http://vimeo.com/58362147
Having trouble posting this video for some reason. Hope this works. - B
Scoops of Joy
Monday, January 28, 2013
Sunday, September 23, 2012
Lifeblood
B has been a faithful blood donor since 2006. He is the blood drive coordinator for his company and is very passionate about giving. He was recently asked to speak at Lifeblood's annual meeting which is tomorrow. I thought you might all enjoy reading his speech. Most of it you already know, but read it and consider donating blood if you are able.
They gave him quite a long time to speak, so it is a little lengthy.
They gave him quite a long time to speak, so it is a little lengthy.
I want to thank you for giving me the opportunity to share
about my family and how we have been personally impacted by Lifeblood. I donated blood for the first time in
2006. A lot has happened in the last 6
years. But I never would have imagined
having the opportunity I have today.
I think the goal of me being here is to encourage you and
help you put a face behind all the work you do.
Well, here is a face for you to remember. This is my son, Jonah. In June he was the recipient of blood
products that probably passed through many of your hands. So if you want to put a face behind all those
pints you are collecting, here you go. He’s
5 years old, he weighs 38 pounds, he can beat me at Mario Cart, and I think you
will agree with me – he’s a real trooper.
I want to briefly share how I started out donating
blood. I started donating blood in 2006
at work. It was during the Elvis t-shirt
promotion. One of my friends was in
charge of the blood drive on our floor so I asked her what the donation process
was like. I was a little nervous but
decided to go ahead and do it. After
that first time I thought to myself, “I will probably never do this
again.” It was pretty uncomfortable. But then I heard a statistic that 60% of
first time donors never donate a second time – and I didn’t want to be part of
that statistic. So I convinced myself to
donate a second time. It wasn’t that
bad. So then I started setting personal
goals. I wanted to donate up to a gallon. Then 2 gallons. Currently I have donated almost 4 gallons and
now I just try to donate as soon as I am eligible. Along the way I ended up being the
representative for International Paper’s blood drive at the Towers.
Because of my involvement with the blood drives at work I
have talked to a lot of life-long donors.
It didn’t take long to discover a lot of people have a reason for
donating. They had either a family
member or close friend who needed blood and that now drives them to donate year
round. So I had a funny feeling that I
didn’t just randomly get into blood donation.
I knew I would eventually have a story like most of the donors I’ve
met. I just didn’t know it would happen
so soon.
In 2007 Katie and I felt that the Lord was telling us we
should adopt a child. Specifically, a
child from China. Before we officially
declared with the China program our agency called and said they had a boy in
Hong Kong they wanted us to look at. He
was 3 years old. From day one our agency
shared with us that he had a complex heart condition. On the same day they emailed us a mug-shot
picture. His chubby cheeks and almond
shaped eyes took root in our hearts and we loved him immediately. We knew his heart condition was pretty
serious, but our logic was if God wanted us to have this child, He would give
us what we need to take care of him. And
He has been completely faithful to do that.
We eventually started getting medical documents from Hong
Kong as we prepared to bring him home.
We met with a cardiologist at Le Bonheur to discuss his condition. As our cardiologist was looking through all
the paperwork her eyes kept getting bigger and bigger. We were like, “Is everything OK?” She couldn’t believe he was still alive. His heart was very special. In his first year of life he had multiple
open heart surgeries. She prepared us
for the fact that when we brought Jonah home he would need another major
surgery pretty soon after he arrived.
After a lot of waiting and an unbelievable amount of
paperwork, in February of this year we went to Hong Kong and got our son. We spent a week there meeting the wonderful
people who had taken care of him since he left the hospital. It was amazing to see how dearly loved he
was. The orphanage was not at all what
you typically think of when you hear of orphanages in China and other places
overseas. It was very personal. There were a ton of volunteers. And they genuinely loved the children under
their care. But, considering all this,
how great the facility was, and how well taken care of Jonah was – it would not
compare to having his own family, his own mommy and daddy. So we brought Jonah home and started our new
family.
When we landed in Los Angeles and went through customs, it
was such a huge moment. We missed our
son’s very first steps. But we had a
front row seat for his first steps in the United States. He was so excited to be in America. Every minute was a new experience for
him.
The first few weeks were filled with joys and
challenges. The process of getting to
know Jonah and introducing him to new things was so much fun. I think we went to get ice cream every day
for a solid three months. It was such a
unique time for the 3 of us and we will have those memories forever.
As things settled down we started making plans to have surgery
in the summer. The surgery Jonah needed
is called a Fontan. A major symptom of
his condition is that he was not getting enough oxygen in his blood. The normal oxygen level for you and me is
around 99% and his was 80%. So his
little fingers and toes would often turn blue and he would get out of breath
faster than the average kid his age. So
the goal of the surgery was to redirect blood flow to his lungs and get more
oxygen in his blood.
