We had TPN clinic yesterday, and I think I left equally frustrated as I arrived. It went beyond the fact that we weren't seen until 3:45, and our appointment time was 2:40. I make appointments for as early in the day as possible when we go to UCLA, because the traffic coming home gets horrid. It took me over 2 hours to get home, and it's only 42 miles.
The good news is that Emily weighed 15.9 kg, which is officially 35 pounds! So her nutritional status is good on TPN, at least it's doing one good important thing.
Her retching and vomiting however are uncontrolled. We discussed a few things, and for now we are going to try Baclofen. The thought is that it will relax the muscles in her stomach, and hopefully ease the retching. As a bonus, it should relax the spasicity and clonus in her feet/ankles. The downside is that it will further relax the rest of her body, which is already low tone. He said that if her drooling gets worse and she's choking more on secretions, we will increase her robinol. So we add a med, which will make us increase another med ... and then he has the audacity to say "She's sure on a lot of meds, we should see what we can discontinue soon". Seriously? Ugh.
If the baclofen doesn't work, we will consider a seperate j-tube. She doesn't tolerate gj-tubes, she vomits bile and screams with j-tube feeds. The thought behind doing it is that at least we could get her meds in her, without them being retched up. We leave her g-tube open to gravity 24 hours a day, except for right after giving meds. We're supposed to clamp it for 30 minutes to let them absorb, but I wait 60 minutes. Even at 60 minutes, a large portion of them drains out.
We go back in 2 weeks. I am crossing my fingers that the Baclofen works, without having too much detrimental effect.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Showing posts with label g-tube. Show all posts
Showing posts with label g-tube. Show all posts
Thursday, July 21, 2011
Tuesday, February 15, 2011
Appointment update
We met with the neurosurgeon yesterday, and I really liked him. He was very personable, and explained things completely. I already knew all about the VNS from researching it so much and talking to other moms, but it was nice to have it all laid out by him anyway. We went over all the "informed consent" that he required, and then I signed consent forms. Now I just wait for the authorization and then we schedule the surgery. He said it should happen within 2-3 weeks. I am hoping it is sooner than later! I know that the VNS will be placed and left off, and then turned on later and adjusted for a while. I know that the process may take some time, but I am anxious to get it started.
Emily had a re-evaluation by her OT and PT today, and it really brought to light what these seizures are doing to her. They haven't worked with her for months, as she doesn't receive regular therapy right now. She hasn't met any goals for a year, and she doesn't cooperate enough to benefit from therapy. Add in the seizures and medical instability, and there's no use going to therapy right now. Anyway, they were doing her evaluation today and it was hard to sit through. There are some things she is doing great at. She is doing great at picking things up, touching different textures, etc. She is doing great at crawling to toys, unless it's a really bad seizure day. But her balance is much worse, her posture and stances are much worse. Her protective reflexes are now delayed by much more than they were. Little things that just show how much these stupid seizures are tearing her down. We have GOT to get them under control!
In better news, the Banzel she is on does seem to be helping. She is having many less atonic seizures than she was. She can go 30 minutes sometimes while sitting on the floor without a single atonic seizure! I know that doesn't sound long, but it was literally every 30 seconds for the last few weeks. Her myoclonics are a little better as well. We are seeing a new seizure type though, where her eyes kind of roll up and around in a circle, and her lip twitches. It is very subtle, and it happens in 2-3 seconds. She does it off and on all day though.
Her gagging and retching from last week is gone. I figured out the cause finally. We were trying to increase the calories in her overnight feed, as she has been slowly losing weight. When I went back to the lower calorie feed, she did fine. Tried upping it again, retching and gagging. So I have an email in to the dietician to let her know.
Her g-tube site has been angry lately, I am going to call the GI in the morning. She has always had a BEAUTIFUL g-tube site. Never needed gauze, never leaked, not had a granuloma since the very first few months of placement. Now it's crusty, red, weepy, and raw. I am ordering some Button Buddies to help, but I think it needs to be seen by the GI in the meantime.
In some GREAT news - her Sleep Safe Bed is being delivered on Thursday!! I don't know when it will be put together, as it is part of her Make-A-Wish. I have to call them in the morning and let them know it's scheduled for delivery, to find out if the rest of her bedroom make-over is ready. Then we can set a date for the wish to be fufilled. I am SOOO excited for her new bed!! :)
As always, I like to end this post with a FUN picture. This was taken Valentine's Day weekend at a birthday party we were invited to. I love this new shirt she's wearing from 3E Love!! If you haven't checked them out, you just have to!
Emily had a re-evaluation by her OT and PT today, and it really brought to light what these seizures are doing to her. They haven't worked with her for months, as she doesn't receive regular therapy right now. She hasn't met any goals for a year, and she doesn't cooperate enough to benefit from therapy. Add in the seizures and medical instability, and there's no use going to therapy right now. Anyway, they were doing her evaluation today and it was hard to sit through. There are some things she is doing great at. She is doing great at picking things up, touching different textures, etc. She is doing great at crawling to toys, unless it's a really bad seizure day. But her balance is much worse, her posture and stances are much worse. Her protective reflexes are now delayed by much more than they were. Little things that just show how much these stupid seizures are tearing her down. We have GOT to get them under control!
In better news, the Banzel she is on does seem to be helping. She is having many less atonic seizures than she was. She can go 30 minutes sometimes while sitting on the floor without a single atonic seizure! I know that doesn't sound long, but it was literally every 30 seconds for the last few weeks. Her myoclonics are a little better as well. We are seeing a new seizure type though, where her eyes kind of roll up and around in a circle, and her lip twitches. It is very subtle, and it happens in 2-3 seconds. She does it off and on all day though.
