Two steps forward, One step back

Wednesday was a long day for us, but this is all part of the journey, so here we go…

(As I munch on a farmers market brownie that has an odd taste like it was sitting on pizza in the fridge or something?)

Thanks to everyone’s prayers, Haylie was fine after taking my antiviral pill.  She stayed overnight at the vet for fluids and observation, but we were able to pick her up before heading to Liver Clinic (Wednesday afternoon on CCF’s transplant floor) Look at her little bandage where her IV was (below). Poor baby!

Liver Clinic (Wed) was predictable.  You set up appointments beforehand with the transplant social worker, transplant psychiatrist, or transplant coordinators – whomever you want – plus of course the surgical team. To try and condense my story, the surgeons said my incision looked great, even though it has 2 small spots which are questionably “too open” in my opinion. They surprised me by taking out every other staple and replacing them with Steri-Strips.  The staples were really pulling and being uncomfortable, so I was grateful even to lose half! Then there are the 2 stitches, one for each JP drain that was collecting serosanguinous fluid while in the hospital. Peter, our adorable, caring, Australian fellow removed both stitches as well, and other than all that action on my abdomen leaving me sore, it all went great, and I should be able to get the remaining staples out next Liver Clinic. One week!

My pathology report on my old liver came back and we were elated to hear the news. Thanks to your prayers and our good God, the chemoembolization DID get all the cancer in the liver, and none of it spread to the lymph nodes, which would have been a big concern.  The report did, indeed, confirm I had a serious case of Primary Sclerosing Cholangitis, and it also showed my new donor liver was in tip-top shape!

I met my post-transplant coordinator who will follow and help me for the rest of my life, and she is such a smart, sweet woman.  Her name is Molly, and she works behind the scenes to make life as a patient easier. I met her co-worker, too, who covers for her sometimes, and after passing by my scheduler in the hall, the 4 of us got into a 30 minute shopping conversation about deal websites, flipflops, and tips to make my wardrobe work with my massively swollen abdomen, other than racking up a tab at A Pea In The Pod or Motherhood Maternity!! (Joanna, my scheduler, says it’ll be a month or so until I lose my “baby bump”… not funny!) anyways, everyone says you’d become like family to your team and we definitely have!

We left around 4p with everything going well. I passed Dr. Hupertz, my peds GI, while waiting for Mom to pick me up, and she raved at how well I was doing and encouraged me like she always does.

The car ride was great since I was able to sleep the whole way, but things got bad when we got to my driveway and I saw that the whole side and bottom of my cute lavender top was wet.  I stood up, and fluid literally started spurting from where the doctor removed one of the drain stitches.


It was after 4.30pm by then, so I had to page the” liver transplant coordinator on call”, which thank goodness was Molly! We discussed the amount of fluid I’d lost (rolls of paper towels, absorbent medical pads, etc.) and decided a precautionary trip to the ER would be the best idea.

Fast forward to 2am, after some Zofran, morphine, and dilauadid … Labs.. CTscan… All looked normal for a post-surgical patient, so still dripping and oozing, they finally let me go! They found one abnormality in the CT but they were going to clear it with my surgeon, Dr. Fred, in the morning. (And yes, it ended up being normal)

Now if we could just get the fluid to stop leaking… (Although it’s better out than in!)

Oh and we saw 2 separate friends/families we knew in the OR. Please pray for their peace and healing. We already know God is good!

So fast forward to Thursday AM – Mon and Thurs are lab days where I go to my local lab and they overnight some of the rarer tests to the Clinic to save me 2-3hrs twice a week. I barely got to the lab awake, and by then Mom had talked to Molly who had talked to the surgeons… They wanted to see me, yes, back in Cleveland.

Long story short, Dr. Peter had to restitch the drains (even the non-leaking one – just to be sure) and hopefully everything will be healed enough by Wednesday to get the staples and sutures out.

Today, Friday, I’m feeling better – tired and sore, but better. My cousin and her boyfriend came over last night, Grandma and my aunt were here, and Haylie finally got her much-overdue haircut.  I have more visitors coming Saturday and Monday, so that’s exciting.  They help pass the time and it feels like forever since I’ve seen everyone.  I’m hoping in a week, I’ll be stitch/staple free, more healed, and up to a little more.

One day at a time!

(I’m off to take advantage of my Netflix and Roku box while I just might fall asleep!)

Oh and a before and after of Haylie – first confused, missing her mommy, then in the hospital herself, seen here with a bandaid from her IV from her overnight stay at the vet, scruffy hair from Mommy being in the hospital for a week… The the after picture:  after going to Aunt Nancy’s and getting a bath, a haircut, and a festive little bandana.  She feels much better now that she’s all pretty (and back to her sassy self)…

IMG_0820fsx IMG_0831fsx
Thanks so much for your prayers and cards.

Amanda & Haylie 🙂

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