Hey. No change in the Tater. He's still heavily sedated because he's on the ventilator and fights it whenever they start to wean him off the sedatives. RSV gets worse on the 5th-7th day of active infection and best we can tell Tater is on day 3, so we'll have periods of him getting both better and worse before this is all over. They're being very conservative with estimates on him turning the corner and his pulmonologist told us today to be prepared for him to stay on the ventilator for another week and a half -meaning they may have to keep him sedated that long.
We want to thank you for all your prayers. I know everyone wants to help and we appreciate all your offers. We will definitely take you up on your help when we have a better idea of where we stand. We can't really use food right now because usually only 1 of us is home at any given time, if at all. And we'll ask you to not try to visit right now. Visiting hours are weird and we are trying to stay close by the Tater so going out to the waiting area is hard for us. I promise we're taking care of ourselves and getting rest and food.
We haven't had Internet access but the staff is working on that for us. We will keep everyone updated.
Thursday, January 31, 2008
Wednesday, January 30, 2008
Hard Day's Night
Not a good night. Tater has RSV, partially collapsed lungs and possibly pneumonia. He is the most pitiful I have ever seen him. Even in the NICU I don’t think he looked this bad. Poor Tater. And to add insult to injury, it took 2 hours for the nurses to start an IV (finally getting one in his foot after sticking him, I think, 7 times). He kicked the IV out at 3:00 am. Around the same time his sats started plummeting. He was on a BiPap machine that he’s been on at night since Saturday (this is the new machine we got from the sleep study). He actually tolerates it and doesn’t pull on it but it was not helping him breathe any last night. No help at all. They have moved him to the PICU and he is on a ventilator and has a central line and an arterial line. Please pray for our little booger. RSV is pretty serious in and of itself so when you add Tater’s issues you have a really big problem. He’s having a rough time and we’re looking at least a week here in the PICU. But, he still had a little spunk in him before they moved him. The nurse who finally got the IV was the nurse supervisor and he came in with the 5 other people who ran to get Tater stabilized. Tater saw him and did not let his eyes leave the nurse the entire time. When they sat Tater up to give him a breathing treatment, he started babbling at the nurse, following him with his eyes whenever the nurse moved. The nurse swore Tater was baby-cussing him. It was pretty funny despite everything that was happening.
The doctors will be giving us some long-term care options in the next few days. We could use your thoughts and prayers as we find out what those options are and make some decisions. Tater very obviously needs some help on the breathing front and we’re confident his doctors will lead us down the right path. I’ll update more as we find out what’s going on. We can’t have visitors and can’t use our cell phones so email is the best way to communicate for now.
Meanwhile, in Toser world: my sister, Wissa, took him to her house last night. On the way there he told her his tummy hurt and he needed something to eat to make it feel better. When she asked him what would make it feel better he said french fries. Of course she immediately got him some. Because although she has 2 kids of her own and does know how to show restraint she somehow loses that ability when it comes to Toser. And he knows how to work it. I love that kid. I’ve been trying to get one over on my older sister my whole life with little success and he does it with no effort at all.
The doctors will be giving us some long-term care options in the next few days. We could use your thoughts and prayers as we find out what those options are and make some decisions. Tater very obviously needs some help on the breathing front and we’re confident his doctors will lead us down the right path. I’ll update more as we find out what’s going on. We can’t have visitors and can’t use our cell phones so email is the best way to communicate for now.
Meanwhile, in Toser world: my sister, Wissa, took him to her house last night. On the way there he told her his tummy hurt and he needed something to eat to make it feel better. When she asked him what would make it feel better he said french fries. Of course she immediately got him some. Because although she has 2 kids of her own and does know how to show restraint she somehow loses that ability when it comes to Toser. And he knows how to work it. I love that kid. I’ve been trying to get one over on my older sister my whole life with little success and he does it with no effort at all.
Tuesday, January 29, 2008
Again
Yep, Tater's in the hospital again. He started getting a cough over the weekend and has quickly gotten worse. We really don't know what the problem is this time since he was just admitted but he's pretty bad off. He really needs those prayers.
I came home to grab a few things and let Toser take a nap before he heads to Wissa's and/or Coco and Papa's. Wissa's at the hospital with Tater. We may or may not have internet in the room but I'll try to keep you updated.
I came home to grab a few things and let Toser take a nap before he heads to Wissa's and/or Coco and Papa's. Wissa's at the hospital with Tater. We may or may not have internet in the room but I'll try to keep you updated.
