Thank You to ACSD and Middlebury Communities

When we started this transplant journey earlier this year from our first conversations with our UVM medical team to our consultation at Boston Children's, it was clear that a major part of our commitment to providing Porter with an opportunity for the transplant would be the cost. Not the financial cost of the surgery or medications, but the expenses of multiple trips from Vermont to Boston and back, including food and lodging for our family.

We had such a positive experience with the initial transplant and hospital stay, and we owe it to our friends and family who generously donated money, hotel accommodations, meals, laundry, and special care and support for Katie.  To our neighbors who mowed the lawn, brought in the mail, and made sure our cat survived.  Thank you.

We wish to send a very special thank you to our friends and colleagues in the Addison Central School District community and Middlebury area businesses. Last Friday we received an incredibly generous financial donation which encompasses donations from our closest friends and colleagues at work, ACSD members who just know who we are, and even Middlebury community members we have never met before!

We also want to thank our friends at Addison Home Health and Hospice for organizing additional donations to our family.

Porter's post-transplant care will require many more trips to Boston for follow up examinations, lab work, and (hopefully not too many) hospital stays. Your donation will be used to help pay for our travel expenses including lodging, food, and fuel. The overwhelming support from our community allows us to focus on our family and helping Porter stay healthy without worrying over the financial burden of his care.

Words cannot express how fortunate we feel to be part of the ACSD and Middlebury communities. Thank you.

Porter's new liver is working wonders!

Welcome Home!

Yesterday, we strolled into the General Surgery wing for our appointment with the liver transplant team with the hopes of a positive analysis and permission to take our family home to Vermont. The tension in the clinic room rose slightly as head physician Dr. Elisofon examined Porter's data and said, "Well, we would like to find a way to send you home today." What did he mean by that? Did he mean that something was holding us back from going home?

Sarah spoke before anyone else could, "Oh, we're going home today. So, what's the plan?"

The tension eased as we all had a bit of a laugh. If he didn't know before then, Dr. Elisofon now knew that of the two plans in his head, the staying in Boston plan and the Going Home plan, it was clear which one he needed to choose. Needless to say, we are all incredibly grateful to our surgeons, team doctors, and nurses, but we were ready to return home.

With blood lab results still yet to be analyzed the team quickly drafted our Going Home plan. We did have to stick around for a short time just to get the official word on the lab results, so we grabbed some lunch and soon received the phone call we had been waiting for. Porter's liver function labs showed continued improvement in liver function and his Prograf (immunosuppressant) levels were right on target! It was time to go!

Sarah was so eager to leave, she even volunteered to drive! She got us out of Boston in record time and we cruised home. Katie only asked a handful of times, "When will we be home?" and we made it to Rutland before Porter started to say and sign "All done."

We will return to Boston clinic every Monday for a few weeks to check in with the transplant team, but now begins the part of this journey where were care for Porter and his new transplant at home.

Day 17 - Discharged!

It's Sunday June 25 and we are just getting around to posting about Porter's discharge from the hospital on Friday. All of a sudden, we have the family together again and we can't seem to find the time to post to the blog! We have been busy swimming at the hotel, playing at the park, and just enjoying some sunny summer days in Boston. Tomorrow, Porter's transplant team will evaluate him in clinic. If they are pleased with his continued progress, they will let us return to Vermont!

We enjoyed a short visit from Michelle and Sean Farrell as they passed through on their way to the Cape for the week. Nurse Jamie from UVM was also coincidentally in Boston for a birthday celebration and dropped by to visit us at the hotel!

Almost three weeks after his transplant, Porter is ready to return home. We have a new slew of medications and medical instructions. Porter's new organ and immunosuppression means that his life and habits will be changing, especially during the first 6 months post transplant as his body and the organ graft continue to grow together. We know we will be facing periodic bouts with rejection, illnesses that challenge his immune system, and the continual worry that he will need to be hospitalized. But, just as before, we will face these challenges as they come. We are extremely happy to have his new liver on board and because of an organ donor, Porter will be free of the hyperammonemic crises, and will benefit from a normal diet.

 

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!

Bonus Post: Robots

Author:  Chris

This is a bonus post. See the previous post for today's real blog update for June 20.

One of the most confusing and cool moments at BCH so far was when I bumped into one of the hospital's robots in the hallway on our second day. It was carrying food trays. It stopped, drove around me, and continued on its merry way.

