A Struggle: Who sets the pace?

We have hit the 72 hour mark.IMG_6071

The doctors said more often than not, if a heart is going to conduct on its own post
surgery, we will see this in the first 24-72 hours post-op.  Reiss’ heart is still not conducting properly.

We have hit the 72 hour mark.

The doctors also said that even though most hearts conduct 24-72 hours post-op, they will continue to wait for a total of 7 days (we are at 3), to make a decision on whether or not Reiss needs a permanent pacemaker.  However, the temporary leads are starting to fail.

It’s a ticking time bomb.

Waiting isn’t an issue when other things are not failing.  Hanging out with Reiss, following physical therapy, and killing time while she recovers are easy to do.  But we have a ticking time bomb.  Every time the alarm on the monitors beep and her heart rate, pacemaker, blood pressure, or pulse ox dip in the wrong direction, we hold our breath.

So, who sets the pace?

WhenIMG_6078 Reiss was born at 39 weeks, she had a cath procedure to place a stent at 8 days old, and we were home 13 days after her birth.  During her first open heart surgery, we were supposed to be in the hospital for 7-10 days.  Instead, we were out in 5.  So, when we were told two weeks in the hospital and one week would need to be spent locally for a follow-up appointment, we thought that we could beat that pace by at least a day or two.  Were our expectations too high? Are we underestimating Reiss right now when we second guess our projected pace?  Who sets the pace?

First, it will be her heart.

Reiss’ heart will set the pace.  It will tell us when it is ready to conduct, or wIMG_6075hen it needs the pacemaker.  It will let us know when it is ready to pump according to this new circulation, or when to give it assistance.  The body does some amazing things, and the doctors here at Texas Children’s see this every day.

The pacemaker leads on her atria have failed only 72 hours in (they usually last 7 days).  This leaves her atria conducting at their own pace – which is close a 140 beats per minute. Reiss only has the leads sending an electrical current on her ventricles at this point.  The doctors set the pacemaker to force the ventricles to conduct at 100 beats per minute, regardless of what the atria are doing. Sounds like chaos, right?  The ventricles are what is driving her circulation right now.

The surgeons would like to keep waiting.  

They are setting the pace for making a decision in regards to whether or not Reiss will have a pacemaker for life.  I feel like this pace is wildly slow and completely a race at the same time.  We will just sit here and wait, helping Reiss recover. But every time that monitor fires off its warning signal, we hold our breath and watch to see if her heart is failing in any way.

The doctors keep changing the voltage on the pacemaker to double her baseline. Last night, she was at 1.5, so they set the voltage to 3.  This morning she was 3, so they upped her voltage to 4.IMG_6079  This evening, she was at a 4, so they upped it to 8.  The change in voltage is not due to anything changing with her heart – it is because the leads are wearing out. Trying to wait for 7 days is no longer an option.  We will wait until Monday or Tuesday, unless Reiss’ heart make a different decision.

Reiss is still progressing.

Meanwhile, Reiss is still hitting milestones at her own pace.  She started to introduce some foods today (peach yogurt is the current favorite) and is sitting up better each time we put her in the chair.  I have a feeling walking is in her near future.  We cheer when she coughs, urging her to do so to get the harmfull fluid off her heart and lungs, while simultaneously cringing, hoping blood will not appear.

Reiss is setting her pace.

She is helping set her pace. Yes, we help carry her through it, and persuade her sometimes to push herself a step further, but she is setting her pace.  Her need for independence is already kicking in, wanting to feed herself and take oral meds without help.  Her color is getting better and she is talking more with doctors and nursing staffIMG_6083 – telling her jokes and/or asking questions.  Mostly, though, she sleeps.  Her mind and body have been through so much this week.  She needs to rest, to rejuvenate, and prepare to get stronger each day.

We will change our pace.

We – Roy, me, and the grandparents – will have to change our pace.  I guess I can’t speak for the whole group, but I know that I have been firing on all engines since we sent her to surgery.  You may not see it on the outside, but my insides are trying to move at warp speed toward the next milestone.  And when we do not get there, the stress sets in.

We will change our pace.

We will get more rest, take turns in the room with Reiss (only two allowed at a time), concentrate on helping her with whatever she needs today, and praise her for milestones she reaches them in that moment.

It is all about the moments.

Our pace, forecasted or actual, is greatly overshadowed by the moments – telling jokes with Reiss, blowing bubbles, and helping with physical therapy. A year from now we will not remember the pace, but only the moments we spent with her, rooting her along as she reached each step.  We were there to watch and help her recover.  Maybe not perfectly, but beautifully.  She is, after all, beautifully broken, perfectly imperfect.

beautiful.jpg

One thought on “A Struggle: Who sets the pace?

  1. All I can say is how much I love you all! You are the strongest, most faithful people I know as well. Reiss’ amazing spirit is mimicking the strong people in her life! All of you are so lucky to have each other.!! ❤

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