Tuesday, August 23, 2011

The Sick Story in Pictures Part 2

I think I left off my last post with the delivery of the fun signs for our room....that was Friday morning. 

Friday afternoon, I was laying beside klp in his bed (we were both sleeping) and I heard a familiar, "MAMA!!!" and I looked up and my Quinny boy was looking in the window!  My parents and Quinn were finally here!  

He happily played with the room full of balloons and was pretty excited to see klp. He kept saying, "Bubba!" and patting him.  klp on the other hand didn't show him much attention.  Maybe he was kind of liking life as an only child!! haha!  

When qsp saw the poster below (hospital decor) he said "DADA!!"  we joked that it had been TOO LONG since he'd seen his daddy if he thought this was a picture of him!! haha!! 

This Friday afternoon was the big turnaround.  He perked up, would talk some and even play some.  It was a totally different kid than what we'd seen even the night before!  For the weeks before, I'd compared him to a newborn. He would sleep, wake up for a few minutes to eat (we fed him...he didn't pick any food up) or look around, then he was back asleep again.  Friday, he was still sleepier than usual, but he was alert and that little spark was coming back in his eye!  YEAH!  (this is the day I blogged the video!).  My parents had had lots of bonding time with q the past week, so they were happy to get to see klp! He and Gay Gay in the rocker.  

As you can imagine, qsp was pretty restless trapped in a tiny hospital room, so we had to entertain him.  Luckily we were in a Children's hospital, so they have lots of cool things to entertain kids with. He liked playing in these lights.  

Our friends, the Bookers, brought this balloon and he LOOOOVED it (and still does....its barely floating in our living room as I type this).  We were so happy to be PLAYING with Kanyon again!  Later that evening, Susan took Quinn back to her sister's house to eat and go to bed.  My parents stayed in the room with Kanyon and Kory and I went to a nearby Italian place and had a nice yummy meal.  

When we got back, we asked if we could just take klp for a walk outside.  He was still on contact isolation since he'd had e coli, but they let us take him out.  He was SOOO happy to be out and strolling around.  

he liked the lights and mirrors in the elevator.  

Luckily it was night time so we could stand to be outside.  Its only 98 at night instead of 110!!! haha, i'm only SORT OF exaggerating.  

I went to Frieda and Richard's house to spend the night so I could be with Quinn when he woke up the next morning.  I visited with them some and then headed back up to the hospital.  That Saturday morning he had dialysis and that was the last one he ever had.  He ended up having 6 I think.  Not too bad.  His kidneys actually kicked in gear pretty quick.  

Q enjoyed the fire hat!  My friends from Paris, Kimberly and Cathy, brought this and they LOOOOOVED it! Still do! 

klp lovin' the fire hat! See....the smile is coming back! 

The better he felt, the less we were in the room.  We strolled him all over the place. We went out to the playground thats in the shade and let Q play while we walked around.  

I think this pic is hilarious.  What an old soul sitting there with his arms crossed and his neck pillow! 

I spent Saturday night with Quinn again...big shout out to Kory for taking the hospital shift both nights.  We spent some time at the hospital on Sunday, then Susan, Kory, and Quinn headed back to Longview so q could be in his own bed for a while.  

By Monday, klp had discovered the bench in the room (or as he called it, "mama's bed") and liked to play on it.  His numbers were continuing to fall and his blood was improving with every day! YEAH!  We were beginning to see an end in sight.  

My mom came back on Tuesday to help me during the days.  She stayed at some friends' house nearby and was Kanyon's number 1 stroller driver! And book reader....

One day...I'm thinking maybe Tuesday (my memory is foggy) we were out in the main lobby visiting with Jodi and Brooklyn.  I looked up and saw Nurse Jim.  He was the nurse for the twins their very first day in the NICU. He was also the one that insisted on my holding klp the day that I did and he took such good care of us the whole time we were there.  BUT he was a traveling nurse, so he didn't stay at our hospital.  When we left, I had no idea where he went.  I have tried to find him several times...but its kinda hard since I didn't know his last name.  He was just Nurse Jim!! Haha! Every year when we send christmas cards, I want to send him one to let him see Kanyon, but we've never been able to! We were all so shocked to see each other and it was so much fun. He was there for a class that day and was on his way out when I spotted him.  I wish he could see klp in true form, but I was just so happy we ran in to him. 

