Thursday, April 9, 2015

When No one is Looking

They say you can tell a lot about a person by what they do when they think nobody is looking. That makes me nervous because sometimes I sneak in a cookie or a drink in (gasp!) the middle of the day, or sometimes I spend too much time trolling social media, judging people, etc. I'm not perfect... In fact I am as pretty far off the spectrum from the perfect friend, wife, sister or businesses woman I should be that it's pretty eye opening. But one thing I know we are doing right is being parents. 

Are Chris and I's children perfect?? NO. If you've ever had Ben or Alex over for more than an hour you've probably ended up with pee on your floor or poo'd up toilet paper in your waste basket. If you've hung out with Dori you know he hits people for fun and he'll throw an epic fit if he doesn't want you near him. The only one who is perfect is Wynnie because I honestly cannot say one negative thing about him. Not because he is an angel in heaven but because he was an angel while he was on earth. That's the truth!  

But when I sneak around and observe what the boys do in our house when they think no one is looking, I feel perfectly content. I see Alex going to Dori's room and picking him up out of his crib and talking to him. I see Alex running over to Dori if I'm tied up and start singing to him if he is crying to calm him down. I see Ben staring at Dori's pulse ox machine with a worried look on his eyes and pumping his fist and saying "YES!!" under his breath when Dori's numbers creep up to the safe zone. I see Ben staring at kids with special needs out in public and seeing his eyes get watery because he thinks it's not fair that some kids have to have special needs while most don't. I hear Dori in his crib by himself laughing, singing and talking all to himself (don't care if you think I'm nuts, I know that's Dori spending quality time with Wynnie his guardian angel!).  Dori is joy personified. I see Dori talking to Luna and holding his arm out so she can lick him. I see so many beautiful things from people who think "nobody is looking".  

Chris and I sometimes lose sleep over what the future holds, but just like Dorian's occupational therapist told me in tears today "your boys have had a life changing emotional year, but you and your husband have done such a wonderful job at being brave and keeping calm through it all." She said "you're lucky you have a good husband because this would all be so much harder if you were a single mom."  So yes that comment makes me thankful Chris hasn't gone half nuts in a midlife crisis and decided to leave me for a newer model, less stretch marks, less baggage.  That's an appealing ticket to normalville and really who purposely wants to have a life harder than it should be? But it does make me realize that even on the hardest of days, things could always be worse. I give thanks to God that it isn't. I know God wouldn't have placed these challenges in our path if he didn't think we were strong enough to be victorious in his name through it. He wouldn't set us up for failure. 

In the meantime my sons' half nuts mom will continue randomly drinking a vodka-7 at 4:30 on a Tuesday afternoon hidden behind a door watching.... but this momma is proud of the little men in our home. We're not perfect, and grass is certainly always greener on the other side, but we've been given an extraordinary set of challenges and have managed to handle them with hope, love and faith. So many people have continued to touch our lives and reaffirm so much goodness to us. I only hope someday I can show how grateful we are for all the little gestures we've received in this journey. 

Friday, April 3, 2015

Cardiac Check, new game plan

Ever since his hospitalization last week, Dori has been irritable and sweating a lot more than normal. After having a post-hospitalization follow up with his pediatrian (Dr Wardell) yesterday she took notice of all his sweating and drew blood for lab samples. 
His white blood cell count was elevated quite a bit which means his body is still fighting infection. After conferencing with his pulmonary doctor and his cardiologist, they all agreed that the sweating is likely due to his heart working harder. 
Our options were to take him to the ER yesterday afternoon or just keep him comfortable at home and bring him in for an outpatient cardiology appointment this morning. We chose to let him rest at home and the cariology clinic very quickly and kindly accomodated all the troops to have him seen today. 
With our oxygen tanks running on low, we were able to directly connect him to the O2 they have connected to the exam rooms. Wish we could trick out our house with built-in oxygen outlets in each room! Ha ha! 
He had two different tests ran to see his heart function. Contrary to normal, he was very calm and napped through most of the testing. Here's a picture of his heart 

Dori has always had an enlarged heart with an aortic valve leak.  Since his last examinations from this past January, it really hasn't changed much in the past couple of months. But something that was new in January was a mitral valve leak, and that leaking (regurgitation) is worse this time. 

So the cardiologist gave us the options to either 1) treat it with more frequent dosing of his Lasix at home OR 2) admit him in the hospital and let them treat it with more frequent dosing of Lasix at the hospital.  We chose option #1. 
She said his lungs sound like they are still working hard to battle the viruses which haven't completely left his system but that with everything we are doing at home, the cardiology team is comfortable with our ability to bring him through this at home. 
We are very thankful for Dr Catherine Ikemba for stepping in and getting Dorian seen as soon as possible today at the heart clinic.  She worked well with Dr Lemler (our usual cardiologist) and was very thorough. It makes a huge difference when we work wirh doctors who are willing to listen, ask for our input, and talk to us like we're all on the same team, as equals. Team Dori continues to be strong and we look forward to seeing him slowly get better at home surrounded by all the crazies that love him.