Charlotte was readmitted to CHOP last night, after having a rather unsettling event during her 6:00 feed.
Her heart rate plummeted to the 20's and her oxygen sat's dropped into the 40's as she was sleeping. Her body was blue and grey and unresponsive. I had to do chest compressions and use the ambu bag to get her breathing again. She was disoriented for about 30 minutes after the event, which is what really alarmed us.
Today they are monitoring her, and we'll see if we can get any tests run over the weekend, or if we have to wait until Monday to start exploring. Currently they believe it was either a cardiac event, or some type of seizure activity that triggered the episode.
We're so grateful that I was in the same room with her, and that we have monitors and equipment that literally saved her life.
We're also wondering why the universe has to mock Charlotte's progress, and why she can't pull things like this while Peter is in the room. He's the medical one for goodness sake!
But that's a post for another day.
Currently, she's her happy, smiling self and you'd never, ever suspect that she's such a little stinker. We doubt that these tests will give us any conclusive answer, but they'll look nonetheless and all will be well.
She's actually doing much better than I am :)
Saturday, January 15, 2011
Friday, January 14, 2011
Milk Scan
We got the results from the milk scan this morning and they told us, well, pretty much nothing. Her gastric emptying time is within normal limits and it showed several episodes of reflux. No big announcements there.
So we're waiting to hear back from the GI department to see if they want us to go for a scope to check out her esophagus or if we'll just wait and see how things play out once she has her sleep study.
Hurry up and wait: the story of Charlotte's life.
Literally.
So we're waiting to hear back from the GI department to see if they want us to go for a scope to check out her esophagus or if we'll just wait and see how things play out once she has her sleep study.
Hurry up and wait: the story of Charlotte's life.
Literally.
Thursday, January 13, 2011
GI and Pulmonary Appointments
Charlotte has had a busy week. Yesterday she meet with the GI department at CHOP and today she had a follow up with the Pulmonologist, had a milk scan, and was evaluated for a sleep study. Phew. I don't know how she keeps up with herself... did that make sense? Must be the lack of sleep.
Anyway.
The GI suggestions depend a lot on the results from the milk scan. Charlotte's been having some problems with her feedings, and has a difficult time keeping her oxygen saturations up while sleeping.
I'm going to ramble here with a bit of an explanation, so those who want to can skip it.
When Charlotte had her g-tube placed, she also had a nissen fundoplication done as well. The nissen procedure takes the top of the stomach and wraps it around the esophagus, creating a valve that only allows things to come from the mouth into the stomach, and not allowing things from the stomach to flow up to the mouth. Vomiting, burping, spitting up, etc are not "possible" for Charlotte. {the quotes indicate that anything is possible in real life}. Since part of Charlotte's stomach is wrapped around the esophagus, there isn't as much space in her belly for food. So she can only take about 2 ounces of formula at once. (A 10 month old typically takes about 6 ounces at a time). So Charlotte gets 2 ounces 4 times a day, and then, to make up for the missing calories and fluid, she is fed continuously at night for ten hours. Charlotte has been having an increasingly difficult time with these nighttime feedings. She's been gagging and retching so much that she often turns blue, and cannot breathe, which tends to be an important thing to do. Luckily we have nursing and they have fancy things like ambu bags to keep her breathing.
So far, we've changed her fluid volume, spread her feedings out so they take longer (she's fed via a pump that feeds at a certain rate since she can't stretch her stomach fast enough to take all the volume at once), and added special bags that should help her vent (she can't burp, so the air has to be vented from her belly). So far we've seen some improvement, but not enough to be thrilled. Actually, not even enough to be comfortable with the current status quo.
The surgery team (who placed her g-tube and performed the fundoplication) and the GI team are currently suggesting that we change Charlotte to a GJ tube. Her current feeding tube feeds right into the stomach, while the GJ tube would feed into her stomach during the day, and into her intestines during her night time feedings. We're not totally on board with this suggestion, as we feel it takes care of her symptoms and doesn't address the problem behind it. Of course, that's a problem in and of itself, since we have NO idea what that problem actually is.
So we're waiting it out. We'll get the results from the milk maybe tomorrow, but probably next week. From this scan we'll find out if her stomach is emptying too fast (called dumping syndrome) or if it is emptying too slowly (called delayed gastric emptying). Either of these problems could causing the gagging/retching episodes that we have been witnessing. We'd treat dumping with fiber (tricky, huh?) and delayed gastric emptying would be treated with a motility agent (usually an antibiotic).
