my day off

I took today off of work as I had to bring Youngest to the pulmonary specialist this morning and I knew the appointment would take a few hours.
He had a round of PFT's (pulmonary function tests) for the first time since he has been receiving his Xolair injections.
It occurred to me, as I sat there this morning, that I've never said the name of this course of treatment - not that I've ever made a point of saying the name of any of the medicines we've used. But there's no real reason I shouldn't mention the name of this drug and, perhaps, I should.
Once a month, Youngest gets two injections of Xolair, one in each arm, and then we sit for a while to make sure he's okay.
Xolair works by blocking the IgE in his blood. You can read about it here.
It's still a somewhat controversial treatment and still sort of new. We don't know how long we can use it, it is tremendously expensive, and not without risk and there isn't much historic data.
But, the fact of the matter is, before Youngest received these shots he had pneumonia between four and eight times a year and we were frequent visitors at the emergency room. Since these injections he has had two colds.
So, I thought I'd mention the name of the drug.
He carries an epi pen, I still worry (less though) and he feels very different.
Alas, though he is doing very well, today's tests show that he still has serious chronic asthma. And it isn't that Xolair would change that but it is sobering to see the test results.
His lungs function at about 70% of normal and they always will. Even though he has not had an attack in many months, his small airways are constricted.
Youngest was happy anyway. He ran the mile at school last week and beat his best time by quite a lot and is very excited. He looked tall and handsome and very grown up today and the doctor mentioned that she only treats kids until they are 21. That doesn't seem so far off.

After that? I drove him home for some lunch and then to school.
I went to the post office and picked up my mom and went and got K and Middle and we drove to Costco and they ran other errands.

Back at home K rushed to do some workwork and I hit my laptop to make some last minute travel arrangements for my boss.
K leaves Tuesday for a two week shoot on location - something he hasn't done in a long, long time.
I ran out to pick up Youngest, pick up Oldest, pick up Middle's pal J.
Everyone went back to work again, making phone calls, emailing, recording music, and we ordered in some pizza.
It was a long day off. Maybe tomorrow I'll sit around a little.

Comments

Any specialist visit, regardless of the outcomes, is mentally, physically and emotionally exhausting. Have a lovely weekend - do something nice before K departs (2 weeks! Yikes!)
Paola said…
It sounds like a great treatment if Youngest is improving like this.
I'm happy for K. Maybe not so much for you? What with your work, commuting and 3 young men ...
Crazy Mom Tats! said…
So glad for all of you that Youngest has had good response to this treatment. Makes the trips to the specialist bearable.

I do hope things continue this way. I had asthma as a child, and I ended up growing out of it to a certain degree. I haven't had an attack in years, but I still keep a rescue inhaler.

Enjoy the good times!
Rae said…
I can feel you in this post, how you want to make it all well, but you can't, and you admire how he deals with it, what a man he is becoming. Thanks for sharing.

Boy, am I curious about what K is doing!

And do! Sit around... just sit. xoxo
Sometimes you need a day off to recuperate from your day off.

Good to hear Youngest has responded to his treatments.
bunny said…
Though the treatment may or may not be worse than the disease, I always try to judge by quality of life. Glad he is doing better.
zephyr said…
May only good news continue from those visits.
Shanna said…
Glad you have found a treatment that keeps him out of the ER.
I can't believe that none of the very smart and funny women that read here didn't catch that you picked your mom up from the post office. ;) That is what I thought when I first read that line. I was like, "I thought her mom lived close. Why did she have to mail herself to her daughter?" Can you tell it is Monday morning here? ;)
blackbird said…
I looked at that sentence a few times - picking mom up at the PO and then let it go!
Wow. When you've mentioned Youngest's asthma, I had no idea it was so severe. So complicated. So scary. I'm glad things are on a good course-that must be some huge relief for all of you.
Anonymous said…
I thought you never ordered pizza! : )

Breathing easily is something that I simply take for granted. To not be able to? Wow. I bow down to Youngest and to you and K for working to get it all figured out.

jbhat