Monday, January 28, 2008
Holland
Well, I do have some things to update. We went to Birmingham for a sleep study and came home with a new machine (contraptions that Tater is now hooked up to when he goes to sleep: 5). And I definitely have to tell you about Malfunction Sunday. But, I'm waiting for some phone calls about logistical things and will have to do all that later. In the mean time, read this about raising special needs children:
"Welcome to Holland"
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
(Written by Emily Pearl Kingsley in 1987, to help others understand what it is like to raise and take care of a special-needs child)
Saturday, January 19, 2008
Loooong Update
Hello again. It’s been a crazy week again-not in a hospital way but in a logistics way. Saturday night my sister, Manny, surprised us by coming into town. She drove 5½ hours just to see Tater. Isn’t she sweet?! To celebrate getting out of the hospital and Manny coming we went to breakfast Sunday morning and all was well until the small oxygen tank we had with us ran out and Tater started to look a little less than pink. Manny and I ran Tater out to the van where we had another tank. Sorry to anyone we knocked over in the process. The place was crowded and we were barreling out of there. And then Monday was my first foray with both boys and a larger oxygen tank. Whoowhee, was that fun! If my sisters and mom had not been at the restaurant we went to and helped us back out to the car, I would have cried the whole time. I know I’ll get the hang of it some day, but man! It’s hard to get everyone safely out of the van rolling the tank, holding Tater and *trying* to hold Toser’s hand, plus we have a diaper bag and somehow I have to open doors if no one else is around. We have a double stroller that may work but it’s not always feasible to take a double stroller into places. ARGH!! Tater has to have constant pressure and the small bag type oxygen you see people carrying is a pulse-type. The constant pressure small tanks just don’t last that long so the larger tanks are our only option right now when we go out. We might get something a little more manageable in the future but until then, if both boys are with me and YB isn’t around, we will be at home.
On Tuesday we went to Nashville for the day o’ docs. First we saw the new cardiologist and his team. Tater had an echocardiogram that was very extensive and after he was weighed, measured and had his blood pressure taken, we talked with the cardiologist fellow. He took Tater’s history, asked a gazillion questions and never once looked at the stack of records I handed him. Even when I pointed out the questions Taters pulmonologist wanted answered he barely glanced down. Oh well. He listened to Tater’s chest and explained to us exactly what pulmonary hypertension (PH) is and looks like (YB loved that part-he’s so analytical and needs those diagrams). He left to explain to the main doc what the deal is and then they both came back in to listen to Tater’s chest. Everyone was so nice. The doc had to double book us to get us in on such short notice so we knew he was running late but he still took the time to really talk with us about the approach he wants to take. He even said he wanted to spend more time with us but he knew we had another appointment we had to make. And after he left the room and we were gathering up our stuff he popped back in to say his secretary had called Tater’s GI doc to explain we may be running late for that appointment. Most doctors don’t care about any of that stuff and here he and his staff were going out their way to accommodate us. Needless to say we’re happy with this doc and will be returning to see him in April. His plan is to see what full-time oxygen does to resolve the PH and then go from there. He wants to be as conservative as he can be so he doesn’t compromise some other health issues Tater may have or could develop. We’re fine with that.
So on to the GI… we got there in plenty of time for the appointment and they got us back right away. Again we had been double booked and the staff and doctor were nothing but gracious about it. Tater had to get weighed and measured again and he was a super trooper. When the GI walked in she hesitated, looked at the chart and said she had to recheck the name because she didn’t recognize Tater since he has gotten so… (here she hesitated and YB and I filled it in for her: FAT). She is very pleased with his progress weight-wise and didn’t change anything about Tater’s feeding regimen other than the formula (he’s now on Pediasure rather than the formula that we had to measure and mix then measure again, add more stuff and mix again-it was very confusing the method we had to use) (and the State has a program that should pay for the Pediasure so that will help us tremendously-we’ve been spending $120/month on formula and additives!). The GI kept exclaiming how great Tater looks and how she can’t believe his progress. She said she has never seen a kid with Tater’s issues progress so quickly. We are so relieved to have one thing under control. We celebrated with a late lunch and Tater seemed as happy as we were. I know I say this all the time but he is such a great kid. He had been through so much in just a few hours with no nap and little nourishment and he was still so happy. He showed out, clapped, sat up, flirted and was just perfect the whole day. We hate he has to go through everything he does but we truly do believe he is who he is because of it all.
And the rest of the week has been a whirlwind. We’re trying to get used to having the pulse oximeter and monitoring Tater’s oxygen levels. I think we’re getting the hang of it but YB is worn out because he gets up with Tater in the middle of the night and the blame alarm is constantly going off. I’m just flat worn out from the stress of it all. I do try to keep a positive attitude because I don’t think I would survive any of this if I let myself dwell on all the negatives this new life of ours has. But the positive-ness does wear me down a bit so I’ve been indulging in a little depression this week. I’m fine, just letting a little funk out so I can deal with the next struggle that comes up. It’s nothing a lot of chocolate and an art class hasn’t been able to help with. Plus Toser and I had a breakfast date this morning, complete with visits to Target and Publix and that has done wonders for me.
