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.