Wednesday, June 26, 2013

One week to go...

A week has passed since my last blog post.  For some reason, the words are not coming so easily.

One, I don't feel as mentally healthy as I would like.  In addition to not being able to blog like I would like (my therapy) I've been unable to do anything physical due to my back issues.  Grrr!  More on that later...

Two, I'm in focus mode now.  Which I think is kinda like auto pilot.  I can't believe it, but surgery is just one week from tomorrow (Wednesday).  The boys are headed to Grandma's on Friday and we are headed to Boston on Sunday (pre-op is on Monday).

So, I've had to narrow my focus to just this week.  I went through my "to do" notebook last night (Monday night).  I ended up creating two new lists.  One that has to be done (okay, should have been done) at some point in the near future.  For example, "write thank you notes."  Yes, I still want to thank you.  But, with everything going on this week, that's not going to happen.  Again. I'm really sorry.

And one list of items that MUST be done THIS week.  So far, there are 16 items on my list.  Today I accomplished three of them.  Progress!  Well, that's not totally true.  Not written on my list (but probably should be) is to do something "fun" each day.  Unfortunately, I have nothing planned for tomorrow.  That will have to be done on the fly.

Yesterday we went to the movies to see Monsters University.  Loved it!  And the kids did, too.  Harlie knew we were going in the afternoon, so in the morning she wanted to watch Monsters, Inc.  So cute!  Since it just came out on Saturday, the theater was pretty crowded.  I'm always nervous that we're going to have to suction Harlie during the movie.  We've only taken her to see a few movies and so far we've been lucky.  I've had to suction her before, but it's been during a loud part in the movie and I don't think it was noticeable.   But, yesterday, it was during a more quiet scene.  Crap.  I know some trach moms would argue for taking Harlie out of the theater to suction.  But, when she needs to be suctioned, she can be pretty loud.  And most people don't understand what they're hearing or what's "wrong" with her.  So, I think (in this case especially since we were in the middle of a crowded row) that removing her while she sounded like that would have been a far worse distraction (or annoyance) to others than just taking the five seconds to turn the machine on and get it done.  But, regardless, I still cringed.  I don't want to disturb others, I promise!  But, it is her airway.

And honestly, Cooper was worse.  Every five minutes he was asking me (without using his quiet voice) for "MORE POPCORN, PLEASE!"  I got a large tub for all of us (Terri, Harlie's nurse went with us) and some water cups for the kids to eat popcorn from and Cooper ate popcorn till it was all gone.  It took him most of the movie.  But, the only reason he stopped eating popcorn was because there was none left.  Wow, that kid loves popcorn.  

Looking back, I guess we were a bit of a mess.  Harlie had to go potty (ugh!) near the end of the movie.  Terri took her and on the way out the row, squeezing past people, they knocked over a woman's purse or something so a bunch of stuff fell on the floor (including a bunch of coins).  After Terri used the light from her cell phone to pick it all up, they left without further incident.  When they returned, they did not come back to their seats.  They chose two seats near the door.  Poor Terri.  I'm betting she will cringe the next time I say, "Hey, let's go to the movies!"

Anyway, today was less embarrassing (I hope).  We went to the pool.  Everyone's a loud mess at the pool, so we should be good there.

Tomorrow... I don't know yet.  Thursday, I think we're going to go to Chuck E. Cheeses.  Every time the commercial comes on for that place Harlie goes, "Mama!" points to the TV and signs "car."  She's been doing this for the past year.  She's never been.  So, as much as it pains me to go to that germ ridden place... I think I have to take her.  That is how guilty I feel about what the next six to seven weeks are going to be like for her.  I really think it's the least I could do.  So, we'll take tons of hand sanitizer and hope for the best.  I hope I don't regret it.

Oh! Since I blogged last, I heard from Harlie's pulmonologist about her lung CT scan.  Here's the summary from the radiologist's report:

Somewhat limited examination due to patient's inability to cooperate for high resolution CT. However study actually does show that there is no significant bronchiectasis in this patient. There may be very minimal bronchiectasis in the right lower lobe medially. There does appear to be some degree of chronic lung disease but it is markedly improved compared to 2007. Hyperinflation of the right upper lobe possibly due to some minimal narrowing of the right upper lobe bronchus near its origin. There are large vessels in the right hilum and superior mediastinum in this patient with extensive heart disease.

So, overall, a pretty good report.  Of course I'm aware that to some people, reading this about your child could be quite upsetting - but my perspective is SO out of whack.  In 2007, she had most of her right lung removed (it wasn't really lung, it was a mass of some kind).  So, it is wonderful to read that her chronic lung disease is markedly improved.  Of course the use of the words, may, possibly, and somewhat seem a bit non-committal in a medical report.  I don't know that it answers the question of why she needed oxygen so much in the past six months.  It would be nice if a summary of the report in layman's terms was provided.

Moving on...

My back really changed things the last few weeks.  Last week, I knew I had to be smart about making sure I did everything I could to help my back get better, faster.  Sitting unsupported (a seat with no back) was the worst.  I was better if I was moving or laying down.  So, I saw my chiropractor a few times.  And I laid down every chance I could get and iced my back as much as I could.  This made me very unproductive last week.  But, it paid off in the pain department.  I am MUCH better now!  This morning I took Rooney for a long walk and did some light running when Rooney would allow.  And I am so happy that I felt no pain!  I am going to play it very safe though, and take it slow in getting back to my old running/TRX routines.  But just knowing that things are better have already lifted my spirits.  Great timing, too!

I'll end this post with some recent pics...

Okay, maybe this one isn't so recent.  This one is from June 1.  It was Cooper's last soccer game.  I don't think I ever blogged about it.  Oh, maybe I did - he scored a goal in his last game.  Did I already talk about it?  Oh well, sorry if I did!

Rooney, helping me with the laundry.  He's such a good dog.


We met some friends at the pool for dinner.  Harlie's not the most affectionate kid, so this is a rare, wonderful moment.

I love our walks in the evenings with the dog and the kids riding their bikes (except for Harlie, of course).  I think it's safe to say that the kids like them, too.  Just look at how happy Harlie is...



Even some of the kids in the neighborhood like to go with us.
Philip, Cooper, Murphy and Cole

Did I mention that Cooper learned to ride a bike (without training wheels) recently?  Oh, I am such a bad mom sometimes!  Well, he did and he's doing great!  He's the most polite kid sometimes.  He can't quite get started by himself yet, he still needs a push.  And he is so quick to say, "Thanks, Mom!" every time.  And he's so genuine when he says it.  It's so cute.  And while riding it the other day he said, "Mom, I really love my new bike. Thanks for getting it for me!"  It's a hand-me-down, but he doesn't care!

Okay, that's it for now.

Thanks for reading!
~Christy

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