Time to finally take the Christmas tree down. We usually leave our tree up until Epiphany but YB was skiing then Tater was in the hospital so we’re just now getting around to it. Our house has been so neglected the last few weeks. I think getting everything back to order around here will help with the funk I’ve been in. I’m even seriously pursuing getting a house cleaner so everything is really looking up. The thought of not having to clean toilets any more is enough to get me out of any funk!
On Tuesday we went to Nashville for the day o’ docs. First we saw the new cardiologist and his team. Tater had an echocardiogram that was very extensive and after he was weighed, measured and had his blood pressure taken, we talked with the cardiologist fellow. He took Tater’s history, asked a gazillion questions and never once looked at the stack of records I handed him. Even when I pointed out the questions Taters pulmonologist wanted answered he barely glanced down. Oh well. He listened to Tater’s chest and explained to us exactly what pulmonary hypertension (PH) is and looks like (YB loved that part-he’s so analytical and needs those diagrams). He left to explain to the main doc what the deal is and then they both came back in to listen to Tater’s chest. Everyone was so nice. The doc had to double book us to get us in on such short notice so we knew he was running late but he still took the time to really talk with us about the approach he wants to take. He even said he wanted to spend more time with us but he knew we had another appointment we had to make. And after he left the room and we were gathering up our stuff he popped back in to say his secretary had called Tater’s GI doc to explain we may be running late for that appointment. Most doctors don’t care about any of that stuff and here he and his staff were going out their way to accommodate us. Needless to say we’re happy with this doc and will be returning to see him in April. His plan is to see what full-time oxygen does to resolve the PH and then go from there. He wants to be as conservative as he can be so he doesn’t compromise some other health issues Tater may have or could develop. We’re fine with that.
So on to the GI… we got there in plenty of time for the appointment and they got us back right away. Again we had been double booked and the staff and doctor were nothing but gracious about it. Tater had to get weighed and measured again and he was a super trooper. When the GI walked in she hesitated, looked at the chart and said she had to recheck the name because she didn’t recognize Tater since he has gotten so… (here she hesitated and YB and I filled it in for her: FAT). She is very pleased with his progress weight-wise and didn’t change anything about Tater’s feeding regimen other than the formula (he’s now on Pediasure rather than the formula that we had to measure and mix then measure again, add more stuff and mix again-it was very confusing the method we had to use) (and the State has a program that should pay for the Pediasure so that will help us tremendously-we’ve been spending $120/month on formula and additives!). The GI kept exclaiming how great Tater looks and how she can’t believe his progress. She said she has never seen a kid with Tater’s issues progress so quickly. We are so relieved to have one thing under control. We celebrated with a late lunch and Tater seemed as happy as we were. I know I say this all the time but he is such a great kid. He had been through so much in just a few hours with no nap and little nourishment and he was still so happy. He showed out, clapped, sat up, flirted and was just perfect the whole day. We hate he has to go through everything he does but we truly do believe he is who he is because of it all.
And the rest of the week has been a whirlwind. We’re trying to get used to having the pulse oximeter and monitoring Tater’s oxygen levels. I think we’re getting the hang of it but YB is worn out because he gets up with Tater in the middle of the night and the blame alarm is constantly going off. I’m just flat worn out from the stress of it all. I do try to keep a positive attitude because I don’t think I would survive any of this if I let myself dwell on all the negatives this new life of ours has. But the positive-ness does wear me down a bit so I’ve been indulging in a little depression this week. I’m fine, just letting a little funk out so I can deal with the next struggle that comes up. It’s nothing a lot of chocolate and an art class hasn’t been able to help with. Plus Toser and I had a breakfast date this morning, complete with visits to Target and Publix and that has done wonders for me.
Time to finally take the Christmas tree down. We usually leave our tree up until Epiphany but YB was skiing then Tater was in the hospital so we’re just now getting around to it. Our house has been so neglected the last few weeks. I think getting everything back to order around here will help with the funk I’ve been in. I’m even seriously pursuing getting a house cleaner so everything is really looking up. The thought of not having to clean toilets any more is enough to get me out of any funk!
