TEN MONTHS AFTER SURGERY!!!

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

7 1/2 months after surgery

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!!

Alexa's Senior Pics!!

Alexa with Siblings

Alexa getting her Seminary diploma

Lincoln

Daisy

Alexa's new Kia, Forte named Jesse

6 months after surgery

12/20/14

Alexa is finally at her 6 month mark!!  It really is amazing how much better things are now & I’m sure they will continue to get better & better as time goes on.  We just returned from our trip to Minnesota & had all her testing done & met with the team of doctors there.  Everyone is so pleased with her progress.  Dr. Chinnekotla is especially happy about her being on insulin for so little time!  When he found out that she was completely off insulin he asked when she came off.  When Alexa told him she stopped in Oct he said, “Wow! That is excellent!  You get a 10 for that!!”  He was so happy about her progress that he gave her a big hug!  He asked her what her plans are & she told him she was planning on going to college.  He said, “When you graduate from college give me a call & I will celebrate with you by having a couple of beers!”  Haha!!  He is such a kind man & spends his whole life making other’s lives better!!  I don’t think he ever takes off work!! 

We have been very busy trying to fit all the dr appointments in before the end of the yr  which is when our deductible will start over.  Also, Alexa is still having some major pain with her bowel movements.  We have been going to a dr over at the U hospital & have been pretty frustrated since she is only in the office on Tuesdays, which happens to be my busiest day of the week!  I had emailed Marie in Minnesota about Alexa’s pain with BM & she wrote back & said that Dr. C wanted her to have a CT-scan.  That was much easier said than done!!  She had to fast & then go early in the morn to drink that horrible, chalky drink.  She was so nauseated & it ended up taking her most of the morn to get it down.  Later that week Dr. Byrnes from the U hospital called about Alexa’s scan & told me that everything look fantastic & perfect.  I was a bit skeptical & decided to call the imaging ctr when we hung up & have them mail a copy to Minnesota.  After another week of Alexa hurting I finally got an email from Marie telling me that they had received the disk & Dr. C had looked at it & said her colon was completely full of stool & she needed to do an extensive cleanse to get it out.  We were supposed to go in to see Dr. Byrnes the next day but I called to let them know what Dr. C had said & told them we wouldn’t be coming in since we needed to stay near a bathroom all day.  I was pretty upset with Dr. Byrnes!  That day was a pretty miserable day & it made Alexa pretty sick for the whole week.  I had a feeling we didn’t succeed in getting everything cleaned out so I set up an apt with the nurse practitioner of the GI office we used to go to & asked if we could go in for an xray to check the colon before our apt.  We went in to see her the following week & sure enough, she said there was still a significant amount still in there.  She gave us samples of a medicine that is supposed to clear things out over a 2 week period by just taking this one pill a day.  She told us she wouldn’t have to take anything else with it.  I was a bit nervous since our trip to Minnesota was 3 days from then but I knew it was important to get her cleaned out.  We started on that pill the following day which was Fri & by Sat she was getting the job done, haha!  By Sun it was becoming a real problem & making her so sick that I thought I was going to have to cancel our trip.  I couldn’t imagine having to take her on a plane in that condition!  I prayed about it & talked to Ty & we decided we still needed to go since they would know what needed to be done.  We would just have to make sure we sat by the bathroom on the plane! 

The Minnesota trip turned out really well as I said before.  I was a bit surprised when I asked Dr. C how long she would have to be on 2 of the medications that she is on & he said, “Forever. Don’t ever take her off of those!”  Also her GI dr there was concerned that I had switched her to a different multi vitamin.  She said the one they had prescribed was the only one the people who didn’t have a pancreas could absorb.  She told me that if I wanted to keep trying her on this one if I thought it was so good we should get her vitamin levels checked in a month to see if they are ok.  No one was concerned about her being constipated still since it seemed that she was getting cleaned out but that all changed.  By the time we returned home she had quit going again & after the 4^th day I started giving her more stuff along with that pill that was supposed to be so wonderful.  It is working again but we will have to get another xray & apt with the GI to check after Christmas.  She is still having so much pain with each BM & all the doctors there in MN seem to think it is connected with her endometriosis.  I took her to a new OB-GYN dr last Fri over in Provo & came away quite depressed.  All the options he gave us were things I really don’t want to do with someone as young as her who has already been thru so much.  I am looking into some more natural ways to deal with this.  I have dealt with this all of my life & have 4 other girls dealing with it.  I don’t know why Alexa has to have the worst of it but I don’t think we should put her on another medication!! 

She is doing really well coming off her narcotics & should be able to drive very soon!  Oh, also she has completely passed her GED test & got her diploma!!  YAY!!  She also finished the Book of Mormon & has graduated from seminary!!  YAY!!!  She has been looking into starting college, looking for a job & a car!!  I think she will probably start going to the singles ward even!!  I am so happy that she has been moving forward with her life!  She is sad that her best friend & cousin, Vickie Bentley, has left on a mission but hoping to be all better by the time she gets back so they can room together.  She enjoys hanging out with her other best friend & cousin, Natalie & her sisters.  I really think that once we get this constipation cleared out & her endometriosis under control she will be on the road to 100 percent!!  These pics show the difference the 6 months has made!!  I look back on them & wonder how we made it thru.

