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Saturday, July 21, 2012

Incredible week...and a lesson learned

This was the morning of his latest surgery.  I hadn't slept well and needed to cuddle.  .....I am still in absolute amazement of how our past week has gone.  I worried and worried and Connor was home the next day.  ........I definitely spoke up this last time before his surgery and when each doctor came out to talk to us about what they would do during his surgery, I made it clear that we trusted that they were experts in their particular job....we were just worried about him getting off of the ventilator as soon as possible.  ........I will forever believe he was home so soon because of this fact.  ....Next surgery, August 1st (for G tube placement), I will request his last anasthesiologist.  She not only listened to our fears but visited us that evening to see how Connor was doing.
.....Connor's respiration was pretty low until the next day and he even had the alarms set off before we left, but I believe that was due to pain/pain management just as much as the prior anasthesia affects.  His wounds from removing the distractors look great and beyond fussing when we place his ear drops, I believe his ears are fine as well.    .........the afternoon before we left, the GI team came by to acess Connor.  They definitely believed the G tube was what Connor needed from notes they've apparently read but I was completely confused by the time they left our room.  I had thought the placement of the G tube was to help his reflux just as much as simply getting rid of his NG tube.  The doctor said G tubes can actually make reflux worse but that he didn't believe reflux was the big issue with Connor....????????......let's just say, I have alot of questions.   ....And just yesterday, he was scheduled for a definite G-tube placement/surgery.  ....I'd imagine this is good but when the GI doctors were speaking with us, they had mentioned several tests that he would need to make certain his anatomy was correct before doing this surgery.  I asked the GI coordinator about this and she is supposed to check on all of this.   .........I guess there is just more to come on this topic.  I have calls to make and will set up an appointment with his pediatrician this week to make sure we're all on the same page.    .........Connor had a bit of a rough day yesterday but I think his stomach is hurting from constipation (we'll pump up his one med today to get him to poop..it's been since tuesday).  And also, I think between all of his meds and having started back to his bolous feeds (the intervals of 3 ounces of formula over two hours and then off an hour) after having a slow and steady dose of formulat to his tummy the past few days, his stomach is simply sensitive and may have had too much too soon. ...today will surely be better.  He was very fussy and there was alot more spit up and sort of gurgly, gagging sounds yesterday.  Plus his tummy is hard....and having just had a major surgery that cut his jaw/face open again probably doesn't feel all that great.  And the ear tubes...I guess he had a ton of fluid and also an infection was starting behind one ear drum.  ....better day will surely happen today.

.....after all the scariness of the recent shootings from the Colorado movie theatre, I wanted to make sure I posted about the goodness that we've had from so many good people lately.  Beyond the outpouring of kind wishes, prayers, the occasional Avon business from someone that could of gotten their products from a store for immediate purchase gratification, and the help we've received from friends taking care of Sawyer....we've experienced a few great things from absolute strangers.  ...often, people will just mention how adorable our babies are and some will ask flat out what is going on with Connor.  With him having a tube constantly taped to his face, he tends to get looks wherever we go.  I usually just respond with he has some issues he needs to work through and that he should grow up just fine without remembering these surgeries and tough times.  ....well, my last Walmart trip and I went through one of the lines with one of the cashiers I see pretty often.  This time around, the young guy asked about Connor and I told him he had a surgery coming up.  The cashier proceeded to ask if he could pray for Connor.  I thought, sweet.  I also thought this guy would go home and pray for him.  ...nope, totally touched his foot, bowed his head and said a quick prayer for my little man.  And I'm not sure if mormons say "in Jesus name we pray" because I've never heard them say that, but it sort of made me feel a connection with home because most of my family ends all their prayers with this before saying amen.  ...anywho, after an instant of shock, I was amazed.  This is a fairly young guy that had a certain look that didn't necessarily say "Christian"....and here he was publicly praying for my baby.  It felt incredible.  Regardless of anyone's personal beliefs, this was a guy that actively was practicing what he believed in and that was a beautiful moment.     ..........also, we had no eggs or milk in the fridge yesterday morning so decided to have breakfast at Cracker Barrell before heading to get some groceries.  Some perfect stranger paid for our breakfast.  ...I'm still in a sort of shock over this random act of kindness from a stranger.  He didn't stick around for us to say thank you and I have no idea who the person was or what he even looked like.  I'm not sure if he was young or old or anything!...I only know he's male because when we asked for our check, our waitress teared up and said the man behind us paid for everything.  ...Can I just say how sad it was because we were not certain how to act?!  We both were instantly teary and talked with the waitress about how amazing that man was to do such a thing.  She could hardly talk and just sort of said he must have noticed Connor and that he had some obvious things going on.    .....I am far from kidding when I say it's sad we didn't know how to act.  It took us a minute to say thank you and to realize something wonderful happened and we were supposed to be grateful and leave.   .......We come home and do our daily routines and then decide to watch the first Dark Knight movie.  We had no idea about what had happened in Colorado at this point.  We hadn't watched the news and were enjoying the glow of unexpectedly having a great week. ....at some point, we went to facebook and sure enough, learned of what had happened at that movie theatre.  We went to a news page and read about the horrors that happened Thursday night and were just shocked of the violence people are capable of.  ....What shocked me even more was when I stopped and thought about how we see and hear about so many unimaginable horrors in this world, that we are almost immune in our responses to them.  I'm not saying that we don't care and realize that these things are horrible and sad and sometimes downright disgusting.  I'm just saying that we are not shocked to a point of being dumb-founded.  We do have that instance of horror or disgust but we immediately have conversations of the bad person or the sad families.  We spread a thought to the world that we hope this doesn't happen again and that our thoughts and prayers are with the victims.  We feel sadness for the parents of the evil perpetrator.  We are glued to the media, the horrible scenes, the stories of hope.  We form our opinions.   Yada, yada yada.   The point is, between reportings of natural disasters, evil doings, and all things horrible...we, as a society are a bit desensitized and I believe we have to in a way because those things are horrible and we can not let fear rule our lives.  .......and then we flip the coin, and realize how many wonderful and amazing things go on every single day.  We are desensitized and not tuned into these things and it is sad.  We make jokes about things being "gushy" or "sensitive" or whatever.  We roll our eyes because someone prayed for a baby.  .............it's just sad to think that we didn't know how to respond to one of the kindest things a stranger has ever done to either of us.  That man wasn't out for recognition, he just wanted to do something good and beautiful.  That kindness will linger with us for a long time and it truly has us wanting to spread that kind of goodness in the world.  ...I've always believed that kindness, goodness, the changes we want in this world totally start at home.  I believed I was doing good things but I feel I learned a lesson in Cracker Barrell and in Walmart.  I'm not doing a damn thing most of the time.  I, personally, need to change that.


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