Balloons+Fireman Hat+Glow wand= Happy Kanyon

playing with his cars and frogs on "mama's bed" Notice the "hospital hair" was going strong.  

loving the dry erase crayons our MT cousins sent us.  

Wednesday was the day of the surgery. If you remember, that day was LOOONG.  We were supposed to go to surgery at 2, but they wanted him to have a transfusion, so that delayed it, then it just kept getting later and later.  With no food or water, we were all BEYOND READY to have this done.  Finally around 8 or 9 they came to get us. HORAY!!!  

I took this as they were wheeling us down the hallway.  

mom took this of our luxurious ride to the OR

Me and klp went back to get ready while Mom and Aunt Nancye waited in the waiting room.  Once we got back there, we just waited some more....talked to a nurse that went to ACU in the 70's and 80's.  Go Wildcats.  

The surgery was quick and he came out STARVING. So at 11 pm we were feeding him goldfish and applesause. He was a little fussy, but settled in and slept good that night.  

The next day, Thursday, the Drs wanted to send him home, but I wanted one more day of blood checks. Since he'd had to have the transfusion the day before, I wanted to make sure he wasn't going to dip down again.  So we spent Thursday cruising around the hospital since we pretty much had no reason to be in the room. The E Coli was long gone so we weren't on contact isolation anymore.  

Here he is showing off his motorcycle GREAT Aunt Gwen Ann and Uncle Pee Wee got him.  

And of course faithful Aunt Nancye was there to bring us food, toys, and good company!!

Friday finally came and we were headed home.  Kory worked half a day then came to pick us up.  We were happy to be on the road HOME!! 

We got home and our friends Gary and Sharon had stayed at our house with Quinn.  They had us a FULL DINNER cooked, gifts for the boys and a clean house!! It was awesome!! Within about 5 min. of being home, klp was asking to swing, SWING WE DID!!! Then we played in the water table...just like normal!  

my happy boys is BACK!!!  

and I don't have to be away from this cutie ANY MORE!!!  

and we finished the night off with a ride in the wagon!!! YEAH!!!  HOME SWEET HOME!!  

I have several closing thoughts here that will only make this post longer, but I want to get them out. In no particular order: 

-We don't know how in the world Kanyon got E Coli.  UGHH.  The chances of it turning into HUS are VERY VERY VERY SLIM.  The Dr. in the ICU told us that most pediatricians work their whole careers and never see a kid get HUS.  Well well well, we managed to make sure our pedi got to see a case of it!  klp was a textbook case.  They even said that it seems like for some reason blonde hair and blue eyes get it more.  hmmm.  It has nothing to do with his prematurity or the possibility that his immune system might be weaker.  "Its just bad luck" the Dr. told us.  Not sure if that made us feel better or worse, but my Kan Man drew the short straw on this one. It could've just as easily been any other kid.  

-Having a kid besides the one in the hospital significantly complicated the situation.  WOW.  I was so thankful that our parents were able to trade off and watch Q and still be able to help me at the hospital too. It was so great to know that Quinn was happy where he was and I didn't have to worry about him.  He got to go from one grandma to another, so I'm pretty sure he didn't mind.  :) 

-At first thought, it almost sort of made sense that I was in the hospital with klp. I mean, I felt like I'd done it so many times before.  BUT the truth is, I haven't.  The only other time he's been in the hospital after the NICU was for feeding.  Those were LONG stays, but it wasn't a typical hospital, and it most importantly, he wasn't sick. AND THAT IS VERY DIFFERENT.  This was so much harder in so many ways. He's older, talking, and SICK.  Hearing him cry and seeing him scared was heart wrenching.  Terrible.  Almost more than I could handle at times.  He was so good though, and I was so proud of him. But maybe more than any other time in his life, Kory and I just wished so bad we could take the pain for him.  Swap places so that he didn't have to go through it anymore.  It is so hard to watch your kid be so sick and we were so thankful to see that light back in his eyes.  

