long

i am exhausted.

today is the first day i felt like i cannot do this anymore.  i cannot take another week of this.


ironically, today was also sj's best day ever.  but she has been so bad that even though she had her best day ever, there is still a long way to go.  and i suppose that hit me like a ton of bricks today.  she is so much better. but she still needs to be way better than today to go home.

her xray was improved this morning.  not great.  but improved.  her fever was not as bad today as it has been.  i begged them to give her tylenol because she is such a different kid when she has a fever - completely lethargic and blah.  which they did this morning.  but then they came back and said they would not do that again because they want to see how high the fever goes.  which was thoroughly discouraging.  on one hand they tell me she needs to be up and walking and eating to get better.  but they won't give her tylenol and so she is not interested in any of the above!  i thought about getting in their face and wagging my finger and giving them a piece of this mama bear mind, HOW ARE WE SUPPOSED TO BE PROGRESSING IF YOU WON'T GIVE HER STUPID TYLENOL?????  but i refrained.  i did get a little testy with eric regarding the tylenol because he has so much power over the doctors and their decisions.  okay, he doesn't.  but i needed to get mad at someone!  (i think this is why they say kids' illnesses are really stressful on marriages...)

so we are taking steps forward.  even if sometimes it feels like the doctors are working against me!

today also was a realization for me of how long term this thing is.  i wish i could say we have done the heart surgery and we are done.  put the jammie pants in the wash and say goodbye to the hospital.  but there is so much else.  and if i am honest, i let myself go to the place today where i thought i cannot do this.  this is not what we signed up for.  this was supposed to be a 'minor' special need.  not only are there innumerable follow up visits over the next 12-18 months but there is also a real risk to her heart and lungs if she should even get a cold in the next year while recovering.  bottom line, her heart and lungs need to stay away from any additional stress.  so i am looking at trying to keep her well for the next year which is so completely overwhelming i cannot even think about what that looks like.

and, the biggest reality of today.  because of sarahjoy's enlarged heart over the last two years (it was TWICE the size of a normal heart) her breastbone has grown in a domed shape in order to accommodate it.  i was hoping that it would just go away with the surgery but we were told by the doctors today that it won't.  in all likelihood what will happen, although her heart will eventually go back to a regular size, is the breastbone will continue to grow abnormally and cause a somewhat disfigured looking chest.  once sj hits the tween years when her body starts developing and breast tissue comes into the picture it may be disguised some.  and as the muscles enlarge and pull on the breast bone the body may flatten it out a bit.  however, there is a very good likelihood that she will have to have another chest opening surgery where they insert a metal rod to reshape the breast bone.  when that surgery happens, i don't really know.  the good news is that there is a world-renowned clinic here at this hospital that operates on that deformity, known as 'pectus.'  the bad news is that truly our little girl will not be completely normal looking.  does she care when she is two?  no.  but her mama cares.  and she will care.  in fact, i really care.  i can't lie.  it really bothers me (insert major tears here.)  people can tell me all they want about how wonderful we are and that sj is a miracle and all that true stuff.  but this mama doesn't like it any more than any other mama that her little girl is going to have to deal with something that makes her look different.  at this point i don't even care about the surgery.  i just care about my little girl's heart and how she is going to have to deal with being different.  and how bad is it going to look and will people constantly ask about it and what will it do to her self-esteem............

i am exhausted.  i am physically and emotionally wiped.