We are HOME!
Only cried once, when I spent an hour trying to figure out how to get the formula to flow from the bag into the tube without massive air bubbles. Turns out you have to take the cap off the end of the tubing. Yes, my face was red when the nice male nurse let me in on this secret!
Thank you, Dr. Lisa, for working out a feeding and breathing treatment schedule to give us 9, I repeat, 9 hours at night! That will allow us to get Carli off to school before having to get Maddy up. Hallelujah! And I mean that.
I will update on the g-tube later.
Thursday, February 5, 2009
Coming home!
We will be coming home either tonight or tomorrow! The plan is to bring her home on an NG tube, let her lungs heal completely from the aspirating and the RSV, and then bring her back in a couple weeks for G-tube surgery.
Also good news is that her breathing treatments have been bumped to every six hours (when she was first admitted, they were every two, and until this morning, every four). And it sounds like they've bumped up her feedings to 4 oz every three hours, so that we can go for a longer stretch at night, hopefully six hours, so that we can at least have a six hour stretch to sleep. I'm grateful for that!
Also good news is that her breathing treatments have been bumped to every six hours (when she was first admitted, they were every two, and until this morning, every four). And it sounds like they've bumped up her feedings to 4 oz every three hours, so that we can go for a longer stretch at night, hopefully six hours, so that we can at least have a six hour stretch to sleep. I'm grateful for that!
Wednesday, February 4, 2009
Results from Swallow Study ***Updated****
UPDATE:
Maddy had an EEG yesterday, and at that point she had no seizure activity. Thanks for praying about that. We'll continue with the Keppra, probably until she's 2 and then she'll have more testing and she how she does without Keppra. We're so thankful that the seizures have stopped!
One other side note about the whole swallow study thing, if you're interested. The speech therapist thinks it is possible that Maddy has a submucous cleft palate. This can cause swallowing issues, making her an inefficient little eater! Anyway, it may just be another piece of the DiGeorge Syndrome puzzle. Interesting, but not a lot that's done with that. Pam
Hi, Loyal Maddy Fans!
We got back a little bit ago from the swallow study, a very neat test in which Madeline got to eat different consistencies of formula, etc, mixed with barium, with different bottle nipples, all the while being x-rayed to see if she was aspirating. (By the way, I need a test like that...anything with food!).
I cannot tell you how grateful I am that Dr. Moser ordered this study. Maddy is aspirating just about everything she takes in, no matter the consistency or flow. Particularly concerning is that she aspirates quite a bit before she "tells" us by coughing. Previous to the RSV, she was coughing about half way through her bottle, every time, meaning that she probably had aspirated a few times before the cough even.
Aspirating (just in case you're not up on all your swallow issues) means that she is the food is going into her lungs rather than her stomach. You know how you feel when you laugh with a mouthful of water and it goes down the wrong pipe? That's probably how she's felt with almost every feeding. This could be why she's needed to be on oxygen for so long.
So I'm waiting on the doctor to talk over options. I've had several people tell me not to fight a g tube (feeding tube directly to the stomach), and when I look at the options, I really feel comfortable with the g tube. For now, she has an ng tube (nasogastric--meaning going through the nose to the stomach), which she's had since Sunday. Since she'll probably need to be on a tube for a while, it's a lot simpler not to have a temporary one down her nose that we have to change and have taped to her, etc.
Please pray that the right decisions will be made for her care. I've been so impressed with every nurse and all doctors but one since we've been here. They love to socialize with Miss Maddy and she really enjoys the attention! We'll probably be in here a while longer than anticipated, so you might want to pray for Dearest Hubby who is taking care of the girls, including getting Carli ready for school every day (that would be interesting to see). I think they may be coming down tonight, which makes me happy, especially since Carli told me the other night that she missed being a family.