Saturday, January 12, 2008
M.S. High
as opposed to Rocky Mountain High, Colowado (I guess you have to know YB's family and/or John Denver songs and/or where we live to get that one) (Colowado is Toser speak)
ANYWAY- we're breaking out of here today (Saturday). The pulmonologist thinks we can handle monitoring Tater's oxygen levels at home. WE’VE ONLY BEEN DOING IT THE ENTIRE TIME WE'VE BEEN HERE. The nurses on the floor love us because the doctors write orders to let us handle feedings, monitors, etc., so we're not ringing the nurse call button every 20 minutes. At the very least the pulmonologist has been very clear about what to watch for and when to call him/freak out/panic. And he's dictated a very thorough report and questions for the cardiologist so all we have to do is show up and hand over a piece of paper to him. Usually we have to answer 20,000 questions with new doctors and smile/nod through their incredulous-ness at the lack of a diagnosis. It will be nice to sit back and just be.
Our friend, Auntie H, is coming by to help load up the car so we can run when they give us the okay and lab reports we’re waiting for. Apparently the lab was flooded this morning and all labs are back up. It’s okay. The hole in the couch where I’ve been sitting the last few days will miss me when I’m gone so I’m allowing it a few more snuggles before we leave.
ANYWAY- we're breaking out of here today (Saturday). The pulmonologist thinks we can handle monitoring Tater's oxygen levels at home. WE’VE ONLY BEEN DOING IT THE ENTIRE TIME WE'VE BEEN HERE. The nurses on the floor love us because the doctors write orders to let us handle feedings, monitors, etc., so we're not ringing the nurse call button every 20 minutes. At the very least the pulmonologist has been very clear about what to watch for and when to call him/freak out/panic. And he's dictated a very thorough report and questions for the cardiologist so all we have to do is show up and hand over a piece of paper to him. Usually we have to answer 20,000 questions with new doctors and smile/nod through their incredulous-ness at the lack of a diagnosis. It will be nice to sit back and just be.
Our friend, Auntie H, is coming by to help load up the car so we can run when they give us the okay and lab reports we’re waiting for. Apparently the lab was flooded this morning and all labs are back up. It’s okay. The hole in the couch where I’ve been sitting the last few days will miss me when I’m gone so I’m allowing it a few more snuggles before we leave.
Friday, January 11, 2008
Sunny and 30 degrees inside
We have Internet in this room, which is only 50 feet from the last room where there was none. Go figure.
Tater's still in the hospital because he's retaining fluid which is not good when you already have fluid build up around your heart from pulmonary hypertension. And his oxygen levels are all over the board. So we're here until both of those issues stabilize, probably Sunday at the earliest.
It is freezing in this room. It faces the south so we get sun all day but Tater is sweating from the extra work he has just to breathe and we're having to keep it cool. He's in a thin gown and I'm in a sweater and fleece jacket under a blanket. brrrr rabbits.
Tater is still his cute self. The nurses LOVE him. And he knows how to work them: not smiling until they act interested, but then only a smirk; if they touch him he sticks his lip out and they swoon and then he kinda smiles again; it gets them every time. Such a flirt.
My mom is coming this afternoon to stay with Tater and YB and I are going to get some Toser time. I haven't seen him since Tuesday morning. We're keeping him away from the hospital because every kid up here has RSV (or the black plague as their pediatrician calls it). I miss that kid so much my chest aches. He drives me up the wall but I love him to death and can't stand not seeing him. My plan is to eat him up and then take whatever's left over to get ice cream.
We'll update if anything changes.
Tater's still in the hospital because he's retaining fluid which is not good when you already have fluid build up around your heart from pulmonary hypertension. And his oxygen levels are all over the board. So we're here until both of those issues stabilize, probably Sunday at the earliest.
It is freezing in this room. It faces the south so we get sun all day but Tater is sweating from the extra work he has just to breathe and we're having to keep it cool. He's in a thin gown and I'm in a sweater and fleece jacket under a blanket. brrrr rabbits.
Tater is still his cute self. The nurses LOVE him. And he knows how to work them: not smiling until they act interested, but then only a smirk; if they touch him he sticks his lip out and they swoon and then he kinda smiles again; it gets them every time. Such a flirt.
My mom is coming this afternoon to stay with Tater and YB and I are going to get some Toser time. I haven't seen him since Tuesday morning. We're keeping him away from the hospital because every kid up here has RSV (or the black plague as their pediatrician calls it). I miss that kid so much my chest aches. He drives me up the wall but I love him to death and can't stand not seeing him. My plan is to eat him up and then take whatever's left over to get ice cream.
We'll update if anything changes.
Thursday, January 10, 2008
Mummy Head
Hello. Hospitals suck.
