Thursday, December 5, 2013

Sucker Punch

I feel like I have so much to write about, because so many little things have happened since I last posted.  I just haven’t taken the time to sit  just down and throw it out on the ol’ blog.  So, that just means, for the next few days, it’s going to be blog overload.  The end of the year is upon us, and I can’t print our blog book until all the big events (and the small ones too) are laid out, and recorded.

Yesterday, Mulligan, Bogey, and I flew into California for some check ups.  There were lots of doctors to see.  One of our appointments was to visit with the geneticist.  She wanted to run some more tests to see if Bogey had some kind of genetic syndrome, because she is convinced that because we have 2 sons that were born with clefts, something is genetically wrong.  Fine.  I’ve come to grips to with that.  However, I declined more testing because I have no burning desire to put an official name or syndrome on my sons.

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All of our other appointments were smooth, and uneventful.  Most likely, Bogester will need speech therapy.  I was already half-way banking on that.  When we were told that he most likely have a cleft palate, I learned a lot from the internet, about what to expect.  Most of what I read had to do with speech therapy, so I wasn’t shocked when I was told yesterday to tentatively plan on that.  Mulligan will probably be looking at surgery to touch up his lip scar and open the nasal passage just a touch.  If it were up to me, I would have Dr. Lorenz (he has done all of Bogey’s repairs) do Mulligan’s surgery.  He is by far one of my favorite people here. 

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After 4 hours straight of doctors and checkups, we headed over to get an echo.  Bogey was a little worn out, and not too happy about another appointment.  It was suggested, that I lay next to him during the process.  I think my head was on the table before I fell asleep, but I’m not 100% certain.  It didn’t take long for the Sandman to get Bogey either.  I assume Mulligan kept himself entertained with the tablet.  The lady doing the echo tried to talk to him, and I can only hope he played shy, since I wasn’t exactly mentally fit, to intercept or interpret anything that Mulligan might have shared.

At the end of the medical marathon, I was feeling really good about where Bogey was.  I was feeling confident that we were doing a pretty good job managing his condition.  I was actually looking forward to our cardiology appointment.  I was sure we would be told everything was fine, and not to come back for a year. 

I suppose I should be grateful that we didn’t hear those words today.  California isn’t all that warm in December anyway.

Bogey’s echo wasn’t perfect.  I heard Dr. Axelrod say “…right side of the heart is slightly enlarged…” and after that, in my mind, I was mostly reliving our experience of being on the life-flight to Primary Children’s Hospital, 3 days after a month long stay at Lucile Packard Hospital following heart surgery.  I clearly pictured Bogey trapped in a rigged up c-pap mask, and the panic of being stuck in that place with so many unanswered questions, and unknown factors, and a confused plan for care, and so many doctors involved…

It only took those few words to drive me back to the familiar desire to run to one (I have a few) of my private locations in that familiar hospital, and just melt down—uninterrupted.  However, with Mulligan at my side, and Bogey’s arms around my neck, melting down was not an option.   I pep-talked myself out to the car, and drove to McDonald’s for a Happy Meal.  Mulligan was pumped to get a toy, and Bogey loves a chicken nugget.  Of course, I only felt like drinking an endless amount of Diet Coke.

Not all the news of Bogey’s heart is shocking, or unexpected.    We have known from the very beginning that Bogey is going to need another heart surgery to replace the artificial valve that was inserted during his first surgery.   Plus, I vaguely remember hearing Axelrod saying this is not any kind of an emergency.  I’m not going to wake up one day and notice Bogey in right heart failure.  This next surgery could be in a couple of years.  This whole “enlarged right side” is just something to watch for now.

So, why do I feel like I’ve just been sucker punched in the gut?

My stress about Bogey’s eating, or lack thereof, has just intensified.  He’s got to gain weight.  Now is probably a good time to make an appearance on the growth chart. 

In the meantime, I’m super grateful that we are able to come to this hospital and to these doctors.  It’s been fun to have Mulligan here.  Hopefully we’ll have the chance to bring one child at a time, when we bring Bogey to appointments.  It is nice to have fun little helpers, and the conversations I’ve had with my little oldest son have been priceless.  He is actually hilarious, and has kept Bogey laughing, and so entertained. 

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The weather conditions haven’t been perfect on either end of this trip, and although it would have been great to hear, “Everything looks great, see ya in a year or two.”  This trip has been a perfect reminder of the testimony that I gained here and the miracles I witnessed almost two years ago. 

It’s those memories that I want to choose to recall.  Instead of  feelings of panic and anxiety driving me to drown my insides with Diet Coke, I have been driven to my knees, pleading for understanding and inspiration. I trust that Ace and I will be guided to know what is best for our family, and how to manage and help Bogey with his needs. 

Here’s hoping that next time we come to California, I’ll only be whining about how hot it is!

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