Rylee update

I think this is post #456 titled "Rylee update".  I couldn't think of anything better.  I have had quite a lack of sleep lately so give me a break.  You'll probably read run on sentences, misspellings and punctuation problems but I don't care! 

Rylee went into surgery at 8:05 am on Tuesday, 8/31.  As far as the doctor knew, the CF culture from the shunt tap on Monday was negative.  Dr Bragg was just finishing up the shunt repositioning surgery when the lab called.  The culture grew out, her shunt was positive for infection.  I am still unsure exactly the kind of infection, some say staph infection, others say they're not entirely sure yet.  Anyway, Dr. Bragg came in to tell us the lab had just called and that she was going to go back in since Rylee was still under to remove the shunt entirely.  There wasn't a dry eye in that room when she delivered the news.  I can honestly say that for the third time in Rylee's young life I was scared that she would die.  Maybe that sounds trival but there was infection so close to her brain and spinal fluid.  I was scared for her and still am.  At 11 am, Dr. Bragg stopped back in the room to tell us that she was finished but that they'd like to have a PICC line placed since she's having so many surgeries.  It would make blood draws easier and then they don't have to stick her to do another IV.  Finally at 12:30, after 4 and half hours, I got to go back to the recovery and see her.  She was awake already this time.  Dr. Bragg put in an EVD, external ventricular drain, to drain the spinal fluid from her brain so her head had a white band around it to secure that.  By 3 pm, she was in a lot of pain.  A little morphine helped her tremendously and she hasn't required any pain medicine since.  Tuesday night, Kristopher stayed with Rylee and I took the boys home.

Wednesday was Kristopher's birthday so I baked a cake at midnight Tuesday night and brought it up to celebrate.  Kris took Troy to the new Children's Museum to play and hang out together while Rylee, Weston and I stayed back to hold down the fort.  She was sitting up, playing with toys and books and watching tv.  Kristopher again stayed the night while the boys and I went home. 

Thursday, Weston had a doctor appointment with Dr. Connolly.  According the measurements, he has grew an inch and a half and gained 1 lb, 2 oz since birth.  He told me that Dr. Allison met him at the door Monday morning to tell him about Rylee.  She worried about her all weekend.  I filled him in on what has been going on.  He always asks how Kris and I are doing in which I can usually honestly say "fine".  This time I said "We're doing the best we can.  We're trying to do what's best for each child."  He then asked how Troy was handling it.  I just lost it then.  Earlier that morning, Troy kept constantly asking where Rylee was in which I replied "at the doctor with boo boos".  That's how he explained it to us one time so to keep it simple, that's what we tell because we know he semi-understands that way.  We had decided that during Weston's doctor appointment and the limbo time before Kris would take him that it would be best for him to go to Tara, the babysitter's, to play.  I put him in the van, told him to climb up in his "cool cool carseat" while I got Weston and when I came back to load Weston, Troy was sitting on the floor next to Rylee's carseat playing with it.  When I asked him what he was doing, he looked at me with the saddest face and said "I sad.  I want WYLEE" and started crying big tears.  I hugged, explained that she didn't feel good and had to stay for a little while longer but would be home soon.  He misses her plain and simple.  He comes to visit but she's pretty much confined to her bed and has to stay in one position so he can't really play with her or hug her or love her up like he's used to.   I told Dr. Connolly about what happened that morning, he said he's worried about Troy.  I think we're going to see if a child life specialist can come and talk with him about this stuff.  He understands that she has "boo boo's" but doesn't understand why she can't come home.  I don't know how to help, I think that he would benefit from seeing someone.  I also met Dr. Connolly's wife, I guess we're family friends now or something.  He popped his head in the room as I was going to load Weston in his carseat to see if his wife could see him.  She was smitten over him! After we left, we headed up to Madison.  I met Kristopher on the road between Mineral Point and Belmont, we waved at each other and that was all I got to see of him for the day.  I don't think you can even count that as seeing one another.  Last night was a bunch of playing with toys, watching tv and just laying around.  My aunt Lisa came to visit.  I had a fussy, squirmy boy who thought he had to be held all the time.  So her visit was extremely helpful, she was my saving grace! 

Today, we're just doing the same old same old.  She just got a bath and is a little fussy because they're messing with her.  Overall, she's happy and extremely friendly with everyone.  She loves visitors.  Anyone who comes in has to come over to play with her because she's so darn bored.  So if you happen to be wandering the halls of the UW Children's hospital, PLEASE come visit her.

Tomorrow is my dad's wedding.  Rylee has a beautiful dress that her grandma Klauer made for her but it will just hang in her closet.  She won't be there.  Kristopher is going to come up and stay the night with her while the boys and I do our thing at the wedding.

The tentative plan is for Rylee to have her EVD removed and a new shunt placed on Tuesday, spend another night, go home on Wednesday.  At least it's a holiday weekend so Kris and I can share the responsibilities better and Troy doesn't have to be shipped off somewhere.  So for the next 5 days, we're just hanging out.  I again beg that if you're in the area, please stop by and see her, she'd love it!