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”

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.

Simplicity Sunday

Nothing is Routine…Simplicity Sunday

I’ve spoken before about how much of a problem I have maintaining a routine.  I have come up with many, many rationalizations as to why I have an issue.  But, really, it comes down to self-discipline.  But, man do I pay the price for that lack of discipline.  Right now, for example, I can point to the intense amount of cleaning I had to do over the last two days, the misbehaving dog (who really, really needs to exercise), my exhaustion (due to not eating right and not exercising), a 7 yo DD who has no real routine in her life either and struggles with that a bit, food that has gone bad because I didn’t make it in time, forgotten tasks, etc.

SIMPLIFY JANUARY 2016

So, I once again want to get a routine together and implement it on a regular basis.  I feel like it would mean a lot to do it now and have it in place for a couple of weeks before we have to have my DD’s surgery.  Often, when we come home from the hospital, things are just completely out of whack for weeks.  But, if we have a routine set up and then can come back to it, I think it would help immensely.  Because, in our lives, nothing is routine.  But we are in desperate need of routine.

So, we’re going to try it again.  I have a lot to do everyday.  But, here are some things I want to happen everyday:

  • Walk the dog for 20-30 minutes (it would make a huge difference for the dog and probably a huge difference for me…I could listen to a podcast everyday during that time).
  • Unload/load the dishwasher
  • Do a load of laundry from start to put away
  • Feed and water the animals (dog, cat and guinea pigs)
  • Make meals – breakfast and dinner (sometimes lunch)
  • Do something active with my DD (not like sports active, but play a game, do a craft, etc.) for 30 min to an hour
  • Shower, do hair, makeup and such – I really should do this everyday, but I don’t.  I think I would feel much better about myself if I did all these on a regular basis.  I just kind of let myself go and then I end up feeling horrible because I look horrible and have not woken myself up fully, etc.
  • 10-15 min pickup everyday (although, I really want to work on all of us putting things away when we are done with them – it is now my mom mission for March).

Now, I don’t have to do all these myself.  And when I list it out, it doesn’t seem like much.  In addition to these, I want a list of chores to do throughout the week so they get done, but they don’t need to be done daily.  Things like vacuuming, changing the beds, cleaning the bathrooms, etc.

The routines are printed out (mine, my DD’s and a daily/weekly household one).  I’m going to post them and go to bed early to read (okay, really play Candy Crush, but I may run out of lives and end up reading for a bit) and be ready for tomorrow’s first task – walking the dog!  I’m going to lay out her leash and choker chain and my clothes and just DO IT!  I’m tired of lacking in doing what I know needs to be done.  Wish me luck!

Health and Caregiving, Life Updates, Uncategorized

School Happens

Every semester it is the same thing.  I start out so on top of things, convinced I will be able to keep up with it all.  Then, slowly, things start to spiral out of control.  It usually happens around my house.  Piles start to form.  Papers, mail, clothes that need to be put away, stuff.  Next, grading.  I start to find myself with piles of papers or emails with things to grade.  Oh, and the to-do list.  That starts to pile up as well.  Emails get backed up.  Then, curve balls get thrown at me, but I can’t adjust because of all the piles.

This semester has been a bit better.  I haven’t let the grading pile up too badly yet.  I’m relatively on top of class prep.  But, oh there are piles.  My dining room table.  One of the couches.  Bean’s desk.  Really, any flat surface is fair game for a pile to form.  And they don’t even make sense.  On the dining room table right now is a Sorry game with a magazine on top of it and an envelope on top of that.  There is a ball next to that pile and then another pile mostly of mail items that have been opened, but need to be dealt with in some way.  Then, there is my purse that I’m not currently using because I’m using my work bag instead.  There are some little toys and jewelry from my DD’s birthday party two weeks ago.  On the couch next to me there is a set of “scratch off” cards and little stencils that go with it, my work bag, my DD’s princess bag that she wanted to take to school instead of her backpack today, a stuffed giraffe…

pacing a heart and myself

We found out last week, after a last minute trip to Stanford on Wednesday (my long day at work) that my DD needs a pacemaker.  It was not totally unexpected and the news of how they could do it was better than I thought it would be (no open heart surgery, just a small incision), but it still is a bit of a disappointment.  We will only be in the hospital over night (or at least that is the prediction – last time they said that we were in for four days).  It will mean more doctor’s appointments post-surgery.  It will mean a new thing to deal with.  And it is a new thing in her heart that isn’t working.

I am very happy to have this weekend off to catch up on housekeeping and class prep.  I am very happy to have a lot of weekends off this semester.  I need that.  For sanity.  For the sake of my house and family.

So, life is moving on.  I’m going to try to pick back up with the blogging.  I feel the need to write. Now if I can just MAKE the time!

 

 

Thankfulness Challenge

365 Days of Thankfulness – Day 19

Some days are easier for thankfulness than others.  That is for sure.  Today is tough.  I’m sick (nasty head cold), my DD is home sick (also nasty head cold), I’m terribly behind in grading, the house is a continual disaster, seemingly unavoidable and although I have next week off at one of my teaching jobs, I still have to teach at the other and my hubby is out of town from Friday morning until Monday night and Tuesday we have to go to a heart clinic appointment at Stanford.  Sigh…

But, my job right now is to be thankful…so, here goes!

