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Day of Waiting

Friday, November 30, 2012

We have had a good day today.  Our morning was early but by 9AM, Bennett was interested in getting off his bed and walking around.  I remember last time that once he got down and walking around, he began to feel much better.  Today he has been his silly self.

He insisted that we play superheros this morning.




Poor baby looked so swollen and sick but he was in great spirits.


We decided to walk outside of our room.  Bennett did a great job walking while connected to an IV pole. (It turns out that Bennett wasn't supposed to be out of his room without a mask and shouldn't have been allowed to touch anything...but we didn't realize the full rules about medically contact procedures until later in the day.  See below...)


It's amazing how "baby-ish" he looks in this picture.  I'm so glad there is still baby in him.  I'm not ready for him to grow up.


While we were "out," we noticed the play room.  It was closed but I promise Bennett we would come back to see it.


When we were peeking through the window, I noticed Bennett's sign (made by Child Life) on the table.  This is one of my favorite things Scott and White Children's Hospital does.  We have had one during almost each admission (including here and here).


Our silly Bennett obviously feeling better!


I took Bennett in so I could get a cup of ice for the cans of diet cokes I brought with me to the hospital. Bennett said he wanted one...until I realized he didn't want a big glass like me, he wanted "the little one."


So, I grabbed myself a cup or two and grabbed a "little cup" (aka a coffee creamer) for Bennett.


He loved using a tiny cup, although I poured out the cream.


While trying to take a picture of our cups, Bennett hit his against mine.  I said, "Cheers!"  He said, "no, Cheese!"  So, we "cheesed" our cups together - in honor of Bennett getting better.


This morning, we did Vest and nebs as usual.  Sometimes, I find Bennett does best if we do the Vest and Nebs separately.


I loved seeing this hidden smile this morning.  He is still on Loratab and had had some morphine but with pain management, he seems to be doing great!


Another shot of Bennett being silly.



Oliver and Daddy showed up for lunch today.  As usual, Oliver was very tender.  Shortly after this moment, Oliver, who has been very concerned that Bennett is going to die, came up to me and said, "Mom, Bennett just punched *really* hard.  But that's ok.  It's just that my brain tells me this means he is getting better."  Touche, my son, touche.


Early this afternoon, Bennett apparently found himself a comfy spot to take a nap.  Unfortunately, I'm still being fueled by adrenaline, otherwise I'd crawl up right with him.


The nurses originally put an IV in Bennett's arm without an "arm board" (the board that Bennett's right wrist is wrapped around keep him from pulling out the IV in his arm.)  I asked several times to see if the nurses were going to give him an arm board when I noticed he hadn't been given one after surgery.  The nurses sorta blew off my request.  So, I finally had to stop and make it very clear that I wanted him to have one.  Once he got one, I noticed his interest in taking out the IV and his preoccupation with being upset he didn't have use of his arm lessened significantly.  I think "arm boards" are wonderful for toddlers because they so easily forget why they can't use their hand.  From now on, I'll insist on one earlier in our stay.


One of the most precious gifts I have received came a few days ago, I placed on Bennett's wall as soon as we were admitted.


Bennett's teachers from Bennett's school made a beautiful sign of all of Bennett's classmates' fingerprints for Bennett to put in his hospital room to cheer him up.  I placed it under the TV so he could see it best.  Bennett has asked about it several times since we've been here.  He loves it.  We've talked about his friends, about which color of paint his friends' used and how they can't wait to see him at school next week.

I actually cried when his teacher, Mrs. Missie, gave it to me.  I was both so touched that she would make such a thoughtful gift for him.  And I was so sad that his little class of 2 and 3 year olds were even having to make a sign for his hospital room.  But I am so glad they did.  Not only did it cheer up the room, it reminded him of them...


...and of his self. Mrs. Missie said Bennett saw is friends doing their handprint and wanted to do his handprint too.  I love it even more for that reason. :)





Tiny fingers remind Bennett he is loved.



One thing I haven't really mentioned is how we have been on "medically protected contact orders" during our hospital stay.  I have to say this is literally one of the most depressing parts of having Cystic Fibrosis.  It's makes one feel like a leper...and what's the worst is that nothing you do will ever allow you to have freedom inside the hospital ever again.  Usually hospitals require contact precautions when a child or person has a contagious infection.  But, for Scott and White Children's, it's no matter what if you have CF.


What does it mean to be on "medically contact precautions"?  Bennett is confined to his room for the entire of his stay.  No one in our family, but especially Bennett, can come into the floor playroom (you know, the room they created specifically so children would have a place to go play and forget they are sick?).  And every person who comes in our room must wear full protection: a gown, gloves and a mask.  It's scary for Bennett and it's isolating for our family (then again, I guess we are considered in "isolation.")


I know it's for the best - for the other patients and for us.  It's absolutely for the benefit of Bennett.  We don't want sick germs from other medically compromised children.  They don't want ours.  But how do you deal with being "on isolation" or being on "contact precautions" during entire hospital stays for one's entire life?  I suppose, you just get used to it.  I am trying to have a good attitude about it...but it often feels the rules are forced and arbitrary.  And more than anything, it just reminds you you're a part of a subset even while being in a subset. (Having set that, there are some rules that allow us to get out of the room or play with the play room toys.  Bennett can get out, if he wears a surgical mask the entire time...and we can borrow toys from the play room but only because they can be individually cleaned afterwards.)

In other news...
We saw the ENT doc today.  I mentioned to her I wish I had asked her to do a culture of the bacteria in Bennett's lungs while she was doing a bronchoscopy yesterday.  Although we get a throat culture each CF appointment, the throat doesn't always tell us what is lurking deep in the lungs.  Often, the best way to know what bacteria may be growing is through a bronchoscopy.  However, the doc said, "oh, I would have if I had seen puss or lots of mucus.  But the lungs were clear.  I didn't see anything."  Surprised, I asked, "did they look normal?"  The ENT answered, "yep!"  I was thrilled to hear this.

We are now waiting to hear the final word from the doctor - is she going to let us go home or keep us another night?  She has been wanting to see how Bennett's rectum has healed.  He seems to be tolerating his pain with just an oral dose of Loratab.  He also seems to be eating and playing normally.  There is a lot of swelling in his scrotum, legs and feet but the medical resident seemed to think this was fairly normal and he would pee it out.

So, the boys are playing in the room.  I am beginning to pack up and we are all thinking that we should be at home tonight as a family.  But, in the hospital, you're never free.  You can't go anywhere until the doc discharges you.  So, we spend our day waiting for a signature on a form...

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