Soren got his MIC-KEY button put in a week ago and I LOVE this "upgrade" in the G-Tube experience. Now instead of a 6 inch tube sticking out of his belly (which made me very nervous) he has this small little port. When it's time to feed Soren, I pop the port open, attach a tube that locks in (yay!) and do the feeds. It's quite slick. I'm still keeping Soren in the binder around his belly because I'm afraid Soren will rub his belly and accidentally pull out the button. I know how to put a new one in, I'd just rather avoid it!
And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!
But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.
Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!
All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!
Nice to have our happy Soren back and better than ever!
Amy
Saturday, March 03, 2012
Monday, January 30, 2012
G-Tube 1 Month + Update
Hey all,
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.
And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.
I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"
He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.
On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.
That's it!
Tuesday, December 27, 2011
G-Tube 1 Week Update
So I was going to write yesterday about how great everything has been going. Soren had been getting more and more comfortable, recovering from his surgery. I was getting more and more adept and giving him his feeds through the G-tube. Why, in 5 days, I could crimp, flush, and feed with this tube like a master. (Those of you who know G-tube language get what I mean.) In fact, I could see how this was going to make my life significantly easier. I could do the feeds by myself, no sweat!
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!
But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.
Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.
But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.
Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?
After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.
The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.
So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.
And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.
So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.
Amy
Wednesday, December 21, 2011
G-Tube Update
Yesterday was really rough for Soren. Lots of pain from the surgery site. So he was getting regular doses of morphine, which seemed to help briefly.
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda!
Amy
And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.
He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.
With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.
Here he is happily watching Cars. Next up, Kung Fu Panda!
Amy
Sunday, December 18, 2011
G-Tube
I'm writing from Children's Hospital the night before Soren's surgery for his G-Tube. We came in a day early so that Soren could get IV fluids the night before his surgery. Like any other surgery patient, Soren won't be allowed to eat or drink anything after midnight tonight. But because Soren is on the Keto Diet, it's important to make sure that he is well-hydrated prior to his surgery. This will help prevent seizures tomorrow and help him through being "food-free" tomorrow.
I would explain the whole thing to you all, but quite honestly, it's all way more complicated than I can understand. The best I can understand is that Soren has to have specific IV fluids to make sure he's hydrated but also to make sure that he isn't thrown out of Ketosis. So (and I'm hoping I'm getting this right) there will be a certain level of glucose, but not as high as a patient NOT on the Keto Diet would get. The nurses will be checking Soren's glucose level to make sure he's a-okay.
After the G-Tube is put in, we will give him his Keto formula through the G-Tube. At first, this will be half-strength and then we will build up once he seems ready.
About the G-Tube and our decision to put it in. This has been a long and hard decision that we've debated for years. When Soren started the Keto Diet over a year ago, we started thinking about it all the more. One of the challenges with the Keto Diet is that you have to get every bit of food and drink in for it to be balanced and thus to control the seizures. Plus, when Soren started the diet, we had to add more fluids to his daily intake because it is a high-fat diet. We have to make sure that fat is moving through him and not clogging up the system.
Soren has always been a good eater. BUT when he doesn't feel like eating, he defiantly holds the food in his mouth and then dribbles it out. With the Keto Diet, this can get REALLY frustrating. When this happens, feeding him can take forever. Also, Soren's never developed the skill to feed himself or to drink from a cup. He can only drink from a bottle that someone feeds him (he doesn't hold it himself). So, now that Soren is 8 years old, holding and feeding him has become really physically challenging on my body. During the times that Soren chooses not to eat solid food, I feed him his diet via formula through a bottle. But sometimes he doesn't even feel like drinking and dribbles that out as well.
Add on top of that trying to get his meds in which are essential. And if Soren is sick getting fluids into him is even more important yet even more difficult!
So, we finally came to the conclusion that we had to get Soren a G-Tube. Part of the reason this is hard is because, other than his seizures, Soren's a really healthy kid. The thought of putting something foreign in his perfect little body was really hard for us. Plus, we've heard both good and bad stories about the G-Tube. With a foreign object, there is always risk of infection. Also, if we don't continue to feed him by mouth regularly he can lose that skill. (So we plan to feed him regularly, but give him liquids via the G-Tube.)
But, finally, the good outweighed the bad, and we decided to do the surgery. It's worked out well that he's having it right before Winter Break, so we'll have that time to learn about the G-Tube and practice with it before Soren goes back to school. I know his teacher and aids will do a great job helping him with it. Overall, our goal is life improvement for everyone involved--Soren and us.
Please think good thoughts for us as we venture into this next stage of our journey with Soren.
Amy
I would explain the whole thing to you all, but quite honestly, it's all way more complicated than I can understand. The best I can understand is that Soren has to have specific IV fluids to make sure he's hydrated but also to make sure that he isn't thrown out of Ketosis. So (and I'm hoping I'm getting this right) there will be a certain level of glucose, but not as high as a patient NOT on the Keto Diet would get. The nurses will be checking Soren's glucose level to make sure he's a-okay.
After the G-Tube is put in, we will give him his Keto formula through the G-Tube. At first, this will be half-strength and then we will build up once he seems ready.
About the G-Tube and our decision to put it in. This has been a long and hard decision that we've debated for years. When Soren started the Keto Diet over a year ago, we started thinking about it all the more. One of the challenges with the Keto Diet is that you have to get every bit of food and drink in for it to be balanced and thus to control the seizures. Plus, when Soren started the diet, we had to add more fluids to his daily intake because it is a high-fat diet. We have to make sure that fat is moving through him and not clogging up the system.
Soren has always been a good eater. BUT when he doesn't feel like eating, he defiantly holds the food in his mouth and then dribbles it out. With the Keto Diet, this can get REALLY frustrating. When this happens, feeding him can take forever. Also, Soren's never developed the skill to feed himself or to drink from a cup. He can only drink from a bottle that someone feeds him (he doesn't hold it himself). So, now that Soren is 8 years old, holding and feeding him has become really physically challenging on my body. During the times that Soren chooses not to eat solid food, I feed him his diet via formula through a bottle. But sometimes he doesn't even feel like drinking and dribbles that out as well.
Add on top of that trying to get his meds in which are essential. And if Soren is sick getting fluids into him is even more important yet even more difficult!
So, we finally came to the conclusion that we had to get Soren a G-Tube. Part of the reason this is hard is because, other than his seizures, Soren's a really healthy kid. The thought of putting something foreign in his perfect little body was really hard for us. Plus, we've heard both good and bad stories about the G-Tube. With a foreign object, there is always risk of infection. Also, if we don't continue to feed him by mouth regularly he can lose that skill. (So we plan to feed him regularly, but give him liquids via the G-Tube.)
But, finally, the good outweighed the bad, and we decided to do the surgery. It's worked out well that he's having it right before Winter Break, so we'll have that time to learn about the G-Tube and practice with it before Soren goes back to school. I know his teacher and aids will do a great job helping him with it. Overall, our goal is life improvement for everyone involved--Soren and us.
Please think good thoughts for us as we venture into this next stage of our journey with Soren.
Amy
Friday, December 16, 2011
Thanks for the Donations
Hello everyone,
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.
I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.
But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.
Thank you so very much for your kindness. It has meant the world to us and our sweet boy.
Amy
Monday, October 17, 2011
Ketogenic Diet: One Year
It's been a little over a year since Soren started the Keto Diet. And I must say, it's been totally worth the work and I've actually gotten good at the whole measuring, heating, and mixing of the foods.
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.
Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.
The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.
Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!
And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.
AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.
Amy
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