Sunday, March 20, 2016

The Tale of a Second Transplant

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(The exact date of Binh’s transplant surgery will remain a cherished little secret between the donor and us.)

My daughter Rose, Binh and I left Kingston by train 2 days before Binh’s transplant, loaded with our personal items as well as with a lot of medical supplies.  Pre-transplant, each girl was on quite the medication regimen and also still had a gastric tube, which in itself requires a lot of gear: feeding pump, IV pole and dressings of different kinds.  In addition, we had no idea of how long I would stay in Toronto, so I brought many different things to make life at Ronald McDonald House (RMH) more comfortable.

Michael, still weakened by Phuoc's transplant, stayed in Kingston with Phuoc on daily homecare nursing, grammie and the rest of the children.

We arrived at Toronto Union and met with a friend who had offered to drive the gear to RMH for me.  An organized, thoughtful and well-planned Service Woman, she had also bought a few things to garnish our mini fridge.  Once at RMH, we settled our room and made our beds.  With suppertime approaching, Rose, Binh and I headed out and walked randomly (Binh was comfortably being pushed in her stroller…).  We decided on some Thai food in a cute little spot on Dundas.

I remember watching Binh: she had no idea of what was happening.  I remember thinking of how nervous Michael got in the days leading up to surgery: the only times I had seen him that nervous was when we bought our first house, and prior to his first tour in Afghanistan.  I remember having a thought for the donor: how was he or she feeling?  Binh barely ate.  Liver disease made her nauseous to the point she had no interest in eating.

We went back to RMH to prep the meds and prepare her pump for the night.  We snuggled in bed and binged on free cable tv.

Binh was admitted the next morning, the day before transplant.  Many tests were done on that day to make sure she was ready for the ordeal.  Stool sample, chest x-rays, bloodwork upon bloodwork, and finally, some IV lines were inserted early evening.  Never an easy thing to do with the twins.  The IV team came in the room, ready for the challenge.  She earned an Elsa crown and wore it with pride.  Rose walked back to RMH before dark and I stayed with Binh on 6A at Sick Kids.  It all seemed too familiar, having been through the same thing with Phuoc.  However, with Phuoc, I knew Michael would show up for sure.  Would our donor show up for Binh?  I can’t believe I ever had doubts.  I remember asking Life to give this person the strength needed to go through so much.  They were going towards the unknown.  But I had seen Michael…

I woke Rose up by phone the morning of the transplant at 7h00 to hurry her to the hospital.  Binh was still sleeping.  The transplant nurse came in and told me the donor had arrived across the street.  I cried so much.  Relief, and fear for him or her.  ''Who would do such a thing for my daughter…  This little orphaned girl who was given so little credit at first…'' Crazy thoughts were going through my mind.

Timings are blurry.  Rose arrived and we waited quite a while before heading to the holding area with Binh.  Once there, she got quite agitated and was given a sedative.  She became limp and heavy in a matter of seconds.  I met with the OR team and was explained once more how things would go.  Binh being basically unconscious made it easier.  Also, there was no camera crew in the room, unlike the first time around.  The whole event was kept under wrap.  I kissed my Beauty good luck, watched her go and cried.  Again.

Rose kept me busy, although I have no memories of what happened until 3h00 pm.  I realized then that things were not matching with the first time around.  The liver had not been transferred yet from Toronto General.  Was everything ok?  Was the donor ok?  It’s at 3h15 pm that I got confirmation that the liver had just been transferred and that the donor would be out in a few hours.  Binh had been all prepped (it takes up to 2 hours to insert all the lines and prep for the actual transplant).  ''Beautiful liver'' I was told.  Good job Donor on being a healthy person!

Binh’s surgery took 10 hours.  I met the doctor late that night it seems.  I remember some of the words coming out of his mouth: ‘’New liver on the bigger size, smaller hepatic artery than anticipated for Binh, micro surgeons called in, abdominal wall closed, g-tube kept, ICU for up to a week’’.  All in all, relief that she was most likely to pull through, like her twin sister.

I was able to see her in ICU a while after.  Beautiful little doll who had gone trough so much.  A vision all too familiar to me. 

I walked back to RMH that night, just staring at the windows around where Michael’s room was a while ago.  I knew that that person was in absolute pain.  I was hoping that someone was with him or her to advocate for his or her needs.  That person’s gratification was to know they had saved a little girl’s life.  Totally unselfish act of heroism.  They would not get the gratification of an embrace with Binh a few days later like Michael had with Phuoc.  This still blows me away.  But they sent their love our way, through the team.

