Surgery Plans

This will be a quick post as minutes of sleep come few and far between with this teething (and walking!) one year old!

Alex had a follow up appointment to his debridement surgery last week (Thursday). Dr. Devine and Carrie (his PA) think that the wound is healing as well as they expected. He still has a large fistula tract from the wound to his bowel, again, as they expected. The likelihood that the fistula will close on its own is well...not likely. We knew this going into the previous surgery, but with the infection and inflammation that went with it, we weren't sure how large the fistula tract was. I'll spare you the details, but just assure you that we now know that the tract is pretty large and we definitely need to do something to help it. Previously, Dr. Devine was thinking we would just manage the fistula as we do Alex's others (3 or so). It's apparent as the infection calms down that this would be very difficult.

SO...Dr. Devine would like to give Alex another 4-6 weeks for the inflammation to continue to decrease and the infection to continue to calm down. Then we will have some major surgery planned for mid-to-late March. Dr. Devine will resect some of Alex's small bowel (a few inches) including his current stoma where the fistula runs to now. He will then create a new end ileostomy on the other side of his abdomen, open the entire fistula tract and place a wound vac on it to help it heal. He will likely be in the hospital for about 5 days, we'll stick around Rochester for another couple and then return back to KS in time to catch Spring, we hope! We should know a more specific date soon.

Thank you all for your continued prayers. We are so blessed to have so much love and support from each one of you! It truly carries us through the good days and the bad. Love to you all!

Outpatient Surgery

Alex had an outpatient debridement surgery this morning up at Mayo. He is recovering well and we are just waiting to get the "ok" to head back to the hotel. We will follow up with the surgeon and wound care nurses tomorrow morning and likely head back to KC then, depending on how he is feeling. We will know more specifics after that appointment.

The girls are doing great. Lydia was anxious to see Daddy after he went back, but was well-distracted by coloring, her portable DVD player and playing with Claire. She does have something to say...

dye dd;lujjv
[]\hnuavfhupo
;'jklkjhjhnfjju7dhjhghfvhfdfrhfdhuhghjvhjfhjjhhjfffjnfjfjfjkkjfjnmjnnn fjfnjvfjjtgjghujjjhhbjnjnjnmnmhjnnjjnjnm njutjjkhjhhj ncnj.

Interpreted as... "make sure Daddy feels better". :)

The nurse just came in and said he's ready to go! Love you all and will post again as soon as we get back.

Up and Back, Up and Back

Brrrrrrrrr! We have found out the hard way that Minnesota is COLD in January! And December for that matter. Alex has progressively gotten worse since our previous appointment in early November. Let's start there...

At our appointment with Dr. Loftus (GI doctor) in November, Alex was diagnosed with cellulitis and put on some "heavy duty" antibiotics, along with the ones he takes regularly. Despite the increased medication, Alex's infection continued to progress and become very painful. He was in frequent contact with Dr. Loftus and his nurse to keep them updated on his status. They continued to be hopeful that the medication would clear the infection. Late in December, (on Lydia's birthday, actually), a fistula broke through the skin, allowing some of the infection to escape. Whew...relief. Scary relief, but it did provide some pressure relief and intermittent decreases in pain. At that point, we decided it was not a good idea to travel to OK, as planned, for Christmas this year. We scheduled appointments for two days following Christmas including a CT to assess the infection and a consult with Dr. Loftus. We set out for MN on Thursday after celebrating the holiday at home.

The CT confirmed that Alex has 3-4 fluid collections/abscesses and Dr. Loftus agreed that a drain needed to be placed to more effectively drain the infection. A surgical consultation was also "not a bad idea," as Dr. Loftus put it. However, with the holidays, Dr. Devine (the surgeon who is familiar with Alex) was not in the office. As late as it was on the Friday between Christmas and the New Year, our only option for getting a drain placed was admitting to the hospital to get the on-call interventional radiologist to do the job. Read: low man on the totem pole who doesn't typically do these procedures during the week, but is forced to work over the holidays. Dr. Loftus voted for going home with plans to return for a consult with Devine and drain placement at that time with more exprienced IR's.

