Well, this is a post I never thought I
would have to write. It is a long post, so please bear with me as I
try to include all the relevant information. It seems that Caden has
some heart defects which have always been there but no one has seen
until recently. Let me back up and I will tell you the whole story
through today.
Since we moved to Washington, we had to
establish the kids with new cardiologists. The closest pediatric
cardiologists are in Spokane, three hours away from Walla Walla.
However, we are lucky, because they come to WW about once/month to
see patients there. For us that works out perfectly since both the
kids have been doing great and shouldn't need a lot of monitoring.
They had their first appointments with Dr. Burg in WW in April. She
examined both boys and we went over their medical history. Caden's
took longer since he has been through more in terms of surgeries,
complications, etc.
Dr. Burg wanted to do echos on both
kids but decided she would like to do them at her office in Spokane
in August since we were going to be there for other appointments for
Caden anyway. And, she wanted to get a copy of the only heart
catheterization Caden has ever had from UC Davis in Sacramento just
to have it for review and future comparison. I completed the medical
release forms for that to happen.
In August, the kids had their echos in
Spokane and for some reason, they weren't scheduled to see the
cardiologist on the same day. So, we scheduled to see them in
Kennewick (which is an hour away from WW) the following week. At
that appointment we met with Dr. Garabedian who is the senior
cardiologist in the group. During that visit, he told us Caden had a
small ASD (atrial septal defect). (I wrote about this in a previous
blog if you want to go back and read it.) But he really believed it
was very minor and nothing to be concerned about right now. He said
they would check back in a year and see how things were going.
So, imagine my surprise when I get a
phone call while Greg and I are in Monterey in October, from the
cardiology office wanting to schedule a heart catheterization. It
was a scheduler and I asked her why they wanted to do a cath. This
was the first I had heard about it and I had no idea anyone was even
considering this. The last I knew we would see them again in August
2013 and talk about things then. The scheduler was really apologetic
because I hadn't heard from a cardiologist yet. She told me she
would have a nurse practitioner call me and update me on what was
going on. Well, it ended up being several hours later when I finally
got a call back, but it was Dr. Burg who called and not an NP, which
I was grateful for.
Dr. Burg also apologized for not
calling me sooner, and especially not calling before the scheduler
got ahold of me. She said she had been out of the office sick for
several days and that had caused her to not call me when she planned
to. She told me she had finally gotten a copy of Caden's cath in
September from UC Davis. I'm really not sure why it took them from
April all the way until September for them to send that to Spokane.
But there is nothing I could do about that. Dr. Burg said she
compared the cath from July 2009 to the echo they did in August this
year and she didn't like what she saw. She said she had some
concerns about things that didn't look quite right. First of all,
she said she didn't think the ASD was small. She thought it looked
pretty big. And she said the right side of his heart was enlarged,
and it looked like there was a possibility of the pulmonary vein
going to the wrong place based on coloration (oxygenated vs.
non-oxygenated blood) they were seeing on the echo.
Talk about feeling like I got punched
in the gut! I could hardly believe what she was telling me. She
went on to say she felt a cath was necessary to further diagnose and
identify the problems so we knew what we were dealing with. That
being said, she didn't feel it was time-critical because he was doing
well. So she gave me the option of waiting until springtime to do
it. I told her I definitely wanted to wait. That way it would give
me time to process this new and overwhelming information. Because if
they were correct, it meant that Caden would have to endure open
heart surgery to repair things. And he's never had open heart
surgery. They were in his chest but they never had to open his
heart. They repaired his aorta and his diaphragm.
I couldn't help but cry when hearing
this news because I thought everything was behind us in terms of
surgeries. I was completely stunned with this new and devastating
information. A couple days, I decided I wanted to get another
opinion, or two... First I contacted a pediatric cardiac surgeon
who is in Sacramento; Dr. Teimour Nasirov. He was finishing his
fellowship at Stanford while we were there in 2009 and when he was
done, he was hired by Sutter Memorial Hospital in Sacramento. He was
very involved in Mended Little Hearts, the heart support group we
belonged to there, and we had become friends over the years.
