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Thursday..
The first of ~10 appointments with Ryley’s new Dr.
and crew.
Ryley had to have a Contrast enema that allowed the
doctors to take still pictures and video of his colon. All went
well, the nurse said that he did better then they would have
expected. (Mom helped) after the procedure we started to go to the
Guest relations at the hospital to get some complementary tickets to the
local zoo. But unfortunately the day took a turn for the
worst. Ryley started to feel sick and spilled his breakfast all over
the 2nd floor hallway, bathroom floor and doors. He did eventually
find the bowl.
We had a child life worker with us showing us around
at the time. So she had us just stop and sit in the hallway.
Within minutes one of Ryley’s doctors showed up and put him in a room
close by. We spent the next 2 hrs in that room. Tangi and the Doctor
were giving an on the fly irrigation. I stayed in the hall for a
while but ended up helping out as well.
The rest of the day was spent back at the house. Ryley sleep most
of the afternoon getting sick almost every hour.
It is night time now and Ryley is feeling better we had him work on his
school work. He just loved that. And as a treat, we are going to
drive around the city to check out all the cool things we can see.
Friday
What a day this was. We got up ~6am it was raining outside and no
one wanted to move out of bed. We had a 7 am appointment at the same
day surgery center. When we all were up and dressed we walked over
to the hospital. We thought we would be one of the first ones there
but to our surprise the place was hopping. Ryley was admitted right
away. We were in a very small pre-op room. There were lots of
people in and out. They were all very nice. Ryley got to
choose a movie to watch and play video games before he went to the O
R.
Ryley was given some sedation medicine and off he
went. It was at the door to the Operating room that we finally got
to meet his Doctor. His name is Dr. Pena.
His specialty is working
with kids with anorectal malformations. He also deals with
Hirschsprungs patients.
We spoke very
briefly about Ryley’s medical history. He explained what he was
going to do and off he went.
About 30 min later we were asked to
see the Doctor for a consult. He drew a picture of Ryley’s insides.
He explained that the surgery he had when he was a baby was invented in
1948. It left a pocket at the end of Ryley’s colon that has allowed
stool to build up over the years. They were able to clean him out
completely so we could have a fresh start of things.
Dr. Pena thinks that there is a possibility that Ryley
could have normal bowel movements after he removes this pouch. So
for the next 5 days we are trying some aggressive laxatives that should
stimulate his colon. If Ryley has luck going he will qualify for the
new surgery.
The rest of the day was slow moving. Tangi and I
could no longer keep our eyes open, we were wiped. So we took turns
napping. While I napped, Tangi and Ryley played pool and video
games. When I woke up Tangi started to nap right away. So
Ryley and I took a walk around the out side of the building we are in and
went to a local playground.
He got tired of playing and it
was time to go in. We went to the roof of the Ronald McDonald house
where there is a small sitting area. It was nice about 75 degrees
and breeze. We just sat there and watched all the cars in the city
and people too.
It
was time to go in and you would not believe this….. We were locked out of
the building. YES Ryley and I were stuck on the roof. I tried to
call Tangi but she was asleep and did not hear her phone. She just put in
on mute to get some sleep. We were getting panicky so Ryley started
to knock on the window.
Soon someone saw us and looked at us
funny. I tried to flag her down to come help us. She did come up and
saved us.
The rest of the day was spent doing homework
and playing video games.
So far today I can report that Ryley had some
movement over the porcelain pot. We are very prod of him. He
is a real pooper trooper.
