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. 

Day 54 of recovery

8/23/14

Day 54 of recovery

Its crazy how quickly time is going by.  Things have not slowed down at all but we are finally starting to get caught up a bit. 

Mon morn I started making phone calls trying to line up dr appointments for Alexa.  She has to get into the Gastroenterologist (GI), Endocrinologist, Pain doc, Primary Care doc, plus the dentist to get her crowns finished on her implants that broke right before we left so she won’t look like an oaky anymore!  When I called the ortho that morn about Tyson not being able to wear his rubber bands because of his headaches they told me to bring him in that morn for an emergency visit, so we headed there at 11:00.  They told him to try wearing some lighter bands & hopefully they won’t cause his head to hurt so badly.  He is still doing the exercises the doctors in MN gave him to do & taking the muscle relaxer & I think he is doing a little better.  After the ortho Tyson & I went & did a bit of school shopping before he had to go to his Sophomore Splash party.  He is really enjoying driving around & is a pretty good driver for the most part but is too used to driving the tractor & guns it a bit too much sometimes.  I always tell the kids when they’re learning to drive that they have to picture a glass of milk sitting on the dash & have to try to stop & start as smooth as they can so they don’t spill the milk.  Once when I told Tyson that he stopped too hard & spilled the milk he “grabbed the glass of milk off the dash & drank it!!!!”   The cheeky little thing!!!  

Tues Alexa had an apt with her pain dr later that morn.  She was kind of nervous cuz he’s the one who doesn’t let me come in with her & she has no clue what all of the meds are that she is on.  I told her just to keep saying, “I don’t know” & he would be forced to talk to me so that’s what she did.  He finally called me in to be with them.  I really like him & it didn’t really bother me that he wanted it just to be them, she needs to learn to talk to people on her own anyway.  He claims there’s some law that says he can’t have anyone else in there.  I found out that he really isn’t a “pain” dr, he really is for addiction.  He said he wanted to send us to a pain ctr over in Provo & he is really good friends with him.  He went on & on about how great he is.  He says he needs to send us there cuz Alexa’s prob is more of chronic pain & not addiction.  I told him I would go home & check him on our ins & call them back for a referral.  I was supposed to go to work that afternoon but got so busy trying to get my house in order that I didn’t make it.  I have mounds of papers like bills & ins stuff surrounding my chair in the fam room & we are still digging clothes out of our suitcases!! 

  

Wed Alexa had an apt with Dr. Mizell, the GI.  He is the one I really liked before that helped us out when she was at the “evil” Primary Children’s but he was horrible this time!!  He came in & told me that he hadn’t had time to even open the emails from Dr. C & Marie Cook, Dr. C’s nurse!!  He explained that he gets thousands of emails & just doesn’t have time to look at all of them!!  As we were talking I happened to mention something about Alexa’s duodenum being removed & he was all surprised & said, “They removed her duodenum too?”  I said, “So you don’t even know what they did in the surgery?”  He apologized again & said he just hadn’t had time to read anything!!!  I left there without any confidence in him at all!!  I am now looking for a new GI doc!  If anything were to happen where we had to go to the ER the GI doc would be the one they would call in & I doubt he would have any clue at all what to do!  Besides, if Dr. C talks to him we will for sure have to go back to MN for our 3 month checkup & testing instead of having them done here!!  Also I looked online & saw the pain dr wasn’t on our plan so I called ours back & begged to stay there, they called me back & said they called our ins & found out the other one is on our plan & already got us a referral & everything so we are seeing a new pain dr now too!

Today Alexa woke up feeling extremely nauseated & sick.  She has been running a low grade fever for the past few days & her blood sugar has been a bit higher so I will email the doctors in MN tomorrow to see what they think.  I happen to be out of one of the nausea meds that I have been alternating so we’ll just have to get by.  If I had a good GI things would be better!!  This girl named Carrie that used to be in YW’s with her moved back into our ward & was at the RS dinner Thurs night with her Mom & was excited to see Alexa.  She said she would go to singles ward with her & when I told Alexa that she was really excited about it & told Carrie she would go.  She did manage to get ready at the last min & even looked really cute with makeup on!  I dropped them off on the way to my ward.  Alexa managed to make it thru Sac mtg but when I texted her during SS to see if she was ok she said her pain & nausea was too bad & she ended up walking home.  I was able to stay for the whole 3 hrs though for the 1^st time in over 2 yrs!!   It’s really great to be back & have Alexa finally getting better!!  We can finally see a light at the end of the tunnel!!!

