Monday, March 22, 2010

Can it get any worse?

What an “adventure”!

Talitha’s central line ruptured last night a little before 8PM. This constitutes an emergency for which we’ve been trained to have special clamps on hand which we quickly place between the rupture point and the blood flow.

(Tali’s central line was surgically installed back on January 11th prior to beginning the first induction cycle of chemotherapy. This line is inserted into her chest and empties into the blood flow near the heart. As previously explained, some of the chemo drugs like methotrexate are so toxic that if they were administered through a peripheral IV in the arms or legs it would burn the flesh. By entering the body through the central line into the chest, the active blood flow pumping in large volume by the heart quickly dissipates the chemo throughout the body avoiding tissue burns.)

Because the hospital that’s five minutes from our home is not equipped to repair these pediatric central lines, we drove an hour to Salt Lake to the PCMC. We’d called ahead so by the time we arrived at the 4th floor ICS unit, the charge nurse had a repair kit ready to go. In less than an hour, the line was (supposedly) repaired and we were on our way back home.

At 3:30 AM, Audrey heard Talitha fussing so she got up to change her diaper. Since it had been more than the prescribed four hours, I also got up and removed the emergency clamp that had kept the pressure away from the point-of-repair so the glue could completely set. As I laid Talitha in bed, I FORTUNATELY felt something wet. We turned on the light to find blood on the bed and soaked through the gauze wrapped around the line repair site.

(When we’d gone to Salt Lake the first time, we took Afton and Madeline with us to stay at Grandma’s house since they didn’t have school today. Before leaving, Afton said a pray for us asking that we make it safely to the hospital. She thanked the Lord that we’d notice the broken line so quickly. Hours later, I found myself quietly thanking the Lord again and again throughout the day that for some reason, I felt that wet spot and didn’t leave the room at 3:30AM with her central line rapid bleeding. Tali’s life was preserved…again.)

Trip #2 to Salt Lake was a bit less animated though Talitha did try for a little while to cheer her parents up. Same scenario as the first trip: an hour drive to Salt Lake to the PCMC, repair kit was ready to go and the very experienced charge nurse who has done more of these repairs than any other nurse on staff apologized and repaired the line again with even more care and more glue. Then back again another hour’s drive to Provo. Only this time, Talitha was beyond exhausted and got sick and threw up all of the milk she’d been drinking to help calm her from what must seem to her an endless litany of private-space invasions.

We’ve had a number of trials over the years as everyone does. And when we have thought we were at point it couldn’t go lower…it does.

So, I guess it’s natural to ask the question, “Can it get any worse?”

In case you've asked that question and maybe haven't received a definitive answer? The answer is: YES. (Maybe we'd all be better off if we stopped asking that question.)

We arrived home in time to see Trevor and Malorie get up and get ready for school. We went back to bed until Talitha woke up and we had to get our day going...again.

The home health care nurse came around 9:30 to draw blood. The nurse saw evidence that Tali’s platelets were low even before getting the labs back. She started having bloody noses and red dots on her skin. Then after the nurse left, we noticed that the wrap around the line repair area was soaked with the saline/hepron they used to flush her lines after the blood draw. No way was the line broken again.

Yup…trip #3.

Now things were getting stressful. Talitha’s platelets were down to 6—they give transfusions if the platelets get down in to the low 20’s or teens. At a 6, she has practically no blood clotting ability. And with the central line broken for a 3rd time in just over 12 hours, they had to insert an IV in Tali’s wrist to give her platelets.

This time, the repair work was done in the Oncology clinic at the PCMC in Salt Lake and we spent the day there.

Tali received the platelets, the nose bleeds stopped. I suggested they keep the peripheral IV in her arm until we were certain the central line fix held but they talked me out of it.

No sooner had they removed the wrist IV than Talitha broke out in hives—a reaction to the platelet transfusion. The oral medicines to treat the adverse reaction would take too long to work in her system. The central line was clamped off and they wanted us to leave it clamped for another 6 hours.

AAAAAAAARRRRRGGGGGHHHHH!!!!

I just couldn’t stand the idea of them putting another IV line in her arm or leg. So when they said that normally, the central lines can be used two hours after repair, we made the decision to try it and risk another rupture. All of us including the nurse in the room prayed and prayed and prayed. Please let that repair hold…please!

It did.

Talitha received the medicines, the hives left, we made it back to Provo a little before 7PM. Everyone’s still alive.

Can it get any worse?

Of course.

More importantly: Can it get any better?

It did and it does.

I’ve gone on way too long tonight…but...

...let’s remember for just a moment why we’re here on earth. The scriptures make it very clear that this is a testing ground. We’re going to have the OPPORTUNITY to experience trials that take us beyond what we can handle. That’s OK. And the reason it’s OK is because we’ll never be taken beyond what God can handle.

In that light, can you see why trials can be so valuable? If we’ll just hold on, we’ll get to experience what the hand of God really feels like. We’ll know when we’re beyond our own ability to cope and bear the burdens. And when we exercise faith in those hard, hard moments (no matter the length of the "moment")…we have the privilege of seeing and knowing and feeling a heavenly strength and power that can come in no other way than when we trust completely and stop fighting God. He loves us beyond our comprehension and can make WAY more out of us than we could if left to our own devices.

So tonight, I’m celebrating the trials. Not because I've gone crazy--though Audrey may question that sometimes--and not because I have a desire for more pain. (I really don't like pain.)

Said differently, I'm celebrating God's will, His light, His mercy, His power, strength, and wisdom. He's flooded my life with miracles and grace beyond what I thought possible. The ways He's answered my deepest, heartfelt prayers have been so different than what I thought I was asking for--and vastly superior.

With the perspective that He is helping me see, I'm learning that it's not about how many times a central line can break in one day. It has a lot more to do with my response and attitude--toward God, myself, my family, my neighbors, my friends, even total strangers--when those problems of life happen... regardless of how exhaustingly frequent.

2 comments:

  1. William, your faith is amazing and such a testimony to all. I want you to know that we are praying for your sweet daughter,you and your family.

    i also want you to know how much your last 4 or 5 paragraphs of this post meant to me. We all go through our trials and struggles,while ours can in no way compare with yours at this time, your comments have helped me to realize why the trials that we have face in the past 18mos or so are part of a grand plan. thank you for sharing your trials with us.
    brenda

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  2. Thank you so much for your prayers, Brenda. It's what keeps us going.

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