Tuesday, August 4, 2009
Day 21-Happy Three Week Birthday, Rafa Bird!
The second biggest day of our lives has arrived! Our precious jewel is in the OR right now, and we anxiously await news of his progress circa 10:00. More news later. Sorry if the format looks funky. I am using my IPhone and it's less than cooperative.
Monday, August 3, 2009
Day 20-And a miracle occurred...
Our baby boy finally got the break he so richly deserved!
Dr. Jennings ordered another rigid bronchoscopy to investigate how things were looking in terms of his upper airways before his big surgery tomorrow. And what he found was absolutely miraculous.
Because Rafa has been so excellent at growing lung, the lung he's grown has pushed out and propped up the airways that used to be so floppy! This means that the only procedure to be done tomorrow is pushing his heart forward so that his right bronchi can continue to expand and strengthen. Not because this is minimal by any means, but it's far less invasive and risky than what was slated for tomorrow and cuts his surgery time by two-thirds. WOW!
Needless to say, we were body-wracked with sobs of relief and joy this morning to hear the news. Miracle Boy has once again exceeded everyone's expectations and set his sights high.
And so have we.
Team Rafa has mobilized and it has won! His name doesn't mean "God healed" for nothing.
And for that, we are eternally grateful.
Dr. Jennings ordered another rigid bronchoscopy to investigate how things were looking in terms of his upper airways before his big surgery tomorrow. And what he found was absolutely miraculous.
Because Rafa has been so excellent at growing lung, the lung he's grown has pushed out and propped up the airways that used to be so floppy! This means that the only procedure to be done tomorrow is pushing his heart forward so that his right bronchi can continue to expand and strengthen. Not because this is minimal by any means, but it's far less invasive and risky than what was slated for tomorrow and cuts his surgery time by two-thirds. WOW!
Needless to say, we were body-wracked with sobs of relief and joy this morning to hear the news. Miracle Boy has once again exceeded everyone's expectations and set his sights high.
And so have we.
Team Rafa has mobilized and it has won! His name doesn't mean "God healed" for nothing.
And for that, we are eternally grateful.
Sunday, August 2, 2009
Day 19-One Hill Climbed, Another to Follow...
Always seems to be the case.
Dr. Jennings mentioned in passing on Friday that there could be a concern about fluid in Rafa's lungs, as in, in the lung tissue he's already grown. The culprit could be a narrowing of his superior vena cava (SVC), and while there are procedures to correct the problem, this could involve further surgery for our baby beyond Tuesday. The word on the street is that all of this testing is being ordered (echo-cardiogram and a cardiac cath, which means injecting contrast fluid into his heart and lungs to track blood flow) so that his surgeons aren't surprised on Tuesday when they go in to repair his airway. But that doesn't mean we're not scared out of our wits.
While Rafa is a source of infinite strength, he still needs his body to cooperate in order to heal and move forward with his recovery.
He's beat back similar demons before. Let's keep giving him all of the ammunition he needs to stay on the right path.
As soon as we know more, we'll let you know.
P.S. Auntie Edie, he loved "Rafa Bird." :)
Dr. Jennings mentioned in passing on Friday that there could be a concern about fluid in Rafa's lungs, as in, in the lung tissue he's already grown. The culprit could be a narrowing of his superior vena cava (SVC), and while there are procedures to correct the problem, this could involve further surgery for our baby beyond Tuesday. The word on the street is that all of this testing is being ordered (echo-cardiogram and a cardiac cath, which means injecting contrast fluid into his heart and lungs to track blood flow) so that his surgeons aren't surprised on Tuesday when they go in to repair his airway. But that doesn't mean we're not scared out of our wits.
While Rafa is a source of infinite strength, he still needs his body to cooperate in order to heal and move forward with his recovery.
He's beat back similar demons before. Let's keep giving him all of the ammunition he needs to stay on the right path.
As soon as we know more, we'll let you know.
P.S. Auntie Edie, he loved "Rafa Bird." :)
Day 19-"Have to Admit, It's Getting Better..."