Day 48 of recovery

8/17/14

Day 48 of recovery

I have been so busy trying to get Tyson ready for school & get some food in my bare cupboards & fridges.  I spent almost all morn Fri making the necessary doctor appointments for Alexa to all of the different docs she will need to see & getting Tyson registered for school & drivers ed.  I was shocked when I called the number for a top endocrinologist that I found & he personally answered the phone!  That gave me the opportunity to get some questions answered.  He is not seeing new patients but I feel confident going to the doctor he sent us to now & we were able to get an appointment quickly.  The next couple of weeks will be busy!!  Ty’s parents left that morn too.  I don’t know why they were in such a hurry to get away & we were sad they weren’t staying around longer.  I didn’t have time to put any of our stuff away yet since I had to take Tyson to get his permit & go school & grocery shopping.  We spent about an hr there in the DMV getting his permit & he passed the test the 1^st time, yay!!!  Then he was anxious to learn how to drive so we went to a near empty parking lot & he drove till he got the hang of it & felt comfortable enough to head to Sam’s Club.  He really isn’t a bad driver but I am just way too old for this!!!  I am so glad this is my last time I have to do this.  I told him teaching a kid to drive & potty training are the worst parts of parenthood!!  We found a few school clothes for him there & my cart was overflowing!  I spent over $400 & still wasn’t finished but we headed home.  Ty & I went out that night & Alexa had Natalie over to watch a movie.  Sat I spent the whole day trying to organize my house & unpack but still didn’t finish.  I had a huge mound of papers to go thru!!  Tyson went to a party & dance so I had to stay up late to pick him up but he had a great time.  Alexa enjoyed having Vickie over.  It’s so good to see her feeling so much better but it will be great when she is completely healed!!  Today Alexa got up early & we went to Chelsea's singles ward to hear her speak & then went to see Tonya & Kyle's new house which is over by Dana's.  Then we went to their ward to hear them speak & watch their kids for them.  They all 3 did a marvelous job & succeeded in making me cry.  Tonya's kids were all pretty well behaved until close to the end of Tonya's talk Sadie suddenly looked up & saw her Mom speaking & decided she needed her so I had to take her out.  Alexa started having some pretty intense pain also so she sat in the foyer with us.  The kids are all coming for dinner so if will be good to be all together again!!  Here is some pics from our trip home.

  

I can’t believe I forgot to talk about the last night Chelsea & Shayla were at RMH!!  I wrote all about that day but didn't talk about that night when Kaia came over to visit!!  We had so much fun visiting & playing games!!  We played Apples to Apples with her & Tyler.  

Alexa loved this Golden Retriever that was here! It was his last time coming to the RMH so they were having a celebration, his name was Paul.

Chief Tyson protecting Princess Alexa.

Indians! Nice Squaw, huh?

Both bull-headed!

She won a whole 3 cents in Deal or No Deal & tried to cash it in after, haha!!  The cashier thought it was pretty funny too!

 

The church that is still in use

We loved Mtn Rushmore!!

Alexa started feeling sick here at Martin's Cove but we watched a little video 1st. She's wouldn't get out for pics.

The kids were so excited to get home & Alexa was so happy to see the yard & her room decorated!!

Daisy & Tux were excited to see us. Daisy showed it much more than Tux did, haha!! Cats are kind of snobbish sometimes.

The huge welcome home banner that Laura Trevenen made for us!!!