Here's a HUGE shoutout to Lori and Kiersten. I met them when their (adorable) little boys (both of whom had a crush on Carli, I believe) were in preschool with Carli. They came yesterday bearing gifts and spent three hours here, just for girl time. What awesome friends! They brought me a tulip, four magazines, fruit, vitamin water, a book for Maddy and CAKE! The cake was from a Kokomo baker, and it was heavenly to say the least. There were three flavors: Lemon, Tahitian Vanilla and Chocolate. We split each piece three ways and polished it all off. YUM-O! I laughed myself silly a few times, and all around felt so much better. I even got past my mental block then and finished a lot of my schoolwork.
I have some more problems to do before tonight's deadline, which isn't too bad considering that I've been either at the doctor's office, Maddy's therapy or here in the hospital ever since this week's class started (last Thursday). I'm so thankful that it's more calm and laid back here on the weekends or I never would have gotten as far as I have. So far the weekdays have been so hectic I've hardly had time to breath (or get out of my sleep clothes), let alone work on homework. It's so hard to concentrate even when there's nothing going on at the time. So to make a long story short, I HAVE to get off of here and attack those problems or they won't be done on time. But I did think it was important for me to update every one, so don't judge me too much for typing such a long email when I should be studying! :)
Thanks for praying and keep it up!
Pam
Maddy had an EEG yesterday, and at that point she had no seizure activity. Thanks for praying about that. We'll continue with the Keppra, probably until she's 2 and then she'll have more testing and she how she does without Keppra. We're so thankful that the seizures have stopped!
One other side note about the whole swallow study thing, if you're interested. The speech therapist thinks it is possible that Maddy has a submucous cleft palate. This can cause swallowing issues, making her an inefficient little eater! Anyway, it may just be another piece of the DiGeorge Syndrome puzzle. Interesting, but not a lot that's done with that. Pam
Hi, Loyal Maddy Fans!
We got back a little bit ago from the swallow study, a very neat test in which Madeline got to eat different consistencies of formula, etc, mixed with barium, with different bottle nipples, all the while being x-rayed to see if she was aspirating. (By the way, I need a test like that...anything with food!).
I cannot tell you how grateful I am that Dr. Moser ordered this study. Maddy is aspirating just about everything she takes in, no matter the consistency or flow. Particularly concerning is that she aspirates quite a bit before she "tells" us by coughing. Previous to the RSV, she was coughing about half way through her bottle, every time, meaning that she probably had aspirated a few times before the cough even.
Aspirating (just in case you're not up on all your swallow issues) means that she is the food is going into her lungs rather than her stomach. You know how you feel when you laugh with a mouthful of water and it goes down the wrong pipe? That's probably how she's felt with almost every feeding. This could be why she's needed to be on oxygen for so long.
So I'm waiting on the doctor to talk over options. I've had several people tell me not to fight a g tube (feeding tube directly to the stomach), and when I look at the options, I really feel comfortable with the g tube. For now, she has an ng tube (nasogastric--meaning going through the nose to the stomach), which she's had since Sunday. Since she'll probably need to be on a tube for a while, it's a lot simpler not to have a temporary one down her nose that we have to change and have taped to her, etc.
Please pray that the right decisions will be made for her care. I've been so impressed with every nurse and all doctors but one since we've been here. They love to socialize with Miss Maddy and she really enjoys the attention! We'll probably be in here a while longer than anticipated, so you might want to pray for Dearest Hubby who is taking care of the girls, including getting Carli ready for school every day (that would be interesting to see). I think they may be coming down tonight, which makes me happy, especially since Carli told me the other night that she missed being a family.
Here's a HUGE shoutout to Lori and Kiersten. I met them when their (adorable) little boys (both of whom had a crush on Carli, I believe) were in preschool with Carli. They came yesterday bearing gifts and spent three hours here, just for girl time. What awesome friends! They brought me a tulip, four magazines, fruit, vitamin water, a book for Maddy and CAKE! The cake was from a Kokomo baker, and it was heavenly to say the least. There were three flavors: Lemon, Tahitian Vanilla and Chocolate. We split each piece three ways and polished it all off. YUM-O! I laughed myself silly a few times, and all around felt so much better. I even got past my mental block then and finished a lot of my schoolwork.
