Life Updates

Patience is a Virtue

William Langland said that in a poem in the 14th century and we still say it today.  So, it has stood the test of time.  But, it doesn’t mean it is easy to uphold that virtue.  I guess it is defined as “moral excellence”  for a reason.  Tonight, I am a bit short on that virtue.  I am typically a very patient person, but at times, I reach a level of frustration and anxiety and tension that makes me want to scream.  I have reached that level tonight.  And for no real good reason at all.  Overall, today was a good day.  A long day, but a good day.

We drove to my sister’s house last night and stayed the night, allowing us to get up at 4:45 this morning instead of 3:30 a.m. to get to Bean’s heart clinic appointment in Stanford by 7:15 a.m.  My sister was nice enough to go with us, so we got to use the carpool lane and we made it a little bit early even.  The appointment went really well.  All looked good.  I was surprised to learn that her pacemaker is pacing her upper half of the heart 22% of the time and her lower half 9% of the time.  In all honesty, I thought it might just be a precaution and it wouldn’t pace very often if at all.  But, it is pacing almost one quarter of the time!  It is set at 70, so dropping into the high 60s will cause it to pace.  But, still.  A little surprising.  The doctor also said that a transplant may be done before a valve replacement if the right side of the heart becomes overwhelmed by the regurgitation.  So, there’s that on my mind.  Hell, my tension and lack of patience tonight may all be part of a little PTSD that kicks in even when we hear good news, because it often is followed up with disconcerting news (pacemaker is working great and Bean’s health looks great, BUT it is having to be used 22%/9% of the time; the regurgitation does not seem to be increasing or causing her heart issues, BUT it could get worse and could require another open heart surgery for either a valve replacement or a second transplant).  It is a lot to take.  I want to be happy, but it is also tempered.  I’m also exhausted.

In addition, I am feeling overwhelmed again.  I feel like everything in my life happens just a little later than I need it to.  I feel like I wanted so much more done at this point – on my housecleaning and organizing, on my class prep for Fall (good Lord, it starts in just four short weeks), on my finances, on my life in general.  My DH comes home in three days after being gone for five weeks and I feel like I’ve accomplished little-to-nothing.  My birthday is on Sunday and I’m feeling like I don’t even want to celebrate.  I realize this is probably temporary and things will look better when I get up tomorrow and I’ve slept longer and better than last night, do not have to face medical appointments and have two days to get some things done (well, three really because my DH doesn’t come home until Saturday night pretty late).  I need to be productive, not procrastinating. I need to get my #!*^ together.

But, I also feel overly tired and lacking in energy and motivation.  What do you do when it all seems a little overwhelming?  I would love to hear some ideas.  I only have a few more days until my Year of Fun kicks off and I need to get over this feeling of BLAH and FRUSTRATION in order to really have some fun.  I know part of it is probably diet and lack of exercise and who knows what else…

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!

 

Six Word Saturday

Six Word Saturday – Spring “Break”

Spring Break spent fixing broken heart.

No…not THAT kind of broken heart.  My DD is having her pacemaker placed this week. Her sinus node is not working properly, so she is getting a pacemaker to make sure that if it decides to quit completely, there is something there to pick up the pieces and make the heart beat.  We will really only be in the hospital for one night, but we have to be there the day before for pre-op appointments, then the day of, then an overnight stay afterwards, then hopefully home with pain meds and a sling on her left arm.

I am not THAT concerned about the pacemaker placement.  It seems relatively routine (although I question how routine anything is when you’re working on a seven year old with a transplanted heart and a valve that isn’t working properly).  I am more concerned about what she is going to be like afterwards.  She is slightly unpredictable when it comes to these things.  Sometimes, she is a real trooper and an excellent patient.  Other times, she is pretty whiny and overly dramatic and holds on to things for a long time.  So, we’ll see which DD comes home from the hospital with us this time.