The Land of 10,000 Lakes and Even More Questions

We thought the hardest part of the week would be getting to the University of Minnesota Masonic Children’s Hospital in Minneapolis. Turned out we were partially right. It also turned out that the hardest part was just beginning.

Day 1

After our travel woes we spent the majority of Sunday relaxing. I was disappointed as we were supposed to go to dinner with a good friend of mine now living in Minneapolis. Besides being a friend he and his family are big supporters of Emily, but getting together this trip wasn’t meant to be.  While the girls napped I took the opportunity to grab a quick bite and tour the sports facilities just steps from our hotel.

As it turns out, I was only inside the auxiliary gym at Williams Arena, but it was still a cool old building regardless. Then it was on to test out the closest non chain place I could find for lunch.

Turns out the place was in between. The burger was good, the fries were solid, but they had smoked garlic mayo that I considered drinking it was so good.

Later that night we ended up getting outside for a few minutes since the weather was so nice and Emme was doing better.

 

With a full day of appointments ahead of us on Day 2 in town we called it a night.

Day 2 (Day 1 at the hospital)

The whole first day Emily kept asking to go home. She said she wanted to go see Grandma and “Bubby” (what she calls our middle son) At first we thought she was just home sick, but we later realized she was apprehensive to meet new doctors and go to a new hospital. After much coaching she changed her tune a bit and walked out of the hotel acting like Super Emme.

It was a long day. We got our own room in the clinic building and they brought the specialists to us. The head of GI, the social worker, the health psychologist, head of the pain management clinic, head of physical therapy and finally the head endocrinologist. They thankfully scheduled us in a lunch break. It was a lot to process and go over from so many angles. Discussing a medical history as long and wide ranging as Emily’s with people who have never met you or your daughter is tough. Keeping a 3 year old occupied for that long is even tougher. Luckily my wife knows everything about Emily medically so I was able to keep her occupied while Liz rattled off every medicine and pertinent detail for each specialist.

Long day of appointments, but she is finding new ways to have fun regardless

A video posted by Chris Theisen (@cjtheisen) on


As we wrapped up Day 1 at the hospital we were a bit overwhelmed with all of the information, but comfortable with the team we met so far. The endocrinologist seemed to have the most concern about Emily’s unknown underlying conditions and what that would mean during the surgery. Even at that we didn’t get any indications about what we were to learn on Day 2 at the hospital.

With such a full day we didn’t have much time to do any exploring at night. We decided to hit up the Mall of America and grab some dinner while there. Emily passed out on the short drive there. As you can see this was both a good and a bad thing.

After Liz was done we walked around the mall a bit and had a great dinner. If you go make sure and wear some walking shoes, the place is huge. It has it’s own amusement park inside for christ sakes.

Day 3 (Day 2 at the hospital)


After a full day the previous day it was nice to get a later start on Day 2. Even though we had fewer appointments, they were much more important. While we met the majority of the supporting specialists on Day 1, we were slated to meet the heads of the transplant team on Day 2.

We first met the Transplant Coordinator, Marie Cook. She is our main contact for everything related to the transplant program. We had a good meeting with Marie. She went over what to expect as the process continued and gave us more insight into how the entire team goes about approving a patient for the procedure. The in depth process consists of weekly meetings where every specialist on the team gets together to discuss future candidates. Only once the entire team signs off can the scheduling begin. Marie re-iterated how serious the procedure was and that with Emily’s extensive, and largely unknown, medical history they would likely need multiple group discussions about her case.

Next we took a guided tour of the hospital. Riley Childrens Hospital is one of the newer and better childrens hospitals in all of the country. You never have a stay there where you feel like you would rather have this or wanting that. We have stayed in other hospitals and Riley is one of the nicest ones anywhere. With all of that said, Riley has nothing on Masonic Children’s when it comes to technology.

We were really impressed with the hospital and felt very comfortable there. If you have to spend extended time in a hospital there are worse places to do it.

