our first month and first biopsy

One of the first things they tell you when you are being evaluated for heart transplant is the wait can be anywhere from six to eight months.  Within the first few weeks of moving to Lurie Children's we met a couple of families who were through the evaluation stage and onto the waiting stage.  Some were there less than two months and others were there going on six months.  Then in a whirlwind two weeks, they all got matched.  Excitedly, we watched the recovery process unfold.  It was amazing to see that in two or so weeks many were on their way to the transplant floor at Ronald McDonald House (explanation coming).  When we were notified that Lucy had been matched to a heart, I couldn't help but think, new heart = better, faster recovery.

BEFORE     |     AFTER

There were two things I failed to realize.  The first, our friends before us, had waited longer for their match, which gave them some extra time to get in the best possible health for this surgery.  The second, Lucy had not fully recovered from her Fontan and had sub par nutrition for almost a year.
Needless to say, Lucy's recovery would take a little longer.

Post surgery Lucy remained intubated for two days, because her lungs were a little wet and that has always impacted her breathing tremendously.  By day three, she was ready to get that tube out.  During extubation, Lucy dropped her saturations to the 40's.  She remained NPO the remainder of the day in case a re-intubation was necessary.  High flow at 20 liters was providing some extra support.

Her first biopsy was set for 2 weeks post transplant, with compromised lungs we were proceeding cautiously  The team had been discussing BiPAP as the next level support.  Lucy never had to wear a mask like this, so we started practicing wearing it to get comfortable.  Ten minutes here and there in hopes that we would not need it.  We carried on with as normal of schedule as possible, including physical therapy sessions.  Get a load of her first walk with a new heart!

As we approached two weeks and our first biopsy, our battle with fluid continued.  We struggled to find the right oral regimen and her x-ray definitely showed that.  Going into the weekend her baseline cough was back effecting her oxygen saturation.  As her x-ray worsened, the team thought a switched back to IV diuretics was necessary.  The night before the biopsy things got a whole lot worse.  Her cough kept her up the entire night and she was dropping saturations into the low 70's.  Tuesday night they cultured her and the result:  Positive for rhino enterovirus.  Biopsy postponed!

A virus, with an already compromised immune system, what luck.  This virus took every ounce of energy from her.  She wasn't sleeping because the cough kept her up and her work of breathing had her dropping saturations, so much so she was up to 20 liters of support with the help of nitric. By Thursday, I had this feeling she would be intubated by the end of the day.  During rounds we decided to give BiPAP a go and man am I glad we did.  She got that mask on and slept for 7 straight hours.  This virus would run its course in ten to fourteen days.  The team postponed the cath for another two weeks and would monitor rejection by echocardiogram.  They decreased her rejection medications to allow her to fight a little better.  I couldn't help but wonder how this would impact the results of the biopsy.

She wore the BiPAP mask for two straight days with two one hour breaks during the day, then we moved to using it solely at night with oxygen support during the day. The cath was rescheduled for May 7th (almost one month post transplant).  We tried once more to move to oral diuretics, however, two days later she was puffy and uncomfortable.  The team upped their game and we went straight to IV bumex (stronger diuretic than lasix) to ensure we would not postpone the cath.  Our first biopsy went better than expected.  We thought she would be grumpy and out of it most of the day.  It was opposite: happy and playful!

We got full results back the following day:  ZERO REJECTION.  We are so thankful for all the prayers and especially thankful for our donor family.