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Ryley's Stay at the Children's Hospital in
February.
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Ryley's
recovery at the Ronald McDonald House
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Ryley's Journey Feb
2008 During
our journey to That night we stopped in We finally made it to Ryley Checked in to the Children's Hospital
on Wednesday morning. Things were moving quick.
Within the first hour that he was there he received a "PICC"
line. That is an IV that goes from his arm to his chest and is
there to help deliver all the different meds and nutrition that he will
need over the next 10 days. That procedure went well.. We then were
moved into the room that we will be in for the duration of our
stay. Nice room, from what we understand this is brand new
wing. Just as soon as we got settled in the team came in to put
in a NG Tube. This tube goes in via the nose and goes to the
belly. They are administering something called
GO Lightly. That medication is to help clean out his
insides to get him ready for Thursday. We are now just waiting to
get through the night. The plan is to have him go in for his surgery at 7:30
am. It is projected to take some time. So When we know more I
will post a note up here. Thank you all for your
prayers. It was about 7:30am when the surgical team came in to the
room to bring Ryley down to the OR to meet up with Dr Pena.
Originally we were under the impression that this would take about 2
hours. So Tangi and I went down to the cafeteria to eat some
breakfast. We went back up to the waiting room to find out that the
team was going to be working on Ryley for a few more hours. We went
back to Ryley's room to wait to hear from the OR. When they called
us they explained that the original plan was to do the work laproscopicly
however it was just not possible so they had to go in from the front
side. This meant cutting in through the belly. It is something
that we were told could happen. 7 hours later we got the call that Ryley
was now in recovery. I think that Tangi and I ran to his side.
He has been in and out most of the time. They have him on some good
pain meds. We talked to Dr. Pena who explained to us what he did and
why. From what we can tell the pouch that was causing Ryley problems
has been removed and the surgery went the way the Dr expected. I
think that angels sent him down to us to help Ryley. Now we are in a
recovery mode. Ryley is not allowed to eat for the next 10 days.
When he is awake he is in good spirits. Mom got to sleep for a
couple of hours and well Dad watched over them both. It is Friday evening and Mom just got
back from eating some food in the cafeteria. She has not left
Ryley’s side so I had to force her out of the room. Today has been a
challenge. The first thing this morning we had a train load of
doctors, interns and nurses come in to take a look at Ryley. It
was intimidating for me; you can only imagine what it must have been
for Ryley. The equipment attached to him includes a heart rate
monitor. When all the people came in the monitor started beeping,
his heart rate went way up. It has been like that most of the day,
every time someone enters the room he panics. So when the Pain Dr.
came in they up his dose a bit. After several try's they could
finally move him around on the bed. He did finally fall asleep
around 3pm after being up all morning. Hopefully he will have a
better day tomorrow. We found out that Monday of next week he will start school
just down the hall from his room. The hospital has already made
contact with his school back Sunday night: Its finally quiet up here in room 451 on this cold Sunday
night. Tangi went to the hotel to get a good nights sleep and Ryley is
sleeping in his bed. Seemed like a good time to update everyone on
what went on here this weekend. For starters the Dr. came by
to see Ryley. He said all is looking good with the surgery.
Now we just need to get Ryley back on his feet. So yesterday we had
Ryley sitting on the edge of his bed playing video games and computer
games. This sounds easy but when you have a 5-6 inch stitch in the
middle of your belly it is hard to move. Ryley did not go
willingly. Although he had a great time playing his new computer
game, webkins, he fought with us the whole way to the edge of the
bed. When it was time for him to get back in bed the nurse suggested
that he walk around the bed to get back into it. That took him at
least 30min to get to the other side of the bed. Most of the time
was spent listing to Ryley tell us he is not going to move and he is going
home.... Soon after he fell asleep for a short amount of time.
Gave me some time to go out and get Tangi and I some Chili’s to go.