The robots are fully autonomous, with the ability to change course, maneuver around known and unknown obstacles, open doors, ride the elevator, and carry payloads to what appears to be nearly every corner of this hospital. So far we've encountered robots carrying food, mail, and patient records.

Cool! 

Back on Track

Author:  Sarah

Chris and Katie surprised us by arriving Sunday evening.  He said that he woke up Sunday morning and decided he couldn't wait another two days so he packed the car, sent Katie for a play date, and went to school to wrap things up before they hopped in the car at 1:30 pm for the now familiar drive to Boston.  I was so happy to see them and took a giant gulp of fresh air as Katie and I walked out of the hospital.  Chris' sister, Lindsay, picked us up and we spent the last two nights in East Boston watching the huge ships in the harbor for the Sail Boston Festival.

Porter came off of the IV antibiotics and fluids yesterday.  Unhooked again!  The team also took down the contact precautions signs. And, two of the three drainage tubes from his abdomen have been removed. With a potential infection thwarted, positive liver signs, and good healing at the graft site, the transplant team set a goal for hospital discharge for Friday! If things keep going well, his central line will be removed (not the port) and we will leave BCH to stay locally at our hotel until Monday. Thanks to the Farrell family, especially Grandma Pat, for sponsoring our killer hotel accommodations this week!

Porter's stomach seems to be mostly back to normal and he is tolerating his feeds well. We haven't had much time for focused eating work with him, so it's G-tube formula for now. But, we look forward to getting back to eating practice when we get home.

Photo binge...

Father's Day ice cream treat in Quechee.
I guess the scoops at Quechee Snack Bar are larger than our scoops at home!

Doing laps around  BCH 10 South, Transplant Floor

Porter's Penthouse

Catching up on our reading

Dad must have said something funny.

All smiles in the entertainment room.

A Bump in the Road

Author:  Sarah

Friday night into Saturday morning Porter developed a low fever.  In response, the team ordered some diagnostic tests (chest x-ray, blood cultures, and a urine culture) and started him on IV antibiotics and a dose of IV immunoglobulin to help support his immune system.  The x-ray and urine cultures both turned out negative.  We have to wait a full 48 hours on the blood cultures but so far those petri dishes are still clean!

With the fever Porter also developed a juicy cough.  Which, along with the negative chest x-ray, suggests that he's fighting a virus.  Because of his symptoms he has to be cultured for three big viruses:  RSV, Flu, and Adenovirus.  Until he is cleared of those three bugs and his symptoms improve he is confined to his room.  THAT bit of news took me pretty close to the edge yesterday.
I've been trying to get him moving and on Friday I took him for a walk around the transplant floor (a big loop).  He was crying and whining and reaching for me the whole way but he did it.  I know that getting him up and moving is vital to his recovery.  Plus, I'm sort of trapped in here with him and I was looking forward to another jaunt around the floor all day Saturday.  Now he is stuck in here until Wednesday at the earliest and he's tied to the IV pole again.  Grrrrrrrr.

It's pretty easy to get caught up in a negative attitude but I have a lot to be thankful for and I know that things could always be worse.  For example, we may be stuck in this room but we got lucky and have the biggest room on the floor.  The staff calls it the penthouse suite.  We have the biggest bathroom.  Not that we spend much time there but a big bathroom is a sign of luxury, right?  We also have the most floor space and a whole wall of windows!  In spite of the fever and cough Porter is doing really well and his new liver is functioning properly.  Dr. Kim told me this morning that they are going to take out one of the drains today and that is a VERY good thing.

This afternoon my parents and brother will arrive in Boston for a quick but much appreciated visit.  Mom is bringing food and fingernail clippers.  Porter's fingernails are in need of trimming. Big time!

 We have wonderful family and friends supporting us and sending so much positive energy.  Your comments on this blog are encouraging and hopeful--I look forward to reading them every day.  Thank you for the cards, balloons, care packages, and so much generosity.  You all make our normal every day challenges, and our extraordinary ones, so much easier to overcome.

Father's Day Hike with Katie

Author: Chris

Katie and I drove back to Vermont for the weekend so I can wrap things up at school before heading back down to Boston for the duration. On our way home we typically stop in Woodstock for gas and snacks, but this stop also happens to be just minutes from one of my favorite botanical sites in Vermont, Eshqua Bog. This small site is owned and managed by the Nature Conservancy, and it happens to harbor some fascinating plant species including orchids and carnivorous pitcher plants. Katie and I enjoyed the boardwalk into the center of the bog and a short hike around its perimeter.