On June 18 we checked into Le Bonheur. For this surgery the surgeon likes for the
child to be in the hospital 24 hours before the surgery for monitoring and
blood work. Jonah had a blast in the
hospital that first night. I guess for
him it was like going on a trip and staying in a hotel. He played with the bed for most of the
night. There were so many buttons to
push.
We tried our best to prepare him for what was about to
happen. We also tried to prepare each
other.
The surgery was over in about 5 hours. The surgeon was very happy with how it turned
out. Jonah did well and should have a normal
recovery. We were relieved.
It took an hour for them to get his room ready in the
ICU. We were relieved that everything
was successful, but still anticipating what we would see going into the room
after surgery. It was a lot to take
in. There were so many tubes and
monitors - so many IVs in his little body.
After a few days some of the tubes were able to come
out. We got Jonah out of the bed and
rode around the floor in a wagon. He
could say a few words but his voice was so faint. It was painful to see him like this. He was heavily drugged. If he wasn’t sleeping or crying he had a
blank stare and there was no spark in his eyes.
It seemed like progress was either non-existent or very slow.
We expected to be in the hospital for about 10 days. After day 7 our cardiologist ordered an
echocardiogram. It was a test that would
need to be done before we left the hospital but based on how lethargic Jonah
had been she wanted to go ahead and get it done.
After talking with the doctor we knew we would be there for
at least another week. So right after
the echo I left the hospital for the first time since we checked in just to go
get a few things from home. On my way
home Katie called me and said to hurry up because there was a problem. The echo showed a blood clot in Jonah’s heart
near the Fontan and the doctors were going to discuss what to do about it later
that night. It was around 2 in the
afternoon. So I rushed home. When I got home Katie called again and said
they were taking Jonah into the cath lab right then and I needed to get there
now. So I rushed back to LeBonheur and
made it there just in time to kiss his forehead and hear the doctor tell us all
the risks involved.
The risks were high. There
were no great options. But they all
agreed they should go in and attempt to break up the clot. I had a horrible feeling in my stomach. We had prepared for the surgery, but not for
any complications. It was very
scary.
The goal was to break up the clot through a catheter using
an angiojet, and then drip a drug named TPA through the catheter overnight to
dissolve whatever was left.
After the procedure the doctor explained they had busted up
40% of the clot and they were hoping the TPA would take care of the rest of it
that night.
Around midnight things had settled down so Katie and I went
to the cafeteria and ate a couple of cheeseburgers. The last few hours had been really intense
and we were hungry. After that we went
back to the room and the nurse was explaining all the new tubes and IVs and
told us they would take really good care of Jonah that night. So we went to bed.
Every night we slept to the sound of Jonah’s heartbeat. Actually there were a lot of sounds – and we
just got used to it. Alarms would go off
– we would sit up and ask the nurse if everything was alright – then lay back
down and try to sleep.
It was the middle of the night. The monitor was beating faster than
normal. We knew what normal was at this
point and this was not normal.
Throughout the night Jonah’s heartbeat got faster and faster. Something was not right.
Over the next few hours Jonah would develop a huge hematoma
in his thigh. 60% of his blood went to
his thigh. His leg got so big I could
only look at it a few seconds at a time.
We didn’t know how serious it was.
Was he going to lose his leg?
Some of the nurses were crying.
Katie was crying. Our cath doctor
was called in early and immediately started putting pressure on his leg. It was frantic. People were moving quickly. Our cardiologist got there and tried to calm
us down. For a few hours the scene was
very intense.
Eventually the bleeding stopped. He spent the next 2 days on the ventilator
just to let everything calm down. After
the breathing tube came out progress was slow but steady. Eventually life started coming back into my
son’s eyes and we were able to leave the hospital. We were there for 3 weeks.
Let me take this opportunity to say how thankful we are for
the facilities and staff at Le Bonheur.
They went out of their way to keep us informed and comfortable during
our stay there. And the way they cared
for Jonah was heart-warming.
Looking back on it now – it’s hard to believe. He has made a full recovery. He recently celebrated his 5th
birthday. He started home school about a
month ago. He loves math. He loves Mario and Louigi. He loves cheeseburgers. And thanks to one of our friends he now loves
Chuck E Cheese.
We are so thankful for his progress over the last few months. He’s an amazing child and his future looks
positive. But I think we all know the
story had potential to be very different.
I never heard how many units or how many blood products
Jonah needed while we were there, but I know I saw a lot of red bags and FFPs
during those 3 weeks. It was amazing to
see Jonah’s body respond as the doctors would give him blood. He obviously needed blood after the clot in
his leg. And then at other times they
would use blood to regulate certain vital signs. They used blood products the same way they
used other medications. If they didn’t
like something the monitor was showing they would order more blood.
So I really started to understand that there is life in
those bags. People really depend on the blood
supply. We didn’t have to postpone the
surgery because the blood supply was low.
We didn’t have to deal with a tragic situation when Jonah lost 60% of
his blood. The blood was available. It was right down the hall. There was no waiting.