This is day 2 & 4 of recovery. It was so hard to watch her suffer so much!

Here's Alexa getting ready to get her IV for her mixed meal test to make sure her islets are working properly.

Here's the front of the hospital. It was freezing & Alexa didn't want to get out since she was in shorts & a t-shirt, haha!

Mall of America!

This is the old fashioned dress shop that the girl's love.

Alexa had to get her own build-a-bear. She dressed him in a tux.

Santa's shop all decked out!

WEEK 15 1/2

10/17/14

WEEK 15 ½

Alexa is definitely doing much better now.  We are so grateful for the doctors who took the time to learn how to do this surgery & most importantly to our Heavenly Father who gave them the knowledge to make this possible.  She still has her bad, horrible days for sure, but she is able to get out & be sociable now where before she could hardly leave the house.  We have set a family goal to try to attend the temple once a week so I take her & Tyson to do baptisms for the dead & we also have been doing lots of family history work.  I know that if we can spend our time looking for ways to serve others & if Alexa can somehow focus her mind on helping others instead of dwelling on her pain all the time she will be able to heal faster.  Her natural tendency is to feel sorry for herself & our natural tendency is to baby her.  She has started going to physical therapy & they push her pretty hard.  It is so much better to have them do it than for me to nag her about it all the time!  She also is taking voice lessons & it is helping her to build up her breathing, sort of a PT in & of itself but she enjoys this one! 

She went in for her 3 month testing at the diabetes ctr at the U hospital in Salt Lake the end of Sept.  We were there for about 3 hrs & she had to get blood drawn 3 times.  The next day Dr. Jones called & said the results were fantastic!!  He said as far as he was concerned she could go off all her insulin!!  I didn’t take her off yet since I wanted to send the results to her doctor in MN to make sure they were ok with it.  Yesterday Dr. Bellin emailed back & said Alexa can start weaning off her insulin.  She wants her to continue to test her blood sugar 2 times a day for this 1^st yr just to make sure the islets continue to work but she said her numbers look great!!  This is such a miracle & we couldn’t be happier!!  She is also weaning off her other medications & will hopefully have improvements in her bowel movements & stomach pains as time goes on.  We know we just have to be patient & take things a little at a time. 

Today we are going back to the place to get more packets to study for the GED test.  I think she is about ready to take the actual test.  She is also about halfway done with seminary & will soon be able to go to institute.  Next week she will be getting her molde done for her permanent crown & hopefully this one really will be permanent!  These implants have been a nightmare!!  We have our flight set up to go back to MN the week of Dec 14^th.  Hopefully the weather won’t be too bad back there.  It really is amazing how well Alexa is healing & we know it is because of all of the faith & prayers of all of our family & friends!! 

11 weeks

11 weeks

9/15/14

Update on Alexa is not good.  I wish it could be better & if I had written this the beginning of the week it would have been.  She was doing so well but then, about Thurs, started feeling so bad again. 

 

Tues Alexa managed to get out of bed early enough to go take her practice GED test, even had her hair & make up on & looked very cute!  It took her about 1 ½ hrs to take the test so I ran a bunch of errands while waiting.  She did very well on the language part but needs to brush up on her math a bit.  It’s been a while since she has done long division without a calculator.  They gave her about 5 packets to take home to work on & after she finishes those she can take them back & then go to UVU to take the real test.  Right after we finished there we went to Salt Lake to see the new GI dr at the U hospital.  We actually liked her ok but she really didn’t seem to be very familiar with this surgery.  I don’t really know if anyone here in Utah is familiar with it though.  I was supposed to talk to her about Alexa running that low grade temp but for the past few days she hadn’t been running it & had been feeling better so I just mentioned it but she really didn’t say much about it since she was feeling better now.

  

She was so pale & running a temp again yesterday.  I wrote to Marie in Minnesota last night telling her what was going on & asked her what she thinks it might be.  I told her I would get an apt with our GI here but told her that I thought she would need to talk to her since I felt that she isn’t too familiar with this surgery.  I knelt down yesterday morn & asked Heavenly Father if He would give me some guidance & the thought came to me that possibly the Cascara Segrada, the herb that I give her to help her not get constipated from the medicines, could be a bit too harsh on her system.  I went in right then & took it out of her pills for the day.  She did seem to feel better later that afternoon but I do need to give her something still, I don’t want her to get stopped up.  I may just give her less of it & try having her eat pears like my Dad says.  I know the pain dr is planning on weaning her down more off her meds this week so maybe that will help too.  It’s really so hard to know what to do!!!  I am so grateful that Heavenly Father is aware of us & gives us immediate answers when we need them!!  We always have the Priesthood also.  Alexa knows that if things get too unbearable, all she has to do is ask for a Priesthood blessing & immediately she feels relief!!  I am so grateful we have this power on earth today & it was restored thru Joseph Smith!!  I am absolutely positive that is why we are able to avoid going to the ER so many times.  There is times when Alexa is curled in a ball & there in no hope for relief & we have given her everything we can but she knows that thru His power she can always turn & find the help that she needs.  We are hanging in there.  Things are getting better.  We knew this would be a long recovery & we just need to be patient & take things one day at a time.