So, for those of you who have known me for at least the last 23, almost 24 months, and maybe even less.....you know what we've been through with Nickolas since he was born.
You know the endless doctor visits, more surgeries than I can count on one hand, formula after formula, medication after medication, and so on.
You also know that when he was diagnosed with Congenital Sucrase-Isomaltase Deficiency Disease that I searched the end of the earth for help......went through 4 doctors and finally found someone to help....who said he was misdiagnosed.
In my quest for help then, you watched me sift through doctor after doctor....no one seemed to be the perfect fit. They all just kept blaming the disease not wanting to take the blame themselves. Then, finally, I found just the right fit with someone at Arnold Palmer. He was able to explain the disease to us....and ultimately help us. Even if Nickolas hadn't been mis-diagnosed, I'm confident that Dr. Bornstein would have still been the right person to help us. So, I'm not saying he helped us because he made it disappear....I'm saying he helped us because he cared enough to give us the very best care.
Since October of 2007, we've had the same Pulmonologist. Visit after visit I kept telling Josh that something was off about him. Things never got any better, but I just kept telling myself he's listed as one of the top 10 Pulm's in the country, he knows his stuff--deal with it. And, up until the past few months, I dealt with it. But there are two things that sent me over the edge.
1.) During a sick visit in October, when being led to the room, one of the nurses commented on a dog that ran past...."Isn't he sweet? He's Dr. (name left out for privacy) favorite. He brings him with him....it's patient therapy."
So, okay, most people would agree that animals have been known to aide in therapy in certain circumstances....but am I the only one on this planet that thinks there's something wrong with dogs (I later found out there were 3 there that day, not just 1) roaming around a pulmonology office....a place where some kids can't breathe because of them?? A place where some kids need the cleanest air possible?? Okay, so I let this one go...for now.
2.) On my next "well" visit....just about 1 month later....here's the conversation:
"Hey Nickolas." "Mom, how's he doing?"
"Not well. We've already been in the hospital once since we last seen you."
"Okay. Well, I'll get you refills on your meds."
(He leaves the room)
"Here you go. Let me know if you need anything."
Okay, did I miss something? I said not well. And he didn't even bother to ask why (now mind you I already told him he was in the hospital, but still...he didn't even ask why??). He also gave us a new med at this appointment, but left out details like...there's a black box warning on this...and it's not approved for use in kids under 12, etc...
Don't get me wrong...I didn't search for other options just because of those two instances...but the second occurrence happened pretty regularly with him. The only times I could actually get him to tell me anything was if I poked at him. That's not the way it should be.
So, I started on a quest. A quest that led me to USF Health Center on Davis Islands. I absolutely LOVE the physician and ARNP there. The ARNP spent nearly an hour with us going over history, getting information, giving us some information, etc... Then, when the doctor came in, he spent well over an hour with us. Not only did he get a history, again, but he helped us understand how everything fit together. He explained the bronchial malacia and what it means for Nickolas (and us) both now and long term. He was SO wonderful!
So....what's my moral???
As I was driving home from work today I was talking to Nickolas' Speech Therapist on the phone and I was telling her about our appt. today and how excited I was. And, then, I got kind of angry. I thought about how I felt with the old pulmonologist and I wondered how many other people out there probably felt the same way...but wouldn't do anything about it....or didn't know how to do anything about it. WE, as parents, are our children's best, and only in most cases, advocate. If we don't search for the things they need, who else will? It's not fair (and unacceptable as far as I'm concerned) that parents are forced to see certain physicians because of a health plan...or stay with a physician because of ease. We drove to Shands for crying out loud...and we would have gone anywhere if it meant the best care for Nickolas. Why is that so hard for some people? Or is it because they don't know they have options? I know when my ped referred me...she said they just rotate between them to be "fair." Thinking back on my experience now, I wish I would have been given the option....what's not fair is feeling like I wasn't given the choice. The thing is....if I don't speak up....if I don't search to the moon and back...who else will? How would I have ever known that the new Pulm would be the best thing for Nickolas? I wouldn't have.
That being said...I'm so thankful that I live in a country that gives me that right to choose. I'm glad I don't have centralized health care where I have to wait months, even years, to see a specialist. I'm thankful that I have the liberty to choose. I just wish more parents would make that choice!
