ALEXA'S JOURNEY TO A NEW LIFE: 2015

TEN MONTHS AFTER SURGERY!!!!!

4/27/15

We are really thrilled with how much better Alexa is doing! She still has the pain on her left side as usual & especially with bowel movements, but it is not as bad as before. We are making progress!! Now to report on the new GI dr that I mentioned we had found after that horrible experience with the last one who didn’t even read her history before doing the endoscopy. When I was 1^st looking for a new dr & praying fervently to be guided to the right one, I felt really good about this one named Dr. Doxey. When I called to get the apt they said he was completely booked for the next 2 months but we could get in to one of his partners there. They said that Dr. Moore had an opening in 2 weeks & that was my big mistake! Alexa was in so much pain that I just wanted to get it figured out & I didn’t stop to ask Heavenly Father about it & made the apt. We actually really liked this dr but he didn’t have any clue at all about the surgery Alexa had. I do have to give him credit for reviewing all of her records before coming in to talk to us. The 1^st thing he said when he came in was, “I can’t believe you had such a radical surgery, why would you do that?” Alexa is actually the one who explained to him why she had it, she simply said, “Because my pancreas was bad & needed to be removed.” He then said there wasn’t enough medical evidence out to prove that the TP/AIT surgery is the best way.” That’s when I spoke up & told him that that’s where he is wrong! I told him that I had been studying this for 2 ½ yrs straight & that there is so much evidence that this surgery saves lives & he just hasn’t researched it! I asked him if he thought we should have done the Whipple surgery where they just remove part of the pancreas & then it kills all chances of saving any islets later & almost always they end up having the pain come back again & have to have more surgery again. Then I said, “Alexa’s islets were able to be saved & she was completely off insulin after 1 month!” He said, “Well, from that stand point I guess it’s good.” I said, “What do you mean from that stand point? That’s HUGE!!” Then he said, “Well Alexa is still in pain, has this improved her quality of life at all?” I looked at Alexa & said, “Alexa, has your quality of life been improved since having this surgery?” She said, “Yes, about 1000 times!” I then told him about how she was just on the couch before surgery & hardly ever left the house & missed her jr & sr yrs of high school & now was able to go out with friends & enroll in school & actually have somewhat of a life now! He then went on & asked why we had traveled around so much so I explained about how there were no doctors in Utah trained to perform this surgery & why we had to go so many different places. He said, “I see that you have been to lots of different GI doctors & that you are on lots of meds. You know, if you go to enough doctors, you can always get one of them to prescribe what you want.” I couldn’t believe it!! He actually thought we were there seeking more meds!! I then told him that he doesn’t understand who he is talking to! I said, “You are talking to a family who doesn’t like taking any medication at all & Alexa was on absolutely nothing before all of this!! We had very legitimate reasons for leaving each & every GI dr!” He said, “Well, you are probably not going to like what I am going to say & I suspect I won’t be you last GI dr. I am not going to do anything until she gets off of some of these meds since I am sure that they are contributing to the probs that she is having.” I said, “I actually do like what you are saying & I do hope that you will be the last GI we will have to go to.” He wants her to get off 2 of the medications before seeing her again. I was actually really glad about this, it was good for Alexa to hear this from someone other than her parents. The prob is I knew this dr didn’t realize how much she was on before surgery & how far she has come down! He really didn’t have a clue!!! We went home after that visit, which was on Feb 19^th, & immediately she went off one of the meds he wanted her off of, which was for restless legs. I got some minerals that were supposed to help with that & it worked! The other med was the Oxycodone. It took her about a month to get off of it completely & I was really amazed at the difference it made. She was also on a pretty high dose of tizanadine, which is a muscle relaxer & we started dropping off that too. We made an apt to go back in to Dr. Moore the end of March & she was about ½ the dose of that too. He seemed pretty surprised that she was off the 2 meds & down so much on the other. That’s when he decided to try an anti-spasm med. We tried that for 2 weeks & it did nothing. I called to let him know & he had her stop that & switch to something else & after 2 – 3 weeks I called to let him know there was no change again. That’s when he suggested that we schedule an endoscopy. Well, I was wondering about that since she’d just had one a few months ago & he had looked at the test results & said they really helped him a lot. We went in for an apt with him this past Thurs & he told me the reason he wanted to do the test was to check for allergies. I told him that she has had at least 7 or 8 of these endoscopies & had been checked for everything under the sun already!! He got very, very sarcastic with me during the apt. He brought up the surgery again & said to Alexa, “I know we don’t agree on this but since you had such a radical surgery, you will probably have this pain the rest of your life. That doesn’t mean I’m going to give up & not try anymore, but we’ve about exhausted all of our options.” I was so upset that he was trying to take away a young girl’s hope!! I started in on him & told him there are plenty of people who have had this surgery who are totally pain free & living normal lives!! He actually stood up & threw his arms in the air & said, “Oh well, she’s all cured then!! She had this wonderful surgery & is totally cured now!!” I said, “Well, her life is sure a heck of a lot better than it was!” And then he did it again & threw his arms up & said, “Ok then, she cured!!” We left his office & I decided I’m done with all these crazy GI docs!!! I feel like we will just show him!! Alexa IS NOT going to be in pain the rest of her life!!! I told Alexa to forget what he told her & put it out of her mind! We just need to show Heavenly Father that we have faith & do some extra praying & fasting!! I told her that Heavenly Father told her specific things in her patriarchal blessing & she has a purpose here in this life. She can’t fulfill that purpose while in this pain so I know he will heal her!! Here she has come off of all these meds & of course it is going to take time for her body to adjust!

