Wednesday, October 15, 2014

update on life.. funerals, hospitals and heartache

3 months since my last post. Ive been in a not so great place these last few months which makes writing in here difficult.  Capri has been relatively well.  She had a week in patient stay the end of August due to Salmonella poisoning and strep in her blood.  We had a scare that she had endocarditis and was not sure if she was going to make it.  She had a TEE (trans esophageal echo) done while inpatient where they discovered some of her pulmonary veins had narrowed  since her last echo.  They were concerned that this could be the reason why she has needed more oxygen.  We came back a month later to go into the Cath lab to check her pressures and possibly stent her veins.  They discovered that the blood  has taken a new (and quite complicated) route to get through the heart.  It even created a new very large vein on the left side that is shunting a large amount of the blood.  Normally they would seal that vein off but right now it is what is keeping the pressures in her head low enough to stay alive so they are just leaving it alone.  We have lots of doctors on her team with lots of different solutions as to how to fix this new pressure problem.  From as simple as adding new medication to as complex as listing her on the heart transplant list and hoping she will receive a new heart. Home life has changed a bit in the last month, we have gone from 4 meds 3 times a day to 7.  she has gone from oxygen as needed once or twice a week to being on it full time at 1/2 liter.  I see that she is retaining water and working harder to breathe but she is still her happy smiley wonderful self. 

We met someone who has become one of my best friends back in June.  There little boy was in the CICU awaiting his 3rd open heart surgery (and was only 6 months old).  I instantly bonded with this mom as we discovered all of the things we had in common, including living just a few blocks from each other.  Listening to her story of living almost the entire life span of their baby in the hospital is heartbreaking.  Capri for sure has not had it easy but this month  she has officially been home more of her life than in the hospital (7 months hospital, 8 months home) I watched this amazing mama struggle with the ups and downs of the CICU life and watched their baby boy get sicker and sicker.  They finally placed him on the transplant list and hoped for a miracle.  Not long after (I think a little over a month) Ryder decided he had fought long enough and was ready to go home.  He passed away on August 21st in his mamas arms. you can read the story of his last day on earth at
 That day changed me.  I have known people whos children had passed away, ones who had affected me and I grieved for them, but it wasn't the same.  It isn't fair that someone who is such an outstanding mom, someone who did everything right has to go through this.  So many of our experiences were similar, Ryder just always had to one up Capri.  His death brought me back to our reality that we don't know how long Capri will be with us.  I have told myself this and I have prepared for it but isn't something you can prepare yourself for.  Its not something you will ever be ready for.  Its something that I beg and plead that will never have to happen to us.  That Capri will keep being that miracle baby and surprising the doctors. And every night I think about sweet Ryder and his mom and dad.  They are such an inspiration to me.  The way they have dealt with this tragedy absolutely amazes me.  They both are my heroes. 

On September 10th my mom called and told me I needed to get to Wyoming right away.  My wonderful grandma was diagnosed with ovarian cancer in October 2013, and was at the end of her fight.  I pulled Ashton out of school picked up my little brother who lives in salt lake and made the 7 hour drive to Wyoming in 5.
We got to the hospital to see my grandma in an incredible amount of pain.  She wasn't able to eat or drink anything.  She didn't want to talk or even move very much.  My sister mom and I slept in her hospital room fearing it would be the last time we saw her alive.  The next morning however, she woke up and was her normal feisty self wanting to know why in the hell she was in the hospital :)  We spent the next several days by her bedside talking about times when we were young, favorite memories and being flooded with people from the community who loved her. I had to bring the kids back to salt lake the following week because Capri had a swallow study and an appointment with neuro surgery to get a CT scan that I just couldn't miss.  On September 18th my dear sweet buba passed away.  How is it that in one year someone can go from healthy as can be to cancer viscously attacking their entire body?  Its not fair.  Death is not fair.. I need my grandma.  She was always around.   the first person to greet us when we got to Worland and the last one to say goodbye.  the one who would tell me everything was going to be okay with Capri even though we both knew it might not.  The one who was the first to tell me if I had put on a few pounds and needed to start watching my weight. God I miss her so much. 

So if you see me in the community and I don't say hello, or I seem like I have a cloud looming over me its becaue I do.  I am not as strong as you think I am.  I break down when I get home where I cant be seen.  I tell you over and over again about my daughter and how she is doing fine because I am trying to convince myself that she is okay.  that I am okay.  that this too shall pass...