ALEXA'S JOURNEY TO A NEW LIFE: July 2014

7/31/14

Day 31 of recovery

Today was a fun day with much pain mixed in with it. RMH was having a field trip to this ranch to do crafts & ride horses, two of Alexa’s favorite things to do. She was really excited about it & made sure we signed up to go. She was so worried we wouldn’t get the permission paper filled out in time. This morn we woke up early, well 9:30 is early for us, & got ready to go. We met downstairs at 10:30 & told them we would drive our own car in case we needed to come back early so we just followed them over. It was about ½ or 45 min away but was beautiful along the way. When we got there Alexa was in heaven when she saw the 3 or 4 dogs that were there to greet us. There was one dog named Penny that only had 3 legs that she especially loved. We started out by touring the different barns & buildings & meeting all of the dogs. Then they had the girls & boys divide up & the boys went to the stables & mucked them out. One of the boys was especially happy to have Tyson there with them! The girls went to do the craft which was to spray paint some horseshoes. Then they traded & the girls cleaned the stalls while the boys did the craft. Then we all sat in the grass & ate a nice lunch that the RMH had furnished. After that they met the horses & learned how to groom them. Alexa got to groom a huge horse named Stella, she was beautiful. We had realized at lunch that we had forgotten to put the poker in Alexa’s diabetes test kit to test her blood with so we decided we needed to head home since she is on a new formula in her tube & they told us to watch her blood sugars closely for a while. The kids didn’t get to finish decorating their horseshoes & ride the horses. Alexa probably shouldn’t have ridden anyway. By the time we got home she was in quite a bit of pain so she just rested for the rest of the afternoon till it was time to go down for dinner. After dinner it was Bingo night there at RMH. That is the best night of the week around here! They have a huge amount of prizes! Alexa & Tyson both won & Alexa won about 3 different times! We went back to our apartment with 2 arm loads of toys & stuff. It was a lot of fun!! I was planning on buying gifts for all the grandkids & now I’m so glad I hadn’t yet! They had so many things there that they are going to love!! After Bingo we went back up & Kaia came to visit us & brought Alexa a beautiful bouquet of flowers! She has been such a blessing in our lives & I’m so grateful to Craig Parry for introducing us!! Something else that is really cool, I found out that she knows my 1^st cousin, David Skouson!! They lived in the same ward in Manhattan!!! Such a small world!!! She wouldn’t let me take a pic of her tonight but I will manage to get one sometime, haha! We talked to Austin & his Mom, Ann, tonight at dinner & they told us they had seen Dr. C today & he is expecting them to be able to go home by Aug 11^th!! Can you believe that? He got his picc line out today & he is getting switched to only 12 hr feeds on the feeding tube!! Ty was pretty upset cuz we didn’t have our appointment with Dr. C this week. Alexa is doing just as well & she probably could have got that darn picc line out & had her feeds switched too. I emailed Marie, the one in charge of scheduling, & she said they would make sure we had an appointment for next week with him. I don’t really think Alexa is ready to go home just yet though, she was in quite a bit of pain tonight. It would be nice if things worked out to go home in a couple of weeks thoughJ! If we had good doctors at home that knew how to deal with the post-surgery stuff, I would feel better about going.

Waiting to go to the ranch

Gfather would say, "ewwwww!!"

This was Dakota, he loved to play ball!

This is Penny, the 3 legged dog. She belonged to an Amish farmer & got her leg caught in a hay thrasher & had to have it amputated. Alexa loved her so much!! The barn behind was the craft barn with a cute little kitchen inside.

Tyson mucking out the stalls

This horses name is Annie

I loved this cute little house. I love the boy next to it too!!

Alexa grooming Stella. She was saying, "Your mane is a mess! How do you expect to attract any boys with it messy like that?"

This is our little kitchen that we share

One of the sitting rooms & dining area

The cute little playhouse in the back yard, Tyson doesn't really fit very well, haha!

Cute little bridge in the back yard

These are some of the huge kitchens & dining areas at the RMH

Here's 3 kitchens right in a row with pantries full of food to help yourselves to!!

The long hall going to our part of the RMH

Play area in our section

BINGO!!!

BINGO PRIZES!!!

Alexa had such a hard time choosing what to take!

7/30/14

Day 30 of recovery

It’s been exactly a month today that Alexa had her surgery & she is really doing quite well!! We stay so busy around this place that I haven’t had a chance to update. Sun we were able to go to Sacrament mtg but had to leave right after the Sacrament. We thought we weren’t going to be able to make it at all since Alexa had a very bad night & was really nauseated & sick all morn. She really wanted to go though & managed to force herself to get ready. She looked really cute in her new dress even if she didn’t feel well. We had trouble trying to decide where to put her feeding tube & 1^st had it thru her sleeve, which didn’t go well, so we just had it coming out the bottom. Wish we had thought about that & got a skirt instead, haha! The rest of the day was pretty much shot since she took a shower that afternoon. Anyone who has had a major surgery knows that taking a shower zaps all of your energy!