Her gagging and retching from last week is gone. I figured out the cause finally. We were trying to increase the calories in her overnight feed, as she has been slowly losing weight. When I went back to the lower calorie feed, she did fine. Tried upping it again, retching and gagging. So I have an email in to the dietician to let her know.
Her g-tube site has been angry lately, I am going to call the GI in the morning. She has always had a BEAUTIFUL g-tube site. Never needed gauze, never leaked, not had a granuloma since the very first few months of placement. Now it's crusty, red, weepy, and raw. I am ordering some Button Buddies to help, but I think it needs to be seen by the GI in the meantime.
In some GREAT news - her Sleep Safe Bed is being delivered on Thursday!! I don't know when it will be put together, as it is part of her Make-A-Wish. I have to call them in the morning and let them know it's scheduled for delivery, to find out if the rest of her bedroom make-over is ready. Then we can set a date for the wish to be fufilled. I am SOOO excited for her new bed!! :)
As always, I like to end this post with a FUN picture. This was taken Valentine's Day weekend at a birthday party we were invited to. I love this new shirt she's wearing from 3E Love!! If you haven't checked them out, you just have to!
Tuesday, August 26, 2008
Starting From Today
I have put off starting to blog because I don't know how to start! Do I start with Peanut's history? Do I start with a recap of our family? Or do I just start? So here I am, starting with today. I'm sure that history will be recapped as I blog, but I am going to stop worrying about that and just type.
Peanut is tube-fed 100%. She can eat, functionally she is able to chew and swallow. But she won't. She refuses. She will spit food out, turn her head, refuse to open her mouth. If you manage to get in a bite that she didn't want, she will gag on it until she chokes it up. Fun! She has been going to feeding therapy at the children's hospital, but it's not making any progress so we are taking a 6 month hiatus.
Enter mommy guilt. "What if I keep taking her, and she suddenly starts eating next month?" Arg. I had someone ask me about hyperbaric oxygen treatment today. No, we have not tried it for Peanut. It is EXPENSIVE. Insurance does not cover it. And I cannot find enough supporting evidence that it works for kids with Cerebral Palsy.
Which brings us to Peanut's latest diagnosis. For lack of anything else, she is officially diagnosed with Spastic Diplegia Cerebral Palsy of Unknown Etiology. Funny that it's spastic, because MOST of her is hypotonic (low tone). As in, the opposite of spastic. Her ankles, however, are high tone. It's important that we find high tone somewhere because that is a qualifying diagnosis for her therapy and insurance purposes. It's complicated and makes no sense, but she luckily has the high tone in her ankles so it works. Overall, she is so loose and floppy. She can sit up, and crawl. She can walk like a mad woman in her gait trainer. But she cannot stand unsupported. She has AFO's (ankle braces), and is getting knee braces (to prevent hyperextension). She is SO loose, her hips and knees pop in and out of socket. She actually likes that feeling, and does it on purpose. Ick, I know! Between her popping her knee in and out (click click click) she grinds her teeth. Constantly. It's called bruxism technically, and it is SO annoying! She gets a lot of sensory input from it, evidently.
The kids go back to school a week from tomorrow. Peanut is starting kindergarten! She has been in school since she turns three, but it's big that she's a KINDERGARTENER! :) Monkey is going into third grade. It makes me feel old to have a kid that old.
I better go get dinner made. Daddy will be home soon. Peanut has a nurse here today, so I went and got my nails done and did the last back to school shopping. I better go do SOMETHING to prove I didn't laze around all day. :)
Peanut is tube-fed 100%. She can eat, functionally she is able to chew and swallow. But she won't. She refuses. She will spit food out, turn her head, refuse to open her mouth. If you manage to get in a bite that she didn't want, she will gag on it until she chokes it up. Fun! She has been going to feeding therapy at the children's hospital, but it's not making any progress so we are taking a 6 month hiatus.
Enter mommy guilt. "What if I keep taking her, and she suddenly starts eating next month?" Arg. I had someone ask me about hyperbaric oxygen treatment today. No, we have not tried it for Peanut. It is EXPENSIVE. Insurance does not cover it. And I cannot find enough supporting evidence that it works for kids with Cerebral Palsy.
Which brings us to Peanut's latest diagnosis. For lack of anything else, she is officially diagnosed with Spastic Diplegia Cerebral Palsy of Unknown Etiology. Funny that it's spastic, because MOST of her is hypotonic (low tone). As in, the opposite of spastic. Her ankles, however, are high tone. It's important that we find high tone somewhere because that is a qualifying diagnosis for her therapy and insurance purposes. It's complicated and makes no sense, but she luckily has the high tone in her ankles so it works. Overall, she is so loose and floppy. She can sit up, and crawl. She can walk like a mad woman in her gait trainer. But she cannot stand unsupported. She has AFO's (ankle braces), and is getting knee braces (to prevent hyperextension). She is SO loose, her hips and knees pop in and out of socket. She actually likes that feeling, and does it on purpose. Ick, I know! Between her popping her knee in and out (click click click) she grinds her teeth. Constantly. It's called bruxism technically, and it is SO annoying! She gets a lot of sensory input from it, evidently.
The kids go back to school a week from tomorrow. Peanut is starting kindergarten! She has been in school since she turns three, but it's big that she's a KINDERGARTENER! :) Monkey is going into third grade. It makes me feel old to have a kid that old.
I better go get dinner made. Daddy will be home soon. Peanut has a nurse here today, so I went and got my nails done and did the last back to school shopping. I better go do SOMETHING to prove I didn't laze around all day. :)
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