Actually, I can’t imagine what it would have been like if
the blood were not available. Children
with Jonah’s condition are only eligible for this surgery for a short time
period. In other words, the older you
get, the more resistant your body is to this procedure. The window of time is very narrow. In fact, if Jonah were born in the United
States our cardiologist would have done this surgery a few years ago. So how awful would it have been if he made it
this far, survived multiple open heart surgeries in Hong Kong, came to America
and then had to wait for the blood supply to be replenished before he could
have the surgery.
What if that morning when life was bleeding out of my son,
the doctors said I’m sorry, there is
nothing we can do. We’re out of blood.
Thanks to the efforts of everyone in this room, we don’t
have to ask those questions today. Thanks
to you, when I get home from work, as long as Little Einstein’s or Diego is not
on, I am greeted with hugs and smiles from my little boy.
I know many of you start your day very early in the morning
– especially you who work the mobile drives.
But when you have a hard time waking up, and it’s just too early in the
morning – remember because of what you are doing I am able to kiss my boy
before I leave for work. Do you realize
that?
You are impacting real lives in our community. The work you do collecting and recruiting may
seem like it’s just another job – but you are saving lives every day.
At my job at International Paper things get stressful. But every once in a while I have to remind
myself it’s just paper. No one is going
to die if they don’t get their paper!
But when you go to work you must remember people’s lives are
depending on you. You may not get the
same publicity and recognition – but Lifeblood has the same “hero status” as
police officers and firemen. Phlebotomy
may not sound as glamorous as pulling a child from a burning building. And going to North Eastern Arkansas for a
mobile drive may not sound as exciting as chasing down armed bank robbers. But believe me when I say you are all
heroes.
Without Lifeblood our community would suffer.
So I want to thank you again for letting me share my
family’s story. But mainly I want to
thank you for what you are doing to sustain the blood supply in our
community.
You know, I think for most people the blood supply is like
electricity. You don’t even think about
it until it’s gone and you need it.
Think about how dysfunctional we are when the power goes out! We go around the house looking for candles
and sometimes will try to turn the lights on so we can find the candles but
then we forget that’s why we need the candles because the power’s out. The air is out. It starts getting hot. There’s no TV. We feel like life is on pause until
everything comes back on.
But in all seriousness, when the blood supply goes out, life
IS on pause. Life does stop. When faced with an accident or emergency
surgery, you can’t wait it out. You
can’t just wait for the power to come back on.
The Mid-South is very fortunate to have Lifeblood keeping
the power on for our blood supply. Your
efforts are making life better for so many people. Thank you for what you are doing, and thank
you for your commitment to our community.
Tuesday, September 4, 2012
Jonah is 5!!!
I'm so sorry for the absence on the blog. We have been trying to keep up with a VERY active little boy.
On Labor Day our boy turned 5!!! We decided to take him to St. Louis for the weekend and it was great! We went up in the arch. He LOVES elevators so this was a real treat. He is definitely not scared of heights! See how happy he is?!
We did some shopping and a lot of eating! We also went to the City Museum. B and I have been before and it is an awesome place. J really enjoyed it, but I think in another few years he will enjoy it more. I can't even explain this museum. Just look at the roof!!!!
It is unlike anything I have ever seen or experienced. You really need to check it out for yourself.
J wanted to ride the ferris wheel SO badly. It took us three tries (due to rain), but we finally made it on and he was in heaven. He kept saying "this is the best ride ever!"
We really LOVE St. Louis and can't wait to go again.
My parents decorated the kitchen while we were gone. J opened most of his presents when we got home Monday night.
He kept asking us where our presents were. I think he was just shocked that all of this was for him. This is the first birthday he hasn't had to share with at least two other boys. The orphanage celebrated all the September birthdays on one day. While I can understand that is easier on them and I definitely don't fault them for doing that, it is was awesome to see him so happy on HIS day! This morning he woke up and said "I'm still 5?" Sweet boy.
We are having a small party Friday afternoon and then our families will come over Saturday night for a cookout. We are loving celebrating our boy.
Stay tuned...more to come on the blog. I will try not to go so long between posts!!
Health wise he has been better than ever. The surgery was definitely a success despite all of our setbacks. Thankfully, from what they can tell, he does not have a blood disorder. He is still on blood thinner and getting that all worked out has been somewhat of a headache. We are constantly changing the dose. He has done so well when they have to take his blood. Such a brave boy. We are still keeping a close eye on him due to the fact that he is on blood thinner. That has been harder than before because he has so much more energy!!! We are thankful for that, but tired:)!
Thank you all for all the prayers across the world. I wish I could hug each one of you. We definitely felt it and you played a huge role in our son's story. We are amazed at how many people were praying for us during that time and continue to pray for his full recovery.
On Labor Day our boy turned 5!!! We decided to take him to St. Louis for the weekend and it was great! We went up in the arch. He LOVES elevators so this was a real treat. He is definitely not scared of heights! See how happy he is?!
