Wednesday, September 29, 2010

They Came. They Saw. They Nurtured.

My parents and mother-in-law were so wonderful in coming out here to help us out in our weeks of need.  Even at my age, I'm not too old to have my mom pat my back and let me cry on her shoulder.  And my dad is full of good advice and worldly-wisdom.  Just two of his thoughts:

1)  "You choose your own attitude."
2)  "All of the (crap) I've ever stepped in in life has been in a path I chose for myself.  I didn't have anyone else to blame for it."

Me, Dad and Hansel--I think you can tell from whom I got my features.

Mom made several delicious meals.  Here are two:

Spaghetti All'amatriciana

Milanese chicken, potatoes and some kind of Brazilian cheese biscuit that my mom said didn't turn out right, but tasted delicious anyway.
I haven't even mentioned her cinnamon rolls.  There are four in the freezer.  They will be defrosted and consumed before the MoTab even finishes the opening song at the Saturday Morning General Conference Session.
When things went south for R, we called on Lezlie, because when the chips are down, everyone needs their mama.  She was the one who pulled R out of his shell, and I am sure that he recovered a lot faster because of her.  She also kept K and I going.

Angels In America

This morning, I was thinking about guardian angels and ministering angels and where are they and what are they doing.

Well, here are two that I ran into:

One is Theresa Jones, DO, a hospitalist that I know.  Her husband has Crohn's.  I ran into her at the elevators today, and I asked her if her husband has ever been on TPN and what their experience has been.  She said that Brad was on TPN for an entire year in the early 2000's.  She told me that she became a "closet eater" because she felt so bad about eating in front of him.  It was really good to talk to someone who had been through this before.

(Oh, and as a point of information, TPN stands for Total Parenteral Nutrition, meaning that you don't get your nutrients through your digestive tract but get them in liquid form through an IV.  People who do not have enough small intestine to absorb nutrients or have other issues such as severe vomiting in pregnancy can be on TPN.  Rowdy is allowed to take food by mouth, and he's even encouraged to drink liquids as much as he can, but he won't get the nutrients from the food.  So we still can have Thanksgiving.)

The second one is Nicky Barrows, RN, who was able to work things out so that Rowdy can have his TPN pump in a portable case, not on an awkward IV pole.  That's going to help make things less-unwieldy.

Friday, September 24, 2010

Ostomy Couture

What should Rowdy wear while he has an ostomy?

Thursday, September 23, 2010

We Have a Target

The plan is for Rowdy to undergo the "reattachment" surgery in 12 weeks.  So, I will run the half-marathon on December 5th, and he will probably have surgery the following week. 

The surgeon talked to us today and was very positive about things getting put back together, and Rowdy getting back to his old self.  I told him that Rowdy was going to be a BJJ world champion, and even though SuperMario didn't act like he believed it, I do.

Next week will probably see Rowdy back at home, with home health visits every few days to change dressings and deliver IV fluids.  He has a vacuum device over the wound in the middle of his abdomen to promote healing.  That wound should be healed completely in 2-3 weeks.  The ostomy is going to be around for 12 weeks, and the TPN (or IV feeding) will go on every single night until the next surgery also.  He can take things by mouth, but he won't be able to absorb enough nutrition from that to stay healthy.  So, if he wants to eat pumpkin pie or Hot Tamales, he can.  They'll just zoom through his system to the bag.

Clothing is going to be a little problematic.  I keep joking that he will have to wear a muumuu everywhere.  The wound care nurse said, "You'll just have to wear big Hawaiian shirts".  I couldn't keep from laughing at the idea of Rowdy wearing a big Aloha shirt like some fat, old guy.  (No offense, fat old guys.)  It is just not going to happen.

Wednesday, September 22, 2010

Orange Crush Fan Club

Today was a very good day as far as seeing real progress in Rowdy's demeanor as well as his physical condition.  He no longer has a fever or a rapid heart rate or a high white blood cell count.  They're letting him take sips of juice.  He was taking care of all of his ostomy stuff pretty well.

