Monday, May 21, 2018

My thoughts about Rylan’s heart and Brad's mission call in May 2018

Dr Christopher Mart visit May 1, 2018
Arrived at Primary Children’s Cardiology at 9:40. Waited more than half hour to go back to
the echocardiogram.
Technician lady was cheerful and kind.
Went to the dr office to wait to be seen by the doctor.
We waited nearly an hour in the exam room. We were becoming frustrated and annoyed.  
Rylan wanted to just leave. We had waited months to see the dr.
He walked toward us from the hall then said he needed to recheck the measurements.
Left.
Came back and immediately asked if Rylan was tired, dizzy, winded, etc.
We said no.
Then he sat and began typing in his apple laptop for a few minutes.
He took a paper from the counter with a little diagram of the heart and began drawing things.  
He drew his bicuspid valve. Then he flipped the paper and drew a profile of the valve and
the ascending aorta.  He wrote the numbers of the measurements and I knew right away
that it was bad news.
Rylan’s aorta had swollen.  His z score went from 5 to 7.2. (z score 0-1 is normal size.
They consider surgery at 7.)
He told us they wanted to do an MRI because they are more accurate.  
They would look at those measurements. If they were consistent with the echo then
surgery would be needed.
We had Rylan leave the room as the Dr. explained to me the process  in more detail.
He told me it was open heart surgery. They use an artificial aorta to replace the aorta
that is enlarged.  They would want to do surgery as soon as possible, but he said they
could wait til school was out. His bicuspid aortic valve will stay because it is functioning
well.  A Cardiac conference (15 cardiologists) will review his case and figure out best
course of action if the MRI shows measurements consistent with the echo. Their
conferences are every wednesday.
He walked me to a gal who would schedule the MRI and left to get a copy of the echo
for me.  The girl told me she could not schedule the MRI, gave me the number to call,
and told me to call and schedule as soon as I could.  I left, without the papers he was
printing for me. They came in the mail a few days later.


We got in the car at around 1pm.  We went to get something to eat at in-n-out.  
I called to schedule while we waited in line. The soonest they could do the scan
was the same day and close to the same time that Brad had an appointment with
the podiatrist.  I couldn’t miss that! We have been waiting for that appointment so
that dr could examine Brad’s feet and write a letter for his mission papers. That
was all that was needed and his papers would be submitted.  I called Brian and
he was able to miss work to take Rylan. I would go with Brad.


Brian gave Rylan a blessing when we got home.
 
Pres. Carver gave me a blessing back in October when we first learned that Rylan’s
ascending aorta was enlarged. He was our Bishop at the time. “Rylan's heart will
not worsen… Rylan's heart will not worsen.” two times he said those words. I had
not been worried at all walking into the cardiologist appointment  because of that
blessing. When I was told the devastating news, it shook me. I couldn't stop
thinking about those words and wondering what in the world happened.
It shook my faith. I tried to not think about it because if he did need surgery,
what would that blessing mean… and any blessing I or my family got. It was
a struggle. I kept praying. Kept believing. Kept trying to have faith.


I held it together through the day.  That night was different.
I had a dream as I fell asleep that night.  I woke up to my heart pounding and it
was really hard for me to settle down and go back to sleep.  The dream was about
when my other boys had surgery as babies and it brought back all the worried
feelings times ten.  I was crying. I had a hard time calming down. Brian woke up.
He wrapped his arms around me and held me. His calm heart helped to calm my
heart down.  I was able to go back to sleep.


Then I had a dream early in the morning.  I dreamt that I knew a tornado was coming.
I ran inside and was holding rylan.  A friend from high school (Whose little boy died.)
was outside and did not believe me at first, but then came running in.  I held onto her
hand and was holding Rylan as the tornado beat upon the house, lifting and shaking it.
I woke up. I was anxious through that day anytime I thought about it.  My heart would
start pumping hard and I felt like I was going to cry.
I called my parents to tell them what was going on. My dad started crying. “I'm sorry
you have to deal with this.” He said.  He told me he'd get our names in the temple. I also
let Brian’s parents know.

The morning of May 3rd I called the temple and put Brad and Rylan's names in.