 

This site is one of only a handful in Vermont where the Showy Lady Slipper (Cypripedium reginae) can be found. On this day the lady slipper orchids were not quite in bloom. I captured the photo above in June of 2013.

I am impressed with Katie's observation skills. She stopped multiple times to contemplate the trickling steam, examine a caterpillar, and feel the moss. My heart skipped a beat when she pointed out the blooming pitcher plants to me!  She really didn't want to leave, but the sun was setting and it was time to make the final jaunt up to Vergennes.

Quick Update

Author:  Sarah

Chris and Katie went home yesterday so Porter and I are on our own.  Actually, I'm doing a little victory dance right now because I got him to go to sleep AND he's not laying on top of me!!  Understandably, he's been very clingy this past week.  It wouldn't be a problem if I didn't ever need to eat, go to the bathroom, brush my teeth, etc.

The nursing staff brought in a new bed for us two days ago.  It's designed for older children and adults who are a fall risk and it works perfectly for us.  Much better than sleeping on a panel mat on the floor (we each took a shot at that) or snuggling up in the crib (that was all me).  This bed is sort of like a bed tent and zips the occupant(s) in so that nobody falls out.  Fantastic.

Yesterday's ultrasound looked good so they turned off the heparin drip.  Yay!  That was the last thing tying him to the IV pole.

                                                Out for a spin around the transplant floor.

Today's goal is to get Porter back on his normal bolus (meal) feeding schedule .  For three days they had him on a continuous feed which resulted in just as many episodes of vomiting.  Porter has never tolerated much volume in his stomach, especially while sleeping.  By the end of each day Porter's stomach was full to the point of discomfort.  He was super fussy and then would get sick.  Last night I convinced the NP on call to turn off the continuous feed around 3 am.  We opened up his g-tube and let it drain into a diaper.  After that he slept peacefully.

So far the bolus feeds are going well.  The team wants to make sure he is getting enough fluid; and since I started with a small volume feed this morning and am gradually increasing, they have him on IV fluids.  It's kind of a pain because it means he has to be hooked up again but things could be worse.

The most annoying thing is how frequently the drains coming from his abdomen pop open and dump body juice all over me.  Gross!

Lots of learning to come over the next few days as the team prepares us for discharge.  The nurses are quizzing me on all of Porter's medications (8 in total).  In addition to administering medications twice each day we will also have to weigh Porter and check his blood pressure each morning.  That may seem like a lot but when you consider what we've been doing all along:  measuring and mixing formulas and amino acids, dosing nitrogen scavengers, waking up in the middle of the night to feed and medicate him...it's really not that bad.  In fact, we may be able to move away from the 10 pm feeding this summer as Porter is able to better tolerate his food.  Sleep.  I can't wait!!

Bonus Post: Liver Labs explained

This is a bonus post for today, June 14, so don't miss our normal update post below.

Blood Tests Explained

Immediately after surgery, Sarah expressed an interest in knowing more about the labs, and being the big picture sort of guy I am, I was more focused on Porter's general condition and comfort, and not the lab numbers. But, then my science teacher brain kicked in and I had to learn more about the lab tests that are done on Porter's blood every day. Here's what I've learned.

We knew Porter's body would recover well since he was relatively healthy going into transplant and his only disorder or symptoms were associated with the OTC and not widespread liver dysfunction, as is the case with many other transplant recipients. But, how exactly do we know his new liver is functioning well? Daily blood tests give us and the doctor team a inside look at how the liver is faring.

First, his ammonia level dropped steadily following surgery without medication, so this was an initial sign that his liver was processing the ammonia appropriately. But, without food in his system, the ammonia processing is hard to interpret ultimately.

Then, his daily labs include "liver function tests" which are measurements of various enzymes and compounds that are associated with liver function. In general, Porter's liver function tests have been trending in the right direction, downward in most cases, and this tells us that his liver is steadily improving its function following the trauma of the surgery.

Bilirubin: This is a byproduct processed by the liver. High levels may indicate low processing, and compromised liver function

Albumin: This is a main protein made by the liver. Low levels may indicate poor liver function.

Porter's Bilirubin and Albumin have been steady. This is good news, I guess. Rising bilirubin or dropping albumin would be concerning

ALT - Alanine Transaminase. This liver enzyme functions in normal metabolism, but a damaged liver will release this enzyme into the blood.

AST - Aspartate Aminotransferase. This enzyme is also released into the blood when a liver is damaged, but it can also be found and released from cell elsewhere in the body, so it is usually used in conjunction with ALT for analysis.