So...here we are. Alex had a drain placed this morning under CT. Then we met with Dr. Devine and his (rather large) team to discuss our options. This is where nerves of steel come in handy. If anyone has some of those, please send them my way. It felt like a million little men were dancing in my stomach. Then again, maybe that was Claire trying to wriggle her way to the floor to see what was down there to eat. Ewwwww. Will Alex be put in the hospital? Will he have to have major surgery again and we will become temporary residents of this frigid land? Will the kids stay in KC with Nana and Papa, stay here, go to school like usual? And so on...Dr. Devine however, had already reviewed the CT(s) and talked with Dr. Loftus. "I would not recommend major surgery or resection in the case at all," he said as he sat down and his team swarmed into the room. We have two options, he continued. To see if the drain allows the antibiotics to do their job (at an increased dose) and allow the new Crohn's medication Alex started last week to work or to do a debridement of the area where they open the infected area and clean out the infection. This would leave the area open to heal from the inside out. The fistula will likely never heal completely, but this would clear the infection. Then we heard a lot of "It's up to you"'s and "I could go either way"'s before we finally pressed him to tell us that he was leaning a bit more towards surgery. "However, it is more invasive, and I am certainly not opposed to seeing if the drain and medication can also do their job." So, it was up to us. After meeting again with Dr. Loftus (who clearly leans more toward the drain/medication option), we decided to meet somewhere in the middle. We will return to Antarctica, errr, Rochester, in about a week and a half after Alex's second dose of Remicaid, giving a bit of time for the drain to do its job and maximize the potent antibiotic regimin that he's already on. If at that point, Alex is not feeling significantly better and an additional CT does not show improvement, we will schedule the surgery during that visit. Dr. Devine will then open the abscess to clear the infection surgically. It would be an overnight stay following the surgery for observation, and then we would return home.

Well, it feels good to have a plan. It feels even better to know that major surgery with more bowel lost is not involved in said plan. Alex's appetite improved with his first dose of Remicade and he has resumed eating like a horse when he feels like it, and sleeping when he doesn't. :) He's finishing off his Cinnabon as I type. Which is not Paleo, by the way, but is preeeeetty calorie-dense. It's a delicate balance!

Thank you all for your continued prayers and support. So many of you have offered to help by watching the girls, bringing meal or offering prayers. We are so very blessed to have such loving and supportive friends and family and even an addendum to this novel would not adequately cover how much we appreciate each of you. We are so blessed and God is so very good.

Mayo Visit

There were many thoughts going through my head as I woke up at 6 AM to get my blood tested at the Mayo Clinic. The most dominant though was, would all the sacrifices I’ve made for the last two months be for nothing? I would get the results at my appointment with my doctor at 2 but first I had to get my blood drawn and then off to get scoped from multiple directions. To be honest I was anxious sitting in the lobby waiting to see my doctor. Finally, my pager went off and I was ready to hear the news. I know that I had been feeling better and that my energy had increased to levels that I haven’t experienced in years but somehow the results coming from the blood test meant more than how I felt. I guess it was a desire for them to reflect how great I felt.

 

Dr. Loftus starts going over my blood markers, saying everything looks normal but then he gets to my CRP (c-reactive protein) which measures the level of inflammation in your body…and says that it is in the normal range as well. This is the first time that it has been normal since 2006 when I was diagnosed. That is a huge deal. I’ve been taking the same medicine and the same dose but now it changed. What had I done to make the change, you might ask? The only logical explanation in my mind and the only change that I’ve made is switching to the Paleo diet. Dr. Loftus wasn’t going to say that it was the sole reason that my CRP changed but admitted that it might have been a tipping point that helped the medicine work better. All in all he said it was a mixed bag because the Crohns is still active to a mild degree in my small intestine but the blood markers were very encouraging!

 

Gena and I were elated that only after eating Paleo for 2 months and doing it 80% of the time was already paying dividends. I would have been devastated if nothing had changed. Without Gena doing this with me and making it a lifestyle change for our family I don’t think it would have been possible. This last weekend, Claire was baptized and we even managed to feed everyone on a Paleo diet with the exception of some burrito shells that some had for their fajitas. Here are some of Gena’s favorite recipes from the weekend.

 

http://www.againstallgrain.com/2012/03/28/banana-muffins-with-chocolate-chip-streusel-topping/

 

http://paleomg.com/breakfast-bacon-maple-meatballs/

 

Blessings,

Alex

Crohns and Paleo : How being on the Paleo diet has affected my symptoms

In this entry I am going to talk about how the Paleo diet has affected my Crohns symptoms from an all-encompassing perspective from stomach pain, intestinal blockage and stoma output just to name a few. Just wanted to throw that out there. In my next post I’ll put some more food recipes but didn’t want to mix the two.

Before starting the Paleo diet the symptoms from Crohns that I experienced where fatigue, cramping in my abdomen, the occasional intestinal blockage and uncontrollable stoma output at times which led to a high probability of me being easily irritated. I’m absolutely sure there are more symptoms that are escaping me right now but those are the ones that affected me the most. Gena might think otherwise… I’ll attack the symptoms one by one in efforts to shed light on how the Paleo diet has affected each one.

Fatigue – I touched on this one in a previous post. I was a pretty sedentary person even before winter and haven’t done much in the way of exercise except golfing and walking. I couldn’t mow our whole yard in one day without feeling woefully tired and needing a nap. Not just a cat nap but a big boy nap. Three weeks into the Paleo diet and I had the energy to not only mow the lawn, trim the ornamental grass ( we have 5 big clumps) and rose bush and go to a birthday party at Monkey Bizness. I had no problem chasing Lydia up and down the inflatables and through mesh mazes. I was completely surprised and a little sore the next day. If you would have asked me that morning if I could have done all those things consecutively in one day I would have thought you were crazy.

