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, Uncategorized

Five Minute Friday – Expect

I’m joining Five Minute Friday again this week.  I missed it last week.  I almost did it a couple of days late, but decided not to.  I like the idea of doing it ON Friday.  This week’s topic is “Expect”.  Join in if you would like to be part of a supportive community with great messages to share!

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So, here goes:

I have high expectations for myself and my life.  I often over estimate what I’ll be able to do or get done in a certain amount of time.  I often have expected that things will come easily for me (because many things have in the past).  But, life is not so simple or easy and I often find myself coming out the other side disappointed.  It has not yet caused me to change my expectations though.  I somehow stay optimistic (perhaps unrealistic?) in hopes that even those things that didn’t come easily for me will still come.  I still expect that I will be able to accomplish what I need to accomplish, even if it takes longer than I thought it would originally.

Part of this “positivity” is my optimism.  Part of it is hope.  Part of it is that I realize expecting little doesn’t do much for my motivation or my drive.  So,  I would rather have high expectations and fall short than have low expectations and not have tried for something better.  Part of the positivity is based on the fact that I have had such huge blessings in my life, how could I not recognize where things have come more easily to me than to others (Bean’s heart is one thing that always comes to mind…we waited such a short time and we’ve been so lucky with her health since).

So, I expect…not necessarily “the best” but definitely good things to happen and for me to be able to do what I truly need to do when I truly need to do it.  So far, thank the Lord, I have been allowed to experience that, for the most part.  So, yes, I have had a rough seven years or so, with my parents’ illnesses and Bean’s illnesses, but things could have been so much worse.  And most of the time, I think I was pretty consistently thinking that things would be better, not worse.  I wasn’t always right about that, but the thoughts kept me sane.


That’s it for this Five Minute Friday!  Join up!  I’d love to hear what you have to say!

Health and Caregiving, Uncategorized

Tired but Wired

This is often my state of mind.  “Tired but Wired.”  I should make t-shirts.

So, what does this mean.  Well, I’m exhausted most of the time.  I work a job and a half (well, really a job and three quarters).  I take care of most of the household chores on a day-to-day basis.  I manage appointments and scheduling because I am the one with the busy schedule.  I don’t want to paint my DH out to be lazy.  He has a couple of jobs, but those jobs are long distance and highly intense for short bursts of time.  They are also jobs that I would say suffer from Parkinson’s Law – so, given deadlines, the work would be done in less time, but because it is often done without near-term deadlines, it expands to fill a lot of his time.  My job is more defined – I have teaching hours, office hours and then hours that I spend doing grading, prep, etc. but those are when I can fit them in.  My job suffers a bit from Parkinson’s Law as well.  So, we’re both working at home quite a bit.  Too much, in fact.

So, anyways, I am often feeling exhausted from everything I’ve had to do in a day AND staring down the barrel of a to-do list that is far too long to ever complete in the time provided for it.  I feel behind quite a bit of the time.  I often struggle with what I should be doing.  For example, right now, there are three loads of laundry piled up in our living room needing to be folded and put away, a load of dishes to unload from the dishwasher and more dishes waiting to go in, a mess on the dining room table to that needs to be dealt with (thrown away, put away, etc.) AND a pile of grading in my work bag that is late being handed back.  I currently can’t locate my video camera that has some presentations on it I need to grade.  I have an iPad that needs to be restored to make it functional.  And my in-laws are coming for the weekend and their bed in the guest room needs to be made.  I need to clean the bathrooms.  The list goes on and on.  And this is not unique.  This is my daily operating.  And that list of things makes me WIRED.  I feel tense and anxious and like I need to be constantly DOING.  But, I’m also TIRED.  Yesterday was my 13 hour day (with one two hour break in there) and I have a headache and my back hurts and I just want to curl up with a TV show and recover.  But, I teach in three and a half hours and I volunteer in my DD’s classroom in an hour.  And…and…and…

So, yeah, I ‘m both tired and wired.  I’m exhausted but anxious.  And I feel a little stuck.  I do have summer coming in a month.  During summer, I am mostly wired.  I get bored easily and feel like I NEED to be doing things.  But, I also don’t get much done.  It is a strange set of circumstances.  But, this summer, I plan to be more purposeful in REST and in WORK.  So, I’m going to plan times for both. I need to work on a course redesign I got a grant for and I have a few other projects I would like to get done during the summer.  But, I also realize that I need to have some DOWN time.  When I’m not working on anything.  When I can just decompress.  Sleep.  Relax.  Read.  Enjoy.  If I am not purposeful about that, the summer will be gone and I will still feel just tired and wired.  I want to feel rejuvenated and purposeful instead.  It isn’t quite as poetic, but it sure would feel better.

