Joy for the Journey no. 7

Joy for the Journey no. 7

“Bless the Lord, O my soul, and all that is within me, Bless His Holy Name!”

THANK YOU for being very present in our darkest days and celebrating every blessing with us! Thank you for every card, gift, thought, meal, mile, email, cookie, and act of trust and prayer!img_0701

Day 7 Post Op: For three months, Randy and I have not been able to worship together at the same time in the same place very often. However, on this night we enjoyed a rare evening of prayer and praises at Crossroads Community Church together.  We had so much to be thankful for!  Ian was there via face time but fell into a beautiful sleep after the first song! img_9158His PRES was still affecting him and the medications are quite strong. Thank you Auntie Kalani and Keanu, Lindsey and Leighton, Uncle Michael and Auntie Anita for staying with Ian so I could enjoy some worship time with Randy. I wanted to Psalm 103! Bless the Lord, O my soul!

Many got to speak to Ian via face time and encourage him through the difficulties of recovery.  It was beautiful to hear the impact of his life on yours.

 

Day 8 Post Op: Dr. Myke said his PRES was reversible and it was. Ian’s mind was becoming more normal again! His whole body was getting used to a blood flow it had not seen in years. Before transplant he would be fine with a surprisingly low blood pressures in the 70s without feeling dizzy at all. His body had acclimated to such low pressures it had many adjustments to this strong new strong heart.

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We are thankful for all the UCLA AACF students who came to bring us meals during this time! They might have been strangers, but they brought Joy and comfort to us as we waited for recovery and healing. Just to be fair, there were a couple USC friends of Lindsey who brought us an amazing gourmet meal as well, and friends of Leighton that made encouraging posters. USC was not intimidated or put off by the UCLA hospital. University of Iowa, you were not forgotten by Ian either! Ian is grateful for you too! There were no rivalries when it comes to caring for the sick! Thank you!

They said they were going to move us to the Floor so we started packing up! The Floor is for less critical patients and gives me more time to practice taking care of Ian on my own. Down came the lights, posters, and cards.  We packed up and waited all day… but NOPE. No rooms were available. We made the most of it.  Micah and Kaiya started Busking to help pay the bills…

Click here for Kaiya and Micah’s Hospital Debut.

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Day 9 Post Op: First heart catheterization to see if Ian’s body was rejecting the heart.  They measure pressures in the heart and take a small biopsy for first signs of rejection. All is well and they think we will be discharged tomorrow!  Still no rooms available on the Floor so we waited in the PACU until one came available. We are getting good at waiting!

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He made a little video log while we waited for a room to open up. God has been a light in the darkness!

Click here for EN’s Day 9 Post Op Video Log: Light in the Darkness

While drifting off to sleep, I woke with a start thinking, Maybe this is our last night in the hospital after almost 3 months! So I woke Ian up to take a picture…

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He didn’t love it. But he’s so accommodating with his mother and talked with me about all we were thankful for! That gave me Joy for the Journey!

Day 10 Post Op: Maybe today was discharge day!

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NOPE. His Prograf levels were too low. 6.3 and they wanted a 12! NO DISCHARGE FOR YOU!

So we made the most of our time.

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Day 11 Post Op: Maybe discharge today! We even took a good bye picture with our doctors and nurses in anticipation!

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But NOPE! His Prograf levels Went DOWN to 5.2! WHAT?!

NOPE.

I had a big grin when the doctors came in. Either I would Laugh because we could leave or Laugh because we had to stay.  This was me finally learning to SMILE at my future.  I even put some decorations back up!  But…ofcourse…Prograf levels were still too low. No discharge.

imageI made the most of our time!  I got to go see Ian’s old heart instead!!  Fascinating for me! We are indeed fearfully and wonderfully made. It is evident, even in a warn out enlarged heart like Ian’s. The pathologist walked me through the whole heart and explained what was happening in it. Even in our weakness He is strong! Even though we are all dying… God’s design is better than anything we could ever make ourselves! He is a powerful designer! This brought me joy for the journey. I only put a small picture of it for those of you who are a bit queazy. Just move on.

 

 

Day 12 Post Op: By this time, waking Ian up at night was getting old. Calling Randy after each morning result to tell him he didn’t need to come pick us up was also getting old. We had learned so much about waiting from Ian while we waited for a heart. He showed us how to Delay Gratification. How to not complain. How to live with all of our plans on hold while the Lord unfolded His plans. Waiting for a heart while in constant pain and nausea was tough. But we did it with God’s help and with all of you. Waiting for discharge was much easier, but I still struggled to apply Ian’s example.

I even stopped saying, “Maybe today!” Of Course it wasn’t. NOT TODAY. Prograf only went up to 6.2. The doctors were trying to bargain with Ian’s body. At first they said they wanted it at 12. Then they said they’d settle for 10 but bring us back for another blood test right away. Then they said if they could get it to at least 8 they might consider discharge.  But his body kept wanting more Prograf before it would show any positive change! We made the best of our time…img_0760

I spent more time in real prayer that night. I realized I could pray for something better than a compromise with Ian’s body. I could pray for a prograf of 12 and wanted Ian to go home on the right levels or not at all. I missed Randy and the rest of my family so much. There were no visitors because people kept thinking we would be discharged and no one wanted to be the one that got him sick. (Though Nana, Emily, Lammy, and Naomi made a quick visit on this night.) I needed more heart to heart time with the Lord. I was really ready to go home…but only if Ian was safe.

Day 13 Post Op: Maybe Today! But Ian’s blood pressure began to rise quickly and a migraine overtook him. It reminded me of the day he had his seizure. I padded him around the bed and pulled up all the rails. We covered the windows, turned on the worship music,  had several different nurses checking and double checking. Doctors were consulted. Meds were ordered. We got up to 145 systolic quickly and the nurses looked concerned. I massaged Ian’s head with essential oils and prayed over him in a whisper.  Going back to the CTICU seemed so tiring to me and the wind left my sails.  I just knew they wouldn’t let us go home now.

But they DID! Amazingly after an hour of rest, TLC, and Prayer he was fine! I was nervous but they reassured me that his meds would stop any seizure activity. His Prograf levels went from 6.2 to a perfect 13 in one day! We didn’t have to settle for a high risk heart or a below average Prograf level! That’s when they decided to discharge us! Praise the Lord!

On Friday September 30th, Ian ended his 81st day in the hospital since July 3rd!

We made our rounds to say good bye and waited for Randy to come pick us up. (I messed up his hair with the massage. I did that.)

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Ian’s homecoming blog is coming soon! He has been tired still, and we are both preoccupied with taking care of him… and the rest of the household. We are still catching up with our lives! Thank you for joining our journey with us. There’s so much to look forward to and so many Joys along the way!

Almost Home!

 

Jill

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