I have some more problems to do before tonight's deadline, which isn't too bad considering that I've been either at the doctor's office, Maddy's therapy or here in the hospital ever since this week's class started (last Thursday). I'm so thankful that it's more calm and laid back here on the weekends or I never would have gotten as far as I have. So far the weekdays have been so hectic I've hardly had time to breath (or get out of my sleep clothes), let alone work on homework. It's so hard to concentrate even when there's nothing going on at the time. So to make a long story short, I HAVE to get off of here and attack those problems or they won't be done on time. But I did think it was important for me to update every one, so don't judge me too much for typing such a long email when I should be studying! :)
Thanks for praying and keep it up!
Pam
Monday, February 2, 2009
New digs:
We are now settled in on the third floor--out of the Peds ICU!! One step closer home.
I heard a rumor that we may begin trying to feed her by mouth today!
I heard a rumor that we may begin trying to feed her by mouth today!
Progress
Good Afternoon!
Maddy had another good night, and I slept straight from midnight to 6! That's with treatment every two hours and vitals checks in between. Not bad.... The doctors/RT are pleased with her progress. They said she's doing well enough to move up to the regular floor but that the beds are full, so it may take a while. She is having breathing treatments now every four hours instead of every two. We still have to get her eating by mouth and wean her off her O2 a little more, and make sure she's completely out of the woods before we go home. I'm thinking another couple days and we'll be home!
Maddy has been socializing with me and the nurse and RT today. Amy found her a swing that fits in the crib, so she was swinging and playing for a little while until she rocked back to sleep. She's been switched over to a nasal canula again, and she's so happy not to have a silly mask on.
In other news, the RSV shot arrived in Kokomo today, and the doctor here wants her to have it still. So Glen will probably be bringing it down later today. So glad that it didn't go to waste.
Thanks for praying!
Pam
Maddy had another good night, and I slept straight from midnight to 6! That's with treatment every two hours and vitals checks in between. Not bad.... The doctors/RT are pleased with her progress. They said she's doing well enough to move up to the regular floor but that the beds are full, so it may take a while. She is having breathing treatments now every four hours instead of every two. We still have to get her eating by mouth and wean her off her O2 a little more, and make sure she's completely out of the woods before we go home. I'm thinking another couple days and we'll be home!
Maddy has been socializing with me and the nurse and RT today. Amy found her a swing that fits in the crib, so she was swinging and playing for a little while until she rocked back to sleep. She's been switched over to a nasal canula again, and she's so happy not to have a silly mask on.
In other news, the RSV shot arrived in Kokomo today, and the doctor here wants her to have it still. So Glen will probably be bringing it down later today. So glad that it didn't go to waste.
Thanks for praying!
Pam
Sunday, February 1, 2009
Quick update
Maddy is about the same today. I asked if she would stay in PICU for the duration of her stay or head to the next floor, and they said she will move to Peds when her respiration rates start staying down.
In the night her respritation rates started putting off alarms, so I worried that she was not doing as well, but the nurse told me this morning it was because she was on her side and the lead was picking up heart rate too.
They put a feeding tube in this morning. Yesterday when we tried to feed her, she struggled so much. She coughed horribly with each swallow, and since we had to take the mask off, she de-SATed too. She worked so hard, pulling hard with each breath. She only ate 2-3 ounces between two feedings. The feedings tuckered her out completely each time. So to prevent her from losing weight (she's already very small for her age), they put the feeding tube in to get her the calories she needs.
It seems very strange that it's Sunday since I'm not in church. (Everyone from church--Man, I miss you all! Wanna come sing for me? I'm sure we could fit the choir in the lobby at least, but definitely not in this room. We could do the halls around the PICU. They kids would love it, I bet!) I may go find the chapel for a little quiet time later today.
Hugs to everyone. Thanks so much for your prayers.
In the night her respritation rates started putting off alarms, so I worried that she was not doing as well, but the nurse told me this morning it was because she was on her side and the lead was picking up heart rate too.