Cramping – Abdomen cramping has stopped completely. I don’t know what to attribute this too but know it isn’t a reflection of my hydration level because I still occasionally get cramps in my legs and toes at night because of lack of hydration. I’ve been trying to counteract them by drinking coconut water and rubbing magnesium gel on my legs when they happen. Maybe the Paleo diet has helped increase my nutrient levels or maybe the cramping was due to a sensitivity to gluten. Questions to be asked when I am up in Mayo.

Intestinal blockages (YAY?) – Out of all the symptoms this one is the one that I am most happy about that I haven’t experienced in a month. The doubling over in pain because something won’t pass through your intestine is probably one of the most horrific things someone can experience. In my case it sends me spiraling out of control, confined to my bed for two sometimes three days and missing work, significant weight loss of 10-15 and everything even the simplest thing is physically and emotionally exhausting. Since doing Paleo for a month I have tried a couple things out of bravery that I knew use to cause blockage and clogging but I was able to let out a huge sigh of relief when they gave me no problems. I completely attribute this to the diet because nothing else has changed in my life. The only variable has been what I consume. I still have a list of no-no’s that I wouldn’t even attempt but am glad the list isn’t as vast as it once was due to the Paleo diet.

Stoma output – If you don’t like to talk about pooh you should probably stop reading now! My stoma output has greatly reduced and gained more consistency since the Paleo diet. The trips to the bathroom have been reduced by almost in half and I’m digesting my food better (when you have a stoma you can see everything). It’s amazing how your diet directly effects your output, if I slip up and eat like I was two months ago the first place I notice it is in my stoma output.


Hope this reaches someone so they can see how the Paleo diet has impacted my Crohns disease.

Stay blessed,

Alex

Full-Speed Ahead

If someone would have told me that I would have mowed and edged our yard in the same day a month ago, I don’t know if I would have believed them. Then added that I also cut down the ornamental grasses, trimmed the rosebush and still had more than enough energy to chase Lydia around Monkey Bizness for a birthday party. I most definitely would have called you crazy. This Sunday I did all of these things and still had energy at the end of the day. What a significant difference our new lifestyle has had on my overall health. It makes me wonder at times when I fight this internal battle to give in but ultimately most of the time I reflect on how great I feel and want that to continue.


This weekend we tried numerous new recipes. The key for us is that we signed up for e-meals, paleo dinner plan, which has given us new ideas and takes the guessing out of what’s for dinner. It is also very helpful because every week it gives you your shopping list at the grocery store. I try to sprinkle in little treats here and there from the web (mostly from paleomg.com or civilizedcavemancooking.com). Today we are exactly one month away from my Mayo appointments. Here are some of our favorites from the week.


Huevos Rancheros (we used hot Italian sausage instead of chorizo)
2 tablespoons olive oil, divided
1 lb raw chorizo, casing removed
12 large eggs, lightly beaten
½ teaspoon kosher salt
½ teaspoon pepper
¼ cup chopped fresh cilantro

Heat 1 tablespoon oil in a large nonstick skillet over medium-high heat. Add chorizo to pan. Cook 8 minutes or until done, stirring occasionally. Transfer to a paper towel-lined pan. Heat remaining 1 tablespoon oil in pan over medium heat. Add eggs, salt and pepper to pan. Cook 4 minutes, stirring gently, or until just set. Stir in cilantro. Serve eggs over chorizo.

Shrimp Scampi
2 tablespoons extra virgin olive oil
15 lb large shrimp, peeled and deveined
2 teaspoons minced garlic
1/2 cup white wine
Zest and juice of 1 large lemon
¼ cup minced green onion
3 tablespoons minced chives
½ teaspoon kosher salt
½ teaspoon black pepper
½ teaspoon crushed red pepper flakes

Heat oil in a large nonstick skillet over medium heat. Add shrimp and garlic to pan. Cook 3 minutes. Add wine, lemon zest and lemon juice. Cook 1 minute. Stir in onion, chives, salt, black pepper and red pepper flakes.

Gena really liked the following recipe.

Wilted Spinach with Pine Nuts
1 tablespoon extra virgin olive oil
1 small onion, minced
2 (5 oz) bags baby spinach
½ cup pine nuts
½ teaspoon kosher salt
½ teaspoon pepper

Heat oil in a large skillet over medium heat. Add onion; saute 4 minutes or until slightly softened. Add spinach and pine nuts. Saute 5 minutes or until spinach is wilted. Stir in salt and pepper.


