Thursday, January 13, 2011
The Shining
Our city continues to be at a stand still because of snow/ice, school has been cancelled all week but miraculously my husband can get to work. The nurse is driving me bonkers. Tater is sick. Both boys are stir crazy. I have given myself a timeout in my room for 3 days so I don't start hearing REDRUM and snap anyone's head off. That is all.
Monday, January 10, 2011
SNOWPOCALYPSE!!!! 2011!!!!
Today we had our second huge snow of the season! We woke up Christmas morning to 6 inches and woke up this morning to 8 inches. It's cahrazy. Nate started running a fever last night and didn't get to spend a lot of time out today because he feels puny but Toser has been out for 3 hours straight. He and Mr. A snagged a sled from some friends and went sledding down a huge hill. Toser apparently had a blast but didn't love hike back up. It's a steep hill I walk with my friends sometimes and it's a definite killer to walk up. They're frozen at this point so I'm off to make a hot dinner for them. Here are some pics:
Thursday, January 6, 2011
Confession
Okay, listen. I tend to err on the side of DRAMATIC. If something is only so-so, I can make it SO-SO-SO. It's a gift that makes life very exciting.
So yesterday. Tater and I left for Birmingham, it was raining, my stomach was in knots. I really wanted to call and cancel. But we went- Tater all snuggled in his seat watching Mater's Tall Tales, laughing out loud; me calling Mr. A every 5 minutes so I could complain about the rain and not wanting to go. We get to clinic, which is actually not that bad because patients are seen in the sleep clinic rooms which are sooped up hospital rooms with TVs. We see nutrition, respiratory, etc., individually. They all meet to talk about Tater then come back to talk to us together. I had told our care plan nurse about going to Cincinnati but no one was bringing it up in the summary talk. They were telling me about their plan for the next few months and I started stuttering about how we want to take Tater to Cincinnati because of the ENT team and uh, uh, uh....
Tater's pulmonologist said she thinks going to Cincinnati is a good idea and they only want us to have all the information we can have before we go up there. huh? I could swear these people were dragging their feet about this. They made an ENT appointment without telling me, our vent nurse looked taken aback every time I said Cincinnati, they punked us with a new GI doctor yesterday; all signs were pointing to STAY IN BIRMINGHAM. But apparently, we're going to Cincinnati with full support and lots of testing and information.
This is good. I'm grateful they are backing me up because it could make life a bit uncomfortable if they didn't want us to go. But I feel confused. Like I was being so dramatic about something so inconsequential. I was so torn up about this and they're all, "Yes, go to Cincinnati!"
Y'all, I'm apparently a nut. Tater's medical issues have made me certifiable. I just knew they didn't want us to go. Maybe they read the blog?! I guess the lesson here is to take everything I say and get worked up about with a grain of salt because chances are, it's all going to be bunk. The important thing is, we're going to Cincinnati! No bridges have been burned! Tater getting the care he needs is all that matters here and my sanity is just a side note. Until it's not. Please be nice to me when I finally do crack. And bring raw chocolate.
P.S. Here's the link to the Aerodigestive Team we'll be seeing in Cincinnati: http://www.cincinnatichildrens.org/svc/alpha/a/aerodigestive/default.htm We hope to go in April over Spring Break.
So yesterday. Tater and I left for Birmingham, it was raining, my stomach was in knots. I really wanted to call and cancel. But we went- Tater all snuggled in his seat watching Mater's Tall Tales, laughing out loud; me calling Mr. A every 5 minutes so I could complain about the rain and not wanting to go. We get to clinic, which is actually not that bad because patients are seen in the sleep clinic rooms which are sooped up hospital rooms with TVs. We see nutrition, respiratory, etc., individually. They all meet to talk about Tater then come back to talk to us together. I had told our care plan nurse about going to Cincinnati but no one was bringing it up in the summary talk. They were telling me about their plan for the next few months and I started stuttering about how we want to take Tater to Cincinnati because of the ENT team and uh, uh, uh....
Tater's pulmonologist said she thinks going to Cincinnati is a good idea and they only want us to have all the information we can have before we go up there. huh? I could swear these people were dragging their feet about this. They made an ENT appointment without telling me, our vent nurse looked taken aback every time I said Cincinnati, they punked us with a new GI doctor yesterday; all signs were pointing to STAY IN BIRMINGHAM. But apparently, we're going to Cincinnati with full support and lots of testing and information.
This is good. I'm grateful they are backing me up because it could make life a bit uncomfortable if they didn't want us to go. But I feel confused. Like I was being so dramatic about something so inconsequential. I was so torn up about this and they're all, "Yes, go to Cincinnati!"
Y'all, I'm apparently a nut. Tater's medical issues have made me certifiable. I just knew they didn't want us to go. Maybe they read the blog?! I guess the lesson here is to take everything I say and get worked up about with a grain of salt because chances are, it's all going to be bunk. The important thing is, we're going to Cincinnati! No bridges have been burned! Tater getting the care he needs is all that matters here and my sanity is just a side note. Until it's not. Please be nice to me when I finally do crack. And bring raw chocolate.