We did some shopping and a lot of eating! We also went to the City Museum. B and I have been before and it is an awesome place. J really enjoyed it, but I think in another few years he will enjoy it more. I can't even explain this museum. Just look at the roof!!!!
It is unlike anything I have ever seen or experienced. You really need to check it out for yourself.
J wanted to ride the ferris wheel SO badly. It took us three tries (due to rain), but we finally made it on and he was in heaven. He kept saying "this is the best ride ever!"
We really LOVE St. Louis and can't wait to go again.
My parents decorated the kitchen while we were gone. J opened most of his presents when we got home Monday night.
He kept asking us where our presents were. I think he was just shocked that all of this was for him. This is the first birthday he hasn't had to share with at least two other boys. The orphanage celebrated all the September birthdays on one day. While I can understand that is easier on them and I definitely don't fault them for doing that, it is was awesome to see him so happy on HIS day! This morning he woke up and said "I'm still 5?" Sweet boy.
We are having a small party Friday afternoon and then our families will come over Saturday night for a cookout. We are loving celebrating our boy.
Stay tuned...more to come on the blog. I will try not to go so long between posts!!
Wednesday, July 4, 2012
Best Small Group Ever!
We're on the 10th floor of the hospital. One of our friends came up just for a visit this afternoon. All of a sudden she looks out the window and says, "Hey, what's this?" So we go to the window and see what you see in these pictures. It was all set up by our small group. They are so thoughtful and fun.
Thank you guys!! We will never forget this!!
Sunday, July 1, 2012
Long Update
***WARNING***
This is a
long post and it is very descriptive. If
you do not want to know all the details of what has been going on, please don’t
read. No pictures.
Things have been rough here.
We experienced the worst 48 hours of our life.
I will back up to where we left off.
So Monday they moved us up to the ward – a regular hospital
room. We were glad for another step (and
for the private bathroom), but we knew we would miss our nurses and the care we
got in the CVICU.
He was doing a little better. We were able to get him up and moving a
little more and he enjoyed playing for a bit in the playroom they have. Getting him to take his medicine was a
challenge. He was so scared it would make
him throw up and he would get so worked up about it. We thought he was getting so worked up about
it that he was making himself throw up.
He was able to keep food down until dinner time on Monday and Tuesday.
WEDNESDAY
Wednesday he was very tired and lethargic. In rounds that morning, the doctors decided it
was time for an echocardiogram. I’m not
sure if they decided that because he still was not progressing like they wanted
or if it was just routine. So at 2:00 on
Wednesday they did the echo. I knew the technician
found something, but I didn’t ask. B
decided to run home to do a few things, get a few things, and take a
break. My mom came to stay with me while
he was gone (I’m very glad I asked her to come so I wouldn’t have to be by
myself). About 30 minutes after he left
our cardiologist came running into our room.
She told me there was a blockage in his artery that would probably need
to be taken care of that night in the cath lab.
She said she would come back and talk to us around 5:00. She told me to make sure B was back by then. Then our nurse came in and said they were
coming up to get him in the next 20 minutes!!
Our cath lab doctor came up and told me our options and told me all were
risky and he really didn’t want to do the procedure that was the best
option. But everyone agreed that taking
him in to have another open heart surgery at that moment was a very bad
idea. I could tell he was very
concerned. The option that we chose was
for him to try to suck it out with an angiojet through a cath in his leg. So I called B and told him to rush back. Our nurse came in and was crying. My son knew something was going on and he
curled up in his bed and started to whimper. So I stopped all the commotion and sat with
him for a minute. I told him it was ok
to be scared but God would take care of us.
He put his arm through mine and laid his little hand on mine. Then I got up and he reached his arm up. I leaned down and he pulled my head to his
shoulder (yes I’m tearing up just thinking about it). So he and I made the trek down to the cath
lab while my mom packed up our room to move back down to the CVICU. Our nurse met B at the door to the hospital
crying and took him the fastest way possible.
He made it just in time, but J had passed out and would not even respond
to us (he was not on any medicine at the time).
There were three doctors helping our doctor and we knew it was serious. Multiple doctors told us this was an
emergency.
So we went back up to our room and moved all of our stuff
downstairs. And we waited, and waited,
and waited. They finally completed the procedure
around 8:00 and our surgeon and cath doctor were both pleased. They were able to get 60% of the clot. They added a line in his neck to drip a drug
called TPA (a clot buster) to break up the rest of it. It took them forever to get him ready and get
him back to the room. I don’t think we
saw him until 11:00. He had more lines
and machines connected to him than after his open heart surgery. When we got to the room his stats were great
and our nurse told me that their goal was to keep him like that all night. There were at least two nurses in our room
all night and sometimes three or four. All
of our lights were on all night as well.
But God gave me a peace and I went to sleep…facing the monitors.
THURSDAY
I think it
was around 2:00 that I woke up and noticed his heart rate had gone up a
bit. Then I woke up every hour or so and
watched in increase…115…130…145…160…180.
