Good News and New Challenges

Author: Sarah

We all slept great Friday night.  We had a Ninja Night Nurse who didn't even wake me as she stealthily moved about the room, catching pump alarms before they sounded and keeping Porter comfortable and asleep.   We spent most of the day Saturday taking turns holding and consoling Porter.  He didn't pull any more breath holding tricks so we were able to leave the ICU and settle into our room on the transplant floor.  Here, we can both sleep bedside.  We have our own bathroom and a mini fridge!

Chris riding with Porter in transport from ICU 

Saturday afternoon Porter was a bit fussy.  When he woke up from his nap he was more alert and clear-eyed than he had been since surgery.  He's not allowed to eat or drink anything yet and his mouth was so dry.  We gave him his pacifier dipped in water and soon discovered that was a HUGE mistake.  Once he had a taste of water he was begging for it.  On one hand it was great to have him communicating with us.  Signing for "more" and "please" but then we were dipping his pacifier ALL NIGHT LONG!  Porter has never really experienced hunger because of his strict diet and eating schedule prior to transplant.  Now he hasn't had anything to eat or drink since Wednesday afternoon.  You can imagine how uber hangry he is.

With his increase in alertness comes also an increased awareness.  Porter pulled out both of his peripheral I.V. lines within a couple of hours of each other.  Now we are down to his port and the three-lumen central line that was placed during his surgery.  Thank goodness he has not yet taken an interest in the three drains coming out of his abdomen.  That could be messy!

So, last night was pretty challenging.  Chris ended up holding Porter because he would not settle in the crib.  Holding him is wonderful but also stressful because of all the tubes and lines and drains coming off of him.  He's a tangled mess right now and we are afraid of hurting him or compromising something.  Chris says he snoozed for a bit but I know it didn't amount to much rest.  I was able to lay down for about two hours but even that time was interrupted by nurses coming in, alarms going off, and oh yeah, the helicopters.  That's right, we thought it was so cool that we can watch the helicopters land on the Brigham and Women's helipad right from our window.  Turns out helicopters are really loud and do not make for a peaceful sleep.  Imagine that.

This morning during rounds the transplant team decided to try to switch from morphine to Tylenol for pain management.  So far it seems to be working and Porter is currently sound asleep in the crib.  They also told us that he won't be able to eat or drink anything until he has a bowel movement.  We've never hoped for a poopy diaper so bad!

Porter has a lot of experience being a patient.  I suspect if you ask any of his care providers they would tell you that he's a really good patient.  He sits still through every assessment and port access.  When we arrived at BCH last Wednesday he immediately showed signs of anxiety whenever one of the staff approached him.  Now he screams at the top of his lungs and seems genuinely afraid of them which makes getting anything done really stressful for all of us.  I know it's the new place and new faces.  Just wish we had our UVMMC crew with us.  Porter loves them!

This afternoon Katie will arrive.  We are so excited to see her!  She can't stay in the hospital so we have rented a hotel room (with access to a swimming pool!) for 4 nights.  We will switch off spending time with her and being with Porter.  On Thursday Chris plans to head back home with Katie for a long weekend.  Once he wraps things up for the semester they will come back down to Boston and we will all remain here until Porter is cleared to go home.