Monday, May 17, 2010

Back to "normal"

Well, we have been home a week and have been so blessed by our staff to have a week off work. It gave us a great opportunity to catch up and get ready to go back to work. Dr. Ellis' office has been busy scheduling appointments for Julie so that she can begin her Remicade treatments. This drug should help with the healing process. Julie will be going to infusion therapy at the hospital for these treatments. It takes between an hour and a half and two hours to receive the treatments and will start out getting them every three weeks and then once she's past the initial doses will get them every eight weeks. The doctors tell us that if Remicade works she will take these infusions for the rest of her life. Julie is perfectly okay with that as long as they do what they are supposed to. We are also feeling better about it, now that we know for sure that our insurance will cover it. (One infusion is $6000) We also spent our free week buying Julie some new clothes since everything she wore pre-mayo is now too big. She says if you're going to have a side effect of Crohn's in her case weight loss was a nice side benefit.
Overall, Julie is feeling SOOO much better. She says she just had no idea how really bad she was feeling and how little energy she had, until after the surgery. She has her old energy and enthusiasm back and is really enjoying life again. Thanks so so much for all your thoughts and prayers. Our family is so blessed by all of you!

Monday, May 10, 2010

Heading Home

Julie and Dad are currently over at one of the many shiny Mayo buildings getting blood drawn for two more tests that will help the endocrinologist decide how to taper Julie off of prednisone. She has an appointment at 1:00 with a different gastro guy and an appointment at 2:00 and then we should be free to head home. Our plan is to go half way today and the rest of the way tomorrow. We are VERY excited to be in our own beds and to see our kitties! I'm sure Chaucer will have nothing to do with us for about 2 days and then everything will be fine. They told Julie that she shouldn't lift anything heavier than 10 pounds for the next 4 weeks. Which means she probably shouldn't pick up Chaucer, Ellie or Toby as all of our cats are in the slightly to very obese range!!

Sunday, May 9, 2010

Pancakes and Breakin Out

The doctors were in this morning and gave Julie the okay to eat regular food. She was very excited about that as she had big plans for pancakes for breakfast. After the docs left she called down to room service and they hadn't gotten the memo. So after jumping through some hoops Julie is enjoying her pancakes and fat free chocolate skim milk as we speak. Doctors tell us that she is going to get to leave the hospital sometime today. They would like us to stick around Rochester today just to make sure everything goes okay, but we should be able to head home tomorrow. Woo Hoo! Can't wait to be back in the regular world, even though we have been treated so well at Mayo Clinic. Julie wants a t-shirt to commemorate her visit, so we will be checking out the gift shop before leave. Oh, and food service delivered the recipe for meatloaf (everything is measured in mL so we will be converting). We will work on perfecting the mushroom sauce when we get home. I'll keep you posted.
Thanks so much for all your messages, prayers, phone calls, and taking care of everything while we have been gone!
Love you all!
Robin

Saturday, May 8, 2010

Saturday at Mayo Clinic


Julie is awake and doing very well. She has very little pain. In fact she said it just felt like she had done too many sit ups. I'm pretty sure she hasn't done any sit ups so I think they gave her a good work out during the surgery. She is on a liquid diet until at least mid afternoon. Lucky for Julie the vanilla milkshake was an acceptable liquid diet option for breakfast. She said it was either milkshake or cream of wheat and really which would you pick? They don't want to put too much pressure on the tummy one day post surgery, but told her by evening she could probably eat pretty normally. They got her up out of bed during the night and she said that didn't hurt and wasn't really a problem. The surgeons were in this morning and said she was healing just perfectly, and were happy with her progress. She will be doing some hallway laps later today. This floor kind of looks like a walking track right now, so Julie will be joining the 6th floor crew in just a little bit. Hope all is well with all of you. Thanks for all the notes and messages.
Robin
Oh P.S. Robin V. Yes we are still at Mayo Clinic. The clinic itself is four or five great big buildings. That's where all the outpatient stuff happens. Mayo also owns two hospitals St. Mary's hospital which is where we were until yesterday. St. Mary's is a HUGE hospital. It has 14 miles of hallway, 1600 beds and over 100 operating rooms. But it is NOT where they do colorectal surgeries. So we were transfered to Rochester Methodist Hospital also owned by Mayo Clinic. It has 794 beds, 41 operating rooms and is being completely remodeled. The floor Julie is on was just finished about a month ago and is really beautiful. So the short answer is YES we are still at Mayo.