Tater is doing well. He had a 24 hour EEG to test for seizure activity last night. He's been having these shudders that look like cold chills. His local neurologist doesn't think they're anything but wanted to check everything out just in case. They attached a ton of wires to his head and then wrapped it in gauze. He looked like a cute little mummy. He kept pulling at them and getting in trouble but seemed to do well. We have no clue when we'll get the results from that but will keep you updated.
With the EEG he was moved to a regular room. His pulmonologist is now his primary physician at the hospital and he informed us we were looking at Monday before we could come home but if I pushed he might discharge Tater Saturday or Sunday. PPPPPPPUUUUUUUSSSSSSSHHHHHHHH!! Best we can tell he wants Tater there for more observation. I actually forgot to ask why he wanted to keep him so long. Sleep deprivation + a lot of info to take in + hospital air = befuddlement. Tater's sats keep plummeting when he's off the O2 and we know for sure he will come home on O2 full time.
We have a cardiologist's appointment in Nashville on Tuesday which is a major miracle. We have a GI appointment the same day so it works out great. The cardiologist we're seeing has no new appointments for a while but Doctor Mama again kicked some major butt and got us in. The cardiologist's office even called Tater's GI and got that appointment moved (again: miracle) so they could fit us in. Of course they're in different offices, one in Franklin and one at Vandy but we're used to the drive and are looking forward to some possible answers to the pulmonary hypertension (PH). PH is a very serious problem, especially with Tater's other issues, so they're looking at finding those answers ASAP. And we'll be following up with another sleep study at UAB in the next couple of weeks.
As you can tell, we're going to be a bit busy in the upcoming weeks. If we don't return calls or emails please forgive us and know we're very grateful for those and your prayers and thoughts.
And in other news: Ben got back Monday night from skiing in Colorado (note to self, Colorado also sucks-every time Ben goes there by himself we have a family medical emergency). I took these pictures to send to him while he was gone.
Tater is doing well. He had a 24 hour EEG to test for seizure activity last night. He's been having these shudders that look like cold chills. His local neurologist doesn't think they're anything but wanted to check everything out just in case. They attached a ton of wires to his head and then wrapped it in gauze. He looked like a cute little mummy. He kept pulling at them and getting in trouble but seemed to do well. We have no clue when we'll get the results from that but will keep you updated.
With the EEG he was moved to a regular room. His pulmonologist is now his primary physician at the hospital and he informed us we were looking at Monday before we could come home but if I pushed he might discharge Tater Saturday or Sunday. PPPPPPPUUUUUUUSSSSSSSHHHHHHHH!! Best we can tell he wants Tater there for more observation. I actually forgot to ask why he wanted to keep him so long. Sleep deprivation + a lot of info to take in + hospital air = befuddlement. Tater's sats keep plummeting when he's off the O2 and we know for sure he will come home on O2 full time.
We have a cardiologist's appointment in Nashville on Tuesday which is a major miracle. We have a GI appointment the same day so it works out great. The cardiologist we're seeing has no new appointments for a while but Doctor Mama again kicked some major butt and got us in. The cardiologist's office even called Tater's GI and got that appointment moved (again: miracle) so they could fit us in. Of course they're in different offices, one in Franklin and one at Vandy but we're used to the drive and are looking forward to some possible answers to the pulmonary hypertension (PH). PH is a very serious problem, especially with Tater's other issues, so they're looking at finding those answers ASAP. And we'll be following up with another sleep study at UAB in the next couple of weeks.
As you can tell, we're going to be a bit busy in the upcoming weeks. If we don't return calls or emails please forgive us and know we're very grateful for those and your prayers and thoughts.
And in other news: Ben got back Monday night from skiing in Colorado (note to self, Colorado also sucks-every time Ben goes there by himself we have a family medical emergency). I took these pictures to send to him while he was gone.
Oh, and my cat poops in the toilet. I can’t get my 2 year old to go but I lock our garage cat in the bathroom one night when it’s 9° outside and he poops in the toilet. I swear. At first I thought someone broke in to use the bathroom. But no, it was the cat. I can’t complain about my life being boring, now can I?
Wednesday, January 9, 2008
Yawwnnn
I am way too tired... Tater is doing fine and should come home tomorrow night. He's babbling and charming the nurses and back to his cute self.
In the mean time, you have to check this out. I should have been in bed an hour ago but a friend sent me this: Portraits from Olan Mills, Sears, etc. Use the bathroom before you look because you will laugh very hard.
In the mean time, you have to check this out. I should have been in bed an hour ago but a friend sent me this: Portraits from Olan Mills, Sears, etc. Use the bathroom before you look because you will laugh very hard.