Honestly, Alexa is really doing fabulous! She has been going out with her friends, going to church at the singles ward every week, going to PT twice a week & started horseback riding lessons once a week. I know it will just take time for her body to finish adjusting & find a new norm. She will get there though. This experience has made her have so much more empathy for others. I am sure she will be able to help so many people now. She has always had such a tender & caring heart but this has made her so much more compassionate, and also the rest of our family. There is always a purpose for the trials we go thru, we will just enjoy the journey!!

LADIES NIGHT OUT!

EASTER SUNDAY

With Taya in AZ

With Freestone cousins at Frozen Custard

2/16/15

Here is an update on Alexa, it has been 7 ½ months since her pancreas was evicted. She turned 19 in Jan & is doing pretty well for the most part but still has the horrible pain on her left side that gets most unbearable when she has a bowel movement. We have really been having a very hard time finding the right doctors to follow up with her. We have been paying an outrageous amount for health ins & I decided it was time to try to find something cheaper. I started looking & found one that was pretty good & was more than half our deductible that we had been paying, it was $5500 instead of $12,500. Instead of paying $670 a month it would only be $545 so I decided to check into it further. The biggest drawback was that it would not cover out of Utah unless it was an emergency. We decided to go ahead with it since we knew we couldn’t continue paying the higher one. We’ll just have to keep our fingers crossed that we don’t have to go back to Minnesota for anything. The good thing about changing ins was that we had a whole new group of doctors on this one!!

Well last week Alexa was scheduled for an endoscopy & a colonoscopy to see if he could see any reason for this horrible pain. We had switched back to our previous GI dr after the CT-scan the other one did. I wasn’t really that pleased with this dr either but with that ins we were pretty limited. We had the procedures scheduled with Dr. Alsolaiman since we had been seeing his NP. Tues Alexa had to prep for her colonoscopy for the next day. That meant she had to be on clear liquids all day & drink the lovely magnesium citrate drink that night to clean out. She did the clear liquids ok but when she started trying to drink the lovely drink she couldn’t keep it down, she was just too nauseated. I called the hospital & told them we would just have to do the endoscopy since she wasn’t able to keep it down.

I got Alexa up bright & early Wed morn since she had to be to the hospital by 7 AM. It ended up being a horrible experience!! The dr didn’t even come in to talk to us before beginning the procedure! After she came out he finally came in & told me that he had gone ahead & done the colonoscopy anyway since “he didn’t want us to have to come back for it.” I was surprised & asked him how he was able to see anything without her being cleaned out. He just said he could still see ok! I feel like he just wanted the money for it!! Then he went on to tell me that her lower colon looked fine but the upper colon had lots of stool. He asked me when she ate last & I told him she had some dinner the night before. He said that it was still there, that nothing is moving thru. It makes me think she may have a kink there in that spot that hurts so much or maybe scar tissue is creating a blockage. What I don’t understand is that she does have bowel movements, several a day usually, so something IS getting thru! Well, I asked the dr if he thought all of this could have something to do with her surgery & he said, “What surgery!!!!” I was in shock & said, “ummm, she had her pancreas & spleen removed 6 months ago!!!” He just said, “Oh, I wasn’t aware of that.” I couldn’t believe it!! That he would actually do anything to her without reading up on her history 1^st!! After I came home & thought more & more about it, the madder I got! I started reading reviews on him & found that he has done this before! He did an endoscopy on someone who had a condition with her throat & ended up tearing a hole in her throat & she had to be in the hospital for several days! The husband was so mad about it he posted his review over & over! I called his office & talked to the nurse & let them know how upset I was. Then I started looking for another GI to take her to. It takes hrs to go thru everyone on my new ins & read all the reviews but that’s what I did over the next few days.

I think I have found the right dr to take her to finally, I hope anyway! Every single GI dr in their office has really great reviews, not even one bad one in fact. I even prayed about this before making the apt! She has an apt on Thurs so we’ll see! I have also been trying to find an endocrinologist since the one we were going to, that we really liked, isn’t on the new ins. The funny thing is that there aren’t any with really great reviews so we are just going to the one with the best ones. We went to Idaho this past weekend & this morn Alexa has a really major attack where she could hardly breath. She keeps saying that that spot where it hurts so badly feels like a muscle & she may be right since when we gave her an extra muscle relaxer she finally calmed down. We are praying that somehow we can figure this thing out!!

Some good news is that Alexa bought a car. It is a cute little Kia, Forte. She really has been enjoying having a bit more freedom & being able to drive places with her friends. She has also met with a counselor at UVU & feels really good about taking a few classes. She has decided to major in business since she would like to have her own pet business someday. She bought a cute poodle to breed with her Golden Retriever so by now by the end of March we will have some cute Golden Doodle pups. Lincoln, her Poodle is an annoying dog that chews everything in sight so she will be taking him to obedience school soon!!!

Things are really looking up for her if we can just get this pain figured out!!