Porters ALT has been steadily dropping from 257 units/L to 168 units/L. And, AST has also dropped from 107 units/L to 56 units/L.

Levels of liver Lactate Dehydrogenase (my favorite enzyme!) are also dropping, a good sign.

Since Porter is also on a Heparin drip to control clotting factors and facilitate blood flow to the new organ, the doctors are also keeping an eye on his coagulation factors. But coagulation is a story for another day!

Update: One Week at BCH

Author: Chris

Update

At this time last week, we had just hung the phone with the liver transplant team and were making initial preparations for our travel to Boston! Now, Porter is resting and recovering like a champ with a new liver he has had for about one week! He is pretty comfortable, moving off the Morphine and onto Tylenol to help manage his pain. He is only getting 2-3 doses of Tylenol a day at this point. All of us, Porter especially, are starting to feel to stress and exhaustion of staying at the hospital. Porter is struggling to sleep, and the well-intentioned close care of the nurses is, unfortunately, disturbing to his normal routine with blood tests, ultrasound imaging, etc. Plus, the inconsistency of nursing staff means Porter meets at least one new nurse a day. This stresses him the most I think. Hopefully he can settle into a pattern soon.

Did I capture a smile there?

We started feeding Porter today! A slow continuous pump feed ran all day to reintroduce food to his digestive system. We fed him Pediasure, which is a relatively high protein "normal food" and a big no-no for a metabolic patient. It blew my mind that I was feeding him this. All day he had no problems with the food that we could tell.

We want to (again) thank our friends and family who send their support from afar!

The McNulty's sent a killer care package!

UVM crew rocks!

We love (and miss dearly) our PICU peeps!

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.

Day 2

Author:  Sarah

Today was a good day.  This morning's ultrasound showed good blood flow through all vessels.  The arterial lines (one in each arm) were removed as was the nasogastric (NG) tube.  Porter was doing so well that the transplant team decided he was ready to leave the ICU and go out on the floor.

Porter is starting to open his eyes more.

The medical team is managing Porter's pain with morphine which seems to be working well.  They have him on a small dose because they don't want the new liver to have to work too hard as it's getting settled in its new home.  The morphine lasts about two hours and as it wears off he becomes increasingly uncomfortable.  About half way through the day he started holding his breath in response to the pain.  Breath holding is a totally normal, age appropriate response but it causes his blood oxygen level to go down (desat).  Since nurses on the transplant floor care for up to 5 kids at a time they don't feel comfortable having a kiddo who keeps desating.  So, Porter earned himself one more night in the ICU; which really isn't all that bad considering we have a nurse dedicated to him and access to ICU parent sleep spaces.  A sleep space is a dark, quiet room with a reasonably comfortable twin bed and access to bathrooms with showers.  It's no 5 star hotel but who cares about luxury when you're bone achingly zombie tired?  I got the sleep space last night while Chris stayed with Porter.  Tonight we've switched.

There were two highlights of my day.  The first was when we skyped with Katie.  She's doing really well with Grandma and Grandpa Johnstone.  Seeing her made me smile but also made me miss her even more.  I can't wait until Sunday when Chris' parents will bring her down to be with us for the week.

The second highlight of my day was holding Porter.  I held him for about an hour and even though I had to pee the whole time it was still awesome!

New Liver

Author: Chris

The sun rose this morning and it was a beautiful day, all day, here in Boston! Sarah and I woke from our "cozy" waiting room couches around 5am with a call from the surgeon. Dr. Kim said they were ready to start "closing him up" an they began prepping for the end of the surgery.

During the night, the OR nurse was kind enough to update us every 2 hours on the progress. At 9:30pm, two hours after leaving us, his second central line was installed and functional, but the donor liver was still not ready for surgery. The nurse told us around 2:00am that the surgery was well under way.

It was about 8am before Porter was recovering in his ICU room. Nearly a 12 hour ordeal, but less than 24 hours after being initially notified of the available donor organ. We realized at breakfast that we really hadn't ever been away from Porter for a time anywhere close to 12 hours! We were ready to see him, NOW!

Porter shortly after surgery.

Dr. Vakili examining the ultrasound. Blood flow looks good!

Fully extubated (breathing tube removed), a very puffy and very sleepy Porter lie in the ICU when we arrived. He had about a dozen tubes still connected to him, some running post-op infusions, and some draining abdominal cavity fluid. It wasn't long before the other surgeon, Dr. Khashayar Vakili, joined us bedside and filled us in on the surgery.