Tuesday, January 8, 2008
Same Bat Channel
Tater's in the hospital, AGAIN (sorry to the family who is reading this-it's been a helluva day and we didn't get around to the phone during decent hours). He's had a cough since Saturday so after a bad night last night, I made an appointment with the pediatrician (not his regular one, who was out today, but another one in the same practice) for this afternoon. While we were headed out the door for a neurology appointment this morning he had another "blue" episode when I took him off his oxygen. This one was way worse than any of the others and I was really freaked-he was blue all over. But he pinked back up fairly quickly once I turned the O2 back on so I just took our portable canister with us to the neurologist and he seemed fine.
Tater still seemed fine once we got to the ped's office after lunch. He looked a little tired but I had woken him up from a nap and honestly didn't think anything of it. Even when the nurse seemed a little worried about him I just thought it was because she hadn't seen him before. But then she took out the pulse oximeter to measure his oxygen sats. Whoa nelly. If sats in the low 90's are kinda okay and sats in the mid 80's are bad, then sats in the 70's get you an ambulance ride to the hospital. The doctor very professionally freaked out as soon as he got in the room. He pulled out a breathing treatment, told me to go get Tater's oxygen out of the car and had the nurse call an ambulance. An ambulance to take Tater to the hospital that is less than a mile down the road. I was way more than freaked at this time. Mostly because I was kicking myself for not getting Tater to a doctor sooner. I knew he was getting bad but I kept telling myself to take it easy, it was just a cough. So we got on the ambulance-after the driver told me to go put our oxygen canister in my car so it wouldn't get mixed up with theirs (apparently the situation wasn't THAT urgent). And Tater was acting really normal, clicking his tongue and looking around and absolutely loving the ambulance ride. But at least we got a room right away (last time we had to wait 1.5 hours for one) and we got to hear over the ambulance radio about a guy who drank too much Listerine and passed out drunk then started a fight with the EMT who tried to help him out and had to have the cops called on him. Who knew Huntsville was so exciting?
Now, the down side to a ped freaking out and calling an ambulance is that you go straight to the PICU. The upside to the ped freaking out and being taken to the PICU is Doctor Mama. You may recall Doctor Mama from Tater's last PICU visit. She takes no prisoners and gets things DONE. Within 2 hours of Tater touching hospital ground he had seen a ped cardiologist who diagnosed him with pulmonary hypertension and she has mapped out a plan for helping him/us at home. The plan is: O2 ALL the time, no breaks, and a pulse oximeter at home so we can keep an eye on his sats without having to run to a doctor all the time (ahem-Halo-we're still willing to be the guinea pigs for a ped version of your product).
And as with all Tater visits to the hospital, we're getting a few things done while we're there. His neurologist mentioned at the visit today she wanted to run a couple of tests in the hospital but wanted to wait until RSV season was over. Now we'll be doing those over night tomorrow night and hopefully get to go home on Thursday. This neurologist is the most amazing and compassionate woman. She stopped by to see "Handsome"-her name for the Tater- on her way home tonight even though she had no obligation to. She's always hugging me and telling me how proud she is of all us and does it in a way that is in no way condescending. We are so blessed to have caring doctors who are really concerned about Tater. Even his surgeon and surgeon's nurse heard he was in the hospital and stopped by to check on him. We are definitely in the right place and could not ask for better care for the Tater. Sure, we see more knowledgeable people at Vandy and UAB, but no one cares for him like his Huntsville docs.
One more thing at the risk of going overboard with this post: today when Tater was turning blue, Toser ran upstairs and came back with a sing-it box (music box). He said, “I get sing-it box to make Tater feel better.” When Tater calmed down with Toser playing the box next to his ear, he said, “See Mommy, I make Tater all better.” Isn’t Tater lucky to have such a great big brudder? Aren’t YB and I so lucky to have such a great son?
I’ll try to keep you all updated. We don’t have Internet service at the hospital and I’ll probably be there all day tomorrow. Rest assured that Tater is fine and is in the best hands. So is Toser-he’s with Wissa getting spoiled rotten and being sweet about it.
