Wednesday, May 13, 2015

On Matters of Her Heart

I often wonder what to disclose on this site.  Just because something is part of our journey doesn't mean that everyone gets to have a little slice.  And sharing some things can be just downright scary.  But ultimately, I share because we need the prayer and the good vibes put into the universe.  And if I kept this one thing from our "journey" now I would be leaving out a big scary piece.  And I want to look back and know that it wasn't really all that scary and all things worked together for the good.

Back on March 30, Allyn had an echocardiogram.  Looking back, I'm really not sure why we haven't had one before given all of the issues.  We waited on results for over a month.  We emailed the doctor who put in the order just to touch base with him and make sure everything was okay.  Because surely if something wasn't okay they would have been in touch with us right away. 
 Well, finally last Tuesday our geneticist got in touch with us and they had reviewed it.  (We still aren't sure how it fell through the cracks and took so long for someone to review).  Ben took the phone call and he learned she had a whole in her heart, a PDA.  This is something that has been there since she was born and we should have caught it sooner.  Someone should have caught it.  We needed to be downtown Thursday for an appointment with a cardiologist. 

 So Thursday we have to take Nolan out of school at lunch time because on short notice it was pretty much impossible to find someone to watch him for who knows how long. 

 But he wasn't sad about it.  Not one little bit. 


 Neither was she, before the doctor came in.  But she SHUT IT DOWN when he arrived. We learned that not only does she have a smaller patent ductus arteriosis (PDA) but she also has a moderate to large size atrial septal defect (ASD).  Both of these are congenital heart defects and have been present since before she was born. 

These defects are putting a lot of stress on the right side of her heart.  She currently has a very enlarged right side of her heart and the pressure difference between the right side and left side is 30 mmHg (normal is closer to 5).  Additionally these defects cause slow growth, failure to thrive and increase sweating.  These are things I have been talking to every doctor about since she was six (SIX!!!) months old.  And never once did any doctor think to check her heart.  We were always so caught up in her spine.  I had high amniotic fluid during my pregnancy and we could never find anything.  She had an elevated breathing rate post delivery and we never thought to check her heart. 

I'm angry: at myself, at the doctors, at the world.  I feel like someone should have thought to check.  I don't know that it would have made a difference, but maybe it could have.  But I'm reminding myself that is done.  We have to move forward.  We have to fix this.  We came back from our appointment with a bit of a game plan but won't know more because unfortunately the hospital where we are seen is in the process of reworking their heart catherterization lab and there was a big cardiologist meeting in San Diego as we were learning all of this. 
 
After a long drive back from the city (why are all of our appointments over with just around rush hour?) we came home to play outside and share the news with our families.  I had to carry peanut around because she was wearing an ECG monitor for 24 hours and pissed off at the world about it.  The boys "leveled up" in a game of water guns.  
 

Oh, that monitor was not our friend.  
So now I'm repeatedly reminding myself that now we know.  Now we can piece together a game plan.  One that provides her the utmost quality care we can find and heals her heart and gives her still very crooked spine a chance.  I don't know if the two things are working together.  But I'm trying to have hope that she has a heart cath that is able to get the necessary diagostics and they can repair the holes during the procedure and open heart surgery will not be necessary.  The cardiologist reminded us that these are fairly common procedures.  And we are strangers to common.  But he did say her case was complicated so he would be reviewing it more this week and talking with other doctors and reviewing literature. 
 
So if you read this, say a prayer for her.  Say a prayer for us.  Let her heart be repaired.  Let it not impact negatively her spine.  Let it allow her to grow and thrive.  And let things start looking up.  

6 comments:

Lenette Sparacino said...

I'm praying for her and y'all, Shelley!

Adrienne Gilbreath said...

We just love Allyn and hated to hear this, but she and all of you are in our prayers daily.

Shannon said...

I found your blog a while back through Kelly's blog, but I've never written until now.

I'm sorry you got some scary news from the doctor. I grew up with various health issues and was always "the sick girl". Even as an adult, much of my health is still a mystery. Therefore, I totally understand what you are going through.

You certainly have a right to be angry and frustrated that some serious issues were ignored. I've been dealing with that lately myself. In addition to my regular bad health, about 10 years ago, I developed chronic pain to the point I became practically homebound because the doctors wouldn't help me.

A few months ago, a doctor finally learned a dangerously low Vitamin D deficiency that can result in full body pain. Thanks to vitamins and self care, I am finally able to have a more functioning life again.

Like you, I battle being angry at my doctors, especially since in my case the "cure" was a rather simple one. It's hard not to blame them that I essentially lost a decade of my life and I wonder how my life today would be different if I hadn't been so sick.

It's taken a lot of effort to realize dwelling on the past won't change the present or the future. I have to focus on the positive. I know what is wrong, how to help myself, and I am making progress to regain my life. Some things I'm now grateful for may sound simple to many people, but I have learned to be grateful I can now live a semi normal life and am learning things to continue to improve my health.

Don't beat yourself up for not figuring this out sooner. As society, we are trained to think our doctor has all the answers. It's when bad things happen that we learn you have to be your own advocate sometimes.

You did the best you could do with what you knew about your daughter's health. You've taken very good care of her and more importantly given her the love and care she's needed to thrive as well as she has even with several serious problems. Sounds to me like you all have been very blessed that she has done as well as she has despite some serious issues. I know it may not feel like it right now, but that is something to be grateful for.

I'll pray for Allyn's health and for strength to your family. Since you mentioned your struggles, I hope you don't mind if I share a book that has helped me. It's called "You Can Begin Again" and it's by Joyce Meyer. She talks about moving forward through hard times. I highly recommend it if you have time to read.

Good luck with the doctors. I hope they can find a good way to help your daughter.

Anonymous said...

I came across your blog through Kelly's Korner and as we used to live in Bentonville and the Chicago area, I continued to read your blog and pray for you and your family.
Our youngest daughter has an ASD and also has an enlarged heart as a result. She is 17 months old and is also really tiny. We only discovered hers by chance because of her size.
Don't beat yourself up ...you now know and will continue to deal with issues as they arise. God is with you and know you are not alone. We will continue to pray for you all!

Gail said...

prayers said from Texas

Anonymous said...

I read your post from time to time and I must say you are one strong family. However, after reading the last post I know how you feel. I had two daughters both had to have open heart surgery in 1986 at the same time. And not they are not twins, but 2 years apart. Once had and PDA and a small ASD and the other an ASD larger than a quarter. The one who had the PDA was 4 and they were able to close that up by going in through the back of the shoulder area, by performing this surgery, it did close the ASD. The other was 3 and they had to perform the open heart surgery. Both are health adults and living life to its fullest. One thing that did change is that they both grew and gained weight which was wonderful. Considering both were 8 and 9 pound babies and only weight 16/17 pounds at a year old. I wish you the best for your daughter, and now they can perform both of these surgery with out evasive surgery is just wonderful. Will be praying for you and your family...