24 hour stint

What a terrible-horrible-no good-very bad night.  It was so bad at times that I found myself blogging about it in my head.  :)

I was on duty last night with Simon.  I haven't slept at the hospital since Simon went in.  That doesn't seem quite fair does it?  Nope.  It most certainly isn't fair.  See, I married the one and only most fabulous Gary.  He knows that I have trouble falling asleep initially and when I'm awakened, so he has volunteered to sleep at the hospital every night except for two when his mom did.  (I'm so sorry Mom Petty!  I had no idea how bad it could be and feel terrible that you had to experience it.  You are awesome!)  The beeping alarms.  The "Mommy I have to go potty".  The checking of the vitals.  The changing of the i.v.  The beeping alarms because they weren't set correctly.  The visits by doctors.  The emptying of the urinal.  The flashlights.  The bed. . .oh joy the hard couch that becomes the hard bed.  The movement of my pillow over the edge of the couch because there was no stopper.  Yucky.  Horrible.  Frustrating.  Hard.  How is Simon supposed to get well if he doesn't get sleep?  ARG!

I must admit I started out with a great attitude and a great set-up.  I even brought my electric blanket.  I was not going to be cold.  I brought my own pillow: no excuse there.  I was ready.  I had to admit that my attitude didn't improve as the alarms kept going off and I needed to alert some folks to take care of things. I really wished I had a door lock.  I may have even had. . . ahem. . .impure thoughts using impure language.  Don't worry.  I've confessed.

BUT

Two good things happened last night.
1. Simon pooped.  Seems like such a little thing that we do every day, but he hasn't been doing it every day, not even every other day. . . nor even for over a week.  One of the criteria for him leaving the hospital is being able to poop.  He informed me in the middle of the night that he thought he had done it.  He was right.  I opened up our room door and whisper shouted "Simon pooped!" as I pumped my fist.  It probably would have gone over better had it not been 3:00 a.m.  Still, if there is a reason to celebrate, I'll celebrate.
2. I realized once again that my Gary loves me.  He loves me enough to put up with this night after night knowing that he can handle it better than I can.  Gary tells me every day that he loves me, but things like this just really cement it and show me he means it.  He loves me.  I hear it and I see it.

Today Simon was tired.  Today Simon was able to eat food.  I chose yogurt first and then he insisted on bacon.  Love that boy.  His doctor says we'll be there awhile: his blood work isn't coming down like it should.  It's moving down, but not rapidly.  That means more hospital time.  Today Simon complained less about pain in his belly.  Today Simon walked faster and more upright.  Today Simon complained about walking again.  Today Simon beat me in Mario Kart.  I was tired, but we celebrated eating today and I got to enjoy my boy's smile.  So I guess it wasn't so horrible after all.

tears

I've cried every day for the past couple of weeks.  This probably isn't a surprise to you at all.  First, I'm a crier. Second, Simon.  Third, blessings.  Seriously.  I think that I've been shedding more tears about the care being shown to us than the whole Simon thing.  That might not be exactly right, but it is close.

Sure I cried when I had to tell Simon he was going to have surgery and his eyes filled up and he begged me not to do it.  I cried yesterday when he asked my why surgery was good and I explained that without it he would have died.  I cried when I saw his pain during the insertion of the ng tube. . .when he couldn't get his breath. . .when I told him he'd have another surgery. . .when we were told that there were more abscesses.  On and On.

What has surprised me is the outpouring of care.  I've been crying because every day we have been surprised by folks.  Special gifts.  Very unexpected.  Care packages on our porch.  Visits at the hospital.  We are receiving cards from people we don't know.  Garrison, Noel and Penny are also receiving gifts and cards.  I didn't even begin to think about the cost of gas, but others did.  I couldn't figure out how to get groceries but others did.  Since I love to cook I thought I could keep up: I couldn't and folks have been taking care of that issue.  Offers of taking my kids for days at a time.  Simon has received boredom busters galore and I bless God for that because as he is getting better, boredom can come creeping in.  Someone offered to pick up Garrison and bring him to school.  It may seem little, but I cried because I didn't have to think about it and plan for it--or forget about it!           One person even offered to get some Diet Mountain Dew for me.  Mama Petty flying here (oh there I go again!) and Mama Koeman and her constant babysitting and cleaning my house. . . . We are so humbled by the dollars here for gas and a few there for pizza and some to help with medical costs.  When we didn't even know we needed it, it was provided.

