Day 3

So we are 3 days after surgery.  The weather hasn't hindered us much, because we didn't plan to go anywhere any way.  Brooke's mornings are a little rough.  Our plan was to wake her at midnight give her pain meds and then let her sleep.  Well, she doesn't want to wake up at midnight and she surely won't take any meds at that hour.  So she's been waking up at 5am, very unhappy and painful. She still has trouble with painful urinating, but if we have pain meds on board she is well.  Usually by 10:00 am she's feeling better and her "normal" self, just a little slower. 
The unusual thing that happened is, she had a fever this morning.  Brooke has never had a fever, we didn't think she could get one, but she may have proved us wrong.  According to her discharge instructions this is not uncommon to get a fever.  But if it continues then we'll have to let them know.  No worries thus far.  Steve was kind of excited, something normal she's doing. 
Brooke was a little sad today that everyone was on the snowmobile but her.  We all took turns staying inside with her and she told me she was feeling good enough to ride too.  Silly girl..............I don't think so!!!!!
We've been surviving the snow just fine.  Living in the country you just expect things like this to happen.  It's a fun adventure.  Most of our roads have been closed at one time or another.  We just bundle up and walk around in the snow.  The fresh air is amazing and it's so beautiful outside.  God's country :)

Home!

We are home!!!  Home sweet Home!  Brooke had an ok night last night.  She was up often but in a great mood.  At 3:30a she told me she was ready to go home and felt, "great." Well at that hour going home was not an option.  So she played on the Leapster and hung out for awhile.  I was so encouraged!  The doctors saw her and were happy with her progress.  They turned off the IV in the am and took the cath out about noon. 

 We headed home and were back around 2p.  We kinda hurried ourselves out because we heard the bad weather was coming and we wanted to be stuck at home and not at the "spa." Our afternoon was a little rough.  The pain was getting best of her and urinating wasn't so pleasant.  She sat on the toilet saying out loud, "I am brave, I can do this.  I am brave."  It made me smile and broke my heart at the same time.  Her sisters surrounded and loved on her! 
After supper, 7+ hours of not peeing I told her she had to go to the bathroom or there would be more tubes.  There was a resounding, "NO MORE TUBES, I am brave!"  And I've never seen a kid so happy that she pee'd :)  I then told her she needed to take 2 steps.  Only 2!  Once she got her bearings she "waddled" off as Macy says.  She's sore, but being home we have her on a pain med schedule and so far it's working.  I'm thinking we'll get her up tonight for pain meds, just to stay ahead of the pain.  She has 6 incisions on her abdomen and groin.  But she's doing it.  We'll see what tomorrow brings. It's very nice to have all these sisters to help take care of her.

It was fun to get to see the staff that cared for her (and us) for so long.  They are such wonderful caring people and we've become invested in their lives.  We want to know who's getting married, having children, becoming grandparents.  It's fun to see their lives progress.  And they were quite amazed at Brooke's growth and life accomplishments.  For the 1st time since she was 6 weeks old she is TUBE FREE!!!  YEA GOD!!!

Blessed!

Today was it.  Feeding tube removal, and some urinary reconstruction. Ready or not, it was time to get things fixed up.  We went to bed with the weather being less than optimal.  But we knew we had to get there.  So we wrote all the notes out to the girls of school day agenda and snow day agenda.  And we went to bed.  We awoke to Macy Hacking up a LUNG!  She has sinus drainage and it gets the best of her when the rest of us want to sleep.  So not much sleep but adrenaline and caffeine have always worked in the past. 

Much to our surprise we drove out of the snow within 5 miles.  The roads still weren't great but not so bad.  We got Grandma Koeman up for nothing, because the girls didn't have school and could sleep in.  But she hung out with them for awhile anyway.

Here's one last good look at the feeding tube.  See ya later!!!

 Here is Brooke and her doll.  Her sisters got her all dressed up and ready for the hospital.

 They gave Brooke oral meds that made her "funny." We have some pretty good video and she was funny.  I laughed til I cried at her.  Our friend Missi came to hang out with us and was also entertained by the silliness :)  Good drugs!