If it isn't one of those, it could be that her esophagus is narrowed. At that point, we'll work on treatments for that.
Clear as mud, eh?
Pulmonary wrap up will have to come in another post. But you knew that was going to happen, right?
Anyway.
The GI suggestions depend a lot on the results from the milk scan. Charlotte's been having some problems with her feedings, and has a difficult time keeping her oxygen saturations up while sleeping.
I'm going to ramble here with a bit of an explanation, so those who want to can skip it.
When Charlotte had her g-tube placed, she also had a nissen fundoplication done as well. The nissen procedure takes the top of the stomach and wraps it around the esophagus, creating a valve that only allows things to come from the mouth into the stomach, and not allowing things from the stomach to flow up to the mouth. Vomiting, burping, spitting up, etc are not "possible" for Charlotte. {the quotes indicate that anything is possible in real life}. Since part of Charlotte's stomach is wrapped around the esophagus, there isn't as much space in her belly for food. So she can only take about 2 ounces of formula at once. (A 10 month old typically takes about 6 ounces at a time). So Charlotte gets 2 ounces 4 times a day, and then, to make up for the missing calories and fluid, she is fed continuously at night for ten hours. Charlotte has been having an increasingly difficult time with these nighttime feedings. She's been gagging and retching so much that she often turns blue, and cannot breathe, which tends to be an important thing to do. Luckily we have nursing and they have fancy things like ambu bags to keep her breathing.
So far, we've changed her fluid volume, spread her feedings out so they take longer (she's fed via a pump that feeds at a certain rate since she can't stretch her stomach fast enough to take all the volume at once), and added special bags that should help her vent (she can't burp, so the air has to be vented from her belly). So far we've seen some improvement, but not enough to be thrilled. Actually, not even enough to be comfortable with the current status quo.
The surgery team (who placed her g-tube and performed the fundoplication) and the GI team are currently suggesting that we change Charlotte to a GJ tube. Her current feeding tube feeds right into the stomach, while the GJ tube would feed into her stomach during the day, and into her intestines during her night time feedings. We're not totally on board with this suggestion, as we feel it takes care of her symptoms and doesn't address the problem behind it. Of course, that's a problem in and of itself, since we have NO idea what that problem actually is.
So we're waiting it out. We'll get the results from the milk maybe tomorrow, but probably next week. From this scan we'll find out if her stomach is emptying too fast (called dumping syndrome) or if it is emptying too slowly (called delayed gastric emptying). Either of these problems could causing the gagging/retching episodes that we have been witnessing. We'd treat dumping with fiber (tricky, huh?) and delayed gastric emptying would be treated with a motility agent (usually an antibiotic).
If it isn't one of those, it could be that her esophagus is narrowed. At that point, we'll work on treatments for that.
Clear as mud, eh?
Pulmonary wrap up will have to come in another post. But you knew that was going to happen, right?
Friday, January 7, 2011
Thursday, January 6, 2011
Great Days
Miss Charlotte Amalie had an appointment with the Feeding Clinic at CHOP this week. At the Feeding Clinic we see a Pediatrician, a Dietitian, an Occupational Therapist, and a Speech Therapist. They all evaluate Charlotte's eating from their different views and "round" on her and then give us suggestions to help her progress with her oral feeding.
We met with them for the first time two months ago and at that point we were struggling with getting Charlotte to take bottles. Since then we've scrapped any thought of taking a bottle and have moved to a therapy protocol that involves baby food purees. Charlotte still isn't getting any nutritional value from her feeding therapy, but she's improved by leaps and bounds in the past few weeks. It's incredible to watch these professionals work with her week after week and to actually see her progress.
The Feeding Team at CHOP whole-heartedly agreed. They were so impressed with her progress and encouraged us to keep working on her purees and have us the go ahead to start with a sippy cup. This is such a huge change from last time, I can hardly describe it.
We are so pleased to have such incredible therapists working with Charlotte. We've been beyond blessed with the professionals that have treated Charlotte all along the way. From the very beginning, seriously, the very first moment of her life, we've had such incredible medical professionals who have not only treated Charlotte, they've loved her.
And that love stuff?
It heals.
It heals all of us.
We met with them for the first time two months ago and at that point we were struggling with getting Charlotte to take bottles. Since then we've scrapped any thought of taking a bottle and have moved to a therapy protocol that involves baby food purees. Charlotte still isn't getting any nutritional value from her feeding therapy, but she's improved by leaps and bounds in the past few weeks. It's incredible to watch these professionals work with her week after week and to actually see her progress.