I've cried because I am not worthy of this love, worthy of these gifts.  It has been hard for me to accept.  I just want to buck up buttercup, yet I can't.  We couldn't have done this.  We wouldn't have made it without these people, without their prayers, without their gifts of time and resources.  People threw us life jackets when I thought we didn't need them.  I would have drowned.

In my devotions last week, Beth Moore talked about Job and how God boasted in His servant.  She wondered if God was boasting in us?  "Do we go through trials so that God can boast about us?" she asked.  The answer is yes.  I believe with ALL OF MY HEART that God is smiling and clapping and boasting to all the angels about the community that has surrounded us.  He is so very proud of the way you have handled your sweet selves. [Supper just came to my door by the way.  Wow!]  I am changed.  I am changed as a mama because of this.  I am changed as a friend because of this.  I am changed as a daughter and as a sister because of this.  I will always look at people differently because of this.  I will respond differently than I ever have before because of this.

It wasn't Simon's hospital stay that overwhelmed me.  It wasn't setback after setback.  It wasn't the putting together of the child care puzzle.  It was God working through you.  Tears.

If only Simon could fart more.

I'm feeling disconnected from the hospital scene as I wasn't there at all today.  The first time that has happened since we began our journey.  Here is what I know.

1. Simon is off of liquids again.  This was very hard for him to accept (me too!).  His belly is distended again and the docs were concerned about the blockage still being there.  They did not. . . I repeat did not insert another ng tube.  Instead they. . .
2. Took an x-ray.  It looks like this boy is full of gas and the cure is walking.  Gary is quite the pushy father and they have been making laps in hopes of farting.  I found myself praying for farting today--not exactly what I envisioned for my time with God.
3. Simon was able to skype with his class this afternoon.  What a huge gift!  He was able to be a part of story time.  It brought tears to my eyes and I wasn't even there.
4. Simon bent over 8 times to pick things up off of the floor.  This may seem small, but for us it is great!  He hasn't bent over for more than two weeks now.  Yeah!  Small steps.
5. They have begun giving him nutrition in his pic line.  Though I don't like it that he can't eat by mouth, I'm thankful he can begin to get nutrition.  They also pulled out his iv line.  Yeah!  One tube down, four more to go.

I'll be at the hospital all day tomorrow.  I'm eager to be with my guy again, although I did enjoy my home day with the other kids.  Garrison dressed up as David for storybook character dress up day.  He was so proud.  Noel held a hissing cockroach and loved it.  Penny climbed a ladder.  That girl is wearing me out and she is only 22 months old!  Gary even managed to take his lunch at home so I got a few moments with him as well. Hopefully tomorrow will hold lots of farting and then liquid intake.  :)  Until then. . .

Good/Bad/Funny

8:10 p.m.  I've been here at the hospital since 8:00 a.m.  I'm glad.  I missed my boy yesterday and I won't see him at all tomorrow, so this has been a good day in that regard.

So, I have good news, bad news, and something funny.  What would you like to hear first?  Funny?  Sure. . . I arrive in our huge t-ruck (we call it the tee-ruck) and got out all the stuff: suppers for Gary, lunches for us both, clothes, mail, and two 12 packs of pop.  As I'm waiting for the elevator I drop one of the 12-packs and it breaks sending cans of diet cherry pepsi rolling all over.  I laughed, stick my rear in the air and round em' up.  Comical I thought.  So, maybe it isn't so funny.

On to the good news: Simon enjoyed some sips of slushy as well as chicken broth and jello tonight.  Yup, you read that right.  He was able to drink!  Not only that but his ng tube was pulled out.  I video taped it.  After being so sad/whiny/frustrated/upset (Simon not me) all morning long. . . it was so great to jump and celebrate and shout (I did it all!) in our room.  What is that?  You'd like more good news?  Sure.  His surgery to re-position drain tube number 3 went well.  Stuff came out.  Gross, but good news.  Want more?  Renita is our nurse.  Good stuff.

Bad news: Sadly, there is stuff to report here.  This morning we received news that we might be able to be discharged when the drainage tubes are done because there would probably be an oral antibiotic that would cover the infections he has.  There was also talk that one or may even two of his drainage tubes might come out during the surgery.  Seriously?!?  So, not only did the two tubes stay in (Boo).  Not only was it discovered that there is no oral antibiotic that will treat him so he needs to stay on iv antibiotics for two weeks (Booer).  That puts us leaving on April 5 (The Booest!).  Oh have I cried tears about that one.  April 5--one week from Thursday.  I know we will make it, but my heart doesn't know that.  My heart doesn't know how we will take care of him and our other kids at the same time.  My heart doesn't get how a child can be in the hospital for two weeks and 3 days for a ruptured appendix.  Because of this antibiotic news they gave him a pic line during the surgery.  It is a tube that goes in through his upper arm and threads its way down towards his heart.  His veins were too little in his right side (ideal) so it in his left.  Another tube.  A reminder that when we go home he'll have this still in him.

