Hi, everyone, We're getting all settled into our Peds ICU room in St. Vincent's Children's Hospital in Indy. Maddy wasn't keeping her oxygen saturation up high enough, so we're keeping a closer eye on her here.
Her breathing is rather rapid and she's "retracting" with every breath, meaning she's pulling hard. But we're down from 2 liters of O2 to 1.5, and she's SATing perfectly with that. Her ABGs came back great. She's starting to look much more pink. She's very grouchy, though, because she's getting no food until tomorrow. They want to keep her stomach relatively empty tonight just in case they need to put her on the respirator.
I have no idea how long we'll be here, but I have a brand new Grisham book that Glen got me for my birthday, and can't forget the accounting textbook. So I'm good... :)
I'll update more tomorrow....er...later today!
Pam
Saturday, January 31, 2009
Friday, January 30, 2009
Maddy's a Drama Queen
I know the initial drama of Maddy's birth and subsequent NICU stay is a thing of the past, but thank you for continuing to pray for Maddy during her various struggles. We appreciate it more than you know.
Maddy has quite a time these last couple of weeks. First seizures and a severe bladder infection, and now RSV. She tested positive for it yesterday.
Many of you know the struggle that I've had getting the Synagis shot to prevent RSV. Synagis is not a vaccine. It contains antibodies. It wraps itself around the virus to do away with it. Maddy has several risk factors that qualify her for the shot, and you only need one: She has chronic lung disease, is on oxygen and breathing treatments, has DiGeorge syndrome which causes a lower immune system, has a sister in school, etc.... But it took us forever to get it approved, and then even longer for our doctor's office to figure out how to get the shot. I've been working on this since October. An hour after we got the test results yesterday, Precision Rx, who is providing the shots, called to confirm shipping. Grrr.... She can still have the shot and it will help her, but I'm a little upset that I had the major runaround that made this whole process take so long. Lesson learned: Just because someone says they're working on something does not mean they are working on it. CALL EVERYDAY until it's resolved. Thankfully, last week I finally got an awesome treatment nurse that got the ball rolling and will have it by Monday.
Anyway, the good news is that Maddy's lungs sound awesome and her color is good. She is labored in her breathing a bit more and her oxygen saturation is in the 80s, so we're keeping a good eye on her. I've put the monitor back on her (wishing we had the oximeter, though!), and last night I slept in the living room with her, with the lights on so I could check on her through the night.
A day in the life....
Pam
Maddy has quite a time these last couple of weeks. First seizures and a severe bladder infection, and now RSV. She tested positive for it yesterday.
Many of you know the struggle that I've had getting the Synagis shot to prevent RSV. Synagis is not a vaccine. It contains antibodies. It wraps itself around the virus to do away with it. Maddy has several risk factors that qualify her for the shot, and you only need one: She has chronic lung disease, is on oxygen and breathing treatments, has DiGeorge syndrome which causes a lower immune system, has a sister in school, etc.... But it took us forever to get it approved, and then even longer for our doctor's office to figure out how to get the shot. I've been working on this since October. An hour after we got the test results yesterday, Precision Rx, who is providing the shots, called to confirm shipping. Grrr.... She can still have the shot and it will help her, but I'm a little upset that I had the major runaround that made this whole process take so long. Lesson learned: Just because someone says they're working on something does not mean they are working on it. CALL EVERYDAY until it's resolved. Thankfully, last week I finally got an awesome treatment nurse that got the ball rolling and will have it by Monday.
Anyway, the good news is that Maddy's lungs sound awesome and her color is good. She is labored in her breathing a bit more and her oxygen saturation is in the 80s, so we're keeping a good eye on her. I've put the monitor back on her (wishing we had the oximeter, though!), and last night I slept in the living room with her, with the lights on so I could check on her through the night.
A day in the life....
Pam
Tuesday, January 27, 2009
Where we are with neurology (Update on Maddy)
Hi, everyone, So it's been quite a while since I've sent out an official Maddy update. This one is coming about a week late, but for those of you who have known what is (was) going on with Maddy, we surely have appreciated your prayers.
To get everyone on the same page, here's a quick (yeah, right!) recap.
Sometime the week before last I noticed Maddy's mouth twitching and her one arm jerking. Thought it was a fluke. On Sunday morning (1/18) we were sitting with Jed and Alyssa in church, and Maddy was being loved on by Alyssa when Alyssa noticed a repeat performance, plus some eye rolling. Still didn't think too much about it, because it only lasted about 15 secs or so. After another episode on Monday, I called the neurosurgeon with the suspicion that she was having seizures, and they agreed after I described what was happening. Took her to the neurosurgeon on Tuesday to have her shunt checked (head ultrasound and shunt x-ray series), and everything checked out! He gave me a referral to see a neurologist, and they didn't schedule me until February 17 (four weeks out!). At that point, she still had had only one a day. By that night, though, she had three more, and they were lasting longer, taking longer for me to feel like she was really "there." (Mind you, she didn't stop breathing or anything, so they weren't nearly as severe as they could have been, but very scary none the less.)
