It never fails that when I post how good things are going, it is usually followed by a little health blip and yesterday proved no different. LOL I just have to laugh it off. We had Our first post transplant blip since we've been home.
Philip developed a fever yesterday that landed us in the hospital.
Because he is so close to transplant he needs to be monitored closely for infections. Mt. Sinai agreed we could head to Cohen's Children's Hospital instead of the city to get checked out and if need be we could transfer. It's been a while since we've been here but since we've spent so much time here over the last almost 3 years, it almost felt like coming to our 2nd home. LOL
All of Philips blood work in regards to his liver look good. We are waiting for blood cultures to come back and some viral swabs so we are stuck here for a couple of days at least. He's been putting his fingers in his mouth a lot so someone mentioned maybe it's coxackie. Either way we're just hanging out here for the time being. I just pray he can fight whatever is brewing in him and we can move forward again. He's in good spirits but wants to go home! Poor bub's been through so much.
(Flashback)We walked into the diner, black binder in hand. We just came from Dan's appointment with the Living Donor team where they explained some things and sent us home with this binder to read over and make a decision to go forward or not. We slid into the booth knowing there was really no deciding today. The decision was made long before this appointment when they first mentioned living donor, that if it was an option, we would do it. We didn't know all the risks or anything about the procedure then but we knew that if it gave Philip a better chance at life, there was no question. But reading the book in the diner that day made us very nervous. Nervous of the unknown. For both Philip and Dan. Phrases like bile leak, bleeding needing transfusion, donor may need more surgery after donation, donor may need a transplant them self or even death. Questions like Would the transplant take, would there be complications, would Dan's job be ok after surgery, how would Danny handle having his whole family away. So many questions and uneasy feelings. People would ask how are you guys doing?, and We kept saying we can't wait to be on the other side of it and Everyone to be home. We knew the story would still continue after and there would always be more worries but to know the immediate outcome where we could all take a collective sigh for a minute was what we wanted and needed so badly.
...And here we are almost 8 weeks after transplant. And as everyone knows, I don't like to talk to much about when things are good for fear of jinxing but things are sooooo good. Philip amazes us every day with his energy and zest for life. He loves to laugh and to make people laugh. He is quite a character. We've adapted a few nicknames for him since his personality has exploded.
First nickname is Repeat. He repeats everything his brother says and does. To a "T".
Second is "The Lawyer". If Danny gets in trouble and I take a car away, Philip swiftly comes to his defense to explain why Danny did what he did and that he just wants his car back!
Philip sleeps through the night now. (one of my favorite improvements)
Although he does have bad dreams sometimes where I go in and he is crying in his sleep scratching himself but not really scratching. So sad, but he usually calms quickly.
He has given up his Bottle too! This has been a bone of contention for a while with many a doctor. But also many said let him keep it if it's a comfort in the hospital. Since he's been doing so great sleeping and he'll be going to school in the fall, I decided it was time to say bye to it. We gathered them all up to "give to another little boy who needed them with a booboo on his belly" and he's been great with it since.
He loves to play baseball and go outside and play in the water.
He also loves to stay up late. It's like he's enjoying life so much he doesn't want to miss anyhing.
His bloodwork remains stable and normal so they've just changed our appointments to every 2 weeks.
Dan is doing well also. They've lifted some restrictions so he can jog, ride a bike, swim etc. Still no lifting more than 30lbs though. They should lift all restrictions at the 12 week mark.
I know he can't wait for that day!
We still can't believe we are on the other side already. What we've anticipated for so long, It's here, we're in it and It is so crazy, but oh so sweet!
Still has a thing for muffins! 