Tater still seemed fine once we got to the ped's office after lunch. He looked a little tired but I had woken him up from a nap and honestly didn't think anything of it. Even when the nurse seemed a little worried about him I just thought it was because she hadn't seen him before. But then she took out the pulse oximeter to measure his oxygen sats. Whoa nelly. If sats in the low 90's are kinda okay and sats in the mid 80's are bad, then sats in the 70's get you an ambulance ride to the hospital. The doctor very professionally freaked out as soon as he got in the room. He pulled out a breathing treatment, told me to go get Tater's oxygen out of the car and had the nurse call an ambulance. An ambulance to take Tater to the hospital that is less than a mile down the road. I was way more than freaked at this time. Mostly because I was kicking myself for not getting Tater to a doctor sooner. I knew he was getting bad but I kept telling myself to take it easy, it was just a cough. So we got on the ambulance-after the driver told me to go put our oxygen canister in my car so it wouldn't get mixed up with theirs (apparently the situation wasn't THAT urgent). And Tater was acting really normal, clicking his tongue and looking around and absolutely loving the ambulance ride. But at least we got a room right away (last time we had to wait 1.5 hours for one) and we got to hear over the ambulance radio about a guy who drank too much Listerine and passed out drunk then started a fight with the EMT who tried to help him out and had to have the cops called on him. Who knew Huntsville was so exciting?
Now, the down side to a ped freaking out and calling an ambulance is that you go straight to the PICU. The upside to the ped freaking out and being taken to the PICU is Doctor Mama. You may recall Doctor Mama from Tater's last PICU visit. She takes no prisoners and gets things DONE. Within 2 hours of Tater touching hospital ground he had seen a ped cardiologist who diagnosed him with pulmonary hypertension and she has mapped out a plan for helping him/us at home. The plan is: O2 ALL the time, no breaks, and a pulse oximeter at home so we can keep an eye on his sats without having to run to a doctor all the time (ahem-Halo-we're still willing to be the guinea pigs for a ped version of your product).
And as with all Tater visits to the hospital, we're getting a few things done while we're there. His neurologist mentioned at the visit today she wanted to run a couple of tests in the hospital but wanted to wait until RSV season was over. Now we'll be doing those over night tomorrow night and hopefully get to go home on Thursday. This neurologist is the most amazing and compassionate woman. She stopped by to see "Handsome"-her name for the Tater- on her way home tonight even though she had no obligation to. She's always hugging me and telling me how proud she is of all us and does it in a way that is in no way condescending. We are so blessed to have caring doctors who are really concerned about Tater. Even his surgeon and surgeon's nurse heard he was in the hospital and stopped by to check on him. We are definitely in the right place and could not ask for better care for the Tater. Sure, we see more knowledgeable people at Vandy and UAB, but no one cares for him like his Huntsville docs.
One more thing at the risk of going overboard with this post: today when Tater was turning blue, Toser ran upstairs and came back with a sing-it box (music box). He said, “I get sing-it box to make Tater feel better.” When Tater calmed down with Toser playing the box next to his ear, he said, “See Mommy, I make Tater all better.” Isn’t Tater lucky to have such a great big brudder? Aren’t YB and I so lucky to have such a great son?
I’ll try to keep you all updated. We don’t have Internet service at the hospital and I’ll probably be there all day tomorrow. Rest assured that Tater is fine and is in the best hands. So is Toser-he’s with Wissa getting spoiled rotten and being sweet about it.
Thursday, January 3, 2008
Housekeepin'
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Old Lane Sign
Happy New Year! 2007 was a strange year to say the least and ended very hectically. We have many hopes for 2008 and are happy that it has started out to be a good one so far.
The Thursday before Christmas, Tater started running a fever and turned blue on me a couple of times. When he “turns blue,” it means he’s having an especially hard time breathing and his oxygen saturation levels are pretty low. His lips get very blue and he gets a blue tinge around his mouth. Although it doesn’t happen too often and I know to be on guard when it does, it’s just something that is to be expected with breathing problems like his. This time the blue episodes were different/worse and I got a little freaked* and took him to see his pulmonologist. When they checked his O2 saturation level it was in the mid 80’s, which is not good, so off to the hospital we went. He was in the hospital Thursday and Friday nights for a respiratory infection and so they could monitor his O2 levels. He really wasn’t that sick and wasn’t acting like it at all after we got to the hospital-he only had low O2 levels. They did give him steroids to make it easier for him to breathe and the kid became crazy. My sister, Wissa, stayed with him while I came home for a bit and she said he never stopped moving the 2 hours I was away. And then he moved and babbled for 3 hours straight when I came back. We would tell him to wave bye-bye and he would clap. We would tell him to clap and he would wave bye-bye. He babbled mamamamama constantly. It was pretty funny. Of course that was Friday night when I got to come home to sleep (I stayed Thursday night) and Ben had to stay up with him. I don’t think he finds it as funny as I do since he had to bring Tater down from that high.