Just called in to check on the babe, and the latest chest X-ray (from yesterday afternoon, after we were told about the pneumothorax) shows improvement! Hopefully, this means that it's clearing up on its own! Keep thinking those thoughts and praying those prayers! It's still working!
One more chest X-ray this morning to get through--believe with us that it's all gone!
Looking forward to the Cates-Addison clan visiting us this afternoon! I had the great pleasure of teaching with Dot Cates for a year at my previous school, Friends Seminary, and my mother had the great pleasure of being her daughter Julia's nanny for a few years. We're bonded for life.
They're returning from family time in Maine and making a pit stop in Boston to see us--very excited to have visitors!
Love to you all for following, praying, and believing in the miracle of strength that is Rafa...
One more chest X-ray this morning to get through--believe with us that it's all gone!
Looking forward to the Cates-Addison clan visiting us this afternoon! I had the great pleasure of teaching with Dot Cates for a year at my previous school, Friends Seminary, and my mother had the great pleasure of being her daughter Julia's nanny for a few years. We're bonded for life.
They're returning from family time in Maine and making a pit stop in Boston to see us--very excited to have visitors!
Love to you all for following, praying, and believing in the miracle of strength that is Rafa...
Saturday, August 1, 2009
Day 18-Rest, Rest, and a Pneumothorax??
Baby boy got a lot of great rest today and cruised through many great naps in preparation for Tuesday's go-round. Mommy, however, didn't do as well in terms of R and R.
Feeling like walking into Rafa's surgery in the dark is very overwhelming. Not because his doctors haven't kept us informed, it's just that none of his support personnel (nurses and ECMO techs) have been allowed to say "he'll make it through Tuesday," and that's a hard reality. I did get in touch with Dr. Jennings this afternoon, just to flat out confirm that he felt Rafa could make it through Tuesday and recover. If anything, he feels the recovery is more major than the surgery itself, and told me that, "if we can pinpoint exactly what Rafa needs (they're doing more testing Monday in order to do so), he'll make it through. It's a done deal."
How powerful a few words can be.
We are still in need of prayers and good vibes, especially since the testing being done on Monday could reveal that the bronchomalacia is in fact better than they'd originally thought, and could be remedied with a somewhat less invasive procedure.
PLEASE PRAY FOR THIS TO HAPPEN!
Last but certainly not least, the latest chest X-ray has revealed a small pneumothorax on the right side of Rafa's chest. This is a pocket of air that is between his lung and chest cavity. If this remains minor, it can repair itself (which it most likely is). If not, he'll need another chest tube put in--this after he "lost" one last night, more by virtue of gravity than anything else.
Again, let's work to give this baby a break, shall we?
Look for "The Thinker" picture in tomorrow's entry!
Feeling like walking into Rafa's surgery in the dark is very overwhelming. Not because his doctors haven't kept us informed, it's just that none of his support personnel (nurses and ECMO techs) have been allowed to say "he'll make it through Tuesday," and that's a hard reality. I did get in touch with Dr. Jennings this afternoon, just to flat out confirm that he felt Rafa could make it through Tuesday and recover. If anything, he feels the recovery is more major than the surgery itself, and told me that, "if we can pinpoint exactly what Rafa needs (they're doing more testing Monday in order to do so), he'll make it through. It's a done deal."
How powerful a few words can be.
We are still in need of prayers and good vibes, especially since the testing being done on Monday could reveal that the bronchomalacia is in fact better than they'd originally thought, and could be remedied with a somewhat less invasive procedure.
PLEASE PRAY FOR THIS TO HAPPEN!
Last but certainly not least, the latest chest X-ray has revealed a small pneumothorax on the right side of Rafa's chest. This is a pocket of air that is between his lung and chest cavity. If this remains minor, it can repair itself (which it most likely is). If not, he'll need another chest tube put in--this after he "lost" one last night, more by virtue of gravity than anything else.
Again, let's work to give this baby a break, shall we?
Look for "The Thinker" picture in tomorrow's entry!
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