Way better then Cafeteria food. After dinner I pulled out the
Chest board and set it up for Ryley. For those of you who do not
know, Ryley is a great Chest player. He learned how to play at his
Grandmothers house. She taught him well, he had me in check in the
first 4 moves. Although I ended up winning he put up a good fight
and wants a re match next week. It was time to get some sleep so I
went back to sleep in the hotel room on Sat night while Tangi made it
through the night on the pull out in Ryley's
room. Sunday morning I woke up to some cold
weather. Called Tangi to see if she needed any breakfast. So
off I went on a hunt for food in the cold. I ended up going to a
grocery store in It’s only been 2 days since I posted anything here. So much has changed. Monday morning Ryley woke up the usual way, with a bunch of people standing around his bed talking about how things are going. Today was the day he got to lose the catheter he has had during his surgery last week. I think that just the thought of it made Ryley sick. With in one minute of the Doctors left the room Ryley yelled for me to get him a bucket. Then he said he had a headache. He was better within 5 minutes. This could have been something that nurses around here call the “White Coat Syndrome”. That morning after the catheter was removed we noticed that Ryley was squirming around his bed. So with very little convincing, unlike the day before, we got him up and out of bed. He was ready to go exploring around the hospital. We started out small. First trip was to the window down the hall from his room. Next trip that day was to the School room located down the wing. Ryley got to meet his teacher. She had him learning as soon as we walked through the door. Even though he did not want to go to the school we noticed that he seemed to love being there. He must miss his classmates. Tuesday morning and Ryley is making even more progress. Mom walked with Ryley to the gift shop on the other side of the hospital this morning. Of course Tangi felt that he should get a present for making it there. With a shop full of toys he picks out something called Flarp. For those of you who know Ryley well, you can only imagine what Flarp is. It is noise putty. You can make Farting noises with this stuff. After his adventure to the gift shop it was time to go back to the room. When he got there Ryley was greeted by a holistic massage therapist. He got a back rub and foot rub all while Tangi and I ate breakfast. After he was finished with his rub down, the therapist offered Tangi a back rub. Let me set the picture for you. Ryley is sitting in his bed playing on moms PC and Dad is in the corner of the room sending out emails. Mom is in a chair getting a back rub when all of a sudden we all heard this very loud Farting noise coming from the new noise putty. Ryley immediately blamed it on me. Well the therapist just started laughing and that spread around the room. Soon Ryley could not control his laughing. He laughed so hard that his belly started to hurt. It made for a good morning overall. On the outside this same morning Dad was making his way to
the hospital. I went out to
the car in the morning and found a layer of ice covering the entire car.
My first concern was that I
could not even open the doors because of the amount of Ice on the truck.
After several attempts I did
gain access to the truck. While waiting on the engine to worm
up I realized that the amount of Ice would need to be removed with a
scraper. Ya, easy if you have
one. In It has certainly been an exciting 2 days. Ryley is still on a no food diet. We are scheduled to be in the hospital for 5 more days. We will then be required to check in with the Doctors team for 2 weeks. We are still hoping to get into the Ronald Mc Donald house. For now we are going to stick with the hotel.. Wednesday, Ryley had a nice relaxing morning just lounging around in his bed. Mom and Dad went off for breakfast at Bob Evens. Always a good choice. This was the first time that Tangi and I have had breakfast together for some time. Mom was missing Ryley already and the food had not showed up yet. So she called her Mom and had her call Ryley and put then in a 3 way call. This made Tangi feel better and it helped us have a nice breakfast together. After eating we rushed back to see Ryley. All he wants to do is sit there in bed. Mom could not take him sitting there any more so she dragged him back to the gift shop. He said that he had some money left from the last trip and wanted to get something else. It took him about 20 minutes to decide what he wanted. And like most boys his age he picked out a toy Tank that makes shooting noises. Go figure.
Ryley is moving around the hospital like a champ now.
As
you already know Ryley has been attending school for the last 2 days.
Today I caught Ryley and mom rolling down the hallway on there way to
class. You can see the joy on his face. He seems to be doing well with the
teacher. It give mom and I a
chance to get out of the hospital.
Today we went for a drive around The Power of positive thought is all around us. We started the day off hoping that we would get into the RMH. The power of the Secret has clearly help us here. Around 7pm we got a call from the RMH, they have a room for us. Here we feel more at home. There is a Kitchen that we have full access to. Tangi is looking forward to making some Tuna casaroll. Often, different groups and organazations volenteer to come in and provide the people in the house with wonderful dinners. I will be sure to let you all know how things go at the house as we will be here for 2 1/2 weeks. Time for bed. . Thank you for your continued prayer for Ryley. It is making a difference. The E-cards are coming in everyday and Ryley loves it. The outreach to Tangi and I has be overwhelming. Family, friends, neighbors and coworkers are all helping out in one why or another. Some folks have even offered to cover our stay at the hotel while waiting to get into the RMH house. We want you to know how much this all means to us. Thank you very much.
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