Tuesday Truth

Tuesday Truth: Life in the ICU

This place is familiar, but also somewhat unknown.  I believe it is a safety mechanism in our brains that protects us from remembering the full experience of unpleasant places.  Here I sit in a CVICU room, something I’ve done for months of my precious daughter’s seven years of life.  It all looks somewhat familiar.  The myriad of machines that beep and pulse and beep some more.  The bed that is at once, highly technical, yet still totally uninviting.  My daughter, with the tubes and tubes and more tubes coming out of what seems to be every area of her little body.  She has grown a lot since those first days in the PICU and CVICU as a premature four month old, but she is still a similar vulnerable child who needs lots of love and care and wears her anxiety like a hated piece of clothing, trying to cover it up, while knowing that at some point it WILL be seen by others.

This is a good visit.  A quick in and out – one night only.  But, it is a very, very long night.  There is never peace in an ICU (really, any hospital room), but this night is not so good for someone else, so the lack of peace is even more pronounced.  There is an emergency.  Everyone is gathered around one room.  At some point, privacy screens are put up and doctors and nurses suit up and there is some procedure being done.  Right there in the ICU.  Usually, that means there is no time to move to a different location, which is never good.  This morning I dreaded walking that hallway.  Fearing the sight of an empty room.  But, there was a patient there.  Still surrounded by a number of doctors and nurses, but there, with machines beeping and pulsing and beeping.  So, at least that was good news.  But, from here, who knows?  The child next to us screamed at night about being “firsty,” but each time he had something to drink, he would go into a coughing attack and sometimes throw up.  So, they put him on “NPO” meaning no matter how “firsty” he would get nothing but a little pink swab soaked in some water to rub around his mouth.  I am thankful that my daughter was so little when she was suffering the literal heart ache of cardiomyopathy.  If not for her sake (as I’m sure she was quite often thirsty or hungry or hurt when she coughed), for mine. I did not have to be the parent who tried to rationalize this seemingly torturous behavior of withholding vital needs to their child.

My daughter is whiny.  She wakes up every hour or so to call my name and has me come from my uncomfortable perch in the less-than-cozy rocking chair to rub her arm or simply remind her she is not alone in this place that could easily be mistaken for a house of torture.  She is in pain at times.  She tells me she wants to go home a few times.  But, overall, she is able to be comforted and will go back to sleep, at least temporarily.  I am exhausted.  And somewhat resentful.  It is not unheard of.  Why us?  Why do WE have to go through this AGAIN?  Then I remember the alternative is not having the opportunity to get better, and it all gets put in perspective.

The doctors and nurses go about their business.  They are not unconcerned, but deal with the pain and suffering all around them with professionalism, compassion and as much happiness as is possible.  Some are downright joyful and you wonder how they do it.  It takes a certain type of personality to be sure.  Working in an adult ICU is one thing, but a pediatric ICU is something altogether different.  These are people who have not reached a stage of life where they should be this seriously ill.  And most of the cases in the CVICU are not trauma or accident victims.  They are victims of their genes. They are victims of random statistics.  They are victims of early births or birth defects.  And so many are babies.  And so many are having their third, fourth…tenth surgeries.

We are now home and hopefully will not face time in the CVICU for a long time.  But, if you have a spare prayer or some positive thoughts, please send them to those who aren’t as lucky as we are and are still sitting in that room, in the uncomfortable chair, trying to be hopeful that they too will one day roll out of that wing to the “step down” unit, and then home.  #thankful

Goldfish in hospital

Six Word Saturday

Six Word Saturday: Tired, but Happy – Post Hospital Weekend

We are home!  I am amazed that we actually made it home in the least amount of time they estimated – four days.  It was not an easy four days and I did not sleep well or comfortably the entire time.  So, I am exhausted.  Bean is the same.  In fact, she is napping as I type this.  Hospitals are tiring.  There is no good rest to be had, there is no real comfort to be had…and the food isn’t very good.  So, I am extremely happy to have a weekend at home post-hospital.

Happy to be home, but exhausted.

The pacemaker placement went well.  All seems to be healing as it should be, but that doesn’t mean it doesn’t hurt or that she is ready to enjoy summer.  We did some shirt shopping this morning to give her looseness and comfort while the incision heals, but she got very tired quickly and the pain came back.  So, we only made it to a couple of stores and then we were back home, resting.  Which is fine.  A little bit at a time.  Here are some pics from her hospital stay and coming home:

 

Thankfulness Challenge, Uncategorized

365 Days of Thankfulness – Day 25

Well, I’ve missed another few days.  Everday blogging is not an easy venture!  It seems like it would be easy, but it really isn’t.  I’m going to try to make this quick so I get it posted as every time I leave a post partially written, I never get back to it, so I now have a bunch of drafts…so, completion is the goal!

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Today, I am thankful for the news we got yesterday that, for now anyways, there are no heart surgeries in our future.  Although my DD’s tricuspid valve is still leaking and her heart is getting larger because of it, the pressures are good.  And since she doesn’t yet have any symptoms from her bradycardia issues, the team of doctors they brought together to discuss her case last week has decided that there is not a need currently for a pacemaker or a valve replacement.  So, for now, we are simply holding steady and hoping that she doesn’t have any symptoms for a long time to come.

I didn’t really know how heavily the thought of that was weighing on me until we got the news that they would NOT be doing any surgeries. I realized that I have been stressed for weeks about the possibility of another open heart surgery with the hospital stay and the long recovery and the emotional toll that it takes on us.  Obviously, it will come at some point in the future, but I just wasn’t quite ready for it now.  So, I am thankful for the delay.  I hope that her heart continues to work “good enough” for years, but I will begin to prepare myself for the alternative should it come sooner.