After our tour was the big appointment. Dr. Chinnakotla is the transplant surgeon for the program. While everyone else has their share of input he has the most say when it comes to the TP-IAT procedure. Up to this point we had no indication that what Dr. C. would share with us was coming. While there was lots of discussion in the previous appointments about Emily’s unknown underlying issues we didn’t think much of it. Since we haven’t had a firm diagnosis for either her pancreatitis or metabolic issues for so long we get numb to the fact that they still don’t know why any of this is happening to her. We have seen the best of the best and keep striking out on why. Well Dr. C. stated not having a reason why isn’t good enough for him.

He wasted little time getting to the point. He asked why we hadn’t had whole exome sequencing done on Emily yet. When we told him that multiple specialist had mentioned that as a logical next step in her journey, but we hadn’t had luck getting it approved yet he got angry. Five minutes into meeting the guy and he was banging his fist telling us we needed to contact our government representatives to demand insurance approve the testing. We looked at each other in shock. During her last inpatient stay the neuro-geneticist at Riley said they were going to do whole exome sequencing, but nothing had come of it yet. It had been on the table in our minds for a long time, but since its not a certainty that they find anything and it likely wouldn’t change her current care we didn’t push as hard as we could. The other part was we had these consultations setup for a month or more but this was the first we had heard about the necessity for more genetic testing. If we had known how important these tests were to the team in Minneapolis we would’ve spent every day in the interim pushing to have them done. We always knew Emily’s case was going to be a unique one, but we weren’t prepared for this.

Dr. C. shared with us why further testing was so important. This transplant is very difficult. The recovery is long. The percentages of needing more procedures related to the transplant are high. Just getting to the pancreas requires moving around a bunch of organs. Couple that with the need to remove the gall bladder, spleen, part of the stomach and re-routing everything and you have a serious operation. We were aware of what went into the surgery so that wasn’t news to us. What we didn’t expect was what he told us next. If they were to perform the procedure on Emily, with so many unknowns still in play, it could kill her. Obviously a surgery this major shares some risks, one of which is mortality from internal bleeding, but we didn’t think it would be this risky for her. One of the main concerns with Emily specifically is her motility. Her stomach doesn’t push things through it like it should, which is partially why we are on IV feedings right now. Patients that have this procedure have slowed motility as a side effect. Most of the time this just means placing a feeding tube in the stomach and slowly working back up to normal feedings. This would be much tougher for Emily. Dr. C. said that his goal is to improve patients lives. He wants to perform the transplant to allow for less pain long term and for the patients health to improve. As it stands right now he can’t be sure that would be the case with Emily. While we watch her suffer through pancreatitis daily, the risks from the unknown underlying metabolic condition and cause of the pancreatitis are given him pause for concern. He said without knowing what exactly is going on with her he can’t be certain that the procedure won’t cause her to be worse off than she is now.

We knew this wouldn’t be easy. We knew this was a major step, but we were prepared to do whatever it took to alleviate Emily’s constant pain and hospital visits. Our specialists at Riley and from other hospitals said this was our next step. We were heading up here to go through the process and get the timeline figured out on next steps. We weren’t expecting this to be dropped in our laps. It was a huge punch in the gut. Dr. C. wants to do the procedure. He wants to make Emily’s life better. He just isn’t going to commit to it until he has more information on what having the procedure done will mean for her. At first we were angry with him. Our daughter is suffering, why can’t we make that stop? Why didn’t you tell us all of this before we came up here so we could’ve started the necessary leg work. What do we do about her pancreas if the genetic testing doesn’t return results? She still needs to have her pancreatitis addressed. We left and tried to process it all.

Day 4 (Day 3 at the hospital)

After the first two days at the hospital we were ready for a lighter day. While we had to be there early, we only had two appointments. The metabolic doc met to discuss her case and get a fresh set of eyes on Emily’s history. The good news was she said she would’ve done the same things our metabolic team at Riley did to treat Emily. She did say there were other things she would’ve looked into and tests to run, but she also didn’t see how she presented in clinic and responded to treatments. She called it treating the patient “as-is” and said our team did a good job to help Emily improve. She also agreed that whole exome sequencing was the next needed step. Next up was the nutritionist. She went over what would happen during and after the surgery from a diet standpoint. With Emily’s underlying metabolic issues there wasn’t much relevant to us since we already deal with, or have dealt with, many of the things someone goes through after having the surgery.