On Saturday as a treat I made these banana pancakes from Paleomg.com. They were delicious. Lydia couldn’t get enough!

http://paleomg.com/hearty-banana-granola-pancakes/

I can’t tell you how much the Paleo diet is changing my lifestyle, day by day I am feeling a difference. My crohn's feels under control and isn't dictating my life as much as it has in the past.

Blessings,
Alex

Temptations

Temptation lurks around every corner when you are doing the Paleo diet. I’ve realized that no matter where we are soda and bread are everywhere. They are strategically placed throughout the store to get you to buy it. This weekend at the Royals game I totally would have ate the bun on my dog if it hadn’t fallen apart and I did scarf down the Fritos like a mad man even though I don't ever recall enjoying them. I still avoided soda though. In fact the last soda I had was on Easter but I’ll admit I want to have one when I see it on a billboard, sign or when someone else is drinking one.


I did okay on Sunday which was Gena’s birthday. We like the way one of our friends expressed how he does Paleo/Primal and that is by the 80/20 rule. This means that 80% of the time you eat Paleo and 20% of the time you let things slide. I’m only saying this because on Sunday I used the 20% for the hash browns at breakfast, the tortillas for fajitas at dinner and the Italian birthday cake.

Here is one of the testomonials that really spoke to me. Maybe it will speak to you the same way if you are experiencing Crohns too.
http://robbwolf.com/2013/02/11/healing-chrohns-disease-feel-absolutely-normal-time-10-years/

We made some pretty good recipes this weekend that were super easy and tasted really good. The below are two of my favorites. T-4 days until I can tell you how our first brew of kombucha taste!

Chicken and Kale Soup
2 tablespoons olive oil
4 boneless, skinless chicken breasts
1/2 teaspoon kosher salt
1/2 teaspoon pepper
2 (14-oz) cans organic chicken broth
1 cup white wine
1 large onion, cut into 1-inch pieces
1 tablespoon minced garlic
1 bay leaf
1 bunch kale, trimmed and cut into 1-inch pieces
1/4 cup chopped fresh parsley

Heat oil in a large nonstick skillet over medium-high heat. Sprinkle chicken breasts with salt
and pepper. Add chicken to skillet; cook 3 minutes per side or until browned. Transfer to a
5- to 7-quart slow cooker. Stir in broth, wine, onion, garlic and bay leaf. Cover and cook on
low heat 5 hours. Stir in kale and parsley. Cook an additional 1 hour. Shred chicken with 2 forks
before serving.

We even experimented with making our first Paleo cracker and they were good too!

Almond Flax Crackers

1 cup almond meal (or almond flour)
2 tablespoons ground flaxseed meal
3 tablespoons extra virgin olive oil
2 large eggs, lightly beaten
1 teaspoon baking powder
½ teaspoon kosher salt

Preheat oven to 350 degrees. Combine almond and flaxseed meals in a medium bowl. Stir in
oil, eggs, baking powder and salt until well blended. Roll dough into an 8 x 10-inch rectangle on a large baking sheet lightly sprinkle with almond meal. Use a knife to score dough into 12 equal crackers, marking the surface of the dough without cutting through completely. Bake 15 to 20 minutes or until slightly browned. Cool on baking sheet 5 to 10 minutes or until crisp. Break into crackers.



Whole Grain Dijon Salmon

6 (6-oz) salmon fillets
2 tablespoons whole grain or regular Dijon mustard
1 tablespoon olive oil
1/2 teaspoon kosher salt
1/2 teaspoon pepper

Preheat broiler. Brush salmon with mustard.Place on a baking sheet rubbed with oil.
Sprinkle with salt and pepper. Broil 6 to 8 minutes or until fish flakes easily with a fork.


Quick Sauteed Swiss Chard

2 bunches Swiss chard, cleaned and trimmed
3 tablespoons olive oil
2 teaspoons minced garlic
½ teaspoon kosher salt
½ teaspoon pepper

Coarsely chop chard into 1-inch pieces. Heat oil in a large saucepan over medium-high heat.
Add garlic and chard to pan. Saute 5 minutes or just until chard wilts. Stir in salt and pepper.


Even Lydia liked these. One thing that I can say is that we are learning about new veggies and enjoying it. It is good to cook in abundance with meals while doing Paleo so you always have leftovers. An easy way to trip up is if you need something quick but don’t have anything on hand. I’ve learned this from experiences that we’ve had. It’s a lot easier to through a pizza in the oven than cook. To combat this we’ve stalked up on dried fruit, nuts and jerky for snacks.

Gena and I went and saw 42 last night. It was phenomenal. I highly recommend it even to those who are not fans of baseball. My one and only slip-up was the popcorn at the movie theatre. Typically I can’t digest it and it gives me problems but I haven’t experienced that yet so it makes me believe that the diet is working and healing my gut! This has me excited!

As far as my health, I am feeling better with more energy. My fatigue is not as much now and am able to stay up later than 9:30 which I’m sure Gena enjoys!

