The Unexpected

Recently, the time came for Matthew’s physical therapy plan of care to be updated. We were very excited about this, because he has been making a lot of progress and showing interest in working hard. We just knew that the therapist would have her socks knocked off by his general awesomeness. Evaluation day came. We sat down. We updated his medications list. We attempted to let Matthew show off. Except he was like a rag doll. He was a little pale and completely limp. He struggled to hold his head up. When we tried to make him sit, he folded in half. He didn’t even cry. He was almost completely emotionless.

The next day, he spiked a fever in the afternoon. Per transplant protocol, we didn’t give him any Tylenol and continued to monitor the situation. By bedtime, we knew he needed to go to the hospital. It isn’t unusual for Matthew to be pale and weak with a fever. It isn’t unusual for us to have to take him to the emergency room when a fever spikes. It was, by all accounts, a pretty typical trip to the ER. The truth is, though, that I cried the entire drive there. For the previous two weeks, I hadn’t been able to shake the feeling that something bad was on the horizon. There was no evidence of this ‘bad’ thing. His labs and his behavior had been pretty close to perfect. Yet, that nagging feeling persisted and when this typical trip to the ER arose, fear overcame me.

At about 2 AM, we were admitted to the hospital. Matthew was very dehydrated and his labs were showing some elevated kidney function numbers. We began meeting with the kidney doctor who assured us that his numbers were typical of dehydration. He felt that a few days of IV fluids would have Matthew back to normal. That was a Thursday.

Friday around noon, Matthew was transferred to the PICU. Within hours, they wanted to transfer him to Georgetown University Hospital. I went home to quickly pack some clothes and ride along with him in the ambulance, but before I could finish packing, the hospital had called. They no longer wanted to wait for the ambulance. Matthew was being airlifted and I would need to meet him there.

early days of blood transfusions

early days of blood transfusions

 

I scooped up Erynn and Ruth, smothering them in a big hug, promising them that everything was fine and we would see them in a few days. I plastered a smile on my face and ran to the car.

But it’s a long drive to DC from Hampton Roads. A long quiet drive. Plenty of time for your mind to run wild. Plenty of time for fear to strangle you. I cried and I prayed and I begged God to protect my little boy. Over and over for almost 4 hours. Then I pulled into the hospital parking deck, dried my tears, and stuck that smile back on my face. I laughed with the security guard at how brave Matthew had been on his helicopter ride and greeted his nurses at the GUH PICU, then I climbed into a recliner and tried to sleep. For most of the night, alarms were going off and nurses were all over his bed. Finally, around 5 am, I fell asleep.

My rest didn’t last long.

“Mrs. Long. Things are not improving. Very soon Matthew is going to need dialysis. I know he’s had a hard life. You need to think about what you want for him.”

I need to think about what I want for him.

What I want for him?! I want him to grow up. To fall in love. To be loved in return. To live a long happy life. To defy all of the odds. To prove everyone wrong. To heal and have no evidence of this ‘hard life’ he’s had so far. That is what I want for him. And that means fighting for him. Never ever stop fighting for him.

Before she finished her sentence, I knew the answer. But she was gone. Giving me time to ‘think’.

I told my body to breath. The air wasn’t really that heavy. I told my brain to move my muscles. They still worked. I focused really hard on brushing my teeth and putting on clean clothes. Every step took effort. Every movement was in slow motion.

He was in acute kidney failure. His body was attacking his own red blood cells and he was anemic. He needed multiple blood transfusions, which were complicated by his having previously received numerous transfusions. We found that most of the blood in the banks were not compatible with Matthew’s body.

I couldn’t believe this was happening. We had already walked this road. I had already seen him in a bed, wires and tubes everywhere. Doctors and Nurses in a never ending tide. I had already had to find the strength to voice the words that were blaring in my head.

Last time it was “I don’t want him to die alone. Will I have time to get to him before he dies?”

Last time, I had Rusty at my side.

This time, it was “I don’t think he’s coming home with me”

This time it was Rusty that I had to say this words to. This time, I was hours away from him, alone on a deserted campus.

No parent should have to experience being told that their child is dying. Certainly not the same child four different times.

3 pounds of water weight in an attempt to flush his kidneys

3 pounds of water weight in an attempt to flush his kidneys

The next week was a balancing act of crying and putting on a brave face. Every day I sat down to my Bible and opened my prayer journal.
But I found myself unable to put words down on my paper. I found Bible verses and was unable to pray them back. Instead I copied them down and stared at the page. Looking back, it dawns on me to be thankful that the Holy Spirit intercedes for us and understands the groaning of our soul. I certainly wasn’t able to express me fears or my desires. I prayerlessly watched the team review his labs and monitor his snail paced progress. Finally, I was told that he was stable enough to move to the step down unit.

I expected his time in the step-down unit to be short lived, but it dragged out for 2 more weeks. His poor body was carrying 3 pounds of fluid. He was miserable. It hurt to move. He had IV’s all over the place, including his neck. He had frequent vital checks and constant monitoring. After a few days, his kidney numbers slowly began to trend towards normal. The hemolysis appeared to be slowing. The blood transfusions were further apart. ( A good thing because he often would begin to reject the blood halfway through the transfusion and reboot the hemolysis). It turns out that correcting the anemia is a long, bumpy road. Just when we would think he was stabilizing, he would suddenly attack a bunch of red blood cells. Back and forth we went, with labs and medications and IV infusions.

Approaching stable

Approaching stable

Over those two weeks, as my heart rate began to slow and the fear began to slip away, I was able to find words to put down in my prayer journal. It was then that I realized how wrong my heart had been. I had been trying to pray through fear when the problem was that I even let fear in in the first place. I had let go of the promise that God had made me ‘the last time’, the promise that enabled me to send my baby off into transplant surgery without a single reservation. He promised me that he had big plans for Matthew’s life. I had nothing to fear because all of it is part to the big plan for Matthew. That may mean that Matthew outlives me. That may mean that Matthew lives a short happy life. I don’t know. But, I do know that it is in God’s hands and somehow every bump in the road is working for good. It’s quite possible that I will never see the intended fruit of our labor. It’s quite likely that I will once again, if not many times over, have to surrender my fears and Matthew’s life into God’s hands; that we will spend his lifetime trusting God to work through the teams of doctors that monitor Matthew.

 

Maybe eventually I will learn to let go of my fear earlier on in the process. Maybe next time I won’t have to go through it all without my husband by my side. Hopefully next time, I will be able to once again watch God work yet another miracle in Matthew. He has saved him over and over again; healed him over and over again. For now, I find myself resting in the promises of God, thankful that when my faith falters again (because it will), I don’t have to have the right words in my heart, I just have to run to his open arms, seek shelter under His wing, and ride out the storm.

Remind me of that.. next time.

 

 

2 thoughts on “The Unexpected

  1. I think about your family daily and keep you all in my prayers. You write so beautifully that I was right there with you. I could actually feel your pain in all the emotions you were going through during that time.

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