blessings · changes · Children's Hospital of Pittsburgh · God's will · liver transplant · Maple Syrup Urine Disease · MSUD

An Expected, yet UNEXPECTED Phone Call

Continuation of Changes

Sunday, February 22nd started like any other winter day. It had snowed overnight, so my clinical class had a 2-hr delay. Sunday School was cancelled so my parents decided to stay home from church, due to the snow. I left for school around 8:30am. My day went smoothly, spending several hours shadowing in the maternity unit, before heading to Lancaster to the college for a test. On the way to the college I called mom with some questions about my uncle’s birthday party that was that evening. She made a comment: “call me when you are finished with your test.” About 3:30pm, I called home and when I asked to talk to mom, my sister informed me that my parents and Jordan were headed to Pittsburgh…my mind started reeling. It was only 3.5 months since he was listed on the transplant list and we had been told the expected wait time for a transplant was 9 months to 3 years. God was in control!

After talking to my sister, I found out that at 11:24am they had received a call from Pittsburgh, notifying them of a potential donor. They were told to pack their bags and wait for a 2nd call. The 2nd call came at 3:15pm and by 3:30pm, they were headed westbound. They arrived at Children’s Hospital of Pittsburgh around 7:30pm and began the process of admission and tests.

IMG_2518 (640x427)My parents were told transplant would be sometime Monday morning. But they waited and waited. They were then told to expect to go to the OR around 3pm, but yet another delay. At 5pm, things started happening and they were soon found in the OR holding room. Jordan was in the OR from 5:30pm to 2:30am.  When he came out of the OR and in into ICU, he was intubated and sedated. He remained intubated and sedated until Friday morning when they were able to close his incision.

IMG_2536
Out of the OR and in ICU

Some of us children drove out Saturday morning to see Jordan and for me that was one of the hardest things to do. To walk into the room and see him laying there, trying to wake up but looking so scared. It was later determined on Sunday that he couldn’t handle the morphine – it was causing really bad hallucinations. He was able to smile for us and we would talk to him – some times he would make sense and then the next time, things just didn’t line up.

A father's love... at one of his worst moments after coming out of sedation
A father’s love…at one of his worst moments after coming out of sedation

Seeing my dad at Jordan’s side doing his best to keep him calm, I was reminded of song sung by the Esh Family:

Leaving Saturday afternoon was one the hardest things that we children could do. Seeing Jordan so low, but I kept trying to reassure myself that it was the effects of coming out of sedation along with morphine. I was also reminded that God was still in control. It was in his timing for Jordan to have the transplant now and he would provide us with the strength to go through these “low” moments. Mom continued to update us throughout the week, as he made small steps – all steps in the right direction.

His first taste of bacon and eggs!
His first taste of bacon and eggs!
Up and walking...
Up and walking…

March 6th, 11 days after transplant, Jordan was released from Children’s Hospital of Pittsburgh, to Shadyside Family House, where he would remain until March 16th. During that time, he would need to go to the hospital Mondays and Thursdays for labs and clinical visits.

Sunday, March 8th, we children again set out on the 4-hr drive to Pittsburgh. Even though we knew he was a totally different person in regards to what we had seen a week prior, many of us still were doubting inside. It was later expressed among siblings that this was the hardest, longest drive – mixed with feelings of fear, uncertainty. But most, if not all fears were set aside when we arrived at the Family House and found our smiling brother, lounging on the sofa.

Proudly showing off his "shark bite."
Proudly showing off his “shark bite.”

Spending time with him that day was good medicine for us all! Even better was seeing him sit down and enjoy the food we had to eat – it made it seem even more like reality. We spent the day talking, putting puzzles together with Irvin and Nancy Weaver (they brought lunch and spent the day with us). As we headed eastbound that day, we were much more at ease, knowing he was doing much better and on the road to recovery. We also were bringing father home with us, after being without parents for two weeks.

March 16th found mother and Jordan headed home from Pittsburgh, where they would be for a short time. Monday, March 23rd, he needed to go back out for blood-work and to remove half of the stitches. Monday’s blood work revealed some concerning numbers, so Wednesday, March 25th, found my parents, Jordan and Miranda once again headed to Pittsburgh with plans of a liver biopsy on Thursday. The biopsy revealed an onset of rejection, so Friday evening he was readmitted to Children’s Hospital of Pittsburgh for a bolus dose of steroids. He is responding well to the steroid therapy and plans are to be discharged home on Wednesday, April 1st.

Miranda enjoyed being with her big brother.
Miranda enjoyed being with her big brother.

So as we look over the last month, it has been a whirlwind. But God’s timing is perfect and He has provided the strength for each moment. As I look back and see how fast things changed, I am reminded of the verses that reminds us of the Coming of our Lord:

“Behold, I shew you a mystery; We shall not all sleep, but we shall all be changed, In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed.” 1st Cor 15:51-52

In a “twinkling of an eye”, our lives changed when we least expected it. And yet the solemn reminder, that like those few hours that my family had to prepare before receiving that final call to leave for Pittsburgh, we as Christians also have a “few” hours to prepare before the final call. The first call has been placed; we have now been commanded to prepare as we wait for the final call! Just a challenge to you: are you prepared and ready for that final call?

Blessings to you all! Thank you for the many prayers that have surrounded us in the last month as we have taken the transplant journey. The prayers and love have been felt greatly!

Until next time,

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