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Today was a long day, but I’m thankful for an early night for my DD.  She fell asleep about 20 minutes ago.  She usually falls asleep pretty late and she was home from school today, which makes her more likely to be up late since she didn’t burn energy.  And, although she has not felt horrible, she has also not felt great.  She is running a slight temp (upper 99s) and her nose is full of snot.  She complains about her teeth hurting, which I thought was maybe sinuses, but she told me she woke up to them hurting because she was gritting her teeth so hard.  I’ve heard her grinding her teeth every so often.  So, now I think it may be that causing her jaw to hurt.  Who knows?  I do know she is oxygenating well and her heart rate is pretty good (mid 70s), so I’m not too worried about her health.  But, I do wish she would get over this cold.  It just seems to be hanging around.  Not awful, but bad enough to make me not want to send her to school or take her out to do things.  So, I’m hoping it leaves soon and she feels good and we can move on to enjoying the now holiday season.  But, for tonight, I’m just thankful she is asleep early and letting her little body rest and hopefully recover a bit.

Six Word Saturday, Weekend Coffee Share

If We Were Having Coffee – Six Word Saturday Style

I’m going to combine a couple of things in today’s post.  Six Word Saturday AND If We Were Having Coffee!  It is a meme mashup of sorts.  Thanks to Nerd in the Brain for reminding me of “If We Were Having Coffee” which I’ve done a few times here on the blog – here and here specifically.  It is the perfect amount of randomness and provides an excuse for a totally conversational post!  So, first, let’s get the Six Words out of the way.

Enough already with medical issues, please!

Yeah…definitely captures my feelings right now.  Let’s have some coffee, because…well, this:

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If we were having coffee, I would apologize for my house looking like we are in the middle of a move for no good reason.  There are pictures from the walls sitting on the floor against the wall, waiting for me to decide where I should put them (I got some from my mom’s house and was going to switch things around, but now I’m not so sure and I’m feeling a little stuck).  There are piles on the dining room table.  A combo of stuff that came home from the hospital with us, stuff from my purse and stuff that was there before.

Yeah – the hospital.  We spent three days in the hospital with my DD this past week.  Totally unexpected.  We went in for a normal transplant check up and they noticed her heartbeat was slower than it normally is – only a slight difference, but they are thorough, to be sure.  So, they ran an EKG and there was a pretty significant bradycardia. So, they checked her in and then they decided to be sure there was no rejection, they needed to do a biopsy.  She used to have biopsies all. the. time.  First, every three months.  Then every six months.  And we stayed at every six months for a long time.  Then they bumped her tricuspid valve and it got knocked loose (it is a known issue in little ones doing catheterizations) and they had to repair it and the repair didn’t really work – just lessened it enough that when on lasix she would not fill up with fluid in her chest (which happened without us knowing once before the valve repair – again, unexpected stay, but that one was six days).  Then, to keep from having to risk bumping the repaired valve, we moved to annual biopsies.  But, now we’re back to six months to make sure there isn’t any significant damage to the coronary arteries and such while we figure out what is causing this electro-conducting problem.  The biopsy came back negative for rejection and everything looked the same that it did in May and the lower conductors in the heart seem to be working okay, so it is just her sinus node that is deciding to misfire…or not fire at all sometimes.  So, she is now wearing a heart monitor stuck to her chest for 14 days to track her heart beat over longer periods of time and we’ll see how she does.  They say she is not symptomatic but I think that maybe she has had some symptoms and we just didn’t know what to be looking for when it was happening.  So, now we know.  And we’ll see what shows up.  So, there’s that.  But at least we’re home.

I would tell you that my husband had to leave the next morning after we arrived at home because his mom had to have a double mastectomy and reconstructive surgery on Thursday while we were still in the hospital at Stanford.  Yeah…that’s right.  We were calling his dad in the hospital there while we were sitting in a hospital room here.  Sigh…  Good news was there was no sign of spread, so she will not need any chemo or radiation and hopefully this will be the end of it for life.  Bad news, she is not being a very patient patient and my husband and his dad are totally exhausted (this is day five in a hospital room for my husband…different room, same you know what).  He is going to stay down there to help out his dad this week, so  I’ll be dealing with Bean on my own.  I’m hoping that all goes well and there are no illnesses or heart issues or issues with his mom.   I’m hoping we have no more hospital stays for anyone in our family for a long, long time.

I would then drink some coffee and knock on wood and kiss my blarney stone or whatever you do for good luck and I would hope that you didn’t think I was some crazy woman with a Lifetime Movie Network life that is way to overwhelming.  Because honestly, that is probably what I would think if I heard my story.

I would ask you how you were doing and hope that your answer would be more Comedy Central than Lifetime Movie Network.  And you can include your response over at the Weekend Coffee Share at Part-Time Monster!

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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.