Friday, September 30, 2011
Tuesday, September 27, 2011
A day at the doctor
We spent the day at Children's National Medical Center for a couple appointments.
The ENT surgeon who did the tracheostomy said he'd give Zachary an "A" for how good his neck looks and how well we've taken care of it. He said most kids in this situation have their trachs until they are about 2 years old and they no longer need supplemental oxygen. So that's about another year. They are quick to say that all kids are different so it could be sooner or could be longer. Too early to tell right now for sure.
The pulmonologist thinks he's making steady progress as far as his lungs go. He'd like him to be on the ventilator less and need lower levels of oxygen. We will be trying to wean both over the next month. The longer he needs the additional oxygen and pressure support to keep his lungs inflated the longer he's likely going to need breathing assistance.
We were discouraged to hear he only weighs 12 pounds, 14 ounces, just two ounces more than a couple weeks ago. He needs to grow as much and as fast as he can his first two years, which is the optimal time for lung development. It worries us that he's so small and that at his size even a cold or minor illness could put him in the hospital for weeks and jeopardize his pulmonary situation, requiring him to be on the ventilator longer.
The good news is that he will again be able to use a speaking valve, which caps his track so he can make sounds. This one will have a special oxygen attachment so he doesn't desat while he's using it.
So all-in-all, a pretty good report. Just need to grow some lungs, and fast.
The ENT surgeon who did the tracheostomy said he'd give Zachary an "A" for how good his neck looks and how well we've taken care of it. He said most kids in this situation have their trachs until they are about 2 years old and they no longer need supplemental oxygen. So that's about another year. They are quick to say that all kids are different so it could be sooner or could be longer. Too early to tell right now for sure.
The pulmonologist thinks he's making steady progress as far as his lungs go. He'd like him to be on the ventilator less and need lower levels of oxygen. We will be trying to wean both over the next month. The longer he needs the additional oxygen and pressure support to keep his lungs inflated the longer he's likely going to need breathing assistance.
We were discouraged to hear he only weighs 12 pounds, 14 ounces, just two ounces more than a couple weeks ago. He needs to grow as much and as fast as he can his first two years, which is the optimal time for lung development. It worries us that he's so small and that at his size even a cold or minor illness could put him in the hospital for weeks and jeopardize his pulmonary situation, requiring him to be on the ventilator longer.
The good news is that he will again be able to use a speaking valve, which caps his track so he can make sounds. This one will have a special oxygen attachment so he doesn't desat while he's using it.
So all-in-all, a pretty good report. Just need to grow some lungs, and fast.
Saturday, September 17, 2011
The sound of silence
Hello darkness my old friend, I've come to speak with you again . . .
I am reminded of the Simon and Garfunkel classic as I sit here in the dimly-lit hallway outside Zachary's room listening to the symphony of sound churned out by all the machines keeping him alive. I don't really even notice the noise so much anymore. It just serves as the soundtrack for the conversations I have with myself on nights like this when it's just me and them.
The obvious topic is when will Zachary get better? Will he have any physical or developmental problems because of his early birth? How long wll he be on a ventilator? Is he missing out on his babyhood because of all the medical crap he has to deal with? How can he be so happy? How is it that we are so lucky to have such a perfect son?
But there are others.
How will we get through this? Can we endure the physical and mental toll of staying up all night several times each week (and Erin being by herself during the days) when our nursing shifts are unfilled? Can we survive on one income? Do we even dare consider having another child? Will our marriage endure? When will Florida State win another national championship? (I was thinking about that tonight, anyway).
Today was a good day though. We had a date night tonight. Played mini-golf. Went to Ruby Tuesday. Shopped at World Market. Got ice cream. All in two hours. Tried to watch the FSU game when we got home but momma was tired and baby stayed up past his bedtime. Maybe next time.
Just me and my thoughts for the next six or seven hours.
I am reminded of the Simon and Garfunkel classic as I sit here in the dimly-lit hallway outside Zachary's room listening to the symphony of sound churned out by all the machines keeping him alive. I don't really even notice the noise so much anymore. It just serves as the soundtrack for the conversations I have with myself on nights like this when it's just me and them.
The obvious topic is when will Zachary get better? Will he have any physical or developmental problems because of his early birth? How long wll he be on a ventilator? Is he missing out on his babyhood because of all the medical crap he has to deal with? How can he be so happy? How is it that we are so lucky to have such a perfect son?
But there are others.
How will we get through this? Can we endure the physical and mental toll of staying up all night several times each week (and Erin being by herself during the days) when our nursing shifts are unfilled? Can we survive on one income? Do we even dare consider having another child? Will our marriage endure? When will Florida State win another national championship? (I was thinking about that tonight, anyway).
Today was a good day though. We had a date night tonight. Played mini-golf. Went to Ruby Tuesday. Shopped at World Market. Got ice cream. All in two hours. Tried to watch the FSU game when we got home but momma was tired and baby stayed up past his bedtime. Maybe next time.
Just me and my thoughts for the next six or seven hours.
Sunday, September 11, 2011
A walk in the park
So here's the happy family today in Old Town at a park along the Potomac River. We had a picnic with some friends who helped us with all the equipment. See below:
It was Zachary's first expedition out to somewhere other than the doctor or hospital. He did great. He saw some airplanes and met a bomb-sniffing dog who was patrolling the waterfront. It was good for all of us to get out of the house and enjoy the sun and fresh air. Hopefully we'll be able to get out and about a few more times before the weather gets too cold.
Saturday, September 3, 2011
Like father, like son
 |
| This is what I looked like 39 years ago -- and what Zachary will look like 39 years from now. |
Friday, September 2, 2011
Why I love you buddy . . .
1. Because you love me.
2. Because you smile at me when I kiss you.
3. Because you laugh when I make funny faces.
4. Because you look like me.
5. Because it is a miracle you are alive.
6. Because you are so cute.
7. Because you are so happy.
8. Because you are so tough.
9. Because I am your dad.
10. Just because.
2. Because you smile at me when I kiss you.
3. Because you laugh when I make funny faces.
4. Because you look like me.
5. Because it is a miracle you are alive.
6. Because you are so cute.
7. Because you are so happy.
8. Because you are so tough.
9. Because I am your dad.
10. Just because.
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