Alex

“Most people will not reach their potential without somebody else believing in them. Is there someone you can encourage today?” ~ Joel Osteen

Paleo and Crohn’s

So it has been a while since we have updated the blog. Actually I have never updated it , not even once. I might have conveyed some thoughts to Gena but it has been all her. Recently we’ve been researching and trying to implement the paleo diet into our lives as there are numerous testimonials on how it has helped those with some kind of IBD or auto immune disease. It initially started by me giving up any type of restaurant that had a drive thru and committing to eating 3 to 4 paleo meals during lent. Since lent I have also given up soda although with any old habit it is hard to kick. I admit that I do slip up and drink a soda every now and then but I’m no longer pounding a 32 oz back every day. The increase in energy, mental focus and the way my gut reacted convinced us that as a family we needed to do this all the time for not only my health but everyone’s. Hopefully when we go to Mayo at the end of May we will be able to see the results of how our new lifestyle has impacted our lifes.


My goal is to impact someone else’s life who has Crohn’s or any other disease through showing them my struggles and how I try to overcome them. I’m going to share how I am feeling, what I am eating and a bunch of other things hopefully if the idea in my head comes to fruition. Hopefully I can also put some pictures and recipe’s of the food we make to show everyone that eating paleo is very doable.

Last night we made curried skirt steak w/ creamy mashed carrots and it was absolutely delicious. Who would have known that carrots could taste that good!



Curried Skirt Steak
2 tablespoons extra virgin olive oil
1 tablespoon curry powder
1 teaspoon kosher salt
.5 teaspoon pepper
.5 teaspoon minced garlic
2 lb beef skirt steak

Preheat broiler. Combine oil, curry powder, salt,
pepper and garlic in a small bowl. Rub mixture
evenly over both sides of steak. Place on a
roasting rack in a pan. Broil 4 to 5 minutes per
side or until desired degree of doneness. Let
stand 5 minutes before slicing thinly across the
grain.

---------------------------------------------------------------

Creamy Mashed Carrots
1 lb carrots, peeled and chopped
14 oz can coconut milk
1 teaspoon kosher salt
½ teaspoon pepper

Place carrots in a large saucepan; cover with
water. Bring to a boil; cook 18 minutes or until
tender. Drain and return to pot over medium
heat; add coconut milk, salt and pepper. Mash
with a potato masher until creamy and heated
through.


We have even started to brew kombucha. Here is our first attempt of blueberry-pomegranate kombucha.

Alex

Happy Birthday!

Today is Alex's 30th birthday! He is feeling better and better everyday and is definitely gaining his appetite back! We travelled to Oklahoma on Thursday to bring Nonni (my mom/Donita) home and go to Robbi and Jack's baby shower (my sister-in-law and her first baby, due in September). We had a big birthday dinner with the family on Friday night and then Alex and I went on a "date night" to our favorite Italian restaurant for his birthday last night. It was yummy and we were so glad that Alex was able to enjoy eating once again.

We met with Dr. Loftus for well over an hour on Monday, discussing his history and treatment options for the future. On Tuesday, Dr. Devine said he was VERY pleased with how well Alex is healing after surgery. We talked with him a bit about his expectations regarding weight gain and then were back over the meet with Dr. Loftus regarding some concerning bloodwork from the day before. Alex's liver enzymes are elevated, which could be from residual inflammation in his biliary duct around where his ulcer is located in the duodenum OR it could be a result of Tylenol use, medications and dehydration. After some further testing (ultrasound), Dr. Loftus determined that it was difficult to tell which was the culprit. His biliary duct is slightly dilated/more open than when they measured it in the hospital, but not by much. There was no obvious obstruction, so he wants Alex to get frequent bloodwork, stop taking Tylenol and one of his medications and see how his labs look in the next few weeks. If that takes care of the problem, we won't need to return to MN until around early November. If the bloodwork is still of concern, we may need to return in the next few weeks.

Alex is having a great birthday so far. We ate at his favorite breakfast joint, First Watch, this morning after church. Lydia has given him an extra dose of birthday "muah's" (kisses) all day. He is taking advantage of Lydia's naptime with a little birthday nap of his own. ;) We will be coming back to KC tomorrow and plan on staying put for a while! It will be so nice to be home! Alex plans on starting back at work in a couple of weeks. I know he looks forward to getting back into the swing of things.

So sorry again for the gap in updates! We hope to have more good news to come as Alex continues to heal and recover.

Love and blessings to you all!

Halfway Home

Alex was discharged from the hospital on Thursday and continues to do very well! He has certain times of the day where he is more tired than others, but is gaining strength back more and more every day. We are at Grandma and Grandpa Hendrickson's house in Iowa to spend a couple of days resting. We decided that it would be much more comfortable to be around family, but still not too far away from Rochester just in case something comes up. We will be returning home on Tuesday for a few days, then it is back up to Rochester for follow up appointments with Dr. Loftus and Dr. Devine the next week.

