Heart Cath.

I'm nervous. Usually I'm not a chatty person but just to keep my mind off things, I found myself talking to anyone who would talk back. I don't know why I was so nervous, it wasn't like he was having surgery. I guess the thought of a tube snaking through my baby's veins and into his heart was worse then the thought of surgery.
I give him a quick kiss before they wheel him downstairs at 8:30, then we go back to the McDonald house to wait.

Dr. P calls me around 1:30 to have us meet him at 2 to discuss the findings. At 3:30, Dr. R comes by to talk to us.
"I saw you staring at me so I figured you wanted to talk"
I laugh, I do tend to give the doctors the stink-eye when I'm waiting for news. He tells us that Peanut handled the heart cath. just fine. He is swollen from the dye they injected but thats nothing to worry about. His pulmonary pressure is good and his right ventricle (RV) pressure is higher, but that it so be expected since he has a band on his pulmonary. His left ventricle (LV) pressure is higher then normal as well as the LV muscle is larger then it should be. He says the pressure in his LV isn't high enough to cause that much muscle growth and that he doesn't know why. It points to another heart disease called hypertrophic cardiomyopathy-enlargement of the heart muscles. This doesn't fit in with his Williams Syndrome at all and would cut his life expectancy down to one year.

It's hard to explain the feeling you get when he are sitting next to your husband hearing bad news about your child. You would hold his hand but you are too busy wringing your own and you would watch his reaction if you could take your eyes of the doctor. I could only listen and take notes. To me, the cardiomyopathy doesn't fit in, so I push it to the back of my head.

He goes on to explain a few more things, we chat about the weather and his goats. It's cool to have a cowboy as your cardiologist. He's not so intimidating when he see cowboy boots and jeans under his doctor's coat.

An hour later, Dr. P finally arrives. We give him a hard time about taking so long. We've been here long enough we can do that. He tells us about the same thing, except he adds that Peanut does have Pulmonary Stenosis-the veins leading into and out of his heart heart to his lungs are narrowed. This is making it harder on his heart to pull blood in from the lungs AND push it back out to the lungs. This could be why his LV muscle is getting bigger. He doesn't mention cardiomyopathy, which makes me feel a little better.

We don't stay long, Hubby's co-worker and his family have arrived to take us out to dinner. Besides my parents and Hubby's dad and his girlfriend, no one has come to visit us. It is such a generous gesture, Hubby and I were both very moved that they drove all that way just to stay a couple hours and go back home. Not to mention they dragged both their kids with them. J Jr. is two and Madison is 5. Madison has cardiomyopathy and we had known that before we even had Peanut, so watching her struggle and seeing her condition is what made us so wary of the disease. Madison will have to have a stomach tube the rest of her life, she doesn't talk, she's in a type of wheelchair, and she has a trache in her throat helping her breathe. Her mother tells me that after her heart surgery they put her on Captopril and sent her home. Well, she wasn't eating very well and coupled with the Captopril, it destroyed her kidneys. So Mom immediately offered her daughter one of hers. Now she will tell you it was no problem and she would do it again, but one of the ladies here at the McDonald house told me Mom almost died from the procedure. She had multiple blood clots and almost didn't make it.
This blew me away. I cannot imagine having a child in the hospital THEN having your wife almost die. I am very honored to have them as friends. They have been so supportive and are honestly the only people we know personally who can understand what we are going through. They had the same cardiologists, stayed at the same McDonald house, and J even works at the same prison as Cody. With the exception of a Williams Syndrome mom I met (Hi Kelly!), I haven't personally met anyone else who can say "I understand".

After saying goodbye to our friends, we head back to the hospital to see if there is any news. We talk to Dr. P again who says that all the cardiologists are going to have a pow-wow Friday and try to come to some sort of decision. We ask if it will be surgery, and he say yes but it probably won't be surgery on his pulmonary stenosis. That kind of procedure is very risky and the outcome probably wouldn't be worth the risk.

The day has wore. me. out. Hearing news in the morning, then hearing it change in the afternoon, then it changes again in the evening-it really takes a toll on your mind. You hear he's fine and you can go home, then he gets worse, then its "we don't know why", then its "he needs surgery", then "he has a new condition, or wait, no he doesn't"....AAHHHGGG. The emotional roller coaster of this experience has to be the hardest thing to deal with. I can handle good news and I can even handle bad news; but when you get them both on the same day and the story keeps changing? Forget it. My brain is mush.

I literally have no room in my brain for anything other then Peanut. I forget everything. Social Security appointment? Forgot it. Meeting with the social worker about Medicaid? Forgot it. My brain has been completely taken over by medical terms and doctors and updates and medicine. No more room for bills, pediatrician appointments, dentist appointments...nope. Gone.

So my notebook stays full. Full of to-do lists and don't-forget notes. And I expect it to stay that way for a long, long time.

Signing out,


Camille's Knit Knacks said...

Wow, that was quite a lot to digest at once. Doctors don't know everything, and we too have been pointed in the wrong direction for various issues as well. I'm sorry you are having to go through all of that.
SO nice to hear that your friends drove all that way to take you out to dinner. I think through this experience you'll find out who's in it for the long haul with you.
I wanted to do something small for you, if that's ok - I knit baby hats (check out my blog, it's www.knitknackhat.blogspot.com) and then sew a felt applique onto it. I know with being in the hospital he probably is mostly in "hospital garb" but I wanted you to have something uniquely his while he is staying there. If you find one you like, let me know and I'll whip one up for him (also feel free to mix up colors/appliques, it's completely custom!). I'll also need the address for where to send it (and will need to know about-ish how much he weighs, I'm thinking he's probably small so the newborn size would fit, but you can just let me know). You don't need to publish this comment, it's all long and rambly anyway. But I didn't have your email address and wanted to offer a hat just for something fun :) If you are interested, send me an email at cjlakjer@yahoo.com

Kristin said...

I wish you nothing but wonderful things for Corbin. My son is Corbin also and he was born heart healthy but my daughter Khloe was not. We are doing a heart cath here shortly after her 4th birthday on the anniversary date of her going into nicu. I wish you lots of luck and I hope he thrives and you get out of the hospital

Time will pass and once things slow down you will get to enjoy your time but for now enjoy what you have and mush for brains is normal it is hectic and scary and everything in between.

Good luck sweetie. To you and yours.
One heart mom to another lots of love!

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