Surgery Day

Hi. I'm Hayden's mom, Kristy. I will be posting for today & maybe some days that Hayden is in the hospital.

We all arrived at UMMC at 5:30am & were not sure what to expect. We were tired, nervous, but a little excited from the possibility of Hayden not living in pain anymore. We were shuffled around the admission process & finally prepped for the surgery in the holding room. The anesthesiolgist & surgeons came in to give us the pep talks & then Hayden was whisked away around 7:20.

From there, the waiting game began. Hayden's grandparents, myslef, her dad & stepdad were all there in the waiting room, awaitiating a surgery that could last 12 hours.

We got the first update from Dr. Sutherland & Co. about 5 hours after the surgery began. The pancreas, spleen & appendix had been removed. They even brought out pictures of the organs. Let me tell you, the pancreas looked pretty bad. It had necrotic (blackened) parts on it. Dr. Sutherland pointed out hardened, almost stone-like places on it as well. He said on a scale of 1-10, with 10 being the worse pancreas he's seen, Hayden's was a 7.

Then it was back to work.

They took the pancreas to the lab to harvest the Islet cells & they then set out to reconstruct the small intestine. You see, Hayden had a Puestow procedure when she was 5. At this time, the doctor stitched a part of the small intestine onto the pancreas to help in drain. Now, they needed to fix this "plumbing" back to some sort of normalcy.

After another 4 hours, Dr. Sutherland came out to say they had harvested about 100,000 Islet cells. He said he would have liked more, but he was pleased with yield. As we had read in the literature, those who have had Puestows tend to yield fewer Islet cells than those who have not had the procedure.

Finally, at about 7:00pm the nurse came to tell us Hayden was in the recovery room. A little while later I went back to see her. She was in obvious pain, but drifting in & out of consciousness. She was in the recovery room for about 2 hours, then she was moved to the peds ICU.

The Mall of America

Today was a fun day. We visited the Mall of America. What a place! We saw I can't count how many stores & rode the roller coasters that are actually inside the mall.
A real bummer was that I had to eat only clear liquids today (broth & water, etc.) I have to get to bed early too, cause we have to get up at 4:00am. We have to be at the hospital at 5:30 in the morning.

Testing Day

This morning at 7:30, mom & I were at the Masonic Building for a glucose tolerance test. The glucose tolerance test is suppose to give them an idea of how good my islet cells are working so far. Before the test, they drew 8 tubes of blood for baseline labs. After this, I drank a can of chocolate Boost (nasty!) in 5 minutes. At intervals of 30 minutes, more blood was taken to measure my glucose. We continued this for 2 hours. We also agreed to participate in a study where the Dr.s take a sample of my pancreas tissue & use it in research.
Next, we walked next door to the Phillip Wangesteen Building to meet with Dr. Sutherland. I also met Dr. Huddleston who would be assisting him. We answers a few questions, filled out all the consents & were ready to go.

Arrival In Minn.

We arrived in Minneapolis tonight around 5 (almost an hour late - Got to love Atalanta!!). No appointments until tomorrow morning. We're staying at the University Raddison. It's pretty nice and best of all, it's only a couple blocks away from the hospital. Another plus is that the hotel has a Starbucks and an Applebees attached to it; You don't even have to walk outside in the 2 DEGREE WEATHER!! It's snowing and it's SOO pretty. I've never seen so much snow and ice and it looks really cool.

Messing Up My Last Week of School Before Surgery

Well this was the last week that I get to go to school before the surgery, but I have only been 1 day. My fentanyl patch was increased Sunday because we ran out of the lower dosage patches. Monday was welcomed by extreme nausea, so I stayed home. Tuesday I woke up as if I were going to school, but the more I walked around, the more my stomach hurt. I ended up spending my morning in the ER rather than at school. Finally, Wednesday - yesterday - I was able to go to school..FINALLY! As you can tell I am, once again, at home. I can't wait until this surgery is in the past and I can get back to my normal life.

Becoming Worse

Well, I haven't been keeping up with my blog as much as I had hoped but now I have good reasons to. Since the last post, I have had another attack that hospitalized me. Doctors are now saying that I have hit a new stage in my C.P., for the worst. Before, I could say that I was not using narcotics on a daily bases. I can no longer say that truthfully. We have to put a fentanyl patch on every 72 hours now. Due to my sudden regression, my Islet Cell Transplant date has been moved up...to February 20th. Ya, that's much sooner.
When the doctors would ask "Is she taking narcotics on a daily basis?" we would always say "No"...until now; When they would ask "Has having C.P. effected the way she lives on a daily life?" our answer would be "No"...until now. After this last attack, I had to quit my swim team. Also, when we leave to get this surgery done (at the University of Minnesota), I will have to miss a minimum of 4 weeks of school. I never thought that I would say this, but..I'd rather be in school instead of missing a month. Lol.

Introduction

Hi,

My name is Hayden. I am 15 years old and I was diagnosed with Chronic Pancreatitis when I was 3. Life has been made more difficult, but it could always be worse. We have been looking into doing an Islet Cell Transplant in the summer. I have set up this blog in hopes of gaining more information about this procedure. I will try to keep this blog updated as new events happen, so that way others looking into this procedure can have some idea as to what to expect.