Rylan went in May 3, 2018 to get an mri of his heart.  That morning Rylan was laying on the
floor. He was very nervous. He didn't want to get up. “My head hurts, my stomach hurts, my
back hurts.” Then he started crying and covering his face. We finally got him to sit up, eat,
and get dressed. He missed choir that morning. I sat down by him as he tied his shoes, put
my arm over his hunched over shoulders and said, “Rylan, sometimes the bravest thing we
can do is get up and get dressed.”


Brad went to the doctor and got a thorough exam of his feet. We left and got a letter
saying no restrictions were needed. We were so relieved!


The kids were talking about what was happening with Rylan while we were driving in
the van a few days later.  I had been unsettled and nervous a lot of the time. I opened
my mouth to help them not worry about it too much yet. My comment calmed me down
probably more than any of the kids.  I said that ultrasounds are not always accurate on
babies when they do them when the mom is pregnant. It dawned on me how true that
was, and our dr was measuring millimeters. This made me feel a little better for the first
time since the panic set in.
We prayed and planned to fast on Sunday for Rylan. I felt we should include our family
in our fast.  This made me nervous because telling people made it more real AND I didn’t
want to rehash the story. I knew talking about it would be hard, just thinking about it made
my heart pound.  People would want to know what was up, have lots of questions, and
call to know updates. I knew they would mean well, but didn’t want to deal with that.
We invited our families to pray and fast with us.  Brian texted his family and this is the
email I sent my family:


Hi Everyone,


On Tuesday Rylan had an appointment with a cardiologist at Primary Children's hospital in SL.  
Rylan has a bicuspid aortic valve. That is congenital. We have had him get check ups regularly
through the years.  Last Oct at his appointment they found a problem. The ascending aorta above
his valve had swollen. They started him on medication to hopefully prevent it from swelling more.  
Tuesday, the doctor informed me that the echocardiagram showed measurements that indicate
more swelling. The doctor doubled his medication. He ordered an MRI of his heart to get more
accurate measurements. Rylan had that done.  We have not heard any news back from the doctor.
If they find that the measurements are indeed that large, they want to move forward with surgery to
replace the ascending aorta.


If you are fasting this Sunday, would you mind including Rylan in your fast? We are praying for
Rylan to feel some peace and comfort, as he is nervous. We are praying for no need for surgery,
if possible.  We are praying for the doctors to have keen minds and be enlightened as to
the best care for him.


We will update you when we know how we are moving forward. Thanks for your prayers.
We really don't need anything else right now.


Love, Anjie


I know some friends fasted also. I told our kids that we were fasting for Rylan and asked
them to do include him in their fast as well. Aubryn asked, “Why do we fast when
Heavenly Father knows what is going to happen anyway.  It doesn’t make a difference.”
I opened my mouth not sure what I was going to say. I feel similar sometimes.
God has a plan for us. I said, “It’s like when Eden called out for me when she tripped
and fell when she was down the road.  I ran to her. I comforted her.” When I told this
to Aubryn it kind of opened my own eyes. After Eden cried out to me, I decided to lift
her and carry her up the road back home. When we fast we get added help, comfort,
strength, faith, and sometimes when God hears our pleadings He lifts us up to take it
away.  Eden didn’t fall anymore. She did have a hard experience. BUT because she
called out to me I came and helped and even prevented more hurt. My comment to
Aubryn about fasting helped me.


Brad’s mission papers were submitted.


I continued through the days with a pleasant looking mask on my face. I felt hopeless inside.
I was feeling really down and anxious. The nights were long for me.  Everyday I hoped the
doctor would call. I felt like I couldn't plan anything. I didn't know what was coming. I felt the
whole summer might be Rylan's surgery and recovery.  Days turned to weeks.


May 8th, Reagan and Rylan had their school concert. It was great! I loved it! As I watched
Rylan down there on the stage singing and dancing, i started to cry.


Wed, May 16th, I wore my Killers shirt with the lyrics, “Don’t you listen to the never” from the
song 'Wonderful Wonderful’.  Brian commented about it. I tried to tell him what it meant. “It’s
like the desert is our doubts or depression and they say, ‘Don’t you listen to the never. Keep
praying for rain...Keep your ear to the shell.” (in the shell you hear water)  As soon as I said
the words ‘Keep praying for rain’, I started crying. I told him I was sorry that I was a mess,
but those words hit me. Keep praying. Keep thinking positive.


