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Tuesday, July 17, 2012

The Day Before another Surgery....

I should probably title this something else but since it's the day before surgery...it'll do.   .........The process of preparing for Connor having surgery really starts weeks before.  Anxiety and worry is a given.  Reminding other doctors is not.  .......In the past few weeks, Connor seems improved as far as he sounds but then again, he can still sound horrible on any given day.  The area where the jaw distractors come out of the back of his ears got slightly infected at one point where green mucus began to ooze a bit at the wound site.  ...Speech therapy (where he learns to feed/move his tongue and swallow) has basically been pointless at this time because everything depends on him doing well or having a set back with this next surgery.  Even seeing his everyday pediatrician has been about monitoring his weight, not getting a diagnosis for feeding problems.  ........This next surgery has me on edge.  Connor smiles now, he coos and "talks" like no other baby I've ever seen.  He is, to say the least, just beyond adorable.   ..........Last night, it was hard to sleep.  So, as in all of us saps, I  posted a worry about Connor's surgery on facebook.  And, say negative things about facebook (I do all the time), but my friends and family that were up, were encouraging and I eventually shut off the phone and went to sleep.  ....Today, I'll have my phone attached to my hip awaiting the call that gives us the definite surgery time.  I don't know why I tell everyone that I'll call and let them know.  He'll be first.  The youngest are always first at Primary Children's (unless it's lengthy or emergency).  We'll have to get up around 430am.  We'll have Connor, Sawyer and myself packed tonight.  ....Sawyer will need to have some basics to go to our friends' house and most likely enjoy a bit of being spoiled.  I'll pack a minimum amount of things for Connor because the hospital will take over his basic needs.  I'll definitely pack his feeding needs in case of an emergency (we learned the hard way to always have an extra bag and formula).  He'll need a few diapers, some outfits for when he gets better, and I like to bring his own blankets.  Because we figure on him staying longer than the standard 3 days, I have a basic collage of pics printed out and framed for him.  His family will be there (as I know they'll be in thoughts and prayers).  I have every Grandparent, Aunt, Uncle, first cousins, brothers, his own angel/sister, and of course us (mom and dad) on this collage.  It matters and I wish I had it last time.
...I pack with a sense of hope and reality.  I want us to only be there for a few days but am told too often to anticipate another set back.  I figure I'll pack for 3 or 4 days and nights because I'll need to go home at some point and this will force me to.  ....It's funny...in a sick way, I guess...but I imagine I'll be like the movies and read or embroider projects because I'll be sitting over Connor day in and day out.  I stress shop for some materials, patterns, threads....this is my thing.  I spent part of last night ironing fabric.  ........It is highly doubtful I'll read more than a magazine and beyond the actual surgery time, I end up googling every single word that a doctor or nurse says.  I stare at his monitors and will numbers to go in the direction I want.  I stare at him and will him to get off any particular machine and to please heal fast. I pray and I pray hard.  I start feeling guilty that I'm not with Sawyer.  I feel guilty that I'm not updating Tristan, Phil, my mom and dad...I start feeling guilty that I haven't talked to Mikey's mom or dad, that I'm not asking about Nana Tam because she's going through things, I haven't called anyone in our Broad family.  I've neglected Sarah and the boys.  Ben is in my beloved Air Force and I haven't sent a care package.  Have I texted Bobby?  Donna?  Bonnie??....I start missing Ireland....and oh how I want to call my friend Tree (my friend that passed away in January).  There aren't many people you can call in the middle of the night but Tree had her very own weird schedule and I could tell her ANYTHING, EVERYTHING and there would be noooooooo judgement.  There would be no feeling of guilt because she was tired or stressed herself.  She was amazing and in my toughest times, I miss her.  I just miss her anytme, but I feel like I need her during the stressful times.   .......Ireland, I feel there.  Sometimes it's comforting and I'm going to be honest, sometimes it worries me that she'll want to take my Connor (I've just confessed my deepest and darkest worry so careful how you judge, please).   ........It is the craziest thing ever but our song for Ireland is Smile (sung by Uncle Kracker)....it played constantly when she was in the hospital and was one of the last songs we heard before she finally left this earth.  ....Without fail, we hear that song nearly every single time we are nearing Primary Children's hospital.  It almost borders on creepy and truth be told, we've turned the channel before so we don't start crying......For me, I smell her (or rather the intense smell of flowers we had leaving the funeral home with a car full of beautiful and lovingly given arrangements).  It's only happened a few times but it happened the one night when Connor had his actual jaw distraction and I was so very worried about Connor getting off the ventilator.  That night it wasn't scary or necessarily comforting.  It just felt like it was a fact she was there with me and a moment I will never forget.  It became a comfort when I realized she wasn't there to take Connor but just a sort of moment she let me know she was there...I wasn't alone and I spent a moment with her and that was beautiful.    .......anyway, Connor will get his distractors out tomorrow and also have tubes placed in his ears.  There will be no turning us away this time regardless of how good or bad they believe his lungs sound.  The distractors must come out before they grow into the bone further.  ....He is still slotted for about a 2 and a half hour surgery (as far as I know, this hasn't changed).  He did not have to get blood taken for a possible transfusion so I imagine this means they believe everything should go smoothly.  I, personally, do not worry about his surgery.  I trust his surgeons completely.  As always, I worry about the after.  I want him to rock that ventilator and get off of it fast.  .....Mikey constantly get irritated that he even needs a ventilator but it's because all infants need one.  They're young bodies are nowhere near the same as ours.   ..........I have the name of the drug, precedex, if he begins to rely on the ventilator more than trying to breathe on his own.  This was the drug that sort of surpresses his diaphragm and if Connor starts to get sort of lazy and wanting the ventilator to do all of the breathing work, I need to mention this drug to them.  I don't remember all the ins and outs of how this changed the game because I recall them putting him back on this when they discovered it was a problem but it was the drug they wanted me to mention again if we start to get in a predicament.  ....I am fully prepared for Connor to need a little more time after the surgery but the intensive care unit is the place I want us out of quickly.  The PICU staff is amazing, he gets 24 hour care there,....it's just not the place you want your baby to be.  Even when the babies are doing "good" there, the fact is that it's called intensive care for a reason and I want him in the general unit ASAP.  Once there, I believe I can breathe a little easier.  I like to be there because those nurses are responsible for too many babies at once and who knows if Connor will have a noisier cry this time or not.  Of course, the nurses' station has his monitors, but they are human and rely on hearing them just as much as those monitors and last time, you could hardly hear Connor when you were just next to him.    ...........I feel more worried this time.  I am scared for him and feel it's pointless to say you don't want him to be in pain because of course he'll hurt.  Surgery causes pain.  ....I am worried I'll be the most hated parent because this time around, I don't feel clueless.  I expect him at the very least to see a GI (gastrointestinal doctor).  I will not sign a release paper until he sees one.  He may not get a diagnosis for his feeding issues but he damn well will see an expert while we are there.  We will not go home with me feeling helpless as to what is going on again.  ...I can totally work an NG or NJ tube.  I am comfortable with suctioning and checking oxygen.  But, I want a clear or atleast clearer plan of what Connor's next step in healing is.  I've got the honest assessment of he'll not be taking anything by mouth (most likely) in the next six months...well, he's still got a cleft palate that needs closed.  Will anything he learns after this surgery be screwed up the minute he goes for yet another surgery to repair that?!  If they want to give him a "G" tube in a month or two to replace his NG tube, will that set him back again????......ugh!!....prayers for a quick recovery for Connor and answers to his additional problems....please.




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