So at 11:30 pm, I took her to the ER. I had no instruction whatsoever for what to be worried about, or what, if anything, to do when it happened. I was emotionally and physically exhausted, and totally had no idea what to do. (But don't worry, I didn't flip out at the ER! I'm don't do that easily....) The ER doctor called the neurologist on call (where we were scheduled to go in four weeks) and was told that it would be ok to prescribe Keppra (SO much safer than phenobarbital, I was told today), and to call first thing in the morning and tell them to move up my appointment. We didn't get the prescription back until Wednesday night, and she had 8 seizures on Wednesday, last more like two minutes. After that dose, though, the seizures were less frequent and much less "severe" (though they weren't ever really severe compared to the possibilities). Yesterday, she had no seizures that we saw.
Yesterday I took Maddy to our family doctor because of a 103 fever, and he ran CBC, chest x-ray, and UA, and what do you know but that that little bugger has a really bad bladder infection to boot. She has vescicoureteral reflux (reflux from her bladder to her kidneys) and is cathed three times a day, so it's really amazing that she hadn't gotten one before now. Anyway, I'm very grateful that the strong antibiotics have done the trick so that she didn't have to be hospitalized for IV antibiotics.
Today, I took her to the neurologist today, and liked her a lot (that always helps!). She upped her Keppra dose to the correct dosage, so the seizures shouldn't happen at all. She gave me instruction for when to take her to the ER. She also ordered calcium levels to be checked again (You may remember that she had low calcium levels from birth due to her DiGeorge syndrome, but had come off the calcium after her levels came up), to rule out hypocalcemic seizures. And then we'll have an EEG on February 6th.
The poor little girl gave the phlebotomists quite the workout trying to get her blood to flow for the ionized calcium draw. They needed 4ml and they couldn't get it to flow for that long. We were at two labs in the end.
So that is the quick version (heehee) of our lives the last week or so. On top of all this, I was trying desperately to get last week's homework done (due Wednesday night at midnight). But the facilitator told me not to worry about it and to deal with Maddy. I worked all day Wednesday in between seizures and calming her down, and handed my homework in only an hour late! I heard that Uncle RB was rather proud of me! :)
After being gone all day to the doctors and labs, I need to get this week's work finished! Please continue to pray that Maddy will have a peaceful week and that we'll find the answers we need. I decided when Maddy was about, oh, one day old, that I couldn't flip out about every single thing that she handed us. Some weeks I think I would be flipping out every day. God has been good to give us peace and calm through this new rollercoaster. His mercies and strength are perfect and new every morning (nothing like cobbling two verses together!).
Pam
To get everyone on the same page, here's a quick (yeah, right!) recap.
Sometime the week before last I noticed Maddy's mouth twitching and her one arm jerking. Thought it was a fluke. On Sunday morning (1/18) we were sitting with Jed and Alyssa in church, and Maddy was being loved on by Alyssa when Alyssa noticed a repeat performance, plus some eye rolling. Still didn't think too much about it, because it only lasted about 15 secs or so. After another episode on Monday, I called the neurosurgeon with the suspicion that she was having seizures, and they agreed after I described what was happening. Took her to the neurosurgeon on Tuesday to have her shunt checked (head ultrasound and shunt x-ray series), and everything checked out! He gave me a referral to see a neurologist, and they didn't schedule me until February 17 (four weeks out!). At that point, she still had had only one a day. By that night, though, she had three more, and they were lasting longer, taking longer for me to feel like she was really "there." (Mind you, she didn't stop breathing or anything, so they weren't nearly as severe as they could have been, but very scary none the less.)
So at 11:30 pm, I took her to the ER. I had no instruction whatsoever for what to be worried about, or what, if anything, to do when it happened. I was emotionally and physically exhausted, and totally had no idea what to do. (But don't worry, I didn't flip out at the ER! I'm don't do that easily....) The ER doctor called the neurologist on call (where we were scheduled to go in four weeks) and was told that it would be ok to prescribe Keppra (SO much safer than phenobarbital, I was told today), and to call first thing in the morning and tell them to move up my appointment. We didn't get the prescription back until Wednesday night, and she had 8 seizures on Wednesday, last more like two minutes. After that dose, though, the seizures were less frequent and much less "severe" (though they weren't ever really severe compared to the possibilities). Yesterday, she had no seizures that we saw.