Short update, just wanted to let you all know we are almost home!!!!

Love to you all :)

To Do: Eat, Eat and Eat

First bites! YUMMMMMM!

Sorry it has taken so long to write an update, but we have been busy bees around here! Alex is doing GREAT! He is up most of the day either walking or sitting in his chair. They removed his NG tube on the 4th and he tolerated his own secretions very well throughout the day and night. Yesterday, he started with clear liquids and was on a full liquid diet and did great with his Frosty and oatmeal. The doctors were just in this morning and changed him to a regular diet for breakfast this morning! Yea! They want him to eat, eat and eat today to see how his body is able to handle digestion through his new connection. The doctors anticipate that if he does well with the food today, they will discontinue the TPN and he may be discharged tomorrow!

God is so good...he has provided just what we asked for....NO nausea and very well-controlled pain. I wish I could find the words that would adequately express the immense feelings of gratitude we have for all of the love and support that has surrounded Alex. Thank you again to our prayer warriors across the country.

Love, hugs and kisses to all of you! Below are just some fun pictures of Alex and Lydia. :)

Puzzle, Lydia after "tubbie" and bed head!

Little Miss Visits Daddy

Lydia came by for a quick visit yesterday, but was fast asleep by the time she got up to the room. She was SO excited when she woke up and saw Daddy right next to her! Below are some pictures of her signing his Mayo Clinic pillow (which happened to include her shirt, unfortunately!) and giving it to Daddy.

Dr. Devine was in this morning and was very pleased with the way his incision appears to be healing. They are planning to clamp his NG tube (that is currently draining his stomach) tomorrow. Depending how he tolerates that, they will decide whether he is ready to start on some liquids and may even remove the tube then as well.

Alex continues to feel pretty good. He is starting to get very hungry and is really looking forward to being able to drink some tomorrow.

More later...I am being sent on a paper run :). Love to you all...

GAR

These Socks are Made for Walkin'...& That's Just What They'll Do...

Alex is doing great this morning! He had oxygen and several other tubes removed this morning before he went on his first walk. He did great, walking at least 200 yards round trip!





Now he is sitting in his chair reading the newspaper!

Lydia should be up with Carol and Brett any minute now, so hopefully I can add some pictures of them as well. Dr. Devine and his team came by this morning to check on him. Everything is going very well. His pain is well-controlled with his IV pain medications. He will switch back to oral meds once he starts drinking liquids again on Sunday or Monday. Dr. Devine just reiterated that we are going to "take it very slow"...which sounds like a great idea!

"Devine" Intervention

Just spoke with Dr. Devine....everything went great! He was able to get through the adhesions from previous surgeries fairly easily and did not see anything unexpected. He actually said from a Crohn's standpoint, he looked pretty good other than the one area in the duodenum! He did perform 4 stricturoplasties on 4 areas of small bowel that were significantly narrowed. This is where he cuts the area and stitches it back together so it is open widely for material to pass through. Dr. Devine said the surgery would have been much shorter had it not been for that part of the surgery.

Dr. Devine also said we would be taking things very slowly for the next few days. He will stay on his TPN, waiting until Sunday or Monday to try liquids for the first time. This is when he may start to get nauseated, depending on how he tolerates the liquids passing through the new anastomosis (connection). From there they will just slowly increase his diet until he is tolerating soft solids well. At this point, they will decide if he is able to stop the TPN and get enough of his nutrition orally.

Prayer requests now include LOTS of praise for a successful surgery!!! Also, quick and thorough healing, management of any pain, and (heck, let's go for it...) NO nausea. Thank you so much to all of Alex's prayer warriors out there. You are all so dear to us and essential to Alex's healing!

Out of Surgery

Alex went into surgery @ about 3:30 this afternoon (much later than we anticipated). They let me go into pre-op with him while they prepped him for surgery. We got to talk with the anesthesiologists (there were several) and nurses that would be in the room with him. We were also able to say a prayer for both Alex and the surgical team right before they wheeled him out of pre-op. They gave him some anesthesia before he went into the OR so they could do his "Spinal", which will control pain post-op.

He was brought to recovery @ 6:30. They said he would be in recovery for about 2 hours, so I am expecting him back up in the room in another 30-45 minutes. I got one update at about 5:15 from the "communicating nurse" (Sarah) that just said the doctor reported that all was going well and that Dr. Devine was proceeding as planned. Sarah said that hearing less is more from Dr. Devine...that he typically only sends lots of updates out if there are unplanned events. If we don't hear much, that we should assume that all is going great and things are going as planned.

More to come after I speak with the Dr...

It is Well...

We are still waiting for Alex to go into surgery. According to Dr. Devine's nurse practitioner, his first surgical case is taking more time than originally anticipated.