Then one time I saw one of the nurses mouth “what’s that?” and the other
said “blood”. I pulled the cover over my
head because I just didn’t want to know any more. Next thing I knew it was 6:00 and our cath
doctor was there (early) in a panic. He
ended up holding pressure on my baby’s leg for an hour. He also turned off the TPA and all blood
thinners. We later found out that the
TPA unclotted the incision they made to insert the cath in his leg. I don’t know how but 40% of the blood in his
body gathered in the top of his leg and his groin. Imagine that on yourself. There was a HUGE bulge. I knew that it was probably cutting off circulation
to the rest of his leg. Our surgeon came
in and said this was a big problem. Then
our cardiologist came running in the room.
They unintentionally left her out of the loop and she was frazzled. I asked her if he could lose his leg and she
said “yes”. There were lots of doctors
and nurses in our room by then and also a bedside echo machine and team. I told them I did not want him to lose his
leg. That would be tragic. Of course I wanted them to save his life but
I also wanted them to do everything they could to not let him lose his
leg. He has already gone through so much
grief leaving his home and the orphanage family he knew. I didn’t want him to grieve his leg after
going through so much in the last 4 months.
If you do
not have the image in your head right now, you can picture our son in a bed
with monitors all around, on the breathing machine, a huge bulge in his leg,
doctors and nurses all around him, and B and me in the corner watching
everything go down. It was a nightmare.
So they took
him back to the cath lab to remove the cath in his neck and check on the
clot. We were hopeful that what little
TPA he got did dissolve the rest of the clot.
It did not. But the doctors were
hoping his body would take care of it on its own with a little help from some
blood thinner.
At the
urging of our doctors, nurses, family, and friends we went home for a few
hours. This was a mistake for me. It didn’t feel like home because my baby wasn’t
there. I tried to take a nap but all I
could hear was his monitor going off in my head. So I took a shower and then we came
back.
For the past
few nights I have been terrified to go to sleep. I keep wondering if I will wake up to another
emergency. Thursday night I did not
sleep facing the monitor. I did wake up
every hour and would turn to our nurse and ask her if he was ok. His leg continued to go down. The blood was draining out and some of it was
probably reabsorbed in his body as well.
They also started to feel his pulse in that leg again.
Thursday was
the worst day of my life. I don’t think
I have ever cried that much or prayed that hard in my life.
FRIDAY
We knew they
were going to take him off the breathing machine. His leg continued to get better and we were
just praying the clot was going away.
Taking him off the breathing machine is a huge stress. I knew how it would go down from his heart
surgery. First they start taking him off
the medicine that had him paralyzed for the surgery. His muscles would start waking up at
different times and he would twitch. The
last thing that wakes up is always the gut (just FYI). Then they would start taking him off the pain
and sedation medications and he would start waking up. It is painful to watch your child wake up
totally confused with a tube down his throat.
He starts gagging and crying (but you can’t hear anything because of the
tube). He started mouthing “please,
PLEASE!” So he would wake up and while
it looks like he is ready to come off the machine the muscles around his lungs
aren’t awake yet. So they put him back
to sleep and wait for the next time. The
risk of taking the tube out too soon is that the muscles are not ready and he
stops breathing. Then they would have to
reinsert it. Ugh…why does everything
have to be so stressful. Thankfully
three of my friends came up to help us through it. It proved to be my breaking point so I just
had to leave the room every time he woke up.
Natalie and Jana were in the room with B and J and I was in the hall
with my friend Leticia.
So the breathing
machine finally came out around 2:30 Friday afternoon and he did really
well. We had another fabulous nurse that
day. She was so sweet. B left to go get some food for J since he was
hungry that night and when they finally said he could have food the place was
closed here. It was time for our nurse
to leave and she asked me if I was OK. I
broke down and told her how scared I was to go to sleep. She was just the sweetest thing and just
hugged me and listened to me.
SATURDAY
He slept
most of the day. He needed his
rest. Although he had been “asleep”
since Wednesday afternoon a lot had happened to his little body and it needed
good rest. When he was awake he was in
pain. He has a HUGE bruise on his leg
and groin. He also has two very large
IVs in his other leg.
We got great
news though. They did another echo and
the clot was gone! That is seriously
amazing. We needed good news and we got
it! Praise the Lord!!
We continue
to get excellent care here. Our doctors
have had a lot of guilt about all that has happened to us. Our cath doctor said he wished he had stayed
by J’s bed all night Wednesday night. He
felt so bad about what the TPA did, but everyone agreed that they would have
done it again because they had to get that clot out. We were told that a bunch of doctors got in a
room and made a plus and minus list about whether to use TPA or not and J had
one more plus than minus. I can’t argue
with that. However we now know that we
are the 1%. 99% of patients don’t have
anything close to this reaction. They
have been calling us “worst case”. Our
doctors have never seen things like this happen before! Our surgeon has been by every day and yesterday
was the first day our cardiologist was not here, but she calls in the middle of
the night to check on him. Our nurses
are great! Everyone falls in love with
J! Nurses come by to see him all the
time.