I told him what I had just found out
and asked him if he thought it was possible. He said he had a hard
time believing that Stanford, UC Davis, and Dr. Van Gundy (the kid's
cardiologist in Sacramento) would all have missed this. But he said
he has learned to never say never when it comes to heart defects. So
he wanted me to have the cardiology office in Spokane send him a copy
of the echo for him to review and then we could go from there. I
called their office the next day and asked them to send it.
Then I decided I needed to talk to Dr.
Van Gundy and see if he could go back and look at Caden's echos from
his office and see if he could find anything that made him agree or
disagree with Dr. Burg. I left him a voicemail and he called me back
a few days later. I told him what was going on and he said he would
definitely go back and review the imaging and he would get back to
me. A week later, he called me and told me he agreed with Dr. Burg
and he felt Caden had “Sinus Venosus ASD.” This is a specific
kind of ASD. He said he didn't feel a cath would be necessary and
that he would probably just need to go in for surgery. Hearing this
news, I was crushed. I was holding out hope that he would say Dr.
Burg was wrong and everything was fine. But with his consensus I
resigned myself to the fact that Caden needed surgery. Greg on the
other hand was adamant Caden was fine and would not need surgery.
I was still waiting to hear from
Teimour about the echo we had sent to him. But week after week went
by and no echo arrived. I had Dr. Burg's office send it more than
once and he never got it. At this point, it was almost the week of
Thanksgiving and I was going to be in Spokane. Caden had a few
doctor appointments that week so I went to their office and had them
burn me a disc with his echo while I waited for it so I could make
sure Teimour got it. I was flying down to Sacramento on November 27
to go meet baby Olivia, so I told Teimour I would hand-deliver the
disc to his office as soon as I could get there from the airport.
On November 27, I flew to Sacramento,
got my rental car, and drove directly to Teimour's office. He was
there and I handed him the disc with Caden's echo. We talked for
awhile and I told him that if Caden had to have surgery I wanted to
do it at Sutter with him and Dr. Reddy. Dr. Reddy is the surgeon who
did Caden's surgery at Stanford. He comes to Sutter once/week to do
surgeries with Teimour. This way we could have the same surgeon who
did Caden's first surgery, we could have Teimour who we know and
trust, and we could be in Sacramento where we have a support network
and places to stay while we are there. Teimour wouldn't even talk to
me about any of that though until he reviewed the echo. He said he
was taking it to Stanford with him the next day, November 28, and was
going to present Caden's case at their weekly cath conference to see
what the team there thought about it. He said he would call me the
next evening to let me know what was decided.
I received a call from Teimour on the
28th telling me Dr. Reddy agreed it looked like Sinus
Venosus ASD but there was concern about the pulmonary veins and the
potential for “partial anomalous venous return” and they wanted
more imaging done.
The question now was where do we do the
imaging? And what is necessary? Do we need to do a cath? Or can we
do an MRI and get all the information necessary? Obviously I want to
go with the least invasive option possible and that would be the MRI.
They both require sedation, but the MRI is non-invasive which means
fewer risks and that sounds a lot better to me! But I have to wait
to find out what the doctors recommend.
On December 4, the decision was made by
Dr. Reddy and Teimour to do an echo at Stanford on December 19. Greg
and I are going to be in California for a few days for Christmas and
this gave us the opportunity to do this echo. They said once they
did the echo they would decide whether or not they needed more
imaging or if they were happy with what they got. If they want more
imaging they would squeeze Caden in on the 21st at
Stanford for an MRI or cath in order to take full advantage of the
time we are in California.
So that is where things stand
currently. We have tickets to fly down to Oakland and stay with
Greg's sister in Concord for a week. While we are there, we will
take Caden to Stanford for an echo on the 19th and go from
there. Please keep us in your prayers! We just want some definitive
answers so we can move forward one way or another.