 Then she was off.  We talked to the 1st surgeon after about an hour.  He removed her feeding tube and sewed all the layers back together so it lays nice and flat on her tummy.  I didn't take any pictures of that because it's not so pretty yet.  But it will be :)

We then figured we wouldn't hear anything for awhile but after 45 minutes another surgeon wanted to talk to us.  That got us a little nervous.  They found 2 hernia's they weren't planning on finding and wondered if they could fix them now, rather than later.  YES!  1 stop surgery!  You fix everything that needs fixing so we don't have to do this again.

They then did her urinary surgery.  All in all it took 5 1/2 hours about.  She has a bunch of little puncture marks on her belly, steri strips, internal sutures and a catheter.  We plan to have the cath removed in the am.  As long as she pee's and her pain is controlled we go home. 

She really is a trooper and did well.  Her sisters were spoiled by the Koop's today and brought up to hang out tonight. 

 

We had a literal party going on!  LOVED IT!!  And LOVE all these people!!!  

I also LOVE this!

Isaiah 58:8 "Then your light will break forth like the dawn, and your healing will quickly appear"

Joshua 1:9 "I am the Lord your God.  I will be with you everywhere you go"

John12:27 'Peace I leave with you.  My peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid."

These are verses that got texted to us through out the day from a Bible study group. Many of the ladies I know, some of them I don't, but it meant so much to us.  If you've had a child with health issues or even had your own health issues it's a strange kind of busy.  We sat there for 6 hours today.  We had time to do so many things.  But the sensible, organized part of your brain stops and all you can focus on is, "are they done yet."  So to know that others are praying for Brookie and us, brings such a sense of peace.  Not that we don't pray for Brooke. We do.  But honestly, during the hours she's not with me, I don't have the organized thoughts that I do when I am sitting here beside her watching her sleep.  We treasure every one's prayers and care.

We'll see how tomorrow goes.  Brooke would like to be home with her sisters.  1st words after surgery, "where's Macy?"  Gotta love them!

Gearing up!

Christmas is done!  As much as I LOVE to give gifts and have the Christmas parties, I am just as excited to get my house back afterwards.  I tend to get the Christmas crabby's and it lasted longer this year with the snow days.  We had some serious cabin fever. Even had the kids break out into a water fight in the kitchen.  SERIOUSLY?!?!?!?  I finished the fight by pouring water over a kids head.  She looked at me with much anger and said, "WHY DID YOU DO THAT?  YOU HAVE THE WORST PARENTING TECHNIQUE EVER!  Normal parent's ground their kids."   That comment just made me proud.  They recognize that I HAVE a parenting technique and they DON'T like it.  Maybe it'll work :)  We'll see. 
We are not back to a schedule yet.  Leah's had exams, which she has done very well with.  Good grades and doesn't seem to stressed.  And Brooke was home for a day.  We have such a hard time reading her.  She won't tell us she doesn't feel well.  She has never had a fever, she can't vomit, she has stomach aches daily and chronic diarrhea.  She was quiet for a few days and very low key.  But appears to be her normal now.  We pray for health the next week awaiting surgery.
I have the letter from insurance approving her surgery.  So it's a go from that aspect.  We have to go to her urologist tomorrow.  Her "normal" MD retired so we have someone kind of new to us.  We have met him once but he wants to see us again for "finalize plans."  I'm praying for no more bumps in this road but I'm not holding my breath.  If I said I had no reservations I'd be lying but I keep praying God will lead us down this path.   I have become aware my plans are not always His plans and His are always better. 
May 1, 2009 Brooke went into surgery to have her nissen and G tube place.  She came out looking fire red and bloated.  I have pictures that I have a very hard time looking at.  I VIVIDLY remember standing over her crying.  Crying for the pain she was in, how she looked, the feeding tube that I SOOOOO did not want her to have. 
We are not looking forward to this surgery.  No parent wants to put their child through this.  I'm frightened for her to be in pain.  She is EXCITED to get rid of the feeding tube, but the urinary surgery is another story.  So we just need to have patience and know she is again/always in God's hands.  We praise Him for how far we have come in this journey.  We will keep you posted how surgery goes next week.