Five Minute Friday – There was no control

Well, the first week of the Spring 2017 semester is over and done.  I am in St. Louis at a Speech and Debate tournament and I’m up way too late.  But, I decided I would at least get my Five Minute Friday post in this week.  If you aren’t already participating in Five Minute Friday, you should go give it a link.  This week they are focusing on participants finding those who are new to Five Minute Friday, so you’ll get some visitors and commenters as a newbie!

The prompt this week is Control:

Control is something I gave up in my life long ago.  Actually, I really gave it up almost exactly eight years ago.  Almost eight years ago, I went in for a regular checkup during my pregnancy and ended up in the hospital.  I was there for only a few hours before I was on a helicopter flying to a bigger hospital with a NICU.  In all honesty, I don’t remember a ton about it.  I don’t feel like I totally knew what was happening.  But, I arrived in Sacramento on a helicopter, was placed in a room and hooked up to monitors.  Originally, we thought I would be spending the rest of my pregnancy there (I was only 32.5 weeks along at this point, so we were looking at another six weeks or so).  But, the next day, it was decided that the baby had to come that day.  An emergency C-section was scheduled for that evening.  So, I went from eight weeks away to six weeks away to less than 24 hours away from having a baby.  There was no control.

Once Bean came along, she seemed to do well considering how early she was.  She was tiny.  She had to be in an incubator, like the eggs we used to have in our classrooms when I was in elementary school.  I couldn’t even go see her for the first 24-36 hours because I was still unstable with severely elevated blood pressure.  I was brought pictures and told about her, but I couldn’t actually go see her in the NICU.  It was all so surreal.  There was no control.

We brought her home three long weeks later.  She was still tiny.  We had to get a special car seat, one that held a baby smaller than five pounds.  We didn’t have any baby stuff yet, because we had six weeks and a baby shower still to come.  Our friends got us a bassinet so she would have somewhere to sleep.  We had vitamins and tiny bottles and tiny clothes and a bassinet.  We went to the pediatrician and the lactation counselor.  We thought we had made it through the worst.  But, there was no control.

After three weeks at home, we ended up in the hospital with a diagnosis of RSV.  I moved into a hospital room at our hometown hospital in the pediatric wing.  Bean moved into another incubator.  They would come in and give her breathing treatments every so many hours.  She wasn’t getting better.  My husband would come in during the day to let me go home and shower.  I would come back to the same.  Finally, on the fourth night with no improvement, a nurse seemed to be annoyed and told me that we should not still be there.  I didn’t know what she meant.  But, the next morning, we got news that there would be another helicopter ride.  This time, Bean would fly by herself and we would meet her back in Sacramento at a different hospital and she would be in the Pediatric ICU.  We went home to pack.  There was no control.

We received a call while driving the hour and a half to the hospital.  Bean had arrived.  They had to intubate her.  She had stopped breathing for a time.  A reaction to the Kedamine most likely.  But, they had her stabilized.  They wanted to know if anyone had talked to us about her heart.  No one had.  The doctor told me it was five times the size that it should be and was crushing her lung.  There was no control.

We spent that week in the PICU.  They had her on heart medications and an intubator and a feeding tube and so much more.  She was still tiny.  She was covered in tubes.  She looked like some sort of rag doll.  It was surreal again. We watched TV.  Family came and visited.  We slept in recliners.  We sometimes went to my sister’s to sleep.  Cardiologists came and visited.  Finally, she was stable enough for them to do a heart catheterization.  It was scheduled for Friday morning.  They would know then if it was a structural problem causing the heart size.  The news came back that it was not structural.  The doctor told us he thought she needed more than they could do and suggested Lucile Packard at Stanford.  We agreed.  Another helicopter flight was scheduled.  Then cancelled because the size of the helicopter from Stanford could not land on the roof of the hospital we were in and the drive to and from the nearest place would be wasted time.  So, they would send an ambulance instead.  There was no control.

We drove down and slept a bit before going to see her at Lucile Packard.  We walked in to a group of doctors and nurses and pain specialists and fellows – about 11 people standing around her room talking about her condition.  It was both terrifying and humbling.  We were told what they were going to do to figure out what treatment would be best.  We were told she was very sick.  There was no control.

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It has been much longer than five minutes, but once I got on a roll with that, I had to keep going.  I feel like I could go on like that for pages and pages and pages.  So much has happened and continues to happen that is out of my control.  And despite the horror of the news and the frustration at the situation and the feelings of victimhood (why us?  why her?), we have made it through.  She is not just surviving but thriving.  I am here.  I am making it work.  But, when I start to retell the story, I realize I need to cut myself some slack.

It hasn’t just been my daughter’s story, but my dad’s quick degradation into Alzheimer’s and then long suffering before death.  My mom’s cancer and loneliness and depression and then her death.  My own biopsy a few months ago (that came back negative).  If there is one thing I know, it is that I have no control.  The doctors have some control, but even they don’t have total control.  They don’t always have the answer.  At some point, we have to realize that we have a very small sphere of control and even that is not ours.  As hard as it may be to admit it, we are not able to control our fate or the fate of those around us.

But, we do have the ability to live our lives with love.  We do control what we choose to put out into the world.  Love and light and understanding.  So, that is what I choose to focus on at this point.  There is no control over what happens TO us, but we can control but we do TO and FOR others.

 

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: 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 – 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.