-On a selfish note:  Kory and I had a vacation planned with 2 of our couple friends.  We'd been talking about having a vacation together (with no kids) for years.  FINALLY this year no one was pregnant or nursing or on bed rest so we planned it months ahead of time and were SO EXCITED.  New swimsuit (me, not Kory), new sundress (again, me not kory).  SO EXCITED.  Aaaaaand we missed it.  It was during our hospital stay.  Bad timing to say the least.  I was really upset.  As in--I wanna kick and scream and throw a tantrum and scream IT'S NOT FAIR!.  I didn't.  I'm sure we can make the vacation work some other time, but it just kinda stinks.  

-It was hard for me to get too discouraged in that hospital. This time, more than any other time, I was so aware of how SICK other peoples' kids are.  We were stressed, tired, and annoyed at the situation, but we weren't in fear of his life. And SO MANY PARENTS are.  When we got there and they talked to us, they told us to expect to walk out of here with no problems or future problems.  A lot of parents don't get that kind of prognosis.  I just can't imagine.  I was so thankful that we had such a "mild" problem compared to what so many people deal with.  It really put things in perspective.  As bad as it was for Kanyon and for us and as sick as he was, we knew we could look forward to "normal" again.  Even the day we came home, I just couldn't stop thinking about how many people WEREN'T going home. Or how many had just received bad news that day and were just STARTING a hospital stay.  Its humbling.  

-We are surrounded by incredible people. That thought was never NOT on my mind the whole time I was in Dallas. I wanted so bad to try to articulate it in the middle of everything, but I didn't have the time to put it all in words.  I really feel like we have THE BEST FRIENDS in the universe.  Our church family here in Longview, both of our church families from home, friends here, co workers, neighbors, family here, family at our homes, friends that live in the metroplex, friends of our friends who reached out, blog friends, I could go on and on and on and on and on.  The support and love was absolutely overwhelming. We felt SOO COVERED with love and prayers and support. And when tough times come, there is NOTHING better than being surrounded by the body of Christ.  It seems like we've been able to see that Body work in our lives on several occasions, and while we wish that didn't mean it was because we'd been through hard times, we feel so blessed to have experienced Jesus in the flesh.  Really.  I know that so many people go through things like this (and worse) without that and it breaks my heart.  The worst thing in a hard time is to feel like you're alone and we have NEVER felt alone.  I wish everyone could experience this, because we all have times in our lives where we need to be surrounded. So, even though Thank You seems to small, we THANK YOU for everything you've done for us. AGAIN.  It really does change us forever.  It changes the way we look at situations and at other peoples' situations and it makes us better people. We are learning how to be the body of Christ from YOU!  I wish I could list everything people did for us. It was really unbelievable. It made me realize how much i DON'T do for other people.  SHEESH!! People brought food, gift cards, toys, snacks, drinks, balloons,  blankets, lap tops, our favorite cookies, books, magazines,....they sent us texts telling us what their young kids said about kanyon in their prayers, sent pictures their kids drew for Kanyon, left messages, sent us things to make us laugh, sent cards, left comments, emails, texts, it just never ends Mindi and Christy COMPLETELY DISINFECTED OUR WHOLE HOUSE.  THE WHOLE THING.  What an unbelievable relief it was to know that when Quinn got there it would be clean and safe. They did this without even asking or having to be asked. They just thought about it and did it. AMAZING!   It was just incredible. Things like that matter so much.  I was not able to come close to thanking people like I wanted to, return emails, texts, or calls like I wanted to, but I knew we were loved and being prayed for and that was EXACTLY what we needed.  I love to see how each person does things differently.  Love is shown in so many ways and it was fun to see everyone's personalities show! :)  We really do consider this support system one of this life's greatest blessings and we thank GOD every single day.  I really could go on and on about this, but I'll stop.  

