Friday, July 18, 2014

Mayo June and July Trips

Hi All,

Just a little update on my last two trips to Mayo.

At the end of June we went up to Mayo to see my doctors due to my Crohn's flaring up after surgery. The main reason for discussion was a spot around my stoma with my colorectal surgeon and to discuss possible treatment options with my GI doctor due to the belief that Remicade was not working. I felt horrible leading up to this trip but a mini-vacation to Colorado helped to relieve some of this. My GI put me on a prednisone taper to help relieve the symptoms which it did. For three weeks I've wanted to eat everything in sight but most importantly have felt a lot better and had increased energy. Gena might say that prednisone makes me a little moody at times :) .We scheduled appointments for July 17th to establish a baseline of where my Crohn's is after the surgery and to see if Remicade was working still.

We returned home from Mayo late last night. I was encouraged by our appointment with my GI doctor. Definitely areas that need to be looked at our getting my body to absorb more iron and to try to increase my albumin. We decided together to pursue a different treatment plan which Gena and I expected going up there. We are switching to ENTYVIO (vedolizumab)which targets another source of inflammation in the gut. Thank you all for keeping us in your prayers.


Wednesday, March 19, 2014

So Long, Farewell Room 6-218!

Alex is getting discharged from the hospital...TODAY! He had his wound vac dressing changed this morning and was able to tolerate it with just oral pain medications before the change. He has been tolerating solid foods without nausea and the wound vac change this morning sealed the deal. We will stay the night in Rochester tonight and head back home tomorrow morning!

Alex has been so well taken care of here at Mayo. We owe an enormous thank you to his excellent team of surgeons, acupuncturist, residents, nurses and other doctors. We also could not have come this far without the tremendous support of our awesome family. Between Alex's parents and my dad, we were able to have the girls up here with us and still both be at the hospital as much as necessary. They have been able to visit Daddy a couple of times to give hugs and kisses and then go back to the apartment to play and still be close by. We also know that recovery would not have been as successful without all of the support, prayers and kind words from other family and all of our close friends. Thank you so much for all each of you have added to the journey and supporting our family in numerous ways.

Please continue to pray for health and healing for Alex. We will be back in about a month to follow up with Alex's GI doctor to make sure that his Crohn's is managed medically as effectively as possible from this point on. It will be another 6-8 weeks before he will be able to pick up Claire (or anything over a few pounds). That will likely be hard on both of them, but hopefully the time will pass quickly. Until then, we'll settle for snuggles eventually and lots of kisses for now. Thank you all again for everything. We love you all very much!

Saturday, March 15, 2014

True Divine Intervention

To say Alex is "doing great!" would be an enourmous understatement. He truly has been pain-free and has been able to walk the halls several times. Consequently, he's been unhooked from all of his 'attachments' other than the wound vac. ALL of the credit must go to our many prayer warriers...and to say thank you alone seems somewhat insufficient. So-THANK YOU, THANK YOU, THANK YOU...for all of your loving kindness, thoughtful and kind words. Thank you for being our constant intercessors to "be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let (our) requests be made known to God."

Alex is sleeping, and I settled into the computer to write this blog bost and to complete some online courses for continuing education I started yesterday. I saw a young lady walking down the hall on my way in and saw her walk by our room-alone, twice. Each time, I clearly heard God say, "go walk with her!". Now...I don't know about you, but I don't "hear" God talk to me directly very often. You'd think I'd learn to listen. A million reasons not to ran through my mind-she is probably enjoying her time alone, not being bothered by nurses or doctors or lab techs...she may not be feeling like making polite small-talk with a stranger...I'm sure she's almost back to her room anyway. Man, I'm stubborn sometimes (ok-all the time). Reluctantly, I put the computer down and caught her in the hallway, asking if she wanted someone to walk with her. She said, "No, I'm just waiting for the IV nurse to come by and thought I'd walk in the meantime." Ugh....I knew it. Still, she turned and walked with me a bit. So I asked her where she was from and she told me she lived in North Carolina. I told her we were from Kansas City, so I knew how hard it was to be so far from home. A lady walking by turned abruptly and said "Hey! Did you say you're from Kansas City?! So are we!". Ugh...of course. I was wrong and He was right! I immediately recognized her as the woman I had seen with her young daughter in the business office of the Mayo Clinic on Thursday. Embarassingly, I noticed them because her daughter had on some really cute boots ;). We started chatting and found out they are from Leawood, KS, which is where we go to church. I found out that her daughter has been battling Ulcerative Colitis and this is her third surgery here. This time her surgeon was no other than Dr. Devine. We talked briefly (with the other patient, too) about the struggles of being young and having health difficulties. We found out that the lady I originally walked with also had Dr. Bo Shen in Cleveland and switched her care here recently. I shared that Alex recently started a support group at COR for people with IBD and how other resources seemed to be for older people in a different stage of life.

Eventually, she needed to get back to her daughter and the other patient was needing to rest. I'm not really sure why God has put these people in our path, but I have no doubt that he did so intentionally. It is WAY out of my comfort zone to just strike up conversations with strangers in a sometimes touchy situation-like, I don't know...during recovery from major surgeries. It's incredible to me that I would ever doubt hearing Him speak so clearly, yet I still do. Maybe that was the lesson in and of itself. Maybe there's more...stay tuned ;).

So-with that confession of my thick-headedness off my chest, how about some specific prayer requests for today.
1. Guidance, open hearts and open ears to how Alex (and myself) can be used to turn this less-than-ideal situation into one that is for His purpose.
2. Continued pain control for Alex.
3. Tolerance for Alex's diet upgrade from a liquid diet to soft foods tomorrow (no nausea).
4. Healing, rest and recovery.

God is good, all the time.
All the time, God is good.

Friday, March 14, 2014

Devine Intervention Round 2

Alex's surgery with Dr. Devine began at 2:00. I am waiting in his room and they tell me he should be up here in about 8 hours from the time we checked in-so later tonight.

We met with Dr. Devine and his team yesterday and they marked the other side of his abdomen for placement of a new stoma. They will take down his current ostomy, resect the last few inches of his small intestine (where the active Crohn's disease is), open and clean out his current wound and fistula tract, place a wound vac & put the new stoma on his left side. They are also scoping and biopsying what is left of his colon while he is under sedation to screen for cancers, since that has not been done in a few years. He had a spot of basal cell skin cancer removed from his left temple yesterday and a precancerious spot on his nose frozen. We'll get the results from that biopsy next week to see if we need to do anything else to that area either before we leave here or when we return to Kansas City. Whew! And that's why it will be awhile until he's done!

Specific prayer requests:
1. Guidance and wisdom for Dr. Devine and his surgery team
2. Clear biopsy results
3. Good pain managment during recovery. They'll expect him to be up and walking tonight shortly after he comes up to his room.
4. Patience for Alex as he recovers, grace for his nagging wife and the ability to rest and recover quickly.

Thank you all for your prayers up until this point. Keep them coming! We love you all and will update as soon as we know more.

Phil. 4:6 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

Sunday, February 16, 2014

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!

Wednesday, January 15, 2014

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
;'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.

Thursday, January 2, 2014

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. 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.