nine

not one day did i ever imagine us being in this scenario.  i guess i thought that if things were going to go south, it would be during the surgery, not in recovery.  but we are here - going on day 9 in the PICU.

sarahjoy is ever so slowly getting better. so far, we have not taken any super big steps backwards which is good news.  we have taken a few steps in the wrong direction but overall we are moving forward, at a snail's pace but nevertheless, moving forward.  she is up and about much more these last couple of days.  about 3 times a day we get her up to walk around the unit (complete with IV pole, wires coming from everywhere, oxygen tank, and the army of people in takes to hold/watch all of that stuff) and then she will sit up and play for a bit.  she is still wobbly on her legs (who wouldn't be when there is 75 pounds of stuff you are attached to) but getting much better. she is so tiny.  whenever we walk the entire staff turns and looks and cheers her on.  it's pretty cute.  unfortunately, there are not a lot of kids in the PICU that they get to see walk around and actually get better so she is a bit of a favorite.  plus she is so daggone cute.  : )

we are still dealing with the lung issue.  anytime there is heart surgery, the lungs are the thing that take the beating.  add to that the reality that her lungs have been working overtime the last 2 years plus she had bronchitis 2 weeks before surgery.  so those poor lungs, they are feeling abused.  there is still a lot of junk down in there that is preventing them from fully expanding.  and this afternoon, little princess spiked a super high fever which is a telltale sign of pneumonia.  so they have put her on antibiotics for pneumonia and she is getting a bunch of chest therapy (which consists of a vest that's wrapped around her torso and shakes her like crazy so the mucus vibrates loose.)   the fact that she is up and about is a huge step in the right direction.  laying in the bed is the worst thing for lung issues.

her oxygen has been reduced.  we are not quite off of it but we are getting there.  one specific prayer request...she has several meds that have to be taken orally throughout the day.  and she HATES it.  she is normally a great medicine taker but she is over being stuck and poked and prodded so she puts up a major fight every time.  the nurses try every trick in the book but sj is so stubborn.  my best guess is that it is one area in which she can exert some control so she is going to take advantage, like any good two year old would.   so please pray that she would take them easily.  it is exhausting working for an hour trying to get her to unclench her teeth and take them only to have her store them in her cheek for a LONG time and spit them out.  that kid.  i am seriously going to have my hands full if she is this stubborn when she is sick.

speaking of being over it, sj is hilarious.  every time a nurse walks in the room (which is a lot since there is one nurse to every patient and the kid has something going on every hour at least) sj gives them the evil eye.  and then she closes her eyes and just stays really still hoping they will go away.  she'll open them, see the nurse, and then quickly close them again.  she does not like any of those people with stethoscopes around their neck.  and she cries every time they put a finger on her, whether it hurts or not.  she is so tired of being here.  and it is getting very weary having to watch her be so sad.

a lot of people ask how i am doing.  i suppose the answer is, okay.  i am getting good sleep at night - most of the time i stay at the hospital in a sleep room that they have for PICU parents.  but it is exhausting.  i don't know how these families do it that have sick kids for lengthy periods of time.  sj is pretty 'demanding' in that i am constantly entertaining or cuddling or consoling or duct taping her so she'll take her medicine doing something with her.  and the emotional toll of one hour thinking we are making progress and the next hour going backwards is wearing.  i just want her to be better.  and i want someone to tell me how long this is going to take, how long we are going to be in PICU, what it's going to look like when we go home, how long before she is a healthy little two year old running around.  but those aren't questions that anyone can answer.  it is literally a different answer at any given time of the day.  this morning when she was walking around it would have been a very different answer than this afternoon when she spiked a crazy fever and was completely listless.  it is just a waiting, and praying, game.

as much as i get frustrated at our situation, i can't help but be thankful.  there is a little boy next to us who just had surgery for a brain tumor today.  there is a baby boy who will be heading to heaven any day now.  yesterday you could hear his family wailing.  there is a teenage girl who was hit by a car last week and is laying in bed with a million machines hooked up to her.  and those are just the stories i know.  there is so much pain and tragedy going on all around us.  i have to block it out when i walk to the bathroom. i just can't go there right now.  but i am pretty sure my mind will wander to those beds and to the PICU unit for the rest of my life.  you can't help but be changed.

thank you so much for your continued prayers. we need them, constantly.  i will continue to update as best i can.  but know that we are immensely grateful for every prayer that goes to Jesus on our behalf.

sj and the vest of terror.  i am not even going to comment on what i look like.  

"seriously, mom?  you told me my new life was going to be great.  not exactly living up to my expectations."