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Saturday, April 25, 2009

The results...

Where do I start?

We got to the hospital Friday at 8am for check-in. I'll preface everything and just say that this hospital is beyond amazing. Being a children's hospital, their entire focus is on making the kids comfortable and the family involved, which in our case is a big task! I can't say enough about all the doctors, nurses, amenities and volunteers in the hospital. The nurse triaged BabyGirl and alerted us that the procedure was again delayed to 11a. This created 2 additional hours BabyGirl couldn't eat and the poor thing was STARVING. We played in the play area for a while, spending time with family as BabyGirl played. A child life specialist came by with a mask for her to see and some pictures of the procedure room, to kinda prepare her for the coming events. The nurse walked us back to the cath lab and opened the doors. There was no way BabyGirl was walking into the huge, scary room. Though it was muralled from floor to ceiling with colorful images, the massive machines in the middle of the room were the focus. The nurse allowed me to walk in with her and get her situated so she would be a bit more at easy. We sat her on the padded bad and the anesthesiologist showed her the mask. She panicked. So he took the mask off and just waved the tube in front of her to calm her. Over the longest 90 seconds of my life, I rubbed her leg and talked her into a sleep, reassuring her I was still there. She got a bit combative and reached out for me with fear in her eyes, which is probably an image I will never erase from my mind.

We waited. It took just short of 2 hours. I went to eat, which felt like the most ridiculous thing I could have possibly done, but I knew I wasn't leaving her side later. Every time the doors opened to that wing my heart stopped, hoping it was the doctor. When the doctor came out, he sat in the waiting room with everyone, allowing all the family to hear the results. He said he felt really good about doing the procedure and it answered the questions we were looking for, without having to do the transesophogeal echo. The left atrium of her heart was double the size it should be, and our question was why.

Myocardial Bridge causing Restrictive Cardiomyopathy, resulting in the Left Atrium being backed up with blood and large. Both very rare.

Myocardial Bridge- Literally a bridging of heart muscle over one of the major arteries to the heart (usually the left anterior descending artery). The heart has formed in this abnormal design from birth, whereby the artery is actually 'tunneled' through a part of the heart muscle.

Some pictures of the bridge:


This causes blood flow to be limited to the Left Ventricle, resulting in the second condition.

Restrictive Cardiomyopathy- A restrictive cardiomyopathy, the rarest form of cardiomyopathy, is a condition in which the walls of the lower chambers of the heart (the ventricles) are abnormally rigid and lack the flexibility to expand as the ventricles fill with blood.

This restriction causes the left atrium to not fully dump its blood into the ventricle, therefore it is full and large.

Turns out, she has probably never had asthma. I don't quite remember how, but one of these malfunctions or blood flow restrictions leads to the lungs. Her asthma like problems and coughing is all related to her heart not supplying her lungs with what they need. I asked the doctor what would have happened if we had not caught this. He used a bunch of smooth and loving words that all meant cardiac arrest. So I asked him how we fix this. He said we can put her on a med that will slow her heart down and cause it to not work so hard. I immediately knew in my gut this was the simple band aid for it, but not what would cure her or give her quality of life. When I told him that was just the band-aid, he said yes, it was. The best way to fix something like this is heart surgery. Go in and cut out that muscle area causing the blood flow problem, and HOPE that creates more blood flow to the ventricle, allowing that to be more flexible so the left atrium can empty fully. This is a condition that can come back though, as she gets older. So many unknowns. So many "if's" and "hopes". But really no other choice than heart surgery if I want her to be healed.

I don't really need to go into all the feelings I felt as I heard this, nor do I want to keep scraping that open wound I have to explain it on here. Fear, panic, helpless, stress, sick, petrified.... those words explain a fairytale in comparison to the reality of it for me.

After he told me the news, I really felt there was no other reason to sit there. He walked us back to be with her in the PACU. She was laying there watching a little TV, oblivious to the reality of it all. She spent a good 2-3 hours like that, laying there, not saying much. She spiked a fever but the amazing nurses quickly attacked it. She got sick, and after that it was like a new child was laying there. She started talking and smiling again. My baby was coming back. She had to lay there for 6 hours, straight and not moving her right leg. She did an AMAZING job, especially for a 4 year old. I know many adults who would have complained all the live long day about that! She ate a popsicle, macaroni, goldfish crackers, teddy grahams, drank Sprite and water. She was amazing. Of course, my mind was looking at her like this was only the beginning now. We took her home around 7pm, and she did amazing on the way home. She slept in our bed and had a restless night, but woke up pretty happy.

Next steps are consulting with the cardiologist, then cardiac surgeon, then surgery. I can't help but think of all the things I want to take her to do before then. I have no clue what time frame we are even looking at or how quickly they want to do this. But the comforting this is we have this time to prepare and do this, as opposed to finding out the hard way and being even more blindsided by it all than we are. I thank God from the bottom of my soul for my pediatrician who took a simple and typically harmless murmur, seriously.

We have the most amazing family and friends in our life, and we know that because of them and their love for my BabyGirl, we will walk through this together.


Karen said...

Oh sweetie!!! My heart aches for you and BabyGirl. I cannot even begin to imagine how your heart feels. That is just *so* much to process... You will be in my prayers, for healing, guidance, and peace. God is holding BabyGirl... Never lose sight of that... (((HUGS)))

Laura said...

Oh, my stomach dropped so hard reading this. I am so, so sorry that you and your sweet baby girl are facing this unexpected twist in the road. But as you said, how incredibly awesome that God brought about the circumstances that caused you to discover this now. He obviously has a plan, and He will sustain you! Many continued prayers.

Dahlia said...

Definitely still praying here. It's such a blessing you were able to catch it now, rather then when something worse could have happened! I hope that you get the comfort of knowing your game plan surgery wise very soon and that one surgery is all it takes. I can't imagine how hard this all is, but I truly believe God's hand is in it in how he allowed it to be discovered before it could have cost her her life.

Corey~living and loving said...

how how this made my tummy turn, and my heart sink. I'm praying and thinking of you!

Megan@SortaCrunchy said...

I'M just in tears reading this, Kristi. I cannot even wrap my mind around what you must be going through. There are just no words.

I am praying, praying, praying for you guys.

Anonymous said...

Oh no...I feel sick for you all. :( I am so, so sorry. I'll be thinking about you constantly. So many hugs and prayers.

Meghan said...

I, too, am in tears reading this. ALL my thought and prayers are with you and BabyGirl as you go through this, my friend.

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Oh my you have been through a lot. I'm in tears as I'm reading your blog. This is so heart-wrenching and I can't imagine how I would handle such a problem. I will pray for you.

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It must have been horrible for what you had experienced. I would not know how I can handle such a situation. This post made me so teary-eyed.