COOPER UPDATE….

This summer Coop has had a few "episodes" that were a little troubling and several incidents of severe chest pain so to say that we were surprised when we found out things he would be having another procedure this fall would not be very true.  We actually expected it.  On July 31st Coop went in for his 6 month appointment and they found that his valve was deteriorating quickly and there was more blood washing back through the valve than there was just 6 months ago.  That along with the other things made Dr. Kaine decide to proceed to yet another cardiac catheter.  However this one may be different.  Like always, they will go in and expand the arteries again for better blood flow and they will take a look around to see how things look from the inside.   This time however, if Coop's coronary system looks like it can handle it, they will attempt to insert the Melody Valve.  This is what we have been waiting for virtually since Coop was born.   

The Melody^® Transcatheter Pulmonary Valve (TPV) is a heart valve attached to a stent (wire frame) that functions as an artificial pulmonary valve for patients with failed pulmonary valve conduits. The Melody valve was specifically designed for delivery to the cardiovascular system in a tube called a catheter.  The Melody valve contains a valve with three leaflets that are similar to a human heart valve attached to a stent (wire frame). It is designed to allow blood to flow freely from the heart’s right ventricle into the pulmonary arteries which lead to the lungs. 

The catch is that Coop is small, smaller than the smallest kid to receive it who weighed in at 80lbs.  Coop weighs 40lbs.  The risks are rupturing his current conduit, stint fractures, perforation of a major artery and a thousand other things that I cannot remember, do not understand or cannot pronounce.  However, looking at the alternative, open heart surgery, I think these risks are the most positive.  

So the way this will work is we will go in for pre-op on the 18th with surgery scheduled for the 24th.  They are bringing in a team of doctors that will evaluate things right there during surgery and decide on the spot exactly what they are going to do.  If everything goes perfectly we could be out the following day and Coop will have a Melody Valve.  If they go in on the 24th and do not think his coronary system can handle the Melody Valve, then we may be looking at open heart surgery yet again and let me tell you we DO NOT like the risks of that one.  Everything is in place in our lives from work to school for this but getting Coop ready may be a different story.  

It is always a little different each time we come up for a surgery because Coop is older and understands more and fears so much!  He has shown fear and nervousness and even expressed both verbally about his upcoming procedure.  He even asked Sissy if she would take care of Bear Bear and Blanky if he dies.  I know to most that would be devastating but for us it is just Coop preparing himself as well.  I think not knowing exactly what this surgery will hold is a little stressful as well but I know his team of doctors will make the best choice possible for him. 

Today I received a call from Cardiology stating that Coop's last dental cleaning and exam that was in late March was too long ago and we needed to have his teeth looked at again before his surgery and if he needed a cavity filled they would need to do that 6 weeks in advance.  Considering we are already inside that 6 month time frame they said I needed to get him in today and any work he needed done needed done today too.  I laughed at the thought of even getting him seen today but thankfully our dentist was amazing and assured me we would get it taken care of.  Luckily Coop had no cavities so the check up was all we needed.  

As always, we are surrounded by so much family and so many friends I feel like we walk on air most of the time.  We have to be the luckiest family alive, but we still are happy to take any extra prayers anyone might have!

SO MUCH FUN….

LOOK AT THIS CUTIE WHO TURNED 2!  

AND 

LOOK AT THIS BEAUTIFUL LADY WHO TURNED 97!

Last weekend we headed out to Western Kansas to pick up the kids and celebrate my nephews birthday and my Grandma's birthday.  There was so much family there and we had a great time.  Coop has so many boy cousins and he is not used to that with our family of all girls.  I think he was in heaven!  Hunter had a fun birthday and is so cute.  He is horribly ornery but adorably cute!  A good mix I think. My Grandma is amazing.  She is still super sharp and gets along pretty well.  We played cards and just enjoyed every one's company.  My kids could not have been happier.  I am convinced they think Grandma's house is their own personal resort.  They are spoiled rotten but I love the fact that they get so excited to spend the week there.

 

This one is adorable as well, Hadley loves her cousins!

Hunter loved his birthday cake!

After we returned from Mom's the kids and I had a day of fun.  This has became a tradition that I take a day before school starts where we head to Kansas City for a day of fun and shopping.  Each year the kids get a new Build-a-Bear and we get their school supplies and other things they need.  The kids look forward to this day all year and we do have a great time.

 After out fun at the mall, we were starving so it was on to Fritz's.  The day was complete and we had a great time together.

When we got home we talked Terry into a bike ride.  I love this time of year!

 Tuesday was a crazy day.  I also took this day off to fulfill all of my PTO responsibilities.  It was a fun and hectic day.  We hosted a luncheon for the teachers and staff and then had an ice cream social for the kids.  Then before we knew it, Wednesday came and it was time to start school.  I am so proud of both of my beautiful children.  We are so fortunate to have them.  They both love their teachers and their class.  It seems it is going to be a very good year.  When we got to school and walked in I told Coop we would take Sis in to her classroom and then go to his.  He never stopped walking and just looked back at me and said, "It's all good, go with Sis." and he walked right down the hall to his classroom.  He is so independent and confident.  Raelynn grabbed my hand and directed me to her room.  She at least still needs her Mom a little!

