Surgery Day – 7:30am

Emmy is back in the OR with the best of the best. We are told to expect updates every 2-3 hours throughout the day with the exception of a longer stretch in the afternoon when the pancreas goes to the lab for islet isolation.

We listened to Taylor Swifts new song while we were in pre-op and had a little dance party with the playlist Emmy made. Emmy had her big brave face on this morning up until we had to say our byes. She woke up with some decent pain around 4 this morning and we joked it’s Tony leaving with a fight! 

Extra special – the team showed up today wearing their TPIAT scrub hats Avery drew and gave the team after her surgery. So it’s kind of like sissy will be with her in the OR all day. 

Here goes our 2nd “longest-day-of-our-life”.

9:05 update

OR RN just called. All lines, drains and tubes have been placed and they just opened her belly to start surgery.

12:00 update

Well….. turns out her 4am pain was a pancreatitis attack. The inflammation made the removal of her pancreas a bit more challenging but it’s out. If surgery was scheduled a day or two later, we likely would not have ended up being able to do it. I guess I’m grateful it held off until this morning. Unfortunately they did have to take her spleen out. So that will bring all the extra infection precautions for life but now her and Sissy can match once again!

They said her pancreas was small but looked “ok” so we are still hopeful for a high islet yield. Pancreas now goes to the lab to start the desolving process. While the lab does that, the OR team will begin to reconstruct her bowels, remove the gallbladder and appendix and place her feeding tube in her belly.

Now is the long stretch with not much to update on… Jarret and I are going for a walk and grabbing some lunch.

4:30pm

18,000 islet cells!!!!  Closing her up now then we will talk with the surgeon before heading over to see her in the ICU. It will likely be another hour or two before we can see her. Once they have her settled and initial imaging completed, we will get to go back.

8:00pm

We are back with our girl! She did really well. We met with both of her surgeons once they were done in the OR and it was a lot to take in. Overall, they retrieved 18,000 islet cells and they were all successfully transplanted into her liver. (The goal is > 5,000 so she knocked that one of the park!) She has a really good chance of coming off insulin within the first year. Sounds like she made them work pretty hard! She had “very active acute pancreatitis” when they opened her up with lots of inflammation all around the pancreas and surrounding tissues making it all very angry when they would touch it which made it really difficult but they did it! Her pancreas itself was small and hard. They tried hard to save the spleen but they got to a point that if it started to bleed it would have been really unsafe so they opted to remove it. The tail of her pancreas was pretty much dead. He said he wished we did this surgery 6-12 months ago but he’s glad we were able to get it done now because it would have caused some big issues if we had waited a whole lot longer. He mentioned that her pain tolerance had to have been extremely high. He couldn’t believe she was laughing and joking like she was yesterday with so much inflammation and damage in her belly. They found some small cysts all around her spleen. They sent them to pathology to make sure they aren’t malignant but the live read they did during surgery said they are likely benign. They are expecting her hemodynamics (BP, HR, Temp, etc.) and blood sugars to be pretty up and down the next few days because of the fact that she was in an active episode. They told us to not be surprised if she’s pretty unstable medically for the next few days. Her additional organ removals and GI reconstruction went smooth. They are happy with the connections made in the reconstruction but they will be keeping a close eye on them since there’s so much swelling and angry tissues in there. She has two drains, a central line, two pain catheters, an a-line and her feeding tube plus a new/different type of nose tube to suction out her stomach. She will look pretty “puffy” the next few days because of all of the fluid she got today. They ended it with “the winkelman girls sure do like to give us a challenge!”. The breathing tube was removed but she will still be pretty sedated overnight and likely won’t remember the next few days. She is off all blood pressure medications at the moment. They will be keeping a very close eye on her glucose levels so the islet cells can find themselves a comfy home in her liver before they have to start trying to work. If she’s stable enough, they will get her up to sit in a chair tomorrow  There is going to be a lot of pain, but like we told Avery and have talked a lot about with Emmy, it’s healing pain and not pancreatitis pain. It will get better!

Now onto the recovery. This isn’t going to be easy but it will be worth it. The next 2-3 days will be the hardest. After that, with each day a tube should come out and she should start feeling better and better. Thank you everyone for all of your love and support these past few months, today, and the days to come. We are so very loved and it’s humbling to be reminded of it in such a big way.