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 1st. 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 1st 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.
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