The Feeding Team at CHOP whole-heartedly agreed. They were so impressed with her progress and encouraged us to keep working on her purees and have us the go ahead to start with a sippy cup. This is such a huge change from last time, I can hardly describe it.
We are so pleased to have such incredible therapists working with Charlotte. We've been beyond blessed with the professionals that have treated Charlotte all along the way. From the very beginning, seriously, the very first moment of her life, we've had such incredible medical professionals who have not only treated Charlotte, they've loved her.
And that love stuff?
It heals.
It heals all of us.
Tuesday, January 4, 2011
Bad Days
I pumped for six months. Charlotte continued to have problems with her reflux so we did testing. She showed severe sensitivity to what was in my breast milk, and since it was all frozen, we had no idea what I had eaten or consumed when it was expressed. After the g-tube, we had to go straight formula to help with her digestion.
I've never thought that I would be one to be so set on breast feeding. I breast fed Caleb for a year and was happy we did it, but even more happy it was over. But the day the rental company came to pick up that yellow breast pump for Charlotte, I watched another notch in the "failure" column show up.
I'd failed to keep a child inside of me, I'd failed to keep her safe, to grow her eye lashes, to give her time to develop. I'd failed at all of that. And yet, I had come to terms with it. Charlotte was the one who came early, and I just went with her plan. I was alright. Really. Really, really.
But not being able to breast feed her seemed bigger, if that makes any sense. It was the one thing I felt that we could do "normally." Throughout her entire NICU experience, I kept looking forward to the time we could spent breast feeding. We worked on non-nutritive suck exercises, and I pumped. We did oral stimulation, and I pumped. We did pacifier dips, and I pumped. We did everything and I pumped. And pumped. And pumped some more. Every three hours for six months.
I have more pumping stories than you would believe. Like the time someone broke into my car and stole my milk and ice packs. (Jerks) Or adapter I purchased for the car so I could pump while driving. Or the alarms on my phone that went off every three hours. All. Night. Long.
She had a fantastic suck reflex. She was awesome at latching on. And she aspirated like nothing the Speech Therapist had ever seen. I watched that liquid filling her lungs on the swallow study and knew our dream, uh, I mean, my dream, was over.
Peter threw out the last of the frozen milk this week. It's been sitting in the upright freezer (which we purchased to store all the milk while she was in the NICU) for three months. It was my final goodbye to a dream that will never be. I know the day I turned it the pump was really the end, but this seemed final. Absolute.
And although I'm not really ready for it, I'm able to envision a day when I'll be OK with it. Someday.
I've never thought that I would be one to be so set on breast feeding. I breast fed Caleb for a year and was happy we did it, but even more happy it was over. But the day the rental company came to pick up that yellow breast pump for Charlotte, I watched another notch in the "failure" column show up.
I'd failed to keep a child inside of me, I'd failed to keep her safe, to grow her eye lashes, to give her time to develop. I'd failed at all of that. And yet, I had come to terms with it. Charlotte was the one who came early, and I just went with her plan. I was alright. Really. Really, really.
But not being able to breast feed her seemed bigger, if that makes any sense. It was the one thing I felt that we could do "normally." Throughout her entire NICU experience, I kept looking forward to the time we could spent breast feeding. We worked on non-nutritive suck exercises, and I pumped. We did oral stimulation, and I pumped. We did pacifier dips, and I pumped. We did everything and I pumped. And pumped. And pumped some more. Every three hours for six months.
I have more pumping stories than you would believe. Like the time someone broke into my car and stole my milk and ice packs. (Jerks) Or adapter I purchased for the car so I could pump while driving. Or the alarms on my phone that went off every three hours. All. Night. Long.
She had a fantastic suck reflex. She was awesome at latching on. And she aspirated like nothing the Speech Therapist had ever seen. I watched that liquid filling her lungs on the swallow study and knew our dream, uh, I mean, my dream, was over.
Peter threw out the last of the frozen milk this week. It's been sitting in the upright freezer (which we purchased to store all the milk while she was in the NICU) for three months. It was my final goodbye to a dream that will never be. I know the day I turned it the pump was really the end, but this seemed final. Absolute.
And although I'm not really ready for it, I'm able to envision a day when I'll be OK with it. Someday.
Monday, January 3, 2011
Good Days
Charlotte had a great day in therapy today. She ATE baby food (meaning she didn't gag when a small amount of food was placed in her mouth-- we have different standards around here). We know that tomorrow will bring something different, but for today, we're smiling and enjoying the progress.
Who knew that a spoonful of peas could make a parent so happy?
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