***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.
Side note: Her
daughter has been fighting cancer for 3 years.
Even though we are fighting different illnesses we are still able to
relate. Having a very ill child is very
difficult. It is hard to explain and it
is hard to relate to other parents. But
Leticia and I can relate. We have gone
through some of the same emotions and rollercoasters. I’m very thankful for her and praying daily
for her princess.
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