Friday, May 18th, Brad’s mission call arrived!  He busted through the front door and
said, “Look!”  
I squealed!
“I don’t know what to do!” he said.  
I said, “Open it!! Open it here or drive up in the mountain or go to your room!”
“I’m going in my room.” He ran downstairs and was only gone a few minutes when he
ran back up with a grin.  Then he read it to me and all the kids.
Brian was at work.  Brad left and drove to the office to read it to Brian.  It was super busy
and there was an angry man swearing at Brian.  Brian kicked him out and after awhile
they “paused” the office and Brad read it to everyone there!  Then he called his
grandparents and read it to them. Called to serve in the New Mexico, Albuquerque
Mission. English speaking. Sept 12 he reports.  I remember my dad said, “neato.”
Brad is thrilled.  He said, “It’s perfect.”


A boy mowed our lawn.  Like an angel, he mowed our lawn! Our mower was not
working. Our lawn was long.  We were so busy and stressed. He drove by and
offered. I almost cried. I was so grateful!


At 4:18p.m. May 18th I texted Dr. Mart.  “This is Anjanell Hawks. Can you please
call me before the weekend regarding Rylan.  An update would really be appreciated.”


Friday, May 18th at 5:40 Dr. Mart texted and called me.
Here is the text: “Sorry for taking so long to get back with you. I reviewed the MRI
scan the day after it was done and my measurements measurements are different
than those that were reported. I had one of our MRI experts, that I have great
confidence in, remeasure it again and he got measurements similar to what I did.
The ascending aorta measures 30 mm.  This is 6 mm smaller than we measured
on the echocardiogram. The Z score is 5.41 rather than greater than 7 which was
measured on the echo. As I explained in clinic the MRI scan is much more
accurate in measuring the aorta than the echocardiogram. This is great news,
I will continue him on his enalapril and see him back in the clinic in six months.
Thanks and have a nice weekend.”


He said on the phone that he looked at the MRI report the next day and saw that it
was different than what the Echo showed.  He looked at the scans himself and
measured it. He asked Dr. Hsu to measure also. His measurements were similar
to Dr. Mart’s.  They were both smaller than the echo showed. 30 x 28mm was Dr.
Hsu’s measurement. So they went with the 30mm. Which gives him a z score of 5.41.  
Dr. Mart told me to keep Rylan at his current dosage of the enapirel and to see him
in six months. I asked if the dose was too high if his heart had not changed.  
He said no. I asked if he felt surgery was inevitable for Rylan. He said he would
like to control his condition with medication. We want to keep it from growing and
as he grows his z score will lower.  There would not be a need for surgery. If his
ascending aorta gets larger with a z score greater than 7, then surgery would be
needed. He apologized for taking so long to get back. I told him that was a long
time to wait.  He apologized again. I really was not happy that it took three weeks
to call. (When he called I had to go into the bathroom and shut the door because
there was a child yelling loudly, “MOM! MOUUM!! MOOOOOM! MOM! MOM!!!”)


I was SO relieved!!!!!  I knelt down in my room and said a prayer of Thanks!!!!!  
As I walked downstairs Brian walked in from work. I told him and I started crying.  
He hugged me. I told Rylan. He gave me a slight grin as I hugged him. I called my
parents. My dad started crying.  So grateful!! I called Brian’s parents too. I was crying.
I was so overcome with, I don't even know what. I still am. I could cry.  I am
teaching young women's tomorrow and have not been able to focus at all.
I hope it goes well.

I'm so happy that surgery is not needed. I'm so grateful that the blessing given
in October was correct. I'm so thankful we could fast as a family and friends.
As grateful as I am that surgery is not what Rylan needed, I am very mindful
that some families have different outcomes. I have pondered that a lot. Many
moms do have to watch their kids go through open heart surgery and their kids
have to be braver than they should have to be.





 I painted this.  It represents hope.  "Don't you listen to the never.  Keep praying for rain.  ...Keep your ear to the shell."

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