Day 44 of recovery

8/13/14

Day 44 of recovery

Mon was a really long day.  Tyson had a morn appointment with PT so Ty took him to that.  Alexa had one with the GI about the same time so they dropped us off at the hospital 1^st.  Dr. Schwarzenburg, the GI dr, gave the ok to go home.  She told us we needed to get a medical alert bracelet for Alexa to wear saying that she doesn’t have a spleen.  She said that she shouldn’t go to countries like India, Africa, or places that don’t have good medical care.  Also if she gets a fever of 101 degrees or more we have to take her to the ER.  Ty was able to pick us up after we were done since they were done at the same time so we didn’t have to take the shuttle.  At 12:30 Alexa had an apt to get her feeding tube removed so we headed back over there & Chels came with us this time.  When we 1^st got there I guess the nurse made a comment that she was going to page Dr. C to come & remove it but I wasn’t really listening.  We waited & waited & waited.  After 45 min Alexa finally said, “She said she was going to page Dr. C, I thought he said he was going to be gone & one of his fellows was going to take it out.”  I went out & talked to the nurse & she said there was a note with another doctor’s name by it & it said to call Marie if she had any questions.  She had just paged Dr. C again & put a call in to Marie.  We waited there clear till 2:15 & she couldn’t get anyone to come so we finally left to go to Alexa’s apt with Dr. Clavel in the next bldg. over.  We were there for an hr & he gave the ok for Alexa to go home too.  He wrote out a list to help her get off some of her meds & prescribed everything.  I got a call while we were there from the nurse telling us that there would be someone there to remove the tube when we were done there so we headed back over.  It turned out to be pretty painful for Alexa.  She said it was a lot worse than getting her picc line out.  When we got back to RMH Ty said Dr. C told us that she needed to lie still after getting it out for 30 min & that dr didn’t have us do that.  She was hurting so bad that she just went in & fell asleep.  We had planned on going to this beautiful lake called Lake Harriet that people told us was really pretty.  We were planning on riding the train around the lake & renting some paddle boats but Alexa was just feeling too bad.  I finally got her up & we decided to go look for a place that had juicy lucys.  Everyone had told us about these hamburgers called juicy lucys that were supposed to be so amazing.  They said they mix the cheese in with the hamburger meat before cooking them.  People told us the place that had the best ones was called Matt’s bar.  We drove around the lake with Alexa moaning the whole way & it was really pretty.  We put Matt’s bar into our GPS & it took us there but when we got there we decided against getting out of the car.  It was an actual bar without a restaurant attached & it was in a very scary part of the city.  We found another place called Annie’s parlor that looked really good but since Alexa was still hurting so much I went in with Chels, Shayla & Tyson while Ty & Alexa drove around a while.  It was really good but they didn’t have the juicy lucys there.  I guess we’ll have to try them next time we come.

Tues morn Ty took Shayla & Chels to the airport at 4:45 in the morn.  We spent the whole day packing.  It was amazing how much junk we accumulated in that time we spent there!  We took a break & went to a Mexican restaurant for lunch that was really good.  Tyson had an apt with Dr. Clavel that afternoon.  Dr. Clavel says Tyson is challenging, haha.  I was able to get Delta airlines to credit the money for Tyson’s ticket but Tyson has to use it within a yr.  He will fly back with Alexa & I in Dec for her 6 month checkup & he can see the doctors too.  He has lots of exercises to work on to learn not to be so tense & we will also get acupuncture & massage done regularly.  We got most of the stuff loaded in the car that night & woke up at 4:30 this morn to head out.  Alexa seems to be feeling better & we are already weaning her off the pain meds!!!  I emailed Dr. Bellin her numbers for her blood sugar for the days since she got completely off tube feeds & she emailed back & said we don’t have to use insulin to correct anymore unless her number is 140 or more.  So now she is only on a little insulin just in the mornings!!  I also have found an endo dr there in Utah & had the records sent over so if they can do all the tests that need to be done the end of Sept we don’t have to come back to Minnesota till Dec!!