Friday, May 7, 2010

Julie is Good.

Julie girl is out of surgery, doing very well, having very minimal pain and no bleeding. Our nurse tells us she has moved up to her favorite patient. We like it when Julie is the favorite patient. And let's face it, why wouldn't she be? They asked her to rate her pain and she said 2. They asked her if she would like narcotics and Julie said "Why not? When else is someone just going to offer them up like that?" You gotta love that. Currently she is watching Julie and Julia and wishing for a dinner that included something besides liquid. But Dr. Merchea assures her that she will get to resume ordering room service tomorrow. I'm sure meatloaf will be on the menu. More tomorrow! I think Julie is going to poop out and fall asleep very soon. Love to all of you!

Surgery is done

Julie's surgery is finished and she did just fine. We got to meet with Dr. Dozois post surgery. He said she shouldn't have much pain and should feel quite a lot better very quickly. He did say that there was a lot of ulceration in her colon and a lot of disease from the Crohn's. He is concerned about a large ulcer near the rectum and is hoping that the bypass of the colon and the Remicade will do good things for it. Otherwise Julie may be looking at another surgery later to take care of it. So really we will just wait and see what happens there. She will be in recovery for a couple of hours before we can see her, so Mom, Dad and I ventured through the "subway" of Mayo clinic (a whole lot of sprawling underground hallways) to find our new hotel. We only got lost a couple of times and have settled in to our new space. Thanks so much for your thoughts and prayers. I'll plan to do another update when we see Julie after she wakes up.

Surgery

Have I mentioned that this place is crazy efficient? Because WOW they are! In the last two hours, Julie has been transported by amnbulance to the Methodist hospital, Dad Mom and I have changed hotels. Julie got checked into her new room on the 6th floor and she has been taken to surgery. Name one other place in the world where that would have happened so quickly? They took her to pre-op at about 12:45 and said she would be there about an hour, and the surgery would take about another hour. As soon as she is in recovery we will hear from the surgeon. I will update as soon as we hear anything. Oh, the surgeon's name is Dr. Dozois pronounce Dr. Dohs-Wa. He and his father are both surgeons here at Mayo and according to all the nurses is VERY good looking. I'm sure Julie will have something to say about that when she gets back to her room.

Robin

A new day. A new plan.

Julie's surgeon came in bright and early at 6:00am this morning to let us know that they are planning to do surgery this afternoon. They told us that the prelminary results of all the cultures and tests showed no sign of infection and the MRI came back good. So, surgery is the best way to go. Dr. Habib was in this morning as well and he told Julie that they had two more of these surgeries scheduled this morning and will probably do her's early afternoon. We will be moving hospitals, from the Catholic one to the Methodist one. Pretty fitting right? We have no idea how the transport is going to happen but since this place is magical we aren't worrying about it, because some wizard is going to take care of it.
Julie had been worried about the surgery option and definitely the temporary ostomy bag, but the surgeon really set her mind at rest, told her it was no big deal, and that people scuba dive with them all the time. While Julie has no real desire to scuba dive, this seems to make the idea perfectly fine. She is in VERY good spirits this morning and just so happy to have a plan for moving forward. The surgeon told her that she would be able to eat dinner tonight, and should feel MUCH MUCH better by evening. Julie is really happy that she can have dinner tonight because she's planning a repeat of the meatloaf from last night. She just announced to the room that she's not leaving this hospital with out the recipe for the mushroom sauce. I'll keep you posted on how that goes for her.
So our expectation is surgery early this afternoon and then two to three days of recovery. Dr. Habib says we may be headed home as early as Monday. I'll keep you posted as we know more. Thanks so much for all your prayers, thoughts, calls and everything else. We are so lucky to have all of you on our side. Also, great big giant thanks to Debbi, Sam, Amy,and Taylor for covering the schedule at the studio. I know you have shuffled a lot around to make it work. Thank you so much. Also, Silly Jenn and Aja rock the freakin' party. Thank you so much for coming down, loading kilns and teaching Make Munch and Mingle last night. I know the studio has been in the most capable hands! Love you all!
Robin

