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:

 

Five Minute Friday

Five Minute Friday – Same

I’m back after some time away (which will be explained in today’s Five Minute Friday post) and ready to spend five minutes writing.

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This week’s prompt is “same”…

Things are constantly changing, but they are also always staying the same in many ways.  This past few days we revisited a place where we have spent a lot of time and although we’ve changed dramatically, that place remains mostly the same.  That place is the Children’s Hospital where my daughter had her transplant.  We haven’t been there overnight for over three years, but a hospital room and hospital life is nothing if not the “same”.  I’m happy to say we are back home, but realistically looking forward to additional stays some time in the future.  We have friends who were there with us when my DD got her transplant and they are back for an entire YEAR – not IN the hospital, but staying at RMH and often in-patient for a few days at a time for cancer treatments.  I guess, in some ways, that sameness is a sense of comfort.  The fact that I knew where to go to get sheets and blankets and extra pillows and how to order food for my DD and where to go get food when the Children’s Hospital cafeteria was closed one night and to expect nurses in and out of the room throughout the night to do vitals is all a source of comfort where others would have a lot of anxiety.  So, in that way, the fact that the hospital is the same is comforting.  And I’m thankful for that.  But, it is also frustrating to get woke up every day at 6:30 a.m. to get weighed (really?  they can’t do a weight AFTER shift change in the morning?) and to always have the same menu to look at for food (but, at least it isn’t just some random meal dropped off to you that your kid will never eat, so that part is good).  Always the same beeping of the machines (although thankful we didn’t have to deal with any IV poles or IV fluids this time).  Always the same “hurry up and wait” for news or tests or results.

The hospital is much the same despite the new curtains in the rooms and the new little carts to tote kids around the hospital.  And for that, I am pretty thankful.  Being in the hospital is stressful enough, no need to figure out “new” things while dealing with that.

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That’s it.  Join us over at Kate Montaug for this week’s Five Minute write.  More on the hospital front in a coming blog post.