But the best thing was to have his smile and sense of humor totally back. He is back to being all of the nurses' favorite, because he jokes with them and lets them know that he's aware of how stressful their job can be and that he really appreciates them. His nurses have been pretty terrific on this floor.  We're going to have to do something for them to thank them.  He still has issues--who wouldn't--but he was apparently quite feisty with the social worker when she came by to tell him about ostomy support groups and ostomy clothing.  He is not going to put up with that crap for a minute.

He's had a few more visits from friends, and I think that really helps him out, too.  For the first year or so that we lived here, he lamented the lack of good friends and "couples" friends for us.  But now we've gotten a really good circle of wonderful people.  Crash Test Mommy even made him a personalized crossword puzzle and sent it to him in the hospital, with the return address:  Orange Crush Fan Club.  "Orange Crush" is the Brazilian jiujitsu nickname he's been trying to cultivate.  I like it.  I think I'm going to join the club.  You can, too.

Happy day in the park

Tuesday, September 21, 2010

Good and Bad Times

Rowdy had a very hard day yesterday, but is in much better spirits today.  He had his nasogastric tube and his urinary catheter removed, so he's more mobile.  The wound care nurse came by and showed us how to change his ileostomy appliance.  I saw his midline wound.  Not pretty right now.

I went on a little run this morning and didn't eat right after or rehydrate, since I wanted to get showered and dressed quickly and up to the hospital.  So I was not really at my best when I ran into the surgery PA and talked to him about the plan for the reanastomosis.  He told me that it would be "a long time", as in 6 to 10 MONTHS before they would think about going in and reattaching things.  So I was completely a wreck when I went into Rowdy's room and just never got it under control.  A nap, a healthy dinner and a couple of large glasses of water have helped out.  It has also helped that the surgeon meanwhile stopped by to see Rowdy and said that he thinks that everything will be back to normal by Christmas.  That, I can handle.

My friend and ex-SIL, Ginger, reminded me of the days when she was pregnant and so sick that she couldn't keep anything down for months.  So she was on IV feeds from home.  She said in a later FB post that, having remembered that time, she felt so grateful all day long to even just drink a glass of water. 

So today, I'm grateful for the chance to eat and drink, for the nutrition that comes from our foods and the opportunity to be able to taste good things.  I'm grateful for my parents and Rowdy's parents who have come to nurture us during this time and for all of the friends and family who have sent their good wishes and prayers.  I'm grateful to be able to run, and I will be so grateful to be able to get back on my bike tomorrow morning for a good ride.

And I'm grateful for my sweet husband and his ability to be mentally tough.

Monday, September 20, 2010

My Favorite Scripture and Being Cheerful

From the Book of Mormon, Mosiah 24:12 And Alma and his people did not raise their voices to the Lord their God, but did pour out their ahearts to him; and he did know the bthoughts of their hearts.
  13 And it acame to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
  14 And I will also ease the aburdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as bwitnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their cafflictions.
  15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did astrengthen them that they could bear up their bburdens with ease, and they did submit cheerfully and with cpatience to all the will of the Lord.
  16 And it came to pass that so great was their faith and their patience that the voice of the Lord came unto them again, saying: Be of good comfort, for on the morrow I will deliver you out of bondage.
  17 And he said unto Alma: Thou shalt go before this people, and I will go awith thee and deliver this people out of bbondage.
  18 Now it came to pass that Alma and his people in the night-time gathered their flocks together, and also of their grain; yea, even all the night-time were they gathering their flocks together.
  19 And in the morning the Lord caused a adeep sleep to come upon the Lamanites, yea, and all their task-masters were in a profound sleep.
  20 And Alma and his people departed into the wilderness; and when they had traveled all day they pitched their tents in a valley, and they called the valley Alma, because he led their way in the wilderness.
  21 Yea, and in the valley of Alma they poured out their athanks to God because he had been merciful unto them, and eased their bburdens, and had delivered them out of bondage; for they were in bondage, and none could deliver them except it were the Lord their God.
  22 And they gave athanks to God, yea, all their men and all their women and all their children that could speak lifted their voices in the praises of their God. 
Verse 15 is my favorite. " The Lord did strengthen the people to be able to bear their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord." The burdens were still there, but the people could bear them, and they were cheerful and patient.  Eventually, they were delivered from bondage.
That's my goal through the experience that Rowdy and I are going through now, to be patient and cheerful.  I am doing better today than I was earlier.  The burden is being lifted.  Rowdy, however, is struggling.  It's hard for anyone to have to go around with a bag of green gut fludge hanging off of them, but especially hard for someone who is as body-conscious as he is.  He is having a very hard time right now with that and with a long abdominal wound that they have to leave open to heal.  He was blessed to recover quickly, so I am hoping that this will be a six-week experience rather than a ten-week.  I also hope that he recovers his ability to appear upbeat, too. 

