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.

 

Five Minute Friday #1, 2017 – Connect

I am joining in for the first Five Minute Friday of 2017!  I’m excited to get started writing more consistently this year (and hopefully building my blog into something “more” as well) and Five Minute Friday is always a great exercise with a wonderful community along for the ride.  This week’s prompt is “Connect”.

connect

Here goes:

Well.  I am finding it somewhat difficult to connect to the prompt connect.  I’m just not sure where to go with it.  A lot comes to mind.  Connecting with others.  Making connections in my life.  Connecting the dots.  But, none of it is really driving me to write about it.  So, I guess I’ll write about how sometimes, it is difficult to connect with other people and things and that it is okay for that to be the case.  We would not appreciate the times when connections were strong and meaningful if those types of connections were constant and consistent.

I often have problems making close friends for example.  I just don’t connect with others as much as I would like.  And it isn’t for lack of trying.  But, when I do find someone I connect with, I feel it strongly and that connection is there whether we are spending a lot of time together or just a few minutes here and there.  I feel the same about entertainment and activities.  I don’t often feel strong connections with TV shows or movies or exercise programs.  Others seem to find something and really connect with it and loooooove it.  But, I don’t as often.  I connect with things from my past more than anything else.  Perhaps that is where I have my strongest connections – to my past.


That’s it.  I feel that this week was tough.  I’m not sure why.  It has been a long and somewhat stressful day (although I didn’t do much).  My DD is not feeling well.  And although she isn’t feeling horrible either, she did start running a fever tonight and with her past, I seem to be in a bit of a PTSD anxiety attack.  It isn’t horrible either.  I’m not panicked or anything, but I do feel a bit of trepidation about planning and what is going to happen.  In all reality, she will probably get better in a couple of days, without any complications.  We went to the pediatrician today and her lungs sounded good, she had nothing in her ears, her throat didn’t look too bad and she was negative for strep.  So, all good signs, but then she spikes a fever.  It just makes me wonder what is going on in that little body of hers.  And, in reality, it is probably nothing but a normal 7 year old virus that is running its course.  But, in a heart transplant recipient, it doesn’t ever seem like a virus or illness is normal or can just simply run its course without some concern.

So, I’m watching what I connect with – Poirot – on Netflix.  I’m waiting for the coming “Storm of the Decade” here in California, which should be hitting any time now.  I’m intermittently cleaning and organizing and purging.  I’m looking forward to a weekend of quiet and catching up and preparing for Spring 2017.  My DD is supposed to go back to school on Monday.  We will see how she is feeling.  But, I don’t have to worry because I’m not working next week!  We are scheduled to go to heart clinic on Tuesday, but with the illness/fever happening this weekend and the storm of the decade hitting, I think we will be rescheduling that.  So, that sets us up for a relatively quiet week ahead as well.  I can connect with that…

Tuesday Truth

This week’s Tuesday Truths are here!

Tuesday Truth

First, illness sucks.  It especially sucks when the person who is ill is 7 years old and just spent three weeks recovering from surgery.  That’s right.  My DD, who had just started feeling better a week ago (after her pacemaker surgery) seems to have picked up a flu bug or something.  She woke up last night at 2 a.m. complaining of stomach pains, was awake and asleep and awake and asleep the rest of the night, was determined to go to VBS today so she could have her planned play date with a school friend and then one hour into it showed up where I was volunteering crying about her stomach really hurting and having a headache.  So, we came home.  She took Tylenol, watched TV for about an hour and then slept for over three hours.  She woke up feeling better, ate a small amount of yogurt and raspberries and a cracker, drank some water…and about an hour later threw all that up.  🙁  She is now asleep again and I’m thinking no VBS tomorrow and probably a trip to the pedes.  Poor thing.  She can’t catch a break…I’m hoping it is a 24 hour thing and she will be all better tomorrow, but with her immune system, it could be a while.

Second, flies suck.  We always have a problem with flies.  We live backed up to a giant field where everyone walks their dogs and lets them poop and cats go to poop and probably kill things and then we have our own pooping dogs in our backyard.  So, we have a crap ton of flies all the time in the summer.  They seem especially bad right now.  I hate them.  I wish I felt comfortable just spraying the toxic fly spray all over our yard, but I don’t.  So, I have a fly trap in our tree, which has trapped a lot of them already, but there are all those plus more flying around back there and subsequently into our house every time the backdoor is open, which is often with a puppy.  Hate, hate, hate them. If anyone has any non-toxic suggestions, I would love to hear them.  I tried the pennies in a bag of water last year and it was a fail.  So, please, something other than that!

