Teaching Porter how to eat

Helping Porter develop his appetite and skills for eating is a slow process. Our new activity this week is watching other kids eat. We literally walk up to kids we see eating in public so Porter can see real peers eating, but at home YouTube fits the bill! . Luckily, there are countless parents out there who post videos of their kids eating. . Mostly, he just laughs at the videos and doesn't really eat. But, I do think it helps his brain with the concept of food. One YouTube mother said it took a year to get her son weaned off the G tube. If we can do that, I will be thrilled. . #livertransplant #organtransplant #ureacycledisorder #gtube #tubies #tubielife

A post shared by Mr Johnstone (@techiesciguy) on Jul 30, 2017 at 4:09pm PDT

GHP PHD

When most Addison County people find out our son's name is Porter, they immediately ask "Did you name him after the hospital?"

You see, he was born at Porter Medical Center, in Middlebury.

No, we didn't name him after the hospital, thank you very much! Porter wasn't even born IN the hospital (see blog #1: "The Background").

Porter is actually my mother's maiden name. The exact path to choosing this as a first name for our child escapes me at the moment, but it is indeed a family name. Because of his name, when I think about Porter I often think about my Grandma and Grandpa Porter. My grandfather passed away earlier this month, July 7, 2017. It is fitting, then, to reflect now upon my son, his name, and my Grandpa Porter.

 Gilbert H. Porter

I only saw my grandfather a few times before our move back east from California when I was 12, and then sporadically afterward. It's interesting how alike we are! I share my grandfather's passion for do-it-yourself projects, and like him, cherish my meditative time in the workshop. My grandpa's basement workshop in it's prime was a thing of wonder! Saws, sanders, vices of all sizes and uses, and every tool one could ever need for a lifetime. Hanging from the workshop ceiling, several RC aircraft separated into wing and fuselage sections. Grandpa shared his passion for hands on projects and aeronautics with me when I was very young, scheduling in time on his visits to build and fly simple balsa wood models. I too, have grown into an avid RC pilot, but only in the last several years.  Sadly, I never had the opportunity to fly alongside Grandpa.

We share a passion for science, and specifically biology. Grandpa has a PhD and worked in the field of agriculture science and contributed a lot to contemporary knowledge and practices in bovine nutrition. 

I miss my Grandpa a lot but I am thankful he had a chance to meet the newest Porter in the family. I am beyond proud to have my son carry the Porter name. And I look forward, vehemently, to the days when I will share stories of Great Grandpa and I can pass on the joy of model airplanes!

A break from Boston

Since we were discharged from Boston on Thursday, the transplant team told us to take this Monday off, and return to Boston on July 24. But, still in need of some blood labs, we visited our good friends at the Infusion Bay at UVM Medical Center. Porter immediately recognized the children's clinic and ran down the hallway to the Infusion Bay! Katie reunited with her favorite hospital volunteers, and child life specialist Jenny, and got right to work on some new craft pieces while Porter worked with the nurses.

We also stopped by PICU so Porter could show off his new "shark bite" scar. Always nice to be in PICU under happy circumstances!

We hope we get to see more and more of our favorite UVM doctors and nurses as our Boston team slowly becomes comfortable with another team taking on the majority of his analysis and care.

Porter looking for a high five from his old friend at UVM Children's Hospital. Our first visit back to UVM clinic since his transplant in Boston last month. We love our UVM crew and enjoyed visiting everyone today! #livertransplant #organtransplant #ureacycledisorder @uvmmedcenter

A post shared by Mr Johnstone (@techiesciguy) on Jul 17, 2017 at 7:56am PDT

Update July 12

We know our blog followers are looking for a Porter update after our admission for the infection last week Friday. We are working on a couple other posts, and forgot to update.  So here it is!

Porter's infection was identified quickly. Luckily he was started on antibiotics on Friday even before the infection was confirmed. So, his cultures have been clear for two days now. He is now on oral antibiotics and the plan is for discharge tomorrow!

Porter's drain at the graft site was left in over the weekend so the fluid could be cultured, but it is also the suspected source of the infection. So, with bacteria on the decline as of  yesterday, his drain was removed!

Hopefully this time tomorrow we will be arriving at home.

Showing off that sweet transplant scar. Look, no drain!

Hiccup

Author: Sarah

Porter and I got to take a ride in the UVM Health Network's newest critical care transport truck yesterday.  Porter woke up Friday morning very fussy and vomiting.  We have a pretty low threshohold for behavior changes with Porter (for obvious reasons) so after touching base with the folks at BCH and UVM we decided to head to the UVMMC emergency department for evaluation and IV fluids.

The emergency department is not the place you want to hang out with your child but we were warmly received by our UVM team.  Porter and Katie had several visitors from PICU including "Uncle" Nurse Pat who took Katie to her favorite place in the hospital: the gift shop.  They came back with a new pair of purple sunglasses for Porter and a bracelet making kit for her.  A perfect distraction.

Our medical teams decided right away that Porter should be transferred to BCH.  Our friend Nurse Clare hooked me up with ear plugs and an eye mask to help me sleep better while in Boston--THANK YOU!  Doctors Amelia an Iris came down to check on us and helped to coordinate Porter's care.  We are so grateful for our UVMMC family!

Ready for a ride in the big rig with the Boys in Green.

Thanks to the transport team for a quick and smooth ride.  They handed Porter and me off to the Emergency Department staff at BCH around 3:30.  Chris had dropped Katie off with my Mom and was about two hours behind us.  It's a good thing he arrived when he did and with food in hand...my stomach grumbles were about to become embarrassingly loud!

Spilled drain juice on Mom. Lovely ED replacement apparel!

After some more tests the Transplant team is pretty confident that Porter has developed an infection inside his abdominal cavity;  most probably from some extra fluid in there or perhaps from the drain itself.  The plan is IV antibiotics and to get the drain out soon so that it does not remain an infection risk.  The great news is that Porter's liver labs all look good no signs of rejection so far.  Hopefully we caught this infection early enough that we can clear it quickly and be home by the end of the week.

Boston Day Trip July 3 - Checkup

Family hike today at Quechee Gorge Trail on our way home from Boston. Porter's checkup in Boston went very well. His blood work is right on target, liver tests are normal. We will make another round trip next week, and hopefully the docs will advise to extend checkups to every other week.

A post shared by Mr Johnstone (@techiesciguy) on Jul 3, 2017 at 5:32pm PDT

BFF

Touching questionable mushrooms

White Admiral Butterfly