Anyway, Tater came on Saturday morning, YB’s sister (Leeda) and her family (husband Uncle Cracker and sons Doodle-2.5 and Nick-4 mos.) arrived an hour after we got home and things didn’t slow down until last Thursday when YB’s other sister (Kajja) left. It was crazy and we loved it. Toser and Doodle did very well playing together and Nick is just as cute as Tater. My sister, Manny; her husband, Hunter; my brother, TyTy; and his wife JenJen were all in town that weekend as well (Wissa and her family live here). We had 25 people at our house on Christmas Eve and went to Coco and Papa’s house Christmas Day. The boys both got too many toys and loved every bit of the craziness as well. Tater’s doing tons better and has met a few more of his therapy goals-but that’s a post for another time.
I hope everyone is doing well and survived the holidays!
*I tend to deal with these type situations calmly while they’re happening and completely fall apart later when all is over. This drives YB crazy because it seems I’m not reacting (although I am, I just don’t show any emotion). On the other hand, he reacts immediately and is frantic. This drives ME crazy because it seems he’s just freaking out and not taking care of the situation. In all actuality, it doesn’t matter how it’s dealt with as long as it’s dealt with. The point being-when I get freaked about something, it’s weird and I don’t deal well. It probably didn’t help that I was sick too. And so was Toser and he was hungry and wanted M&Ms. So I gave him a snack bag of potato chips and told him if he ate the whole bag he could have the M&Ms. What? Potatoes are a vegetable and my standards were a little low then. Not that they’re always high when it comes to food (that’s YB’s area) but they’re usually a tad higher than a chip and M&M lunch. And Toser knows not to look a gift-horse/sick-stressed-mom in the mouth and was quite happy with the whole deal. Plus, he got to stay with Coco and Papa while Tater was in the hospital and that’s like a constant chip and M&M lunch.
The Thursday before Christmas, Tater started running a fever and turned blue on me a couple of times. When he “turns blue,” it means he’s having an especially hard time breathing and his oxygen saturation levels are pretty low. His lips get very blue and he gets a blue tinge around his mouth. Although it doesn’t happen too often and I know to be on guard when it does, it’s just something that is to be expected with breathing problems like his. This time the blue episodes were different/worse and I got a little freaked* and took him to see his pulmonologist. When they checked his O2 saturation level it was in the mid 80’s, which is not good, so off to the hospital we went. He was in the hospital Thursday and Friday nights for a respiratory infection and so they could monitor his O2 levels. He really wasn’t that sick and wasn’t acting like it at all after we got to the hospital-he only had low O2 levels. They did give him steroids to make it easier for him to breathe and the kid became crazy. My sister, Wissa, stayed with him while I came home for a bit and she said he never stopped moving the 2 hours I was away. And then he moved and babbled for 3 hours straight when I came back. We would tell him to wave bye-bye and he would clap. We would tell him to clap and he would wave bye-bye. He babbled mamamamama constantly. It was pretty funny. Of course that was Friday night when I got to come home to sleep (I stayed Thursday night) and Ben had to stay up with him. I don’t think he finds it as funny as I do since he had to bring Tater down from that high.
Anyway, Tater came on Saturday morning, YB’s sister (Leeda) and her family (husband Uncle Cracker and sons Doodle-2.5 and Nick-4 mos.) arrived an hour after we got home and things didn’t slow down until last Thursday when YB’s other sister (Kajja) left. It was crazy and we loved it. Toser and Doodle did very well playing together and Nick is just as cute as Tater. My sister, Manny; her husband, Hunter; my brother, TyTy; and his wife JenJen were all in town that weekend as well (Wissa and her family live here). We had 25 people at our house on Christmas Eve and went to Coco and Papa’s house Christmas Day. The boys both got too many toys and loved every bit of the craziness as well. Tater’s doing tons better and has met a few more of his therapy goals-but that’s a post for another time.
I hope everyone is doing well and survived the holidays!
*I tend to deal with these type situations calmly while they’re happening and completely fall apart later when all is over. This drives YB crazy because it seems I’m not reacting (although I am, I just don’t show any emotion). On the other hand, he reacts immediately and is frantic. This drives ME crazy because it seems he’s just freaking out and not taking care of the situation. In all actuality, it doesn’t matter how it’s dealt with as long as it’s dealt with. The point being-when I get freaked about something, it’s weird and I don’t deal well. It probably didn’t help that I was sick too. And so was Toser and he was hungry and wanted M&Ms. So I gave him a snack bag of potato chips and told him if he ate the whole bag he could have the M&Ms. What? Potatoes are a vegetable and my standards were a little low then. Not that they’re always high when it comes to food (that’s YB’s area) but they’re usually a tad higher than a chip and M&M lunch. And Toser knows not to look a gift-horse/sick-stressed-mom in the mouth and was quite happy with the whole deal. Plus, he got to stay with Coco and Papa while Tater was in the hospital and that’s like a constant chip and M&M lunch.
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