Thursday, May 6, 2010

MRI, meatloaf and Marti

Well today has been a day almost entirely about waiting. The nurse came in this morning to tell Julie that the doctors would like to do an MRI which will be helpful to the surgeons if we go that route. The MRI was scheduled for 2:45 and Julie wasn't allowed to eat or drink anything before the procedure. Lucky for Julie and her hungry belly they came in about 1:00 and took her down for the test. In the meantime our friend Marti who is a pottery studio owner from Wisconsin came to visit. She has been a wonderful diversion from a pretty long day of sitting around waiting for test results.
We were really hoping to get some results from the colonoscopy biopsies and CMV test, but alas they are not back from the lab yet. So we are hoping that the doctors have those results by morning rounds tomorrow. It will be really exciting to have a plan.
The other highlight of the day for Julie was dinner. Apparently, Mayo Clinic has some of the best meatloaf around. The mushroom sauce on top was the best part. So if ever you find yourself a patient of Mayo Clinic you have Julie's reccommendation.
More tomorrow as soon as we know!

Wednesday, May 5, 2010

Dr. Sweetser came to say hello.

All right friends.

We got a visit from Dr. Sweetser who's wife is from Kansas City and they were married there. (It's a pretty small world huh?) Here's what we know. We will be waiting until tomorrow to get results from the biopsies and stool samples. This will tell us if there is an infection that is keeping Julie from responding to drug treatment. If that is the case, they have great treatments for the infection and would in the end really help to control the Crohn's. For once, infection would be the BEST case scenario.
If that is not the case, they are looking at doing a surgical procedure that would bypass the colon. They would go in arthroscopically and disconnect the colon from the small bowel and bypass the colon. They would have to put in a temporary ostomy bag. This procedure would allow the colon to rest and heal itself. They would also start a treatment called Remicade that should also help. Dr.Sweetser said that Julie's colon is severely inflamed on the left side and that there are LOTS of ulcers. He expects with the surgery they would keep the colon bypassed for three to four months, and then they could re-attach the colon once it had a chance to heal.
As far as time frame for all this stuff... We expect the results of the labs to be back sometime tomorrow. We will meet with the surgeons either this evening or tomorrow to discuss that option. Once we have the results we will create a plan. If we are doing the surgery option, probably that will happen either Friday or Monday. If it's the infection plan, they will start treatment immediately and hope Julie responds very quickly.
So the short version is we will know more tomorrow, and pray for infection! Love to all and thank you so much for all the prayers, notes, calls, jokes and everything else.
JRJ&S
P.S. Becky S.- Julie said to tell you that you should really listen anytime God tells you to pass along messages because she really really needed that scripture last night during all the colon prep crap.

Colonoscopy: Check!

Well Julie finished her colon prep (this one was call Movi prep) at about midnight last night, and she was very excited to have it done with. She said it tasted exactly like lemon lysol smells and since she is allergic to aspertame they couldn't add any flavoring to it. She was pretty dissapointed that moviprep, didn't come with popcorn and a show. We did find out that you do get free movies on demand though so we took care of at least half of her wants.
Her colonoscopy was scheduled for 10:30 but they had a cancellation and she was able to go at about 9:00 this morning. The procedure and recovery took about two and a half hours, and there wasn't a waiting room where the procedure was being done, so Mom, Dad and I went exploring in Rochester. We located Super Target and picked up some essentials. We solved the mystery of where the thousands of people who work in this amazing place park (they are bussed in), and we discovered a neighborhood of gorgeous houses (we're pretty sure the people who live in some of them invented plastic).
Julie is back in her room now. She was allowed to order whatever she wanted off the "room service" menu. That made her exceptionally happy after the less than exciting diebetic diet they made her have in Salina. We were just excited that she had an appetite again. That had been missing for some time.
The resident on our team was in to chat with us just a few minutes ago. I don't know her name yet, but will let you know. She and the rest of the team are going to confer in the next hour or so, and then the whole team will be in to talk to us this afternoon. At that point we should get some idea of the course of treatment they are planning for Julie. She did tell us that she thought we might have some other options to try before we get to surgery. Right now they are trying to rule out CMV which apparently is an infection that lots of people with Crohn's can get.
That's about all we know for now. I'll update again after the team comes to visit.