Tuesday Truth

Tuesday Truths

I’m jumping in with some Tuesday Truths this week.  Just tryin’ to keep it real…and truthful!

Tuesday Truth

My first truth this week is ANTIBIOTICS ARE AWESOME!  I woke up yesterday morning at 1 a.m. with a terrible pain in my throat.  Having gone many years in college getting strep throat multiple times a year, I recognized the feeling immediately.  I tried to ignore it thinking maybe it was allergies (they’ve been bad here), fell asleep again for a while, but woke at 3:30 a.m. with even worse pain.  At 4 a.m., I took a Tylenol and started planning my day with cancelling classes and office hours, going to the prompt care clinic and getting this taken care of ASAP.  With an immune-suppressed child (tonsilless thank goodness, I think that makes the strep less likely to take hold, but still) and a national travel trip with 15 students scheduled on Wednesday, I could take no chances.  I got up and started sending emails, dealing with planning, and as soon as I dropped my DD off at school, drove over to the prompt care clinic.  Within an hour, I had tested positive for strep, got a steroid to help with the inflammation and pain, and dropped off my prescription.  Within three hours, I had taken my first antibiotic in a 10 day, 3X a day protocol and settled in for a nap.  By the time I picked up my DD, the stabbing pain had turned to a dull ache.  I was still achy and exhausted, but felt much better already.  This morning, I woke up and am feeling GREAT!  So, yes, antibiotics are awesome!!!

My second truth is God is Good!  I know, I know.  It is a bit cliche.  But, I’ve seen Him working in my life in so many ways this year already.  Life is certainly not all smooth sailing, but His hand touches so many things in so many ways that I don’t always notice.  And this “season”, while starting out tough with news of surgery, financial concerns and job anxiety, has turned into so much goodness.  The surgery is on and I’m thankful that we are with an insurance that doesn’t question the pacemaker placement even though my DD has not been symptomatic (I read a thread online where multiple people had been told no).  I’m thankful I have a job that I can get people to cover for me and make adjustments where necessary when things like this surgery pop up.  I got a raise at my current job, where I would really prefer to stay, so I’ve decided not to apply for the other job (which was a stress in my life, mostly because of insurance concerns).  I also got a grant for revising a class that is going to be really exciting to work on next year.  And I’ve got ideas and plans and exciting possibilities for the coming years!  And I can see where God has had a hand in all those things.  So, I am feeling extremely thankful.

My last truth this Tuesday is travel is stressful.  I THINK I have all the logistics of this trip handled.  Luckily, my DH moved up his return flight today so he got back a couple of hours ago.  Originally, he was scheduled to arrive back home around Midnight and I was scheduled to leave at 3 a.m.  That’s stressful.  Today, he had a two hour delay.  If that would have happened tonight, I would have been a basket case.  So, much better.  I’ve got all the rental cars and we actually ended up with a truck, which will be much easier to fit all the luggage in (as long as it doesn’t rain, which it is projected to earlier in the night – but I will bring some big towels to throw down under luggage and hopefully it will suffice). One of the students was notified he has mono this afternoon, so I had to cancel him.  He was really upset and still wanted to go, but I told him if he put his body through the 3 a.m. departure, time change and long days of a tournament, he might not make it through the semester when he gets back. Mono can be rough and I think he isn’t feeling it right now, but he DEFINITELY would be if he went through this trip.  So, I said no.  So, now there are only 14 students going…but that is still the largest group I’ve ever flown with.  So, it is a bit stressful.  But, seems to be going okay so far.

 

 

Five Minute Friday

Five Minute Friday -Alive

I am joining the Five Minute Friday crew over at Kate Montaung’s blog Heading Home again this week.  I hope you’ll consider joining them as well.  It is a wonderful group of supportive writers sharing their perspective on a prompt each week.