This was a short day and we needed it. After the tough discussion with Dr. C. the day before we decided to head outdoors to get a good lunch, good beer and clear our minds a bit. We were turned on to the perfect spot for this by Marie Cook.

After the late lunch and stroll in the park to checkout the waterfall we headed back to recharge. We knew the team would be meeting that night to discuss Emily’s case. After a brief snooze we decided to head back to the falls and Sea Salt Eatery for dinner. Yes we ate at the same place for lunch and dinner. It was such a beautiful setting and the food was so good that it was a perfect place to unwind and enjoy the weather.

As we were finishing up dinner we got a call from Marie Cook. The team had a long discussion about Emily’s case. It was decided that until whole exome sequencing could be completed, and a better understanding of her conditions gained, they wouldn’t be proceeding with Emily’s case. We weren’t surprised necessarily but we still weren’t prepared to hear it in those terms. We had been banking on this procedure being the thing that took away so much of our daughters pain. We knew she still had numerous issues from her metabolic condition. We weren’t planning on life becoming miraculously “normal” as soon as it was done. On the same hand though this wasn’t in our plans. Whole exome sequencing can take up to 6 months. And that is after getting it approved. The metabolic doctor in Minneapolis said they can request expedited results, but that costs more and isn’t easy to get approved.

Mind you the team wasn’t telling us no. They aren’t contesting her pancreatitis or the fact that she is suffering from this disease. They are just saying not right now. The head of the GI team for the program stated she would write a letter on our behalf to insurance. She is good friends with the head of the entire GI department at Riley and said she could contact her as well. Marie Cook, the transplant coordinator, offered herself as a resource and said she would stay in touch while we navigated the process.

As I type in this in the wee hours of the Monday morning following our trip we have a new daily goal. Do whatever it takes to get expedited whole exome sequencing approved. And by we I mean Liz. She has two of the hardest jobs anywhere and gets paid miserably to do them; nurse and social worker. Sure our specialists help with pushing things through insurance, but Liz has to do a lot of the coordination. She has to make the initial calls and hold them to their word. She has to follow up with all of them. But as she said on the way to the hotel that night “I’m going to do whatever it takes to get that testing approved”

So what does this mean for the fundraising efforts already underway? They are still ongoing as our plan now is to have the procedure. If we run into issues with insurance we might be paying the 6 figure cost for the genetic sequencing ourselves. And once the genetic testing is all said and done there is still no assurance how much insurance would cover if she does have the surgery. With our medical track record the genetic testing could turn up a new diagnosis that requires a new set of specialist visits. While it was already hard to ask for help in the first place, there are just too many unknowns to stop that portion now.

Thank you to everyone who already donated for allowing us to make the consultation trip up to Minneapolis. And thank you regardless of if you donated or not, your continued support helps us more than you could know. When we aren’t sure what’s coming next it’s nice to see the constant thoughts, prayers and concerns. Knowing the love shown to our family and the impact our daughter has made on so many people is a feeling that is hard to express.

We will keep fighting to get answers and we won’t stop until we have them.

3 Responses to “The Land of 10,000 Lakes and Even More Questions

  • Thank you for this very explicit update, I know how hard this was for you & Elizabeth to be explain this to everyone after this long trip, so that we can understand what the next step is. We all pray these tests will give this team of Doctors some answers, especially the ones we want to hear. This fight must go on for our Warrior Princess. We are her soldiers to win this battle. Love to all my HEROS. Prayers for all.🙏🏼✝💜

  • Don’t worry about “rambling on” Chris. You did a great job and we appreciate you and Liz keeping up updated. #PrincessWarrior #Theisenstrong

Trackbacks & Pings

  • They Said Yes to the WES - Emme Jo :

    […] you haven’t been following along with Emme’s story this post is an update to The Land Of 10,000 Lakes and Even More Questions. If you aren’t aware of the reasons behind our trip to Minneapolis or what the results were […]

    1 year ago

Leave a Reply