Weekend inMichigan
We made it to Michigan with few problems. Tangi
insisted that we stop at stake and shake. Here we saw the first
signs of trouble. Ryley was nauseous from the laxatives. We were not
far from our destination so we motored forward. We had plans to go
on a hay ride and play in a corn maze. Instead we spent the evening
at the Moore's house. We had a real nice
time and even got a chance to have s’mores cooked in the fireplace. Ryley
spent a good part of the night sitting on the potty with some great
results. We all slept in and had a great home cooked
breakfast. We all jumped in one car went to a place called Apple
Charlie's. We got to go on the hay ride that we promised
Ryley. We also spent time wandering through the farm checking
out the barn animals. Everything went great. That afternoon,
Jason and the boys headed off to Hockey Practice. Ryley and I were
going to tag along. It was
the first time this little Florida boy has ever been in a local
town hockey rink. We were not dressed for the occasion. But it was
cool to see the Rink. Ryley and I went back home while the boy's
were practicing. We found Mommy putting permanent makeup on
Rachel. Rachel was wining
like a baby, and to think Rachel has been applying permanent makeup for
years now. She can dish out
the pain but she can’t take it.
Ryley and I just spent time lying around. IT was time to get Jason and the
kids from practice. We got
back and Tangi put a touch up on the tat that she gave Jason last
month. It was time to leave
and head back to the Ronald McDonald house. We had a very uneventful trip back
and all slept well that night.
Monday through Thursday
Because of the effects of
the laxatives on Ryley we spent the week at the Ronald McDonald
House. The weather here has
changed from the time we first got here. It was cold and rainy. We only have a short walk to the
hospital. Everyday we have been going in for Ryley to have an x-ray of his
tummy. After the Doctor and
his team review the x-ray they call us and discuss the day before and make
changes accordingly. Thursday
we went in for the x-ray at our usual time and headed over to the
cafeteria. We ran into many of the parents that are also here for bowel
management. One of them was
kind enough to point Ryley and I in the right direction for the
bathroom. We almost made it
to the elevators. L
By the time we came out of the bathroom the clean up crew was hard at
work. After his wave of
nauseous ness he seemed to be feeling better and ready for the day. We decided to head over to the Newport
Aquarium located about 3 miles from the Cincinnati Children’s
hospital. Man, the Tarpon
Springs aquarium should take some tips from this place. It was entertaining and
educational. We saw all types
of fish, shark, odd sea life and even otters. Tangi’s favorite part was in the
aviary. The birds came right
up to her and drank the nectar right out of a cup in her hand. They were climbing all over
her. I walked over to Tangi
to see how cool they were and one of them jumped on me. Everyone thought it was cute when
the bird decided to make me his pooping post. Even the other birds got in on the
action. In seconds a
2nd bird jumped on and poop right on my back next to the
other. I looked around and
felt like all the birds were headed my way so Ryley and I ran for
cover. We left the room so I
could clean up. Not long
after Ryley was not feeling well again so we left right away. We headed back to the Ronald house
where he got sick again and napped most of the rest of the day.
Friday we have an
appointment with the Doctor to find out what we do next.
I will update this page
tomorrow night.
It’s Sunday and we are
getting back in to our normal routine.
Friday we had our last
appointment with Dr Pena. From all the testing that went on
for the last week, he has determined that Ryley is a candidate for
Surgery. Specifically, he is
recommending a bowel resection.
This will greatly improve his quality of life. We have scheduled the surgery for
Feb 7, 2007.
As soon as we found out
that we were going home we ran back to the Ronald McDonald house and
started packing. We headed
for home. We drove through
the night and made it home by Noon Saturday morning. Ryley was so sick of hanging out
with us non stop for the last 13 days that he insisted that he go to
Grandma’s house. We dropped
him off on the way home and he hung out with Grandma most of the day.
Tangi and I went strait
home and took a real long nap.
We are finally all together.
Ryley came home last night and Kali made it home this afternoon
from Daytona where she spent the weekend hanging out with her cousin
Keri. They got to see what
collage life was like at Embry Riddle. Keri has applied for the collage
and is waiting to hear if she got in.
Tomorrow we are going to take a stab at
returning to our normal life. Ryley can't wait to see his friends at
school.
I will continue to build
out this site to keep everyone up to speed on our Family.
Thank you all for your kind
words and Prayers.
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