-I am SOOOO thankful to people who spend their lives making advances in medicine and caring for sick kids.  Why in the world someone would choose to be a Pediatric Nephrologist, I don't know, but I am SO GLAD.  We have such amazing care and I owe so much to the people that spend their lives learning how to take care of sick people.  The whole dialysis thing was pretty incredible.  I watched a machine take blood out, filter it and run it back into his body. I watched a machine be a kidney!!! WHHAAAAT????!!! I was asking the Dr. some questions about it.  She said the machine only does about 10% of what the body can do.  While I'm BEYOND thankful that it does (dialysis saves LIVES every single day), it kinda made me smile too.  No matter how smart people are, they can't redesign what THE CREATOR did first.  They just can't match it.  She also said that they've only been doing dialysis on kids since the 80's.  Before that, HUS killed the kids that got it.  It shut their kidneys down and there was nothing they could do.  Do the math on that....that means I would've very likely died from this very thing if I would've gotten it when I was young.  I am SOOO glad someone decided to figure out a way to make a plastic kidney machine!  We were VERY pleased with our Drs and nurses.  I got a little annoyed in the mornings when at least 8 people came in one after the other to do reports. Its a teaching hospital so you have residents, students, fellows, and attendings that all do rounds.  EXHAUSTING! But, like I said, I'm glad they've decided to spend their lives doing something that will help sick ones! It takes on a whole new level of gratitude when that sick one is your baby!! :)  

-It really is ridiculous how long this is, so I'll stop, but I can't promise that I won't have more thoughts to share on this subject.  Kanyon is feeling good and getting more energy every day.  We go back to the Dr. Sept. 8 for a checkup and I'm expecting her to clear him to go to school, etc.  She told us it may take a couple of months for his hemoglobin (red blood cells) to get back to normal...so he may be lower on energy.  We've laid low these first couple of weeks but will be staring to get back in the swing of things soon.  He's pretty weak since he just laid still for 3 weeks, so I can tell that physically, its going to take a while before he's as strong as he was.  Walking on his walker is SO MUCH HARDER than it was before.  So, we will have some catching up to do.  He's still not so sure about being with Quinn 24/7 but I figure we have at least 14 more years for that to work its way out!  

Thanks again to our Phillips Phamily Phollowers!!!!!  

*this will be posted with no proof reading. its TOO LONG.  


Jodi said...

THANK YOU for these posts! Not only does it remind me to GET UP ON MY CRAZY SURGERY FEET AND DANCE a happy dance and be FOREVER THANKFUL for everything you are writing about, but it's also a fabulous reminder how WONDERFUL you are. You are a treasure, Miss Jaymie Gay. I love you dearly. You've been an inspiration to me in COUNTLESS ways, but right now, thank you for inspiring me to be the Best Mommy I can. Besides Jesus, you are the GREATEST gift those boys have. Seriously. God chose the perfect Mommy for Kanyon and Quinn. Not A PERFECT Mommy, THE perfect Mommy. And I am blessed beyond measure to get to witness it (on occasion, wish it was more!). I love you, and I am so so so happy Kanyon is better. I too could go on and on, but I will stop now. :) HUGS.

annalee said...

i am SO thankful y'all are home together and SO thankful for each member of your precious family!

Anonymous said...

1. You have two of the cutest boys on the planet.

2. I live pretty close to a beach now. Come on over anytime to get some use out of the new sundress.

3. What's amazing about this whole thing is to see YOUR personality show - your humility, gratitude, strength, selflessness, patience, low maintenance-ness, humor.

4. Thankful that Kanyon is on the "well" road. Can't wait to hear him laughing again! Yes, a trip to Houston is in order.

-KLP (Do you realize that my initials are the same as your klp's?)

sharon said...

so glad you are home and kanyon is feeling better and better! i love reading your long posts - you write just like you talk. i *almost* feel like i am sitting on the couch next to ya. ;) we need to get a girls weekend on the calendar. i miss you too much!