I have been
asked multiple times if I was a nurse or in nursing school. NO!
And I have never wanted to be.
However, my job is to be a Jonah specialist! I like to know everything they are giving my
son and what it does to his body. He
does have a lot going on and sometimes I get mixed up or forget, but overall I
know what is going on with his body and what he needs.
Our friends
and family have been amazing. Thank you
to everyone who has made us a meal. The
cafeteria gets old…and expensive. Thank
you for our friends who have visited. Thank
you all for praying. That is what we need
more than anything. To our friends and
family who are far away…we feel your presence.
Just like the nurse who hugged me and ministered to me that night. I know that happened because someone was
praying for me. We are being prayed for
around the clock because of all of our friends in other countries. THANK YOU EVERYONE!!!
So where are
we now? Well we take things moment by
moment. He still has risky lines in his
body, risk of infection, and we have to figure out if he has a blood
disorder. We know for sure that he will
be going home on blood thinners and that will change everything we do. I have to watch his diet and his body. We will be working with doctors here and at
St. Jude to figure out what is going on and what needs to be done. There will be lots of check-ups once we go
home. I’m not sure when we will actually
go home, but we are not in a hurry.
Going home too soon could be tragic.
Again, thank
you everyone for praying. God has done miracles here and we are thankful for
His provision in our life.
On another
note, my grandmother fell yesterday and fractured her hip and broke her
femur. My thoughts are with her and she
knows I love her.
Katie
Monday, June 25, 2012
Forty-eight hours
It's been an interesting 48 hours. Here is where we are now: The surgery was successful but it's taking a little while for Jonah's body to respond to the fontan. Things are going a little slower than we (me and Katie) expected. But the doctors are telling us the things that have been going on, mainly him not being able to keep any food down, are not abnormal.
We are still in the CVICU tonight, Sunday night. We've been telling ourselves we are OK with that and even though moving to the 10th floor would be good - moving there too soon would be bad. So we can stay here as long as needed. And actually Jonah said tonight that he loved it here. It was random. I think he was confused.
Yesterday was the worst day since the surgery. Last night Katie and I were flat out drained. I think we changed the sheets on his bed three times. He just wasn't keeping anything down. He's getting medicine and fluid through the IVs but we're also giving him some medicine orally. He's used to that because he gets that at home 3 times a day. He's actually a pro at taking medicine through a syringe and has never had a problem with that at all. But then after he kept vomiting yesterday he started not wanting to take the oral medicine. He would vomit right after taking the medicine. So he thought it was the medicine making him sick. So all day today I've had to hold his head still while Katie pushes the medicine in his mouth with him screaming the whole time.
Also yesterday we put him in the wagon and pulled him around the floor.
Monitors, chest tubes, and everything in the wagon. It was good for him to get out of the bed and out of this room. He was kind of glazed over from all the medicine but he said he was enjoying it. After about 8 laps around the floor he was ready to go back to his room. Since everything was unhooked from the wall we had him sit in Katie's lap. It was such a beautiful moment. The whole day he was unhappy. He was tired of being in the bed. He wanted to go home. He was physically worn out from throwing up so much. And then I put him in Katie's arms and 3 foot cherub came into our room and winked at me as he brandished a harp.
OK, there was no harp. But it was beautiful. Right before my eyes I was seeing one of our greatest concerns about this surgery being blown out of the water. We were really concerned that we would lose some of the attachment and bonding that had occurred in the last four months just due to the trauma of the surgery and recovery. Honestly at one point we asked ourselves if he would even remember us after he woke up. But it's all been proven to be worthless worry. As soon as I put him in Katie's arms he stopped crying. He was so peaceful. He fell asleep pretty much immediately. My thoughts at that point were not "he's our adopted son". They were more like, "My son needs us right now and thank you God that we can comfort him and love him."
I guess one of the frustrating things about yesterday was that even after the wagon and the time in Katie's lap his stomach was still not well. But after a long afternoon and night he did finally go to sleep and so did we.
It would be very spiritual if I could tell you I prayed for hours asking God for help and begging him to just do something. The truth is I was tired and all I said was, "God, please help us. We need a breakthrough." I think I am beginning to understand more about how the Holy Spirit prays for us when we do not know what to pray. And I'm also very thankful for people who are praying for us this week.
This morning Jonah slept a good bit. He got a couple doses of morphine last night and that took some time to wear off. Then they took another chest tube out this morning and gave him more morphine. Yay. So it was kind of a sleepy Sunday morning. When the doctor's made the rounds today our doctor said the goal was to get him up and moving today. So we took another wagon ride. This time we went out away from the unit and into the hospital lobby. He was OK with it but definitely didn't get that excited. We also had him walk just a few steps. Apparently the fontan doesn't really kick in until he gets up and starts moving around. Thanks for telling me that 5 days after the surgery. Actually I don't think he could have handled walking before today.