Sunday, September 19, 2010

It is the fire that refines

Seems to be our family motto right now. 

For the past couple of years, the thing that I have been most afraid of (other than snakes) is that Rowdy would be severely debilitated by his Crohn's.  So when his surgery last week went so amazingly well, I thought, "Sweet!  This is easy.  We'll sail through this."  But as those things normally go in life, what I think is the way things should go and the way that the Lord thinks they should go are two different things, particularly when it comes to a refining trial.

Rowdy was in the OR for three hours with four surgeons.  He developed some scarring just downstream from the surgery site in his small intestine, and that backed things up.  Since things were backed up, there was a tiny leak in the suture site.  From that tiny leak, Rowdy developed very bad inflammation in his abdomen.  And because he had so much inflammation, the surgeon needed to take apart his surgery site and stick the ends of the small intestine through Rowdy's skin.  It will stay that way until the inflammation has gone away, which will probably be in the next 6-10 weeks.  Until then, he can't eat anything, because he will not have enough small intestine working to take in enough nutrition.  So he will have to be fed through an IV.

As far as connecting things back up then, well, it will either work or it won't.  And then he will either be able to eat again, or he won't.  Thanksgiving and Christmas plans are currently on hold.

One of the things that I love so much about Rowdy is his ability to smile in any situation.  He keeps drifting off to sleep, then waking up and smiling at me.  He took the news of his surgical outcome pretty well, for one thing.  My main concern is that it will be really hard for him psychologically to have the scarring and stomas.  Maybe it will be when he has more time to process it, but for now, it seems like he's ready to move forward with whatever happens. 

"Come what may and love it"?  Well, maybe it's "Come what may and handle it". 

But here's what I know--no matter how daunting the situation, Heavenly Father is there for me. He knows me, and he loves me.   Jesus Christ knows what I am going through because he's been through it before.  The pain doesn't have to be as great because of that.  The Holy Ghost will comfort and guide me. 

The last thing that I had to deal with that was what I thought would be the worst thing in the world ended up giving me the greatest blessings of my life, including my sweet husband.  This is probably going to be a similar experience.  I went through the last one kicking and screaming, and I am going to try to handle this one with more grace and composure.


Rowdy is back in the OR this morning.  His white cell count increased considerably overnight, his fever didn't go down and his abdominal pain became much worse.  His CT didn't really look like there was a significant abscess, but there is obviously some kind of badness brewing in there.  So the surgeon on call decided the best thing was to go back in and look around and fix whatever she thinks needs fixing.

So here I am back in my office, waiting.  I couldn't sit at home anymore.

Saturday, September 18, 2010

So Here I Am

sitting in my office, waiting for Rowdy to have a CT to explain his high fever and high white blood cell count.  My money is on an abscess. 

His recovery up until this afternoon was nothing short of miraculous, but I believe that even this reversal is part of the plan for how this experience is to unfold.  I know he will heal.  I know that he will be able to be "normal" sooner rather than later.  It does hurt to see him so incredibly sick, though.

Tuesday, September 14, 2010


Twenty-four hours later, Rowdy is able to have clear liquids and walk around.  He still has pain, but who wouldn't after having their insides rearranged?  I should have taken a picture.  He looks pretty darn good.