P.S. Here's the link to the Aerodigestive Team we'll be seeing in Cincinnati: http://www.cincinnatichildrens.org/svc/alpha/a/aerodigestive/default.htm We hope to go in April over Spring Break.
Wednesday, January 5, 2011
Politics of Medical Care
Tater has vent clinic today and I'm going to finally get to explain why I want to take him to Cincinnati. His vent team in Birmingham has been hesitant for us to take him to Cinici. I totally understand why and where they are coming from. Tater will still need to see them and they're not going to be the primary caregivers. They're used to giving orders, not taking them. I understand.
The thing is, I'm exhausted. This will be Tater's third visit to Birmingham since Thanksgiving and we have one more at the end of the month. It's an hour and a half drive down there and back. Parking is spotty and we usually have to wait long times to see the doctors. We have the drive down pat and Tater doesn't mind going but I have to find someone to pick Toser up from school, I'm always rushing to get home, Tater is soooo pleasant the day after a Birmingham visit (not). I dread visits down there.
The Children's hospital in Birmingham is associated with a teaching hospital. We see top notch doctors and I've never been disappointed with Tater's care. But with the way the specialty clinics (urology, vent/pulmonology, ENT, etc) are set up, I'm expected to be the information sharer. Yes, they all have access to his chart. Yes, all of the specialists know each other and talk with each other. But they never look at his chart and they don't talk, really, and I feel like I'm drowning in trying to get the doctors all on the same page.
After Thanksgiving, Tater had an appointment with ENT in Birmingham. I didn't make this appointment, his pulmonologist did. She wanted Tater to see this particular ENT so we went. I was assuming the pulmonologist had at least talked with the ENT to let him know what the deal is. No kidding, the ENT walked in and asked, "Why are you here?" Not in a 'hi, how are you' way, but in an 'I have no clue why you are here, seriously why are you here' way. When I explained why Tater's pulmonologist wanted Tater there, the ENT said, "Well, I'm not the guy who can help you." I appreciate the guy's honesty, but wow. It makes me want to cry just thinking about it. It was such a wasted trip and I felt so stupid, even though I was only doing what I was told to do.
I know there will be issues in Cincinnati. No place is perfect, there will be kinks and everyone knows I'm going to get fired up about SOMETHING. But in Cincinnati, we see 3 specialists (pulmonology, ENT and GI) who honestly, truly share information because they're all working together. No one will be looking to me for the results of a test because they will already know! Because they actually shared information! And look at Tater's issues as a whole and not just as broken up bits. Such a novel concept.
So, we're about to leave for Birmingham, and I'm hoping I don't cry when I'm pleading my case. I'm desperately trying not to burn bridges here, and I think his vent team is great (well, except for one doctor who has a Napoleon complex). We all KNOW I'm going to cry so just wish me luck on the not burning bridges thing. K? Thx!
The thing is, I'm exhausted. This will be Tater's third visit to Birmingham since Thanksgiving and we have one more at the end of the month. It's an hour and a half drive down there and back. Parking is spotty and we usually have to wait long times to see the doctors. We have the drive down pat and Tater doesn't mind going but I have to find someone to pick Toser up from school, I'm always rushing to get home, Tater is soooo pleasant the day after a Birmingham visit (not). I dread visits down there.
The Children's hospital in Birmingham is associated with a teaching hospital. We see top notch doctors and I've never been disappointed with Tater's care. But with the way the specialty clinics (urology, vent/pulmonology, ENT, etc) are set up, I'm expected to be the information sharer. Yes, they all have access to his chart. Yes, all of the specialists know each other and talk with each other. But they never look at his chart and they don't talk, really, and I feel like I'm drowning in trying to get the doctors all on the same page.
After Thanksgiving, Tater had an appointment with ENT in Birmingham. I didn't make this appointment, his pulmonologist did. She wanted Tater to see this particular ENT so we went. I was assuming the pulmonologist had at least talked with the ENT to let him know what the deal is. No kidding, the ENT walked in and asked, "Why are you here?" Not in a 'hi, how are you' way, but in an 'I have no clue why you are here, seriously why are you here' way. When I explained why Tater's pulmonologist wanted Tater there, the ENT said, "Well, I'm not the guy who can help you." I appreciate the guy's honesty, but wow. It makes me want to cry just thinking about it. It was such a wasted trip and I felt so stupid, even though I was only doing what I was told to do.
I know there will be issues in Cincinnati. No place is perfect, there will be kinks and everyone knows I'm going to get fired up about SOMETHING. But in Cincinnati, we see 3 specialists (pulmonology, ENT and GI) who honestly, truly share information because they're all working together. No one will be looking to me for the results of a test because they will already know! Because they actually shared information! And look at Tater's issues as a whole and not just as broken up bits. Such a novel concept.
So, we're about to leave for Birmingham, and I'm hoping I don't cry when I'm pleading my case. I'm desperately trying not to burn bridges here, and I think his vent team is great (well, except for one doctor who has a Napoleon complex). We all KNOW I'm going to cry so just wish me luck on the not burning bridges thing. K? Thx!
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