So I read him a story, sang and prayed with him, and tucked him in.  My sweet Simon.  My heart is full of all kinds of stuff.  I'll chose to dwell tonight on the amazing.  Amazing immediate family who do whatever we suggest.  Amazing friends who are helping us.  Amazing church family bringing meals and cards.  Amazing school friends.  Amazing surprise gifts that bring us to tears. . . many anonymous gifts.  People love on Simon and love on us.  I look forward to being able to return the blessings over and over again in the future.  Boy God has to be smiling about this community.  Thank you.

Some thoughts

Hi.

I was up in the middle of the night again with two of the ducks.  Gary was up every hour with Simon so Simon could pee.  We are thankful for that.  Simon continues to make small improvements.  We haven't received the results of the ct scan yet, but I'm thinking that is good news.  He still isn't allowed to eat which is a source of great frustration for him.  He is walking more and is quite the sight with all of his drainage bags clipped on his shorts and pushing his tower with his iv line.  The nurses cheer for him which is fun.  Every day: good things.   God is saying "yes" to so many of the prayers being offered on behalf of Simon.  I know He answers every prayer and I'm so thankful that we aren't hearing "no" very often.

Now, back to me.  :)
So, Garrison is at my bedside around 2:00 after having experienced a bad dream: something about spiders.  I rubbed his back and asked what I could do for him.  "Pray for me please mom".  Of course my son.  I wrapped my sleepy arms around him and prayed for this precious child.  When Penny was fussing about an hour later I lay in bed just begging God to pat her back and put her back to sleep.  He said "no".  So I got up and rocked with her awhile.  Rocking awhile gives me time to think and pray. . . so does the 45 minutes after the rocking because once I am up---I.  AM.  UP.  I did pray for Simon during these times, but I also prayed more fervently for my other ducks.

They are off.  I don't blame them.  Things are different in the house and as much as Gary and I are trying to keep things "normal" they aren't.  Babysitters, trips to Grand Rapids, missing people at our table, going out to eat a couple of times, mom/dad spending more time on the phone and computer, Grandma Karen visiting, mom on the verge of tears all last week, only one parent home. . . . lots of changes.  Garrison has woken me up 3 times in the past week.  Garrison and Noel are fighting a ton!  I asked them if they were fighting with each other because Simon was missing from the house.  Garrison told me that if Simon were here, he would fight with him too.  Probably true.

So on this blog post, I'm asking for more prayer.  I know, I know. . . I've been very needy on the prayer side of things.  But would you pray for my other kids too?  The kids who are getting shuffled.  The kids who don't have a brother at home.  The kids who are living in a single parent home.  The kids who are tired.  The kids who want to play with all the gifts their brother has received.  The kids who I just adore.  I can explain it to them, but they are feeling the effects. . . and it is going to get worse.  At some point (please!) Simon will be coming home.  He won't be ready to be who they remember.  He'll need more of my attention.  He'll get home health care.  He'll have drain tubes coming out of his belly that Penny will want to climb.  (It's true: she tried this morning!)  It will be different again.

I'm declaring (with a whisper) that we are on the road to recovery.  Thanks for reading and praying and giving us comments, cards, calls, gifts, service, and for touching Gary so much at church he had a hard time leaving.  It is wonderful.

Saturday is looking good!

I think this girl loves her daddy.

One of the first smiles we've seen!  What a welcome sight for this mama.

Look at those swollen cheeks!  Did he just get his wisdom teeth out?

One huge perk: playing Wii at the hospital!

Our view

Painting in bed--only at the hospital!

Photos

Look at that swollen belly!

Showing off his chipmunk cheeks (Don't tell him that: he was happy!)

Love his sleeping position

Walking is hard work: and he is none too happy about it!

Yeah!  A family visit!

The first drainage tube.  You can also see he now has a outie belly button instead of an innie.

One of the first days in: he HATED having that board on his arm.  He also dislikes the gown.  He hasn't had it back on since he was brought to his room.  I don't blame him.

Thanks again for the prayers.  He is in x-ray right now to check on some things.  Hopefully we'll have good news when we get up there in about a hour.

God bless Gary's mom for taking the night shift.