You know the endless doctor visits, more surgeries than I can count on one hand, formula after formula, medication after medication, and so on.
You also know that when he was diagnosed with Congenital Sucrase-Isomaltase Deficiency Disease that I searched the end of the earth for help......went through 4 doctors and finally found someone to help....who said he was misdiagnosed.
In my quest for help then, you watched me sift through doctor after doctor....no one seemed to be the perfect fit. They all just kept blaming the disease not wanting to take the blame themselves. Then, finally, I found just the right fit with someone at Arnold Palmer. He was able to explain the disease to us....and ultimately help us. Even if Nickolas hadn't been mis-diagnosed, I'm confident that Dr. Bornstein would have still been the right person to help us. So, I'm not saying he helped us because he made it disappear....I'm saying he helped us because he cared enough to give us the very best care.
Since October of 2007, we've had the same Pulmonologist. Visit after visit I kept telling Josh that something was off about him. Things never got any better, but I just kept telling myself he's listed as one of the top 10 Pulm's in the country, he knows his stuff--deal with it. And, up until the past few months, I dealt with it. But there are two things that sent me over the edge.
1.) During a sick visit in October, when being led to the room, one of the nurses commented on a dog that ran past...."Isn't he sweet? He's Dr. (name left out for privacy) favorite. He brings him with him....it's patient therapy."
So, okay, most people would agree that animals have been known to aide in therapy in certain circumstances....but am I the only one on this planet that thinks there's something wrong with dogs (I later found out there were 3 there that day, not just 1) roaming around a pulmonology office....a place where some kids can't breathe because of them?? A place where some kids need the cleanest air possible?? Okay, so I let this one go...for now.
2.) On my next "well" visit....just about 1 month later....here's the conversation:
"Hey Nickolas." "Mom, how's he doing?"
"Not well. We've already been in the hospital once since we last seen you."
"Okay. Well, I'll get you refills on your meds."
(He leaves the room)
"Here you go. Let me know if you need anything."
Okay, did I miss something? I said not well. And he didn't even bother to ask why (now mind you I already told him he was in the hospital, but still...he didn't even ask why??). He also gave us a new med at this appointment, but left out details like...there's a black box warning on this...and it's not approved for use in kids under 12, etc...
Don't get me wrong...I didn't search for other options just because of those two instances...but the second occurrence happened pretty regularly with him. The only times I could actually get him to tell me anything was if I poked at him. That's not the way it should be.
So, I started on a quest. A quest that led me to USF Health Center on Davis Islands. I absolutely LOVE the physician and ARNP there. The ARNP spent nearly an hour with us going over history, getting information, giving us some information, etc... Then, when the doctor came in, he spent well over an hour with us. Not only did he get a history, again, but he helped us understand how everything fit together. He explained the bronchial malacia and what it means for Nickolas (and us) both now and long term. He was SO wonderful!
So....what's my moral???
As I was driving home from work today I was talking to Nickolas' Speech Therapist on the phone and I was telling her about our appt. today and how excited I was. And, then, I got kind of angry. I thought about how I felt with the old pulmonologist and I wondered how many other people out there probably felt the same way...but wouldn't do anything about it....or didn't know how to do anything about it. WE, as parents, are our children's best, and only in most cases, advocate. If we don't search for the things they need, who else will? It's not fair (and unacceptable as far as I'm concerned) that parents are forced to see certain physicians because of a health plan...or stay with a physician because of ease. We drove to Shands for crying out loud...and we would have gone anywhere if it meant the best care for Nickolas. Why is that so hard for some people? Or is it because they don't know they have options? I know when my ped referred me...she said they just rotate between them to be "fair." Thinking back on my experience now, I wish I would have been given the option....what's not fair is feeling like I wasn't given the choice. The thing is....if I don't speak up....if I don't search to the moon and back...who else will? How would I have ever known that the new Pulm would be the best thing for Nickolas? I wouldn't have.
That being said...I'm so thankful that I live in a country that gives me that right to choose. I'm glad I don't have centralized health care where I have to wait months, even years, to see a specialist. I'm thankful that I have the liberty to choose. I just wish more parents would make that choice!
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