They put a feeding tube in this morning. Yesterday when we tried to feed her, she struggled so much. She coughed horribly with each swallow, and since we had to take the mask off, she de-SATed too. She worked so hard, pulling hard with each breath. She only ate 2-3 ounces between two feedings. The feedings tuckered her out completely each time. So to prevent her from losing weight (she's already very small for her age), they put the feeding tube in to get her the calories she needs.
It seems very strange that it's Sunday since I'm not in church. (Everyone from church--Man, I miss you all! Wanna come sing for me? I'm sure we could fit the choir in the lobby at least, but definitely not in this room. We could do the halls around the PICU. They kids would love it, I bet!) I may go find the chapel for a little quiet time later today.
Hugs to everyone. Thanks so much for your prayers.
Saturday, January 31, 2009
Hurry up and wait
Hi, everyone! I'm anxiously awaiting dinner from my Mom-in-law! I told her that she didn't have to bring me anything, but when I heard that it was homemade fried chicken and potato salad, I told her to get here fast (well, not in so many words...).
I'm supposed to be doing homework, but instead I've been facebooking and reading email. Oh, and holding Maddy for a while too.
Maddy is acting much better. She looks a lot better and she's resting much more comfortably. Nobody is saying anything about going home, though, and I imagine that she'll have to wean off the O2 a lot more first. Last night we had to go to a mask because she was only breathing through her mouth, and that ups the o2 to 4 L, so that she doesn't breath in too much CO2. They went ahead and brought in a blender to give her more pressure, so that ups the o2 more than it would just straight. For those of you medical junkies, she's keeps her sats up if she's at 65% flow right now. She drops a bit when she sleeps.
Thanks to Lisa for keeping the girls tonight so Glen can come see us, and thank you all for praying for us. I must admit that last night I was a little nervous, because I know how quickly things like this can go downhill. Today, it really seems like she's doing a lot better. I am very relieved that the pulmonologist told me to take her in again. It's scary just sitting and watching her color constantly and wondering what the whole story is. She was a pretty sick little baby yesterday.
In a total aside, I've been laughing about this for some time. I just get cracked up at my emails sometimes. I'm thinking of starting a list of "You might have a child with spina bifida if...." In the last 24 hours, I've had the following email titles (from my parent's spina bifida resource list) in my box: "Cone enemas," "Order Balloon Enemas," and "Rifton Blue Wave Toileting System." Of course, my trash has emptied a time or two, but I can about guarentee that there was one labeled "Bowel Program" too. If you'd like, I can keep you updated on all things bowel and bladder! HeeHee
I'm supposed to be doing homework, but instead I've been facebooking and reading email. Oh, and holding Maddy for a while too.
Maddy is acting much better. She looks a lot better and she's resting much more comfortably. Nobody is saying anything about going home, though, and I imagine that she'll have to wean off the O2 a lot more first. Last night we had to go to a mask because she was only breathing through her mouth, and that ups the o2 to 4 L, so that she doesn't breath in too much CO2. They went ahead and brought in a blender to give her more pressure, so that ups the o2 more than it would just straight. For those of you medical junkies, she's keeps her sats up if she's at 65% flow right now. She drops a bit when she sleeps.
Thanks to Lisa for keeping the girls tonight so Glen can come see us, and thank you all for praying for us. I must admit that last night I was a little nervous, because I know how quickly things like this can go downhill. Today, it really seems like she's doing a lot better. I am very relieved that the pulmonologist told me to take her in again. It's scary just sitting and watching her color constantly and wondering what the whole story is. She was a pretty sick little baby yesterday.
In a total aside, I've been laughing about this for some time. I just get cracked up at my emails sometimes. I'm thinking of starting a list of "You might have a child with spina bifida if...." In the last 24 hours, I've had the following email titles (from my parent's spina bifida resource list) in my box: "Cone enemas," "Order Balloon Enemas," and "Rifton Blue Wave Toileting System." Of course, my trash has emptied a time or two, but I can about guarentee that there was one labeled "Bowel Program" too. If you'd like, I can keep you updated on all things bowel and bladder! HeeHee
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