Yesterday, as I was leaving the hospital, the song "It is Well with My Soul" was playing on the radio. Peace surrounded my heart as I listened. The whole hymn is a great one, but these beginning words seemed to resonate the most-

"When peace, like a river, attendeth my way
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul"
...
"...though trials should come,
Let this blessed assurance control,
That Christ has regarded my helpless estate,
And hath shed his own blood for my soul."

Here's one version by Chris Rice...
http://www.youtube.com/watch?v=cPPSG_SpojY

What a great hymn. We have an awesome small group at our church and one of the ladies who is a part of that group is a singer with a beautiful voice. She sang "Give me Jesus" at our last meeting as a prayer for Alex and I. It was awesome. As I listened to this song yesterday, I couldn't help but hear her voice singing as if she was right there with us. Thank you, Vernia.

Thank you again for all of your prayers. Maybe we should add strength, focus and discernment for Dr. Devine and his team since it sounds like Alex will be following an unanticipatedly complicated case.

We will keep you updated as to when he heads into surgery.
Love to you all!

Surgery

Well, about two seconds after the last post went up, the GI doc came in to go over Alex's EGD. The ulceration in his duodenum is severe with patchy ulceration throughout the second portion of his duodenum (again, the first part of his small intestines). We had a long conversation about our options, which really just boil down to surgery. Medications along with strict NPO (nothing by mouth) and TPN was our only other option, but the likelihood of the ulcerations sufficiently healing along with the increased infection risk from all the medications (steroids) make for a risky, and therefore not good, second option.

Alex is scheduled for diversion surgery tomorrow morning with Dr. Devine and Dr. Erben. They will be attaching his jejunum (just below his duodenum) to another place on his stomach. This will allow things to bypass the area of inflammation/stenosis all together. While he is in surgery already, they will also attempt "stricturoplasty" on the strictures that Cleveland and Alex's KC GI doctor have been dilating endoscopically. They have been requiring dilation approximately every 6 wks, so this part of the surgery would allow those places in his small bowel to stay open without continual repetitive dilations. Here's the picture the surgeon drew for us regarding the diversion part of the surgery...

So, now to look for the blessings in all of this...Alex's surgeon, Dr. Devine, is an extremely talented surgeon, specializing in these types of surgeries for people with severe inflammatory bowel disease. He is not a man of many words, but he does seem to be very thorough. Our nurse's mother had surgery with him and she said over and over again that he was "the best of the best". The surgeons have very clearly communicated that this surgery is not without major risk. The duodenum is behind the rest of your small bowel, resting just over the spine. It is not "free-floating" like the rest of the small intestine, either. Alex has had multiple abdominal surgeries, so scar tissue and adhesions could make it difficult to get into the abdominal cavity in the first place. The duodenum is also where all of your bile, pancreatic and other "digestive juices" are dumped, so they will have to be very careful not to disturb all of those ducts (another reason they are diverting and not just removing the duodenum). Finally, healing could be difficult due to the immunosuppressive nature of the medications he has been taking for quite some time now.

Alex is overall doing pretty well. He knows this is what is necessary for him to get better and get back to living. I had a great time recalling Wooderson quotes (Dazed and Confused, circa early '90's) with Alex while he was in recovery from a procedure today. Here was his favorite...

"You just gotta keep livin' man...L-I-V-I-N". :) :) :)

Not quite as profound as scripture, but it definitely made him giggle (more than once) today.

Surgeon was just in. Alex will be the second case in the morning. We will transfer to Methodist hospital for the surgery (still Mayo) with surgery starting somewhere are 10am-12. Dr. Devine said it would probably take between 2-3 hours.

Thank you all for your prayers. Specific prayer requests are...
1. Successful surgery with as little intestine involved as possible.
2. Wisdom and guidance for the surgeons.
3. Calm, peace and faith as he goes into surgery tomorrow.

Sweet tea and Milk

Alex started his TPN here at the hospital last night. They allowed us to use our home TPN the night before since the "TPN team" was gone by the time we got up to our room. Mayo separates the lipids from the rest of the TPN like Cleveland did. However, they added iron to it this time. So...it ends up looking a lot like tea (sweet, of course!) and milk rather than Gatorade and Crisco ;).

The colorectal surgeons and GI doctors were both in and out yesterday. The surgeons were in first to get history, past surgical reports/records and discuss potential surgical options. Then the GI doctor, Dr. Alexander (great name, huh?), was in to discuss the overall treatment plan. He was very nice and helpful, discussing "one step at a time" treatment options, which is much less overwhelming. Dr. Alexander said his role is really to address Alex's current needs of resolving the obstruction. He stated that Dr. Loftus has more experience with the long-term treatment options, so he will be determining the future treatment plan with us on an outpatient basis (as previously planned).