EMOTIONS…...

Sometimes I have so much to say but really don't have enough time to say it so I just sum it all up and post pics that really tell what we've been doing.  However, tonight is a little different.  I still have so much to say and not enough time to say it but this time pictures just won't tell the whole story.  Life is full of emotions and I think they were all wrapped up in the past week……

So I left off on our last post as we were headed to CMH for Coop's cardiac appointment.  All I wanted was answers and we did get some.  The problematic valve that Coop has is leaking more now than it was just 6 months ago based on what they are seeing in the Echo.  We have always struggled with this valve as it has been worked on several times.  In order for the doctors to really be able to see what is going on in there they are going to do another cardiac catheter.  If you remember this is where they thread a long flexible tube up through his groin and up to the heart to get pictures of what is really going on in there.  This is an exploratory catheterization and used for diagnostic purposes.  However, his cardiologist thought they should take it one step further and be prepared for a surgical catheterization and be prepared to insert the Melody Valve if Coop's coronary system can handle it.  This valve is what we have been waiting for.  It is the first FDA approved Transcatheter Pulmonary Valve.  It is inserted through the flexible tube (catheter) and placed in the heart.  If able to preform this procedure it will eliminate the need for open heart surgery for the time being and potentially for quite a few years.  The scary part is that the catheter has to be fairly large and there is question whether Coop can handle this large of a catheter without fear of rupturing a Major vessel or worse.  The other scary part is that if his coronary system is not strong enough for the Melody Valve then how long can we prolong things before we have to have another open heart surgery?  If we were to have open heart surgery again it would be Coop's 4th in 6 years and those are not very good odds when you start looking at survival rates taking into account the scar tissue and other issues that arise from multiple open heart surgeries in a short amount of time.  Therefore, I have to say I am a little nervous this time.  Coop is as well.  The older he gets the harder some of the details and emotions about surgery and treatments get.  Coop knows everything is not alright and he knew when we went on Wednesday there were probably going to be some discussion as to what comes next.  He was very fidgety and at times acted very silly.  He was still wonderful during his testing doing exactly as they asked and even telling them where to put the "stickers" for his EKG but once Dr. Kaine entered the room he was nervous.  As we were all talking about what we may or may not do Coop said, "or we could not do it."  It made me sad because he so gets all of this now.  He has told me a couple times since that he does not want another surgery and I just remind him that I don't care to have another surgery either but that we will do whatever it takes to make sure he is here every night for me to snuggle with.  So that is where we are at; waiting for Margaret to call from scheduling and get us on the books.  Then we will start the waiting game, the game of trying to get every pound we can on Coop and the game of trying to avoid all illnesses!

Thursday I took the day off to spend at the fair watching Raelynn in her Rabbit Judging.  She made me so proud not in the ribbons she received but in the way she received them.  The girl is so in her realm there.  It is astonishing to me at how her passion gushes from her ever movement, every smile and every word spoke.  She had an amazing week at fair and did so very well.  I also cannot say enough about our amazing club leaders.  These people embraced Raelynn like she was there own.  They taught her so much and gave her such a wonderful experiences.  I really cannot say enough about this wonderful family.  There is no doubt in my mind that we found the best club in town!!!

After a long week it was finally Friday and web were headed down to Tom and Jan's at the Ozarks for the weekend.  Right before I left for work we got a call from Aunt Bonnie.  Charm, the horse Raelynn learned to ride on and the horse that everyone loved so much was going to have to be put down after a quick illness.  There were tears from all of us.  It wasn't until late Saturday night that it really hit Raelynn thought.  We were down at the lake and she had been in bed for a bit.  I saw her get up and I went to check on her only to find her crying hard.  She said she was saying her prayers and Charm just came into her head.  She said she was trying so hard not to think about it.  Her tears were not just for her loss but for Aunt Bonnie's and her cousin Megan who all had a special bond with Charm.  It was truly heartbreaking to watch her feel the loss of an animal and one as special as Charm made it even harder.  I finally convinced her that maybe now Nanny was in heaven riding Charm and she should be happy for them both.  This seemed to comfort her greatly knowing that Nanny and Charm were together.

Besides that sadness, We had so much fun.  Terry and I relaxed why Tom and Jan tended to our kids, Lol!  Really they did entertain them entirely.  We had a great time and only wished it could have lasted longer.  Thank you so much to Tom and Jan for opening their home to us and seeing to it that we had a fantastic time.  (Don't worry Jan I won't include how you caused me to sprain my wrist and bruise my knees, hahahaha).

We came back on Sunday and then the kids headed back to Western Kansas with my Mom.  I hate seeing them go.  I know I should enjoy my time alone and tonight as I ran a billion errands and didn't get home until 8pm, it was slightly nice to not hear anyone say "I'm hungry!" but that does not make up for the silence and emptiness of the house for the rest of the evening.  Those two make me laugh and bring so much happiness that is all just seems a little more boring without them.  I'm already counting down the days until I see them again.  Luckily I have some great friends that will keep me entertained while they are gone and MAYBE even Terry and I will take a little time to relax together.

Tonight and every night I thank God for giving me more love that I deserve and giving me more to love than I ever knew was out there!