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.  

Day 61 of recovery

8/31/14

Day 61 of recovery

Things haven’t slowed down yet & I’m still tired!! 

Tues Alexa & I had an apt with Dr. Sharp.  Since he is our Primary Care Physician I decided we’d better get into him so he would have a record of everything she is on & what is going on.  I was going to have him look at this cyst on my back.  A few yrs ago I went to this other dr & I had 3 of them for him to remove.  He only removed 2 & said he couldn’t get the other one out & sewed me back up & it’s getting really big.  Well that morn when I got up to work out I had some kind of attack like the ones I’ve had before when I thought it was my gallbladder.  I couldn’t work out & it lasted about 2 hrs.  I called Dr. Sharp’s office that morn & he wanted me to go in for a ct-scan.  Luckily I hadn’t eaten since you had to be fasting for the test.  They scheduled it for noon.  Tyson wanted to go with us to Dr. Sharp’s to get his warts frozen off so we all went in.  After he finished with Tyson & he left & rode his bike home & then we talked about all of Alexa’s stuff he asked me if I had a cyst.  I totally forgot about the cyst on my back since I was thinking about my attack that morn & told him, “I don’t think so.”  We talked a lot & then I left for my scan.  I got over there & was drinking my yucky drink they make you drink & remembered that I didn’t have him look at my back.  I went out in the hall & called over there & the girl said, “Isn’t that what your apt was for, haha?”  She told me I could come back at 2 & he could look at it.  When I went back over there & Dr. Sharp walked in the 1^st thing he said was, “I asked you if you had a cyst!”  Ty had a great time teasing me about this saying that it was like going to the store for milk & him calling to remind me about it & me still forgetting it!  That’s what happens when I have 50 billion things on my mind

Thurs was a rough day.  Alexa hasn’t been feeling well at all.  She still keeps saying she just feels sick.  She also is still running a low grade fever anywhere from 99.5 – 100.6.  Sometimes it is normal though.  I’m pretty sure it must be some of the medicines she is on that is causing some of this.  She is weaning off her patch she has been on & it has been really tough.  I have read about some of the others on the pancreas facebook site who have weaned off this patch & they say it is really hard on them.  She is on the lowest dose now & only has a few more days so hopefully things will get better soon.  It’s such a long, slow process!!  It’s also a challenge keeping her bowels regular.  I know, too much info, but that’s what we have to talk about in our house all the time now, haha!  It’s just normal conversation now!  One of the most common causes for these kids having to go to the ER after this surgery is from a blockage & I am determined that she is not going to get one!  I give her an herb called Cascara Segrada & it keeps her pretty regular.  Thurs morn Tyson & her had to go to the dentist for cleanings.  She felt awful but had to go anyway.  Right after that we rushed home to get lunch & had to go clear to the Univ of Utah hospital for her endo apt.  We really liked this dr.  His name is Dr. Jones.  He came in & told us that he spent part of the night up worrying about this apt.  He thought that she had just had her pancreas removed there in Utah by someone & he thought he was going to have a full-blown case of brittle diabetes on his hands.  He had educators on stand-by all set to come in to educate us on how to take care of things.  He said, “You don’t know how relieved I was to get your records from Minnesota & find out that you had the Auto Islet Transplant & you should have seen the huge smile on my face when I saw your blood sugar numbers they sent to me!!  I was so relieved!!”  He was so interested in the surgery & wanted to hear everything about it.  Another thing has been going on this week that has been causing me so much stress, I have been trying & trying to find a good GI dr to take Alexa to & have spent hours on the computer researching.  I finally found several who had really good reviews & seemed to have some training on the pancreas, etc.  They were at the U hospital.  I called there to get an apt & had it all set up for Marie, Dr. C’s nurse to call & give them all the info they needed, when they called me back & said I couldn’t go to either of those doctors since Alexa had already been seen there by Dr. Adler.  For those who have received my letters before, you will remember that Dr. Adler is the one we went to before we knew what was wrong.  He had Alexa actually stand up & turn around & said, “Look at her, she looks so robust.  There is absolutely nothing wrong with her.  She just needs to see a psych.  I’ll do an EUS if you want but I don’t think I will find anything.”  I even went back to him a second time & brought Ty with me just to make sure I wasn’t being hasty since he was supposed to be a pancreas specialist & he actually had her stand up & said the same thing again.  When we left there Ty & I both said he was a real jerk!  Well, it turns out that the U has a policy that once you’ve seen a GI there you can’t switch to another without special permission & the person we needed permission from happened to be out of town for 2 weeks & there was nothing they could do about it till they got back.  I was steaming after I got off the phone with them!!  Well Dr. Jones was able to see the notes that Dr. Adler had written in his computer & it was really quite funny when he said, “Alexa, you really look rather pale & skinny to me & I see a note here from another doctor here at the U that says “she looks robust.”  We started laughing & Alexa said, “That would be from Dr. Adler. He thought I looked robust & then she told him about how he had her turn around & told her that there was nothing wrong with her & she needed to see a psych.”  Dr. Jones just shook his head & said, “Would you mind if I sent these record over to him? It wouldn’t hurt him to learn something!”  Then he said, “To be honest though, I would have had a hard time believing it was genetic pancreatitis too. You know, you’re 1 in a million.”  I told him we knew that but Dr. Adler didn’t have to be so arrogant about it & so quick to decide there was nothing wrong & it was all in her head!!  Anyway, Dr. Jones is sure they can do the exact testing that MN needs done so it looks like we won’t have to go back there in Sept & can wait till Dec.  He said we will just have to plan on spending about 2 ½ hrs there in their office the end of Sept. 

Back to the GI, I decided to see about going back to Dr. Alsolaimans over at Central Utah Clinic.  He was ok, we just couldn’t understand him very well.  I called over there & found out that he was going out of the country to Turkey the next day & we would have to see his NP, which was ok I guess.  We liked her but once when we went she said we had to see him for our problem.  I found this other dr there at Central Utah Clinic & called to ask them about switching to him & the girl says, “Well if you switch to him you won’t be able to switch back to Dr. Alsolaiman!” Evidently everyone in Utah has that same policy!  I felt like saying, “Just who is paying the bill?”  It seems to me we should be able to choose who we go to!!  I posted something about this on facebook & so many people from other states were saying they had never heard of such a thing so is this just a Utah thing?  I am really angry about this & seriously ready to move!!  Not to mention we have to pay over $350 to put our kids in high school!!  I about flipped out when we 1^st moved up here & found that out!!  They told me it was cuz our property taxes were lower than other places but ours are higher here than they were in AZ & we didn’t pay anything to put the kids in school unless they were in extra things like sports or something.  I guess we are sticking with Alsolaiman & Marie says she wants them to call her while we are in the office.  We will see how it goes this week.