I take for granted that friends and family know how Ira is doing and where he's at medically, physically, etc... Because I deal with Ira day in and day out I project on others that they know, too, how Ira's doing and what progress, if any, he's made. In talking with friends and family recently, I realized that people, in fact, don't know what the latest is with Ira. So here's an update on our little guy:
JUST SAY YES!
Ira is still on some of the same meds he was on when he came home from the NICU back in October of '05 -- such as, Prevacid
for his reflux, Viagra
for his pulmonary hypertension, diuretics (Aladactone
) to help alleviate the symptoms of hypertension by causing sodium and water loss through his urine, and nebulizer treatments (Albuterol
-a steroid) that help open and relax air passages so that he can breathe easier.
When Ira came home from the PICU back in April he was on three different barbiturates or sedation meds. He's down to one and he only has one more week of taking Phenobarbital
. I believe that Ira's strength and his personality are showing through now that we are finished (almost finished) with these particular meds.
There is no prognosis - a phrase we utter many times - as to when Ira will be completely drug free. I envision Ira needing drugs for quite some time.STANDING IS OVERRATED
These past few hospital runs to the PICU really hit Ira hard physically. Ira's OT therapist and PT therapist are pushing Early Intervention to allow more sessions because of Ira's need. He's 14 months old and he just mastered sitting up. He bears no weight on his legs. When we go through that routine with him, he shakes, sweats and cries. It's hard to watch. He still prefers the secondary grasp instead of the primary grasp (google it) and doesn't tolerate complete sessions with his therapists. The good news is that we've all seen Ira make progress. He went from being lethargic to active, from weak to strong. He's capable. It's just a matter of practice.DOES THE KID EAT?
He does indeed eat. And the cute little fat rolls on his body are proof. He doesn't eat anything through his mouth. All food - Pediasure - is given through his g-tube. All meds, for that matter, are distributed via his g-tube. We don't have clearance to start feeding him orally. He will have to take a series of swallow tests before they clear a speech/feeding therapist to begin feeding. It's not that Ira isn't interested in food. Tonight, as I ate my powder sugared doughnut, Ira looked on longingly. Definitely my son.OKAY, THIS IS ALL GOOD BUT WHAT EXACTLY IS THE PROBLEM AGAIN?
Ira's got lung issues. We used to talk a lot about the issue Ira was born with, congenital diaphragmatic hernia. But that's fixed. Left in the wake of that hernia were two severely underdeveloped lungs. And so Ira has chronic lung disease. In other words, Ira's lungs aren't what they should be so he has trouble breathing on his own. He has a vent to help him breathe. The vent does too much for me to explain here but the settings are high which is not a good thing. It just means that we have a long way to go before Ira is breathing on his own. In the meantime, I keep telling Ira that the ladies dig a man with tubes hanging out of his neck.COOL. SO WHEN'S HE GOING TO BE OKAY?
This is a question we often get asked. There is no answer to this question. We have no idea. The doctors have no idea. He could need breathing assistance for another year, five years or ten years. Possibly all his life. He could need drugs for his entire life. Physically he may never be where his peers are. And we haven't even started to talk about where Ira is neurologically. Just don't know. And we won't know for some time.
And here's the kicker: I'm okay with that. I'm okay with not knowing. Well, most of the time I'm okay with not knowing. Living one day at a time is not so bad. I'm - we all are - hard-wired to look ahead, to look into the future, to think about tomorrow. But with Ira, I'm learning to live today. I'm learning the essence of the word abide
. I'm exploring the depths of the word being
. It's not easy but if Ira can live today, so can I.