know.

Anyway…when I was done, I went straight back to Day Medicine and they were all ready to go.  Since I’m the big strong man (wink), Erin thought it best if I held poor little Piper’s body still while she inserted the tube through her nose.  I wrapped Piper up in a swaddle and held her hands to her chest with my left hand while holding her head with my right hand.  Erin then prepared the tube and began inserting it into Piper’s right nostril.

As you can imagine, Piper went absolutely haywire, which we anticipated.  Erin got it in a few inches and hit some resistance which is normal, given how clenched Piper was.  Erin had to work the tube around a little bit and finally got it down her throat and into her tummy.  It was absolutely terrible and it broke both of our hearts to have to do this our little girl.  Amazingly, once the tube was in and Piper got a little love from us, she was pretty good and didn’t seem to be upset by the tube.  She tried touching it a few times, but to our shock, didn’t try and pull it out.  Once the tube was in, we pulled a sample of her stomach contents through the tube and tested it on a pH stick.  Happily, he pH indicated it was in her tummy and we showered her with hugs and kisses.

Yes…it was awful…but…not as awful as we expected.  We were DREADING this day.  I recognize that given everything else this little girl has going on, a feeding tube is a relatively minor thing from a PHYSICAL perspective, but from a MENTAL perspective, it was awful for all of us.  Our little Piper was doing so well and we were happily back in a routine, and just the prospect of inserting and maintaining and USING this tube was a big deal to us.  It adds an entirely new level of responsibility and stress and frankly, we just weren’t looking forward to it.

However…our little trooper has made it easier on us than expected.  She didn’t try and take the tube out (neither did her sisters!) and when it came time to hook her up to it last night, it was US that couldn’t figure it out, not HER!  As good as the training to insert the tube was, the training to use the tube was equivalently bad.  Eventually, after a lot of sniping at each other and all three kids (who wanted to touch all the buttons and trip over Piper’s tube and just generally make life as hard as possible on their two low IQ parents who didn’t know how to use the shiny new machine) we got the thing working and all three kids to bed.

It was a whirlwind, and our good friend Senor Patron helped us recover from it!

After a while, we went to bed, only to be woken up by the alarm on the machine telling us the feeding was over.  We sleepily stumbled in the room and spent another 10 minutes trying to turn the damn machine off, disconnect it from Piper and flush her tube with water.  We ALMOST made it without waking her up, but we weren’t so lucky.  Thankfully, Erin got her back to sleep very, very quickly.

It was a long day, but the tube is in and she’s doing very well with it.  We expect it will come out at some point and we’ll have to put it back in, but hopefully that will happen very infrequently.

I do want to take the time to thank April Fedale and Desiree Headley for being with us yesterday for the insertion of the tube.  They have both been so helpful and wanted to know how to insert the tube as well just in case it ever comes out when they’re with the kids.  We’re also thankful that both of these great girls stayed with Piper in dialysis yesterday so Erin and I could get lunch together in the hospital’s shiny new cafeteria.  It was nice for us to have some time together given that all we really wanted to do yesterday was cry, but we did talk about a few things that we’re insanely thankful for.  Being in A.I. duPont hospital is an eye opening experience.  Piper’s condition is extremely rare and extremely serious, but we have been really lucky in a lot of ways.  Every day we’re at A.I. (which was primarily an orthopaedic institute and is still the finest in the world in that regard) we realize how fortunate we truly are.

Here’s why we’re lucky:

1.  We caught Denys-Drash early and Piper did not have Wilms tumors or other cancer.

2.  Piper has really done absolutely as perfectly as possible recovering from each new procedure and operation.

3.  I’m an almost perfect kidney match and Piper won’t have to rely on a cadaver kidney.

4.  We live 3 miles away from A.I. duPont.

5.  We are surrounded by people who, although not our blood relatives, love us, help us and support us more than we could ever hope for.

6.  Piper will live a long and normal life and will never remember this.

7.  Piper, Harper and Sophia have wonderful grandparents who have been the bedrock of support for our entire family.

8.  Our wonderful friends continue to make sure we’re well fed and properly lubricated with alcohol!

Thanks to you all!  We’ll continue to keep you informed as we learn new things!

Love – Chris and Erin