Mon we had several doctor appointments for Alexa. I thought we had one at 11:15 so she had to get up & get ready early, for her that is early. When we got there they told us that it wasn’t till Wed, I had written it on the wrong day, haha! At least she was up & ready on time though!! We went back & picked up Ty & Tyson & headed to Walmart. We decided we needed to let Alexa go down each isle & find some foods that she would like to eat, the sooner she gets to eating semi-normally, the sooner she can be rid of this feeding tube! By the time we finished there we were all pretty hungry & there happened to be a Burger King nearby. I know that’s not the most nutritious choice of foods but it is Alexa’s favorite & that is the most she has eaten since surgery. She had 2 doctor appointments that afternoon, one to the endocrinologist & one to the pain dr so we hurried back for those. Ty had quite the adventure while we were at the doctors. We decided we would just go to the hospital & Ty would take the shuttle back to RMH. After he left I remembered that we had milk & a few frozen things in the back of the car so he said as soon as he got there he would come back. As I was talking to him he sounded really stressed. He told me the shuttle driver was new & it was his 1^st time driving. Every time he turned a corner he went over the curb & he didn’t know the way from the hospital to RMH, which is only about 2 or 3 min away! When Ty got back he told us that at one point the driver took out one of the street signs & scratched the whole side of the shuttle, then he went down a one-way street, the WRONG way & everyone was yelling at him that he was going the wrong way. He ended up on a totally wrong street down town & that is when Ty asked if he could let him out there & he just walked to the RMH! He went up & got a few things & then had to get on the same shuttle with the same driver to come back to the hospital, haha! He came up to Dr. Clavel’s office where we were & got the parking pass from me. I was pretty distracted cuz Dr. Clavel seemed very annoyed that we were interrupting Alexa’s office visit. He doesn’t have much of a sense of humor & is very busy. Ty got down to the car & realized that I only gave him the parking pass & not the keys to the car, haha! He had to come clear back up to get the keys, went & got the car, & then decided to just wait for us instead of going back & coming back again. Dr. Bellin, the endo, says Alexa’s blood sugars have been really steady & look great. She says she doesn’t expect Alexa to need insulin forever, yay!! Dr. Clavel says Alexa needs to work up to where she can walk 3 – 5 miles a day, I don’t even do that!! He also wants her to do some stretches that he showed her everyday & also listen to a tape he made for people with IBS (Irritable Bowel Syndrome) every single day. He told her that people with chronic pain can stay that way forever or they can do these 3 things & pull out of it. That night the kids finished playing their Risk game with Austin. They had taken a pic of it so they could continue it & Alexa & Austin ganged up on Tyson so he lost & they ended up tying.

Tues was another busy day. I got up early & worked out & did laundry & then was so tired that I fell asleep later that morn. When I woke up we got ready & went to Mall of America. It is really quite a place, not really a mall, more of an amusement park. We managed to walk around the whole place & didn’t even get a wheelchair. We knew we weren’t going to be there long so decided Alexa would get some good walking in. We sat & rested here & there as needed but she was pretty worn out after that. That afternoon I took Tyson to Dr. Clavel’s head & neck pain clinic. First he saw PT & she taught him several exercises to do to relieve the tenseness in his muscles, specifically his jaw muscles. After that we saw Dr. Clavel & he told him a few more things to do. Today we will be seeing the Psychologist that works in his office. I really like Dr. Clavel & think we are on the right path to help Tyson with these headaches. We got back just in time to eat dinner & then the RMH was having some crafts that Alexa wanted to do. They were making lava lamps & drawing on T-shirts. Alexa convinced Austin & Tyson to join her in making lava lamps, which turned out to be something that we just threw away. She wanted a lava lamp cuz she was using Shayla’s while she was on her mission & now that she’s back she wanted her own, but it turned out to be not so great, haha! After that we played Catch Phrase with Austin & Ann Clements. That was really fun & it kept Alexa’s mind off her pain for quite a while.

Last night was horrible. This darn feeding tube keeps getting clogged up! Ty & I had it worked out where I would get up at 2 AM to give meds, etc & he would get up at 6 AM. Alexa called me about 1:45 AM freaking out cuz she woke up & was really shaky & took her blood sugar & it was low. She got up & ate something with sugar to bring it up & called me. She was not feeling well at all!! I got her meds ready & when she tried to put it in the feeding tube we realized it was really clogged. We tried warm water & coke ourselves since I really didn’t want to wake up Ty. We finally had to wake him & it took us over an hr to get the clog out. I’ve about had it with this tube & the picc line. I am supposed to put heparin in her picc line every day & only had one tube of it on Mon so they told me to just do the one that has been sluggish so I did that. Yesterday I was supposed to hook up the interlipids, which is essential fats. I couldn’t remember how to hook it up since she only gets it once a week & they did it for me while I watched last week. She said she didn’t want to do it over the phone since she was afraid she would miss a step so I am supposed to have the doctor’s office do it today. I feel like I just want them to pull it out & have her eat the foods she needs! It is a very busy day trying to keep up with all the meds & blood sugars & getting her tube unclogged so much!! Other than that we are keeping occupied with going places around here. We got free tickets from RMH to the Minnesota Zoo & we also got fabulous tickets to a Viking’s football game. We will doing those things when Chelsea & Shayla get here. We will also try to go back to Mall of America & we will take a wheelchair for Alexa. There is also lots of activities that RMH plans so we are able to get Alexa out to distract her.