Dr. Kim and Dr. Vakili replaced Porter's liver with a partial section of the donor liver. The only issue they encountered was some clotting of the arteries while connecting vessels to the new liver. He said it took about 4 tries and a dose of blood thinner before all vessels were connected well and flowing. Finally, connecting that pesky bile duct was the last challenge before they could wrap up the transplant.

The metabolic team joined us shortly after and we had a nice discussion about ammonia levels. What will be Porter's new normal ammonia level? Post surgery, and all day today, his ammonia was hovering around 60. To us, that's a high number considering we aim to keep him a low as possible, and he tends to trend in the teens and 20's when he's feeling good and has the nitrogen scavenger on board. Levels in the 40-60 range may be his new normal.

Speaking of normal, on Tuesday, before our Wednesday trip to Boston, Sarah spent her evening at home labeling Porter's baby food with protein content. Since his diet was so calculated, we needed to know exactly how much protein was in each food serving. I think Sarah was convinced the call for the transplant was weeks or months away! It certainly surprised us both. The food is still good! But, we hope carefully calculating protein content is a thing of the past.

With Porter sleeping peacefully with the help of some pain medications, Sarah and I slipped away for lunch and a stroll in the sunny courtyard of the Harvard Medical School.

This was day 1 of Porter's recovery. The triathalon of recovery and the cautious trip home is ahead of us. We wish to thank everyone involved, especially our family, friends, and coworkers that have shown us what real support and love looks like. Thanks to the UVM team for encouragement and positive vibes. Thanks to the MUHS community for prayers and support. Thank you MUHS Guidance Department for the swell balloons (Porter's favorite!). Thank you Lindsay for dropping by the hospital with a delicious grilled dinner! Thanks to our parents for taking time out of work in order to help us. Thank you Katie for being a cool big sister and best darn 4 year old around!

Goodnight.

Transplant Day!

It's transplant day!  We got a call from Boston Children's Hospital at 8:45 this morning.  They had a potential donor and wanted to be sure that Porter is healthy and ready to accept the liver.  I confirmed that he was and they said they'd call back with more details.  I hung up the phone and, shaking all over, told Katie that the doctors think they can do Porter's transplant today.  She was a little anxious.  She knows that she will be away from us for a few days and she also knows that the surgery is a big deal.  In spite of her anxiety she jumped to action packing all of her favorite toys, books, and snacks.  I got a hold of Chris at work (thank you, Sean for supervising 10th grade biology insect collecting so that he could come home) and set to work cleaning and packing.

Wednesdays are art therapy days for Katie and Betsy (the therapist) showed up at 10 which worked out great.  She was able to help Katie process what was going on while I tried to calmly canvas the house for essential items.  Poor Porter knew something was up and by the time both of our Moms arrived to help out he was wandering from person to person looking for hugs (and reassurance).

We hit the road at 11:15 and had a smooth ride.  Unfortunately, Porter tends to get a little car sick and he ended up vomiting his 2 o'clock food and medications; not once but twice.  We decided, after a quick stop in the grocery store parking lot to change his clothes and mop up the evidence from his carseat, not to re-dose him a third time.  We thought we were about an hour out from BCH and they told us the ammonul and other fluids would be waiting for us.

Well, of course, it IS Boston and we spent longer than we'd anticipated getting into the city.  We arrived at 4:15, and made it to 10-South (the surgical floor) by 4:30.  There was some confusion about whether or not all of his fluids could run together through his port. (We weren't confused but others were unsure) so the ammonul wasn't running until 6:45.  Guess what his ammonia was?  241. Expletives may have escaped these lips.  But, the good news is we won't have to worry about that anymore!

We handed Porter off to the anesthesiology crew at 7:45 this evening.  Some deep breaths helped me hold it together.  As my eyes filled with tears Chris said to me, "Well, we can't do it unless we do it."  How true.

We had an update shortly after 10 pm.  All of the lines they need are in; including an extra central line like his old Broviac.  They were just waiting for the new liver to arrive and were planning to "begin the procedure soon."  They said it can take anywhere between 6 and 14 hours but that 8 is the norm.  It's going to be a long night but we know how to do that.

A nurse who appeared to be on break in the otherwise empty waiting room kindly brought us some pillows and warm blankets.  Chris finished his sub plans a few minutes ago and we are now trying to rest.  If I could just figure out how to turn off the ridiculously bright light in here I might actually sleep for a minute.  Oh well.