We had him walk from the bed to the wagon. And a funny thing happened on the way to the wagon. In transit he needed to have a BM. (ha ha, when have I ever called that a BM..) Katie and I were both supporting him so he didn't fall. The nurse was trying to keep all the tubes and cords where they needed to be and keep them from getting hung up. All while we were trying to get Jonah on an adult sized handicap portable toilet. I think all the emotion of the previous day got to me and I got the giggles. Then we all got the giggles. It was a needed comic relief moment.
After the wagon ride we just hung out in front of the room in the hallway. We were trying to keep him from going to sleep. So while he sat in the wagon Katie and I tried to entertain him. We shot helicopters at each other with this toy that my work friends gave us. Then we got Miss Charlie drunk by spinning her around and around in an office chair. She's doing well. Then I built nothing in particular with some blocks while Jonah looked at me like I would rather be laying in my bed.
Also today, he sat in my lap. No cherubs or harps but it was a good thing for both of us.
He slept there for a half hour or so.
We thought we were making big progress today because for dinner he wanted chicken noodle soup. And he ate it and kept it down. But only for an hour. Things were going great. He was talking and asking for more soup. We were giving it to him slowly to keep from running into a problem. Then we were going to get in the wagon again and come back and go to bed. But as soon we got him up he started getting sick.
We still took the final wagon ride but clearly with no wind in our sails.
I still think we made progress today. Oh, one other thing is tonight they took out another IV. So he has his right hand completely free now. Even though he got sick tonight, we did have him up more today and got him moving. So that was good.
Here is something awesome: some folks at our church got together and wrote out a lot of encouraging Bible verses on construction paper and sent them up here. Even though we haven't put them on the wall (because we keep thinking we'll be moving to another room soon) I have read them all and I am very thankful. Thank you guys. We are not walking this journey alone.
We are still in the CVICU tonight, Sunday night. We've been telling ourselves we are OK with that and even though moving to the 10th floor would be good - moving there too soon would be bad. So we can stay here as long as needed. And actually Jonah said tonight that he loved it here. It was random. I think he was confused.
Yesterday was the worst day since the surgery. Last night Katie and I were flat out drained. I think we changed the sheets on his bed three times. He just wasn't keeping anything down. He's getting medicine and fluid through the IVs but we're also giving him some medicine orally. He's used to that because he gets that at home 3 times a day. He's actually a pro at taking medicine through a syringe and has never had a problem with that at all. But then after he kept vomiting yesterday he started not wanting to take the oral medicine. He would vomit right after taking the medicine. So he thought it was the medicine making him sick. So all day today I've had to hold his head still while Katie pushes the medicine in his mouth with him screaming the whole time.
Also yesterday we put him in the wagon and pulled him around the floor.
Monitors, chest tubes, and everything in the wagon. It was good for him to get out of the bed and out of this room. He was kind of glazed over from all the medicine but he said he was enjoying it. After about 8 laps around the floor he was ready to go back to his room. Since everything was unhooked from the wall we had him sit in Katie's lap. It was such a beautiful moment. The whole day he was unhappy. He was tired of being in the bed. He wanted to go home. He was physically worn out from throwing up so much. And then I put him in Katie's arms and 3 foot cherub came into our room and winked at me as he brandished a harp.
OK, there was no harp. But it was beautiful. Right before my eyes I was seeing one of our greatest concerns about this surgery being blown out of the water. We were really concerned that we would lose some of the attachment and bonding that had occurred in the last four months just due to the trauma of the surgery and recovery. Honestly at one point we asked ourselves if he would even remember us after he woke up. But it's all been proven to be worthless worry. As soon as I put him in Katie's arms he stopped crying. He was so peaceful. He fell asleep pretty much immediately. My thoughts at that point were not "he's our adopted son". They were more like, "My son needs us right now and thank you God that we can comfort him and love him."
I guess one of the frustrating things about yesterday was that even after the wagon and the time in Katie's lap his stomach was still not well. But after a long afternoon and night he did finally go to sleep and so did we.
It would be very spiritual if I could tell you I prayed for hours asking God for help and begging him to just do something. The truth is I was tired and all I said was, "God, please help us. We need a breakthrough." I think I am beginning to understand more about how the Holy Spirit prays for us when we do not know what to pray. And I'm also very thankful for people who are praying for us this week.
This morning Jonah slept a good bit. He got a couple doses of morphine last night and that took some time to wear off. Then they took another chest tube out this morning and gave him more morphine. Yay. So it was kind of a sleepy Sunday morning. When the doctor's made the rounds today our doctor said the goal was to get him up and moving today. So we took another wagon ride. This time we went out away from the unit and into the hospital lobby. He was OK with it but definitely didn't get that excited. We also had him walk just a few steps. Apparently the fontan doesn't really kick in until he gets up and starts moving around. Thanks for telling me that 5 days after the surgery. Actually I don't think he could have handled walking before today.
