Charlie's New Heart Problem

Charlie had a doctor's appointment today with the cardiologist to check up on his hear.  Below are the notes that Jan (my mother-in-law) took about Charlie's new heart problem.  His prognosis isn't the best in the world.  There is hope.  I am just thankful that I know that our family is forever and that Charlie will always be my little guy.  I know that no matter what happens that the Lord is orchastrating everything.

I will be getting a phone call from the doctor on Thursday telling me when the next step to helping Charlie will be.

Tuesday, October 4, 2011

The following is what we understand from Charlie’s doctor’s appointment today:

It was determined that he has pulmonary hypertension and that the right side of his heart is bigger and thicker than the other side.  The pressure is high in his lungs, which makes his heart work too hard (or something).  He has a flow gradient of 4, and normal is 1 (we don’t know what that means, but we’re including it in case somebody does understand that).  All of this is indicative of the fact that there is an obstruction (or narrowing) somewhere. 

If the obstruction is in his pulmonary vein, there will be nothing they can really do to fix it, and his condition will deteriorate.  A heart transplant is an option in this case but the likelihood of getting a newborn heart is not high.  If they could get one, that surgery would be somewhere else like in Boston or L.A.

If the obstruction is somewhere else (perhaps in an artery—or elsewhere?) nearby, there are medications they can try that could help that situation.  It is even possible that after being on a medication for a few years, the condition would resolve itself. 

The doctor is attending a cath clinic tomorrow (Wednesday) at Primary Children’s Medical Center.  This is a meeting in which all of the cardio people and echo people at the hospital get together and discuss patients’ problems and prioritize their care.  After the doctor talks to that group, he is going to schedule a cardiac cath test at Primary Children’s in which they will send a catheter or some other kind of monitoring equipment through the arteries in his groin up to his heart to try to discover where the obstruction is. 

It appears that the part of Charlie’s heart that had surgery on it before is looking alright.  There seems to be a bit of narrowing but nothing dangerous.  That problem has not caused this one.  It just seems to be that there was more than one heart problem.

Photo Op

Charlie's Fall photos with our pumpkin that we grew

Charlie in his Russian pj's

Charlie's Cardiology Appointment

Charlie had a check up cardiology appointment today.  Charlie was to happy and content for the first hour and a half.  Unfortunately the right side of Charlie's heart isn't doing too fabulous.  The doctor explained to me what it was but I really can't remember.  Charlie now gets to go back on oxygen to help the right side of his heart.  Sad, but when put into perspective of other crazy things that we have gone through I am glad that this is all that has to be done.  Charlie will be on oxygen for at least a month until his next appointment.

Something Slightly Interesting ... maybe

The other day we met the people who were the original owners of the house (in 1970) that we are living in.  They wanted to look around so we let them in.  It was interesting to hear what was the same and what was drastically different.  There were a few original things: living room carpet, kitchen counters, and bathroom cupboards.  Things that were drastically different: kitchen pantry used to be a bathroom, laundry chute from upstairs bathroom was blocked.  It was neat to hear their stories and they distinctly remember from the home.

The other day another person was holding Charlie and when Charles saw them he thought, "Hey we have a baby that looks just like him."  then he realized it was our baby.

Also the other day Charles and I were driving home and I happened to look in the back seat and thought, "Hey, there is a car seat back there.  There's a baby in it!  Where did that come from?"  Then I realized that we had a baby.  It was an odd moment.

House!

Since Charles got a job out in Tooele we have been looking around at moving out there once I graduate.  Grantsville is a lovely rural city very close which we want to live in.  Unfortunately renting is pretty expensive out there.  We looked around at buying a home, there are pretty good prices for homes out there.  We kept looking for a stellar deal and but weren't finding one because even foreclosures and short sales were pretty much market value.  Charles found out that building in Grantsville in a development was cheaper than even buying a foreclosure that would need major repairs.  So we decided to build.  It can be done in 2-3 months!  They started last week and things are coming along nicely.  Below are some photos that we took on Saturday when we went to Charles' work party.  They are supposed to start framing on Wednesday.

Charlie has had a few explosive poopies lately.  It has been ruining his cute onesies.  I tried all of our sprays that are supposed to take out stains and nothing was working.  I finally decided that I was going to take matters into my owns hands when he dirtied his cute hawaiian onesie and an entire blanket.  I scrubed them with our Irish Spring bar soap for a little and it came right out.  Since then I have been able to clean four other outfits this way and all have become perfectly clean!  I am so happy that I finally have a solution for potentially poop stained outfits.

Charlie's Baby Blessing

Charlie had his baby blessing on Sunday, September 4th.  My friend Rose came and brought her baby Isaac.  Isaac is six days older that Charlie so we took some cute photos of the little guys together.

My sister Colleen and her family came.  The three little girls loved holding Charlie and were very good at taking turns.

My Mom and Larry also came.  This picture was taken by one of my sister's girls (Amaya?).

Charlie is Growing Up

Charlie is growing up, let me count the ways...

1 - Charlie is attending college and doing great

2 - Charlie is learning to stand

3 - Charlie loves to sleep on his side.  He has actually learned how to roll onto his tummy

4 - Charlie's feet are getting huge!  These socks are supposed to fit him until he is six months

5 - Charlie only wakes up once at night at 3