Tuesday, May 4, 2010

We meet Dr. Habib

We met the first member of Julie's team just a bit ago. His name is Dr. Habib and he grew up in Leavenworth KS. He has brought us the unwelcome news that they want to do another colonoscopy tomorrow. So for the second time in a week, Julie has to drink the gallon of "go lightly" solution to prepare. Julie's exact words were "you need to call the drug company and have them re-name that solution, because they are full of crap!" She is not at all excited about the prospect but Dr. Habib tells us that they want to check for CMV which is a virus that can only be detected by taking a sample directly from the colon. They also want the experts to get a first hand look at her Crohn's so she will grudgingly drink the junk and get ready again.

We have arrived.

Julie is in her room now getting changed into an oh so fashionable open back hospital gown. She is at St. Mary's Hospital which is part of Mayo Clinic here in Rochester. She is on the sixth floor in room 282. Currently we know absolutely nothing new, but I'm sure that will change very quickly. Everyone we have encountered so far has been incredibly nice to us, and have really put Julie at ease. Even the lady in charge of all the insurance stuff, told her that she was in the right place and was going to feel better very soon.
Julie did very well on the trip up, but about 15 minutes before we arrived nerves set in, so we stopped and said a prayer, and all was well again. It seems like "normal" just keeps changing for her and Mayo Clinic is going to be the new normal at least for a little while.
When we know more, I will post it here. Thanks so much for all the love, well wishes and prayers. Julie can see the comments posted here on her cell phone. So feel free to write her messages and I will pass on her responses!

Monday, May 3, 2010

What's goin on 5-3-2010

Hello friends.

Well we are in the car on the way to Rochester, Minnesota to visit the Mayo Clinic. Julie has been diagnosed with Crohn's Disease and has been dealing with symptoms since last September. After changing general practitioners and working with a gastroenterologist we finally got a diagnosis in January of 2010. She has been on several different drug regiments to try to control her symptoms, but we just have not found the right combo or right drugs to manage her problems. For the last several weeks, things have been getting worse instead of better and a week ago Sunday we got to take our second trip to the E.R. This time she was passing large quantities of blood, her blood pressure was through the floor, her temperature was 103, her pulse was way up, and she was severly dehydrated. So they gave her 4 litres of fluid and two units of blood and admitted her to the hospital. She spent a full week with our very kind friends at Salina Regional Health Center. Dr. Ellis did a colonoscopy on Wednesday and said that more than half of Julie's colon is effected and she is 95% sure that it is Crohn's. She has refered us to Mayo Clinic in Minnesota. Before we could go, they wanted us to do a 5 day regiment of prednisone,flagyl, and high protein diet. They also motiored everything that went in and came out. Needless to say there was a poop chart in the bathroom and whole new rating system to learn. We were so lucky to have SO MANY really fabulous nurses and techs on 4th floor of SRHC. We got spoiled also by lots of guests, flowers, phone calls text messages, and cards. Oh and let me just say, Dr. Allred, Dr. Ellis and Dr. Allsop all rock the freaking house. Thank you so much for helping us navigate this mess, and for keeping us smiling and laughing in the process.
So we did our 5 day regiment and now we are in the car, on our way to Mayo Clinic in Minnesota and are really looking forward to getting some more answers. Dr. Ellis has told us that her guess is surgery is a likely option for what comes next, but we will know more tomorrow. They are expecting us about midday tomorrow so we are going to drive as far as we feel like it tonight and then go the rest of the way in the morning.
I will do my very best to keep you updated here on the blog. So check back, leave a comment for Julie and I will pass those along. We so appreciate all your love and prayers. We are lucky to have so many great friends. Oh... also great big giant shout out to Silly Jenn who is going to keep our store running and my girls Sam, Debbi, Amy and Taylor. Thank you so much in advance for keeping the pottery people happy!!