Third, because there has to be something that doesn’t suck on my list, bulldog puppies are hilarious.  Our new puppy, Scout, is a character.  Bulldog puppies are much less energetic than lab/shepherd mixes, but she is plenty entertaining in her own way.  Often in the way she sleeps!  And snores.  What isn’t funny is her gaseous fumes she releases on us!  But, she has been a great addition to our family zoo!  For your enjoyment, a lovely picture of her and our Seven snuggled up together:

Seven and Scout

So, there you go – my Tuesday Truths this week.  Back to worrying about my DD and hoping her illness goes away quickly!

Tuesday Truth

tuesday truth

Well, today’s primary Tuesday Truths are all about sickness and hospitals.

First, it sucks to be sick.  I have some thing going on with my throat that has caused laryngitis and coughing and just misery in general.  Coughing makes me tired and relatively sleepless and laryngitis makes it difficult to teach and talk on the phone or talk to people in your house.  Basically, anything.  So, yeah – that’s where that’s at.  Hopefully my voice will soon return to full strength and this cough takes a hike.

Second, hospitals are exhausting.  I spent all day yesterday in the hospital for my DD’s annual heart biopsy.  She did relatively well, but it is still a long, long day.  We arrived at 7:30 a.m. and didn’t leave until 3:30 p.m. and in between we dealt with pre-op upset, post-op upset and just general frustration on hers and our part.  Trying to keep a six year old laying completely flat for four hours is a bit ridiculous if you ask me, but it is what they want us to do to keep her from bleeding at the access sites.  And she gets super frustrated and we get super frustrated and at some point, I just kind of give up and hope for the best.  Everything went okay.  The sites look fine today.  So, I think we did a good enough job.  Her rejection level was 1A which is a bit of a disappointment after the last few zeroes, but the NP says that is basically the same as a zero (which is obviously not true or they wouldn’t have a zero and a 1A), but we’ll take it.  It means no steroid treatment or change in meds.  So, we’re good.  Everything else looked good as well.  So, hopefully another year before we have to go through that again.

Third, having a sick, aging parent on hospice sucks.  My mom was here all weekend and she was considerably weaker than the prior weekend (just four days later).  And since she went home on Sunday she has gotten progressively worse.  Yesterday she didn’t really get out of bed.  My sister went down there today and says she is not making a lot of sense and seems very disoriented.  She is weak and now they want to get her a hospital bed.  Her caregiver seems to be a little low on the caregiving department since she says she can’t help her get into bed, which I was able to do this weekend.  So, now we may have to look for someone else OR we just need to convince my mom to go into assisted living, which she will hate, but which will probably be good for her.  I’m exhausted after taking care of her the last two weekends not because of having to help her move around, but more because of her emotional state.  I was also getting sick, so I didn’t feel good this weekend, and I think it all caught up to me this week.  Hence, my loss of voice.

So, that’s it – my Tuesday Truths.  Not much positive here, I know.  Its been a rough weekend.  And it has continued into the week.  But, I’m hoping things start to look up.  Maybe my voice will come back, hopefully this weekend will be without a hospital visit AND my mom will get what she needs and be more comfortable.  And, I hope to get some sleep.  And, get some grading done.  And, finish cleaning/organizing my house.  And, go to the fair.  And, read some books.  And, just R-E-L-A-X.  Yeah, right.  What about you?  What’s your Tuesday Truth?

Five Minute Friday – Fight

Five Minute Friday

This week’s Five Minute Friday prompt is “Fight.”  Here we go:

Fight.  The word means many, many things.  Sometimes it is the urge to stand up and be strong in the face of some obstacle.  Other times it is the urge to take out aggression on someone or something else.  Other times it may mean arguing with another over some thing or another.  Some say that my daughter’s illness was the “fight” of my life or the “fight” of her life.  But, in some ways, I feel like it may have been the opposite.  It was actually the surrender of our lives.  We didn’t really have anything to do with “fighting” what had her down.  We had to surrender to the knowledge and help from others.  Doctors and nurses and friends and family.  It is strange what people say about illness – this idea of “fighting” the illness.  I think perhaps we say that out of our need to have an enemy.  Some identified opposition that we can defeat through sheer effort and dedication.  But, illness is different than that.  Illness is not some external opponent, it is within us.  It is us.  We can’t identify ourselves and fight.  So, I think in many ways, we should change the way we talk about illness.  Perhaps instead of telling people to fight or saying they are in for the “fight” of their lives, we need to say they need to surrender.  They are in for the surrender of their lives, where they have to follow the directions of others who have more knowledge and more resources than they do.  They must surrender to need for medical intervention and they must surrender their need to be in control.  It is not what we want to hear or what we want to say or what we want to do, but in reality, it is probably what we need most.

–and that is it.  Not exactly where I thought that would go, but that is the beauty of the Five Minute Friday.

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