We had him walk from the bed to the wagon. And a funny thing happened on the way to the wagon. In transit he needed to have a BM. (ha ha, when have I ever called that a BM..) Katie and I were both supporting him so he didn't fall. The nurse was trying to keep all the tubes and cords where they needed to be and keep them from getting hung up. All while we were trying to get Jonah on an adult sized handicap portable toilet. I think all the emotion of the previous day got to me and I got the giggles. Then we all got the giggles. It was a needed comic relief moment.
After the wagon ride we just hung out in front of the room in the hallway. We were trying to keep him from going to sleep. So while he sat in the wagon Katie and I tried to entertain him. We shot helicopters at each other with this toy that my work friends gave us. Then we got Miss Charlie drunk by spinning her around and around in an office chair. She's doing well. Then I built nothing in particular with some blocks while Jonah looked at me like I would rather be laying in my bed.
Also today, he sat in my lap. No cherubs or harps but it was a good thing for both of us.
He slept there for a half hour or so.
We thought we were making big progress today because for dinner he wanted chicken noodle soup. And he ate it and kept it down. But only for an hour. Things were going great. He was talking and asking for more soup. We were giving it to him slowly to keep from running into a problem. Then we were going to get in the wagon again and come back and go to bed. But as soon we got him up he started getting sick.
We still took the final wagon ride but clearly with no wind in our sails.
I still think we made progress today. Oh, one other thing is tonight they took out another IV. So he has his right hand completely free now. Even though he got sick tonight, we did have him up more today and got him moving. So that was good.
Here is something awesome: some folks at our church got together and wrote out a lot of encouraging Bible verses on construction paper and sent them up here. Even though we haven't put them on the wall (because we keep thinking we'll be moving to another room soon) I have read them all and I am very thankful. Thank you guys. We are not walking this journey alone.
Friday, June 22, 2012
Friday Update
The last 24 hours have been challenging. Jonah's been throwing up and dry heaving for most of today. Some of it is a response to different medicines and some of it is just his body getting used to the fontan. We're still in the CVICU tonight. But they are thinking we will move to the 10th floor tomorrow. That will be a big step. More tubes will come out and he will be more mobile. He was talking a lot more today. At one point he looked at me and said, "I ready to go home, Daddy." He's definitely getting tired of being in the bed. He's very interested in the possibility of riding a wagon around the floor when he is feeling a little better. But today was all about drinking small sips of Sprite and waiting to see what would happen.
We continue to have great nurses. We've had the same night nurse for 3 nights now and she was exceptional. We have a different nurse tonight but she's doing really well right now. Our child life specialist came by again today for about 30 minutes and just discussed how he's doing and how we are doing. She has been telling us about a few post surgery opportunities for Jonah down the road. There is a camp he can go to with other "fontans". There is also a Reunion Day event where families who have stayed in the hospital in the last year can come back and visit with the doctors and staff. It sounds like a fun event. They are really trying to make this as pleasant as possible. The only thing that has thrown us off is this morning I went down to the cafeteria and there were no cinnamon rolls. Apparently they do not have cinnamon rolls on Friday, Saturday, or Sunday. All I'm saying is a little heads up would have been nice :)
Katie's Momma Bear sense is in full effect. You can easily see how the Lord has prepared her for this week. She is pretty much laying in the bed with Jonah as much as she can. The surgeon commented about that and said it helps the healing process. And she's right there whenever he needs anything.
The Lord is providing here. I don't know that Katie and I are mentally out of the fog of being in this situation right now. Jonah needs so much attention right now and it is keeping us busy and in the moment. But we are being comforted. We are being fed. And we are being prayed for. Many of you are praying for us and providing food and other things. Thank you. It is coming through.
We continue to have great nurses. We've had the same night nurse for 3 nights now and she was exceptional. We have a different nurse tonight but she's doing really well right now. Our child life specialist came by again today for about 30 minutes and just discussed how he's doing and how we are doing. She has been telling us about a few post surgery opportunities for Jonah down the road. There is a camp he can go to with other "fontans". There is also a Reunion Day event where families who have stayed in the hospital in the last year can come back and visit with the doctors and staff. It sounds like a fun event. They are really trying to make this as pleasant as possible. The only thing that has thrown us off is this morning I went down to the cafeteria and there were no cinnamon rolls. Apparently they do not have cinnamon rolls on Friday, Saturday, or Sunday. All I'm saying is a little heads up would have been nice :)
Katie's Momma Bear sense is in full effect. You can easily see how the Lord has prepared her for this week. She is pretty much laying in the bed with Jonah as much as she can. The surgeon commented about that and said it helps the healing process. And she's right there whenever he needs anything.
The Lord is providing here. I don't know that Katie and I are mentally out of the fog of being in this situation right now. Jonah needs so much attention right now and it is keeping us busy and in the moment. But we are being comforted. We are being fed. And we are being prayed for. Many of you are praying for us and providing food and other things. Thank you. It is coming through.
View of the hospital.
The only restaurant in walking distance
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