Food Truck Friday!

Well, it's Friday, and that means its Food Truck Friday! At least on Longwood Avenue, that is. We are excited to check out the fabulous food truck offerings. Porter isn't quite ready for real food yet, but it's amazing to know that his transplant will give him the ability to eat almost anything he wants!

It's also Day 17 into Porter's liver transplant journey. For a few days now, Porter has been roaming the halls of 10 South. He enjoys walking around and saying hi to all the nurses. We lose count of how many laps of the floor he does every day. Physical Therapy stopped visiting because they said all his walking was doing him more good than any therapy could! We are getting used to our hospital digs, but everyone is going a little stir crazy!

This is what you do to have fun in the hospital room.

Discharge from the hospital is imminent. Drainage from the graft site is slowing, but still needs a bit more time, but the Liver Team says we can be discharged with one drain in place, to be removed later. When we are discharged, we will stay locally over the weekend at our hotel in Brookline, and then visit in liver clinic on Monday for one more inspection before they will let us return to Vermont. There is a chance they will want us to stay locally for more days, however.

Similar to our training to bring him home after his OTC diagnosis, we have been training with the nursing staff to understand his multiple new medications and some of his new restrictions. Also, in the same fashion to leaving UVM with a kiddo with a metabolic disorder, we are both feeling a little uneasy about leaving the safe confines of Boston Children's and bringing this newly immunocompromised kiddo into the real world and caring for him all on our own.

Porter has been practicing with the face mask which he will not need all the time, but sometimes depending on where he is and who may be sick in the household. Luckily he thinks its pretty stylish!

Katie has been amazing this whole time! She was excited to return to her brother in Boston after visiting VT last weekend, and she has been a trooper this week, enduring many meetings and appointments centered around Porter, of course. She really likes staying in the hotel and loves the Longwood Park, which is on the daily walk to and from the hotel to the hospital. Nearby we found a killer toy store and a puzzle store!