Dancing in the Rain all the way to TREATMENT DAY!

This past month has been another adventure of ups and downs. It is so hard to get my hopes up about having diseases that can bring some peace, possible pain relief, and maybe even an opportunity to enjoy real food again and then hearing the doctors say the words, "Your tests are inconclusive. You may have this disease, but you may not.  We need to run more tests before we can start treatment."

Luckily I have had amazing friends that have been helping me achieve so many things on my bucket list to keep me happy! I've flown on a private plane, I even got to fly the plane, got a CTR ring, helped a friend get her dream wedding dress, ate delicious pumpkin ice cream (which stayed down for about 15 minutes), and I'm excited to keep adding to my list as well as getting to achieve more things on my list with all of you.  This list has really been an excellent way to get my mind off of just surviving and towards actually living.

BLOOD TESTS 

My last round of blood tests had a lot of abnormalities and so I will hear about what that all means on the 26th of October. 

ER VISIT 

About 5 weeks ago I had to have my tubes changed to pediatric tubes because I'd lost so much weight. The g-tube was changed easy enough and I was taught how to do it so I could change it every few months on my own. The j-tube button was placed incorrectly and so the opening of the tube was between my intestine and my abdomen wall. 

The pain became worse each day and doing my feedings or meds through the tube was unbearable. I started skipping more feedings but still the pain got worse and so I was taken to the ER on a Friday evening. 

At the ER they did a scan that showed that my tube was stuck in my abdomen wall and they couldn't even get it to turn. He also told me that formula and meds were floating around in my abdomen and that this could be very dangerous. It took about 8 hours at the ER before they could get ahold of my tube surgeon up north. 

I was sent home from the ER at 2:00 AM and then driven up to meet with the surgeon at 8:00 AM that Saturday. He hadn't realized the damage and so he hadn't prepared for anesthesiologist. I had to have the procedure done with only lidocaine to help for pain, which doesn't work for me. I endured the tube change, got a tube bear, and then was discharged to rest.

The next morning I woke up and my tube was out again. I couldn't get it to go back in by pushing so I punched my stomach as hard as I could to get it back in. I had to do this 4 times within a few days and so I knew something else was wrong. 

I met with my surgeon again, this time with my mom, and they said that an ulcer had formed on the inside abdomen wall so I would need to have a 24 inch red tube placed into my intestine for 10 days to let the sight heal before replacing the button. So once again I had to have my tube yanked out and this long tube placed in.

Over UEA I met with the tube surgeon again to have this temporary tube changed back to my permanent tube (picture below).  Since the tube change it has continued to pop out of my intestine and so I am back to punching it back in.  It is very painful but I am not mentally ready to go back in and hear what their next steps are to fix the damage that was formed.

TABLE TILT TEST 

I have had to stop hydration through my tube for 5 days twice in the past month, which has caused a lot more weight loss, but it was needed to get a more accurate reading on the table tilt test. This test was the final test to confirm POTS, but the results came back inconclusive. I thought I would have to wait until the 26th to hear for sure what my doctor wanted to do about this test because every other test came back saying that I had POTS, but then I passed out at church and spent another day in the ER.  My doctor called me to confirm that I definitively have POTS and that the test before had not been read correctly.  He said that I would begin treatment on the 26th, which is today!  This POTS has been caused from damage to my vagas nerve.  They assume that this is from my neck injury in high school, but I will find out more information on the vagas nerve damage at my appointment today.

I am just so excited to finally be starting TREATMENT.  They are no longer just trying to treat the symptoms, but they actually have somewhere to go.  The doctor has told me that he does not know what damage will be reversible seeing that I lost blood flow to my stomach and small intestines for so long, but he is hopeful that I will be able to at least absorb nutrients through my feeding tube and possibly have my picc line removed.  This means that eventually I may be able to keep down water and possibly other liquids. :) I will find out more today, but as you can imagine I have been bouncing up and down with excitement for the past 7 days.  (In my next post I will tell you about the day that I found out).  It is quite an interesting story actually.

The test was not as bad as I anticipated, but the aftermath of standing in that position for over 30 minutes caused me to be really weak and tired. In the past I have passed out because of dehydration and malnutrition and this week has been particularly rough in that front. I passed out in front of my family and they said I didn't come to for about a minute and so they called 911. When I came to I laid there for awhile because I just didn't have the energy to get up. 7 emt's came as well as two cops. I was impressed by how quickly they got here and they were as helpful as they could be, but I was quite embarrassed. I decided that I didn't want to go to the ER, but promised I would if it continued to happen. My nephews right it was so awesome having an ambulance come so they weren't traumatized. 

SMA SYNDROME/PYLORUS

When meeting with my surgeon he talked about the SMAS results, which came back inconclusive. This meant that to a certain extent I do have this syndrome, but the test was not done correctly so it needs to be redone to confirm that this is or is not causing the gastroparesis.  If this is what I have I will have the surgery. If the surgery is successful then they say I should be able to eat again. :)

They also want to check the function of my piloris, which is the flap that opens and closes to let food pass out of your stomach. If this is not functioning, then they will do a temporary fix for 2 months to see if I can eat food with the pylorus out of the way. If this works then they will do surgery to permanently fix this. 

WHAT IS NEXT?

They just finished up more testing on my neck, brain, spine, and vagas nerve.  They are also going to be doing more blood tests to see why my basic blood panels are coming back abnormal.  I begin muy first steroid and over the next four months I will be adding a steroid each month to take 4 total.  In the mean time I'm going to keep trying to be positive 90% of each week, fulfilling items on my bucket list, spending time with my family and friends, and teaching my amazing class! 

President Russell M. Nelson spoke in general conference about finding joy in whatever circumstance we are in and so I'm trying to find joy through this circumstance. I'm also praying for an understanding of why I feel that the rain hasn't stopped for over 4 years. It is a good thing that I love dancing in the rain! I am beginning to see one mighty big rainbow shining over me and I am just overjoyed.

Thank you to those who haven't given up on me, to those who haven't avoided me or ran away because of the fear of what I have been going through, to all who have prayed each day for both the doctors and me.  You are all so wonderful!  I hope that you are able to find joy in whatever circumstance you are going through right now! #hydedesign