He had bowel sounds when I listened earlier today.  That means his bowel is waking up and starting to move things along.  Still nothing from below yet, but it's still early days.  He gets to come home as soon as that happens.  That might be as early as...

Monday, September 13, 2010

Mission Accomplished

This morning seemed to last three days.  I went for a run and then a bike ride to pass the time.  Rowdy did calisthenics.  He checked in to Pre-Op at 11 am, but didn't get into the OR until closer to 2 pm.  His surgeon called me promptly at 3:30 to say that he was done, and everything went great.

He did the procedure laparoscopically, so no big incisions.  All he needed to remove was the 8 or 9 cm of diseased small bowel.  The rest of his GI tract looked great.  Rowd is projected to stay in the hospital for just three or four days.  When his bowel wakes up, he can come home.

I was able to put on my doctor disguise and go back to Post-Op to see him.  He was dozy and nauseous, with some pain.  That is to be expected, but he didn't believe me when I told him he was going to feel better in the morning.  He's still in the PACU, waiting for a room. 

About 10 minutes after arriving in the PACU.
About an hour post-op

Sunday, September 12, 2010

The Final Countdown

10:32 am.  We're going to the hospital to check in in about 20 minutes.

Saturday, September 11, 2010

Wonderful Weekend So Far

What with his surgery coming up on Monday and my birthday on Tuesday, R arranged for us to stay out at Coronado last night.  We have a wonderful friend who just happens to work for a major hostelry corporation who was able to get us an amazing deal at a resort out there.  Thanks, Amber!!!

We checked in, had some "quality time", then went to dinner at Starlite.  I had watermelon drizzled with balsamic vinegar, a virgin blueberry swizzle (like a blueberry mojito and so good!) and jidori chicken. R had the burger, which looked like the most perfect burger ever made.  Then it was back to the resort for hot tubbing, more "quality time" and sleep. 

This morning, I went for a run around Coronado.  It took me exactly an hour to complete the circuit, which was fun.  Then more hot tubbing, more "quality time" (hey, there just won't be much of that for the next few weeks), then we went back into the city for breakfast, a blood draw for R and the traditional purchase of the "old man" slippers pre-hospital stay.  He has this thing for those corduroy slippers from the drugstore when he is recovering.  Our latest batch of smoked salmon was ready when we returned home.  I think it's the best yet.  I can't wait for my mom to turn it into salmon fettuccine.

Anyway, now I am pleasantly tired and happy.  Lots of good things to look back on during the week to come.  Today is the fifth anniversary of our engagement, which, to be honest, I'd prefer to concentrate on rather than the ninth anniversary of the terrorist attack.  Hope you don't think less of me for doing so.

Wednesday, September 8, 2010

Made By Loving AND Talented Hands At Home

And the winner is...Molly!  I sent her the pictures and my LHAH poster, and she made this digital version.

Annnd...she made it in a ridiculously short period of time the other morning, in between taking her three boys to school, caring for her 2 year old daughter, teaching piano and aerobics and getting her husband off to work.  Molly is the kind of girl you just love to love.

Beautiful, Inside and Out

Three dear  friends, two great causes and one terrific fundraiser:

Fall fundraiser-Now thru Sat., Sept. 11th Linda Young Nielson is hosting a fundraiser for 2 great causes: the Tilsit Orphan Education Fund and Crohn's disease in support of efforts organized by Stephanie Bates Haynes and Diane Dahlstrom Bricco. All Mary Kay orders from now through the weekend will support these 2 causes. 

Now is a great time to stock up on beauty products.  Access Linda's Mary Kay page to get started.

Monday, September 6, 2010

Loving Hands At Home

My mother once went to some kind of crafts/cooking workshop during Education Week.  The instructor said something about something looking like it was made with "loving hands at home", meaning not very skillfully.  So whenever one of us makes something that doesn't turn out looking professional, that's what we say.

I'm trying to make a poster to put in Rowdy's hospital room to help with the fundraising.  We are either going to have tri-fold brochures or business-size cards with the email address to go with it.

This is just the mock-up, but it definitely has a "LLAH" quality to it.  Any suggestions? 

My Rad Life!