Its 11:45 now & we finally made it to Cheyanne, Wyoming.  It’s been a very long day but we feel like we have seen a miracle!  We stopped in a town called Wall, South Dakota & ate lunch & went thru some of the shops there.  It was a big tourist trap but it was fun.  Then we headed to Mtn Rushmore & loved it.  I was there when I was little but don’t remember much about it except being really bored.  We sat thru the movie about it & enjoyed walking around, it’s really amazing.  Then we drove & drove.  South Dakota is absolutely beautiful!  I really have never seen trees as green as that!!  We decided we would drive till we got to Douglas Wyoming.  I got on my trusty little smart phone & started looking & calling for a hotel.  There was absolutely nothing available.  I called every single one in Douglas with no luck.  Then we started looking in places nearby & even stopped at a few of the “dumps” & every single one was full.  We decided to go on to Cheyanne & again had no luck there.  We finally decided to stop & say a prayer.  We were so tired & our car was packed so full that there was hardly room for us to sit, let alone lie down.  Except for Princess Alexa, she had a nice mattress & was all sprawled out, haha!!  After our prayer we drove to a hotel & I went in to see if there was a room & was so frustrated when the guy said, “We just barely booked our very last room available exactly 2 minutes ago!!!!”  I went back out & we went to the next one & right when I asked the lady she said, “Well, I just sent someone to look at our only room available & make sure it is clean.”  I waited & when she came back she said, “It’s clean but there’s a leak in the ceiling.”  Then the other lady said, “Well, we did have one but don’t anymore!”  I was about to walk out & turned around & said, “Just how bad is that leak?”  She said, “Well, it’s really not that bad but it probably means the a/c doesn’t work.”  I asked if I could see it & she took me up there.  It was a perfect room & was very, very clean with 2 queen beds & was nice & cool!!!!”  I told her we would take it.  I hurried out to tell the others who were waiting in the car & went back in to pay.  When I asked her how much it was she gave me a deal cuz of the leak!!!  If you don’t think Heavenly Father answers prayers you are wrong.  We found that room about 10 or 15 min after our prayer!!!  Another thing we are so grateful for is that Alexa has been doing so great today.  She’s had some pain & nausea but it is so obvious that she is getting better & better every day!!  I have tons of pics but will have to post them later since I can't find the cord to the camera.      

Day 41 of recovery

8/10/14

Day 41 of recovery

Saturday we had a fun day, we went on a cruise on the Croix River.  We had to be there by 11:30 & it was about 45 min away.  It was so much fun & very relaxing!  They fed us a wonderful buffet lunch with some of the best cookies we’ve ever had.  Everything was really good.  After lunch we sat up on the deck & looked at all the huge houses that we passed.  After that we shopped in some of the little shops they had there on Main St.  We had a wheelchair with us but Alexa ended up feeling extremely sick the rest of the day.  We came back to the RMH & she was very, very nauseated.  I think it may be cuz of taking most of her meds by mouth now & her body will have to adjust to it.  Guess who we met up with that afternoon?  Jenna Claypool came to RMH to visit with us & we loved seeing her!!!  For those who don’t know, she was in our singles ward there in Utah & has moved back to Minnesota.  She even stayed to eat dinner here with us!  Later that night Chels, Shayla & I decided we needed to do some more shopping so we headed back to Mall of America & found some great deals.

Today we said goodbye to our friends here, the Clements.  They headed back to Arkansas & we are going to miss them so much!  We ate brunch with them & took some pics before they left.  Alexa made it thru the entire Sac mtg today, yay!!  We came back & changed clothes & then headed to Minnehaha Falls.  It was pretty crowded but we were able to walk down to see the falls.  After that we came back & had to make our own dinner since RMH wasn’t cooking tonight.  I don’t know what I’m going to do when I get home & have to start cooking every night, haha!!  I’m a bit spoiled now! 

Alexa has been doing pretty well, if we could get this nausea under control, she would be great!  Tyson has been doing the exercises the doctors have given him & I thought he was doing a lot better too but on Fri night he had a pretty bad attack.  They say it will just take time so hopefully they will get fewer & fewer.  Ty is so anxious to get back home he can hardly stand it.  He wanted us to try to make our trip back in 1 day but I don’t think that is going to happen with Alexa.  I just think it will be too hard on her.   

Here are some youtube videos playing on the playground at Minnehaha:

https://www.youtube.com/watch?v=3ITKTuzYb4o

https://www.youtube.com/watch?v=9WWpJIpscD0

https://www.youtube.com/watch?v=Ko5gnhE-9tQ

Ty & Tyson found a project here at the Ronald McDonald House. They gave them all the supplies to paint the gameroom.

Our cruise ship at Stillwater, MN

The fabulous lunch buffet on the ship

One of the mansions along the river

Ty was impressed with the new bridge being built

This was outside candy shop

Chelsea, Jenna Claypool & Shayla found a new beau!!

Shayla was happy that his feet were bigger than hers, haha

Us with the Clements

This is Tyler, Alexa & Austin. They all had the same surgery

The queens

Minnehaha Falls

I was impressed that Alexa made it up all these stairs without any probs, it about killed me!!

Playground at Minnehaha, they had some awesome equipment!!