Levi did very well last night on a continuous feed, and has kept down his afternoon feed, so he's coming home! He started Reglan yesterday afternoon. This should increase his intestinal motility so his stomach can empty more normally, and keep him from throwing up and being uncomfortable. So far so good! The next few weeks will tell whether this is our answer or not. I'm praying it is!
Friday, August 9, 2013
Thursday, August 8, 2013
Finally, A Plan of Action!
We've consulted with GI and neurology, and all the doctors are in agreement as to the course of action. Let me tell you, that just doesn't happen very often! So Levi has been started on Pedialyte feeds, and tonight will begin continuous formula feeds overnight. If he tolerates that, then we will begin to increase to bolus feeds during the day.
The gastric emptying study did show a significant delay. His stomach emptied about half as much contents as it should have, so today he will start Reglan, a medication to increase motility and help the stomach to empty. I'm praying this works! But if it doesn't we have other options. It's so nice to be working toward something that might help. It's been a really hard year, I'd love to celebrate the anniversary of the beginning of all the GI issues with something that will take those problems away!
The gastric emptying study did show a significant delay. His stomach emptied about half as much contents as it should have, so today he will start Reglan, a medication to increase motility and help the stomach to empty. I'm praying this works! But if it doesn't we have other options. It's so nice to be working toward something that might help. It's been a really hard year, I'd love to celebrate the anniversary of the beginning of all the GI issues with something that will take those problems away!
Inpatient Again
Levi has yet again been throwing up and screaming. Tuesday night he threw up all night, we couldn't even get him to keep down a very small amount of Pedialyte, so off to the hospital we went. Daddy stayed with him while I went back home for a therapy meeting, which also included transition from at home therapy to going to school. I met Tony, from the school district, and liked him right off. The next few months we will work together to have everything set for him to start at William Bedell ARC in December, the day after he turns 3. We chose this option over regular preschool because it's therapy intensive, and that will be so good for Levi.
Back at the hospital, nothing has really happened. He's on IV fluids, Nexium, and Zofran. As usual, they will be holding his feeds so his tummy can rest. We are waiting on results from the gastric emptying scan that was done at SLU on Monday, and hoping that will shed some light on the situation. We discussed my plan to wean down the ketogenic diet to rule that out as a possible cause for the GI problems, IF the gastric scan is normal. If it is not normal, I think we'll probably be discussing changing his feeding tube from a G tube (in the stomach) to a GJ tube (in the stomach and small intestine). Hopefully we will find out today.
He had a good, restful night. He needed it! The poor guy was up the majority of both Monday and Tuesday nights, and he doesn't like to sleep away daylight. He should feel better when he wakes up. Thanks to everyone who is praying for our little guy!
Back at the hospital, nothing has really happened. He's on IV fluids, Nexium, and Zofran. As usual, they will be holding his feeds so his tummy can rest. We are waiting on results from the gastric emptying scan that was done at SLU on Monday, and hoping that will shed some light on the situation. We discussed my plan to wean down the ketogenic diet to rule that out as a possible cause for the GI problems, IF the gastric scan is normal. If it is not normal, I think we'll probably be discussing changing his feeding tube from a G tube (in the stomach) to a GJ tube (in the stomach and small intestine). Hopefully we will find out today.
He had a good, restful night. He needed it! The poor guy was up the majority of both Monday and Tuesday nights, and he doesn't like to sleep away daylight. He should feel better when he wakes up. Thanks to everyone who is praying for our little guy!
Wednesday, July 31, 2013
Recent Events
For about a week after Levi's Nexium dose was doubled, the breathing issues improved drastically and the vomiting stopped. Since we had just started Pulmicort treatments through the nebulizer, I decided to stop these so we would know if the breathing problems had been caused by extreme reflux or not. After a week, both the breathing and vomiting issues returned. We restarted Pulmicort two weeks ago, and so far it has had no effect. Thankfully, his oxygen has maintained in the mid to high 90's.