The first day after surgery is referred to as day 1.  I made my way to the ICU with Rose early in the morning (always saluting our donor in my heart as I was walking in front of TGH), after having phoned overnight to see how she was.  Binh had a much more difficult time than her sister.  She had to be tied to the bed for much longer as she only had one idea in mind: pulling all tubes out, including the breathing tube.  My little lion, my fighter.  Heavy sedation and morphine were the only solution.  As mentioned before, the liver was a bit big for her and this made breathing trickier.  In addition, she suffered from partial paralysis of her diaphragm.  This happens in 10% of cases.  I was allowed to hold her in my arms for a brief moment.  First liver ultrasound was done and the results were A-1.  New liver was working beautifully.

Day 2:  Her breathing tube was removed.  Shortly after, she had a big seizure.  That took us all by surprise.  CPAP was brought in to help with her breathing, until the diaphragm wakes up and starts working on its own.  Eyes started to clear, orange tinge fading away.

Day 3 and day 4: breathing therapy with CPAP on around the clock.  Once Binh was no longer attached to her bed to restrain her, I never ever saw her scratch again.  Itching disappeared right away.

Day 5: Off CPAP!  But still in ICU.  By this time, I was thinking our donor might be on discharge avenue…  Always sending good vibes his/her way…

Day 6: Binh had her first post transplant poop.  ½ white (typical of liver disease), ½ brown, a sign of a good working liver!  Mom even took a picture!  Discharge from ICU and move to 6A: victory!  Xanthomas started to ''melt'' on her knuckles.

All the time Binh was in ICU, I went back to RMH to sleep at night.  This went on as long as she was on one on one nursing.

Day 7:  Fever started, with her wound leaking.  Her intra jugular lines also got infected.  On top of that, we started to work on weaning from morphine.  This is not fun to witness.

Day 8: her true self came back.  In a bad mood, she showed the exit door of her room to the well meaning clown, and put mommy in the doghouse.

Day 9: first walk to the playroom!  Later that day, insertion of picc line. A surgery in itself.

Day 10: She became lethargic with a low haemoglobin.  The culprit: Passenger Lymphocyte Syndrome.  The residual white blood cells from the donor started to attack her red blood cells.  The donor was blood type O and Binh is blood type A.  She received transfusions of type O blood to calm down and satisfy the donor’s white cells until they die.  Fascinating.

Day 11 is when we got her dressed for the first time.

More episodes of low haemoglobin happened, with more transfusions in the following days.

I walked in front of TGH that day and saw people obviously being discharged.  Our donor was probably already gone by then.

In the mean time in Quebec city, my father was admitted to the hospital.  So was my mother.  My father suffered from Alzheimer’s, mom has heart problems.  My dad’s health deteriorated very quickly.   He fell and broke his pelvis while in hospital.  As Binh was receiving transfusions, so was he.  At the same time.  I last spoke to him 2 days before he died.  He never forgot my name and always remembered my children.  He loved them all.  This was the last time I heard him say my name.  Had he been able to talk more, I know he would have told me to stay with my daughter in Toronto.  That’s why I stayed with Binh.  I told him Binh was going to be ok.  I think this might have been his green light to stop fighting.

After his passing, Michael made his way back to Toronto with Phuoc to allow me to attend the funeral with our older 3 daughters.  Our 4 sons stayed in Kingston with Grammie.

Looking back, it feels like I was hit by a truck.  I remained numb for months.  An emotional wreck.  But I am a master at hiding those things in public.  Some days are still very hard, especially with all those anniversaries.

This second transplant has a happy ending though.  Binh bears the piece of liver of a wonderful person.  When I hug my little girl, it is surreal to think that she shares more with this person physiologically than with me.  And I see the same thing when I watch Michael and Phuoc together.

Binh has never had any rejection episode: a match from heaven!

Our story made headlines around the world: Michael and I are only the instruments, the voices speaking on behalf of Binh and Phuoc.  Those two little girls who at some point had no future, have saved many lives through their sufferings.

Be an organ donor, like me.  Register and make your intentions known by your friends and family.  Become the voice for those waiting for the Gift of Life.  Be their advocate.

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