Dr. Loftus and Dr. Alexander went over Alex's case yesterday and came up with this plan together-Dr. Alexander will be doing an EGD (esophagogastroduodenoscopy...you can see why they abbreviate!) this morning to assess how his stomach and duodenum look after they drained or "decompressed" with the NG tube and treated with several rounds of IV antacid medications. He will be assessing if the obstructed area is inflammation from the ulcer, a stricture or both. From there he can determine what we should do to correct it (meds, dilation, surgery or a combination). We really have no way of knowing how long Alex will be in the hospital until we know more from the endoscopy.

Again, thank you all for your prayers. I think Alex will feel better once there is a concrete plan in the works. Please continue to pray for the previous requests-Peace, calm and comfort for Alex and wisdom and guidance for the doctors. All of the doctors have been great about giving us time to ask questions and voice concerns about potential treatment plans. It is such a blessing to have providers who listen well and explain treatments thoroughly.

Love to you all...

Mayo

We took Alex to the Mayo ER yesterday afternoon since we were not yet able to move his appointment to an earlier date. We drove up to Grandma and Grandpa Hendrickson's in Iowa on Sunday evening and then on up to Rochester that next day. Alex was admitted after some bloodwork, a CT scan and 8 hours of sitting in the ER.

Basically, we found out that the inflammation in his duodenum is not allowing much, if anything, to pass through and his stomach was therefore stretching out (distending) to a VERY abnormal size...VERY abnormal. The doc showed us the CT images and it easily took up 3 quarters of his abdomen. He said it was the largest stomach he had ever seen. So they placed an NG tube (tube through nose to tummy) to drain all of the excess fluid/residue that was not able to otherwise pass. Alex was not very excited about this, but it was absolutely necessary. He has had an NG tube in the past, but was not awake when they placed it. He got through it and I think feels much better now that there has been LOTS of fluid drained out of his tummy. The GI doctors will be in this morning to help come up with a plan for the area of obstruction.

Meanwhile, Lydia seems to be having a fantastic time on her Minnesota vaca with Nana. They went on the BUS to Walmart (fun!), played in the sand, saw ducks, went on walks, etc, etc, etc yesterday. She got a new bib that says "I'm a hoot!" with a picture of an owl :) :) :) "Owl" is her new favorite word and she's a little obsessed with birds in general (all of which she calls "owls" now), so it was very fitting! We are staying in an apartment that is just a couple of miles from the hospital. It has 2 bedrooms, a full kitchen and plenty of room for her to explore. It has been tremendously helpful to have Carol here to watch her while Alex and I are at the hospital!

Our only prayer requests right now are peace, calm and decreased anxiety for Alex and wisdom and guidance for the doctors who will decide on next treatment steps. Oh...and Alex's room number...316 :). A nice reminder of a favorite verse :).

Thank you all for your continued prayers and support. We should know more by the middle-end of the day today. Love to you all...

Good News/Bad News

Good news...We found out last week that Alex has had an appointment scheduled with Dr. Loftus @ Mayo since June 8th! The bad news...that appointment is for July 18th. Alex simply cannot wait another month to be seen. So, we have since been in the process of trying to get that appointment moved up to a sooner date. Alex's GI doctor and primary care doctor have both called, letters have been mailed, and faxes of records have been sent. Dr. Loftus has been out of the clinic for awhile and is returning tomorrow (Wednesday), so we REALLY would like to ask specifically for your prayers that he will receive all of this information and be able to move Alex's appointment up to a closer date.

Alex is tolerating his TPN very well, and has even had it changed to where it runs for only 14 hours now instead of 18. If his labs from today check out okay, they may move him down to a 12 hour cycle on Thursday. He continues to have trouble tolerating food. He was discharged from the hospital with a regular diet and has been taking it very slow on eating. He eats about one small snack/meal a day. He is trying to stick with the "white" things that the doctor suggested-white potatoes, white bread, white rice, cereals, etc. You know...all of those things that the rest of us are trying to avoid in an effort to be "healthy" ;). He definitely cannot have any "whole grain" breads, fruits or veggies as they are just too hard to digest. His difficulty digesting even these small snacks indicates that he is still having too much inflammation to pass food through his digestive tract efficiently. As far as we know now, the most severe inflammation is in the very first part of the small intestine where it meets the stomach (the duodenum). This is where the most recent endoscopy and the upper GI test showed the newest and most significant areas of inflammation and ulceration.

So...specific prayer requests for tonight are...
1. Decreased swelling, increased nutrition, and overall healing of Alex's body, spirit and mind. He is so strong and fighting so hard, but I know all of this takes much more than just a physical toll on him.
2. That Dr. Loftus will quickly be able to review all of the information and understand the urgency and importance of squeezing Alex into an earlier appointment time.
3. Confidence, trust and peace that God is in control...keeping fear, worry and anxiety at bay.

Thank you all so much for your continued support. Love to you all!