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This week’s prompt is “Alive” – here goes:

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That is my daughter.  The picture is from July 3, 2009, four days before her transplant.  She had not opened her eyes or been awake for days, maybe weeks before that.  She had been on a paralytic in order to keep her from fighting the ventilator and all the other lines she had going into her little, tiny body.  She had just been moved from the PICU to the CVICU because the PICU doctor had basically given up on keeping her stable after days of changing medication levels, plunging blood pressures to elevated blood pressures, bad labs, etc.  The CVICU is typically reserved for those who have already had heart surgery, but they moved her there, I think believing that if she didn’t get a new heart within a few days, she would need to have a Berlin Heart.  Either way, she would be in the CVICU soon enough anyways.  She was probably as close to death as a baby can be without passing away.  It was terrifying and exhausting and depressing.  But, she held on.  Day after day.  Through what had to be painful and frightening situations.  I must admit that I sometimes wondered if we were doing the right thing.  Putting her through all that. But I had to believe that keeping her alive was better than the alternative.

Bean post transplant one month

This photo was taken one month after her transplant.  The difference is pretty amazing.  In four weeks she was off the ventilator, smiling, had lost the puffiness that had been there for months before.  She was taking formula from a bottle.  She held fingers and loved to watch a mobile over her head.  She was ALIVE – not just at the basic level she had been before, but at the WHOLE level.  She was aware, awake and active.

I am now confident that we did the right thing putting her through everything.  She has thrived in the past seven years.  We have had our medical bumps and rough spots, but overall we’ve had it good.  We’ve had great times and we have wonderful memories and wonderful friends and being alive is good.  It is important to remind ourselves of that when things get rough.  Babies even know it. But sometimes life’s hard hits can make us forget that knowledge.  In this season of new life, remember that being alive is a gift.  A gift to us and a gift to others.

 

Six Word Saturday

Six Word Saturday -Spring Break Edition

Well, Spring Break is officially coming to an end.  It went by so quickly, as usual.  And it has been a bit of a roller coaster ride, to be sure.  I’ve adjusted to roller coaster rides over the last seven years and I’m pretty good at putting my arms up and trying to enjoy the fun parts and keep my stomach on the scary parts.  So, today’s Six Word Saturday recognizes that:

Fun! fear! Enjoy the roller coaster!

 

The fun was early in the week.  We went to Monterey Bay Aquarium and the beach.

Then we went to the hospital.  Not as much fun or beauty there.  But, it is what it is.

I’ll close my eyes, scream and see what is at the bottom.

 

Five Minute Friday

Five Minute Friday – Surprise

Back again to join Five Minute Friday this week.  Each week I can’t decide if it feels like it has been forever since the last FMF or if it feels like I just wrote it yesterday.  This is another one of those weeks.  But, such is life.  This week’s prompt is “surprise!”

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Surprise!  Usually it is something we think of as enjoyable.  But, there are also those unwelcome surprises.  And that is what we got this week.  We went to the hospital as planned, after two enjoyable days in Monterey, expecting a pre-op appointment for my DD’s pacemaker placement.  When we arrived, the woman at the desk asked if I had received the message the day before and when I checked my phone, there it was.  A voicemail from our transplant doctor saying there had been a change in plans and to call him.  I had not received it because we were at the aquarium, then my phone died from all the picture taking and I didn’t check my voicemail that evening.  So, there we were, at an appointment that no longer existed.  Surprise!

They called the transplant doctor and he came to speak with us.  It seems that my DD has only one access point for doing biopsies (I knew this before, but had forgotten) and the pacemaker team had not been told that. Surprise! So, their plan was to put the wires through the only access point she has for biopsies.  Not a great plan.  So, they cancelled the planned procedure and scheduled a different procedure.  This one will require an actual incision in her chest again. Surprise!  Hopefully, it will be done without actually opening her sternum again (requiring an unwiring and rewiring) and just going in under the sternum and running the wire between her rib bones.  They will look at that to make sure that is what they can do.  She will also have another incision where the battery pack will sit – a “pocket” in her abdomen.  Hopefully there will be no chest tube (again, not sure about that) and there will be a night in the CVICU and then to the step down floor for three to six days depending on how she does.  My usual reaction is to say to plan for three additional days because she can be a tough patient in recovery, or at least has been in the past.  Hopefully she has outgrown it, and I will get a good “surprise”.  But, we shall see.

So, that was our “surprise” this week – one night in the hospital has turned into four to seven and we’ve postponed it until the end of April to allow for our work schedules to be a little more forgiving.  But, not all surprises are good, but they are all…well, surprising!

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Join us for Five Minute Friday this week – link at the top!