Yesterday I took Maddy to our family doctor because of a 103 fever, and he ran CBC, chest x-ray, and UA, and what do you know but that that little bugger has a really bad bladder infection to boot. She has vescicoureteral reflux (reflux from her bladder to her kidneys) and is cathed three times a day, so it's really amazing that she hadn't gotten one before now. Anyway, I'm very grateful that the strong antibiotics have done the trick so that she didn't have to be hospitalized for IV antibiotics.
Today, I took her to the neurologist today, and liked her a lot (that always helps!). She upped her Keppra dose to the correct dosage, so the seizures shouldn't happen at all. She gave me instruction for when to take her to the ER. She also ordered calcium levels to be checked again (You may remember that she had low calcium levels from birth due to her DiGeorge syndrome, but had come off the calcium after her levels came up), to rule out hypocalcemic seizures. And then we'll have an EEG on February 6th.
The poor little girl gave the phlebotomists quite the workout trying to get her blood to flow for the ionized calcium draw. They needed 4ml and they couldn't get it to flow for that long. We were at two labs in the end.
So that is the quick version (heehee) of our lives the last week or so. On top of all this, I was trying desperately to get last week's homework done (due Wednesday night at midnight). But the facilitator told me not to worry about it and to deal with Maddy. I worked all day Wednesday in between seizures and calming her down, and handed my homework in only an hour late! I heard that Uncle RB was rather proud of me! :)
After being gone all day to the doctors and labs, I need to get this week's work finished! Please continue to pray that Maddy will have a peaceful week and that we'll find the answers we need. I decided when Maddy was about, oh, one day old, that I couldn't flip out about every single thing that she handed us. Some weeks I think I would be flipping out every day. God has been good to give us peace and calm through this new rollercoaster. His mercies and strength are perfect and new every morning (nothing like cobbling two verses together!).
Pam
Wednesday, January 14, 2009
Picture post marathon #4
I didn't discover until too late that we didn't have a gingerbread man cookie cutter, so we made bears instead. We had planned to ice them, but we ran out of time (this was the week of our Christmas program). Dough was pretty sticky, and it took us a while to get us smooth, but it was fun!
Enjoy....
Enjoy....
Tuesday, January 13, 2009
Picture post marathon, #3
In my endevours to get caught up in posting pictures, I found Carli's school Thanksgiving pictures. The Kindergarteners were pilgrims and the first graders were Indians and they had a feast together. There were the traditional Thanksgiving foods, such as turkey, potatoes, squash, etc., and the principal Ms. Wiles (what an incredible woman. She's a blessing for sure) made something like 12 homemade pumpkin pies. My mom and I went to help out in the classroom for some of the activities.
Not sure why these pics are blurry, but here goes....
Carli and LaJaunte (He's such a cutie. I enjoy reading to him when I have the chance to go in). I put Carli in a dark blue dress so that she'd look a little more pilgrim.
The girls
The whole gang
Ready to eat.
Not sure why these pics are blurry, but here goes....
Carli and LaJaunte (He's such a cutie. I enjoy reading to him when I have the chance to go in). I put Carli in a dark blue dress so that she'd look a little more pilgrim.
The girls
The whole gang
Ready to eat.
Sunday, January 11, 2009
Happy Birthday, Dear Olivia Grace!
Our spunky and percocious little girl just turned 3 years old today! It hardly seems possible. I can't believe it, but I can actually say I got her potty trained before she was three! I never would have believed it a month ago.
Enjoy the trip down (my) memory lane! Happy Birthday, Livy. I love you so much and I'm tinkled pink to have you as my little girl.
A break from the pictures for a few Carli-isms
We were just praying for the Bigger family (I don't know them, but we got an email requesting prayer for a young man who just lost his wife and two little children when his van slid off the road and into a pond. I can't imagine his pain right now. Please pray for them as well). Carli prayed for him (actually for the ones already in heaven, in her simple little way), and then wanted to pray for Granddad, as she does often. (I'm not sure if this is something we really need to talk to her about, or if we can wait til later on.) She prayed that he would be kind and good and comfortable.
I kept Carli home from church tonight because she had a low-grade fever and sore throat. She just said, "I'm going to go potty and then maybe my throat will feel better." If only that was the cure!
To Madeline: "Hi, Cutie Pie! Are you a cutie pie or just pie?"
I kept Carli home from church tonight because she had a low-grade fever and sore throat. She just said, "I'm going to go potty and then maybe my throat will feel better." If only that was the cure!
To Madeline: "Hi, Cutie Pie! Are you a cutie pie or just pie?"
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