We started in the Pulmonary Function Lab getting his PFT done. It was difficult for him at times. Of course, being the wonderful mom I am, I stood by him and... took pictures! He loves it. I thought you'd want to see it too...
Starting out... with the nose clip on... (he's in a chamber that tests his lung functions)...
Ready.....
Blow blow blow blow... neck veins popping out.... slapping the leg cause he's gonna fall over if she doesn't let him stop...
He was worn out... This tests really challenge his lungs....
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It's kind of a strange feeling. Each time we go I hope the doctors are going to tell us the meds are working, or even better yet I want to hear them say it's all better and we don't have to come back. But they aren't saying that. It's a big let down. I'm trying to stay positive and hopeful but at times I don't feel that way. Neither does Joshua.
They said there is still no improvement with the medication. They are adding another medication to the mix. This one will be three times a day. Thank God for phone alarms!
Joshua asked several questions relating to longevity. He's wanting someone to give him a definite answer and at the same time knows no one can do that.
He's getting frustrated with it all and trying to deal with the day to day thoughts and emotions. He told the doctors he's tired of them telling him what he can't do. What it really boils down to is that none of us want to be told we can't do something because that "something" becomes even more desirable. It's not things he even does often. Just knowing you CAN'T, makes you want to even more.
So, we're trying to focus on the positives. Trying to find some new things to do. I won't lie, it's hard. It's frustrating. I want him to be considered FINE. I want him to NOT be considered SICK. He doesn't LOOK sick. He doesn't FEEL sick. Although, he is sick of people asking him how he feels. But he understands.
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At times, going to the University of Florida does put some perspective on things for me. As we wait in the waiting rooms, I watch the other parents bringing in their children. Some are just there for routine office well checks. But then there are the one's that are there who have more serious issues. I watched a dad push his very young daughter in, in her wheelchair. She only had one leg and was on a vent. She had to wait for him to look at her to get his attention since he was just out of her reach. Then I look at Joshua and think "there's no way he's sick."
We also had the wonderful privilege of meeting a fantastic young girl named Cat (her nickname) and her Nana. Cat is only 8 years old. She has familial pulmonary hypertension. (Her mom died 5 years ago from the same disease.) She was the cutest little girl, so happy and all smiles. Even though you couldn't see her smile, you knew it was there. It was behind her hospital mask.
See, Cat had a heart-lung transplant the end of March. She lived at the hospital almost an entire year before her transplant. She has such a great personality. She was such a breath of fresh air. She didn't speak like she was 8, she spoke like she was 28. She was very knowledgeable about her disease, her medications, her tests she was waiting to have done. They were the same one's Joshua was having done. The PFT, the 6 minute walk, labs, EKG, ECHO. Then we were both seeing the same doctor over in the clinic.
I'm so grateful I got to meet Cat and her Nana. Her Nana shared some good advice with me and it was just nice to talk to someone who had already walked this scary, winding road. It was nice to discuss treatment and medications with someone who has already taken them and knew what I was talking about who didn't have an MD behind their name.
Don't get me wrong... I love our doctors but it's nice to talk to someone who is living with it. I don't know if Joshua will ever be a candidate for a transplant or if he'll ever need one. I hope not. But seeing Cat was such a great boost for me. Thanks Cat.
And by the way... if you haven't signed up to be an organ donor, please do so. Please talk to your family about it. Tell them what you'd like. Then do it. You can sign the back of your drivers license but you also must tell someone close to you as well. Or go to http://www.donatelife.net/ to sign up.
I'm sure Cat's family is immensely grateful (an understatement, I'm sure) that someone made the heart wrenching decision to allow their child to donate life to someone else. Thank God for her donor and their family and their selfless gift they gave. If you're not already, please consider becoming an organ donor today.
The end. 
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