We saw our GI doctor yesterday concerning the vomiting. I haven't been able to get all of his feeds into him since he started vomiting weeks ago. I've tried many different feeding schedules, but he just doesn't seem to be able to handle the volume he's supposed to have. He's even throwing up near the end of his overnight feeds, which are given at a very slow rate. So, I have just been giving him what he can take. I think it's better for him to receive less than he's supposed to have, than for him to be throwing up every day as I try to over fill his tummy. I've researched online and tried so hard to find a solution on my own. I have two theories, both of which the doctor agreed were plausible. 1.) Nexium is no longer working. 2.) Delayed gastric emptying has returned, causing his stomach to retain a large portion of the feeds. Dr. Rosenblum said Levi is on such a high dose of Nexium that it should be working great, but if his stomach isn't emptying, it may not be getting absorbed by the body. First and foremost he'd like Levi to have a chest x-ray to rule out pneumonia, and maybe a bronchoscopy. (He's had several chest x-rays for that reason, but the last was 3 weeks ago.) Once he feels confident that a respiratory problem is not causing the vomiting, he will send Levi for another gastric emptying test and an upper GI with small bowel follow through. In the meantime, I'm trying to get some stomach ph strips so I can see if his stomach is acidic, and before each feed I am to pull out stomach contents into a syringe to see what he is retaining. If he is indeed still full, I'm to throw away what I pull out and give a fresh feed. I'm very interested to see what I'm going to find today when I do this for the first time.
We've also restarted Neurontin. Levi was constantly cranky with many periods of screaming. Almost immediately after the first pill, he took a nap and woke up happy. We've since increased to 3 doses a day. Here are some cute pics of our little guy.
We saw our GI doctor yesterday concerning the vomiting. I haven't been able to get all of his feeds into him since he started vomiting weeks ago. I've tried many different feeding schedules, but he just doesn't seem to be able to handle the volume he's supposed to have. He's even throwing up near the end of his overnight feeds, which are given at a very slow rate. So, I have just been giving him what he can take. I think it's better for him to receive less than he's supposed to have, than for him to be throwing up every day as I try to over fill his tummy. I've researched online and tried so hard to find a solution on my own. I have two theories, both of which the doctor agreed were plausible. 1.) Nexium is no longer working. 2.) Delayed gastric emptying has returned, causing his stomach to retain a large portion of the feeds. Dr. Rosenblum said Levi is on such a high dose of Nexium that it should be working great, but if his stomach isn't emptying, it may not be getting absorbed by the body. First and foremost he'd like Levi to have a chest x-ray to rule out pneumonia, and maybe a bronchoscopy. (He's had several chest x-rays for that reason, but the last was 3 weeks ago.) Once he feels confident that a respiratory problem is not causing the vomiting, he will send Levi for another gastric emptying test and an upper GI with small bowel follow through. In the meantime, I'm trying to get some stomach ph strips so I can see if his stomach is acidic, and before each feed I am to pull out stomach contents into a syringe to see what he is retaining. If he is indeed still full, I'm to throw away what I pull out and give a fresh feed. I'm very interested to see what I'm going to find today when I do this for the first time.
We've also restarted Neurontin. Levi was constantly cranky with many periods of screaming. Almost immediately after the first pill, he took a nap and woke up happy. We've since increased to 3 doses a day. Here are some cute pics of our little guy.
Asleep on the floor while we ate at Kobe's.
Does this look comfy?? Time for a twin bed!
Chillaxin'
Riding my trike!
SO much fun!!
Monday, July 8, 2013
Hospital Update
So for the past few weeks, Levi has been dealing with difficulty breathing, persistent low grade fever, and vomiting old blood. He had one of the worst screaming fits I've ever seen on Friday, and we brought him into the ER again. He had Toradol, which always takes away his pain, even after surgery, and it didn't even dim the pain, then Benadryl as well, which works well to relax him and help him sleep, and it didn't help either. He was admitted and I fought with the GI resident so he could have morphine. (GI docs don't like to give narcotics because it slows down the intestinal tract, but when pain is an issue, it has to be top priority!) They wanted to give him Ativan instead, but I flat refused. He had that once before, and it caused a long period of seizures. The first dose of morphine also needed a Benadryl chaser, but it actually made him comfortable and he was able to sleep. They sent him to x-ray for a full body scan to make sure he hadn't fractured a bone, and also the normal workup of obstruction series and shunt series, as well as bloodwork. Everything came back normal. His amylase was high, which points to pancreatitis, but they repeated the test twice and it was normal both times.
Neurosurgery and neurology were consulted to be sure that the shunt and seizures were not to blame. Both of these teams feel confident that this is not the case. An EEG was performed and the results were pretty much the same as the last one over a year ago. He's seemed to have a returning of some reflux symptoms, so they tested his stomach ph, and sure enough it was very acidic, so they doubled his dose of Nexium. Severe reflux can actually cause all the symptoms he's been having, so I'm praying that this is our answer.
In the last week the only food he's had is about 24 hours of continuous half strength formula. Some days he even had a hard time keeping down the Pedialyte. Our dietitian has increased his calories again, and he was started on feeds at 15 ml an hour a couple hours ago. He's thrown up twice since, but also twice this morning, so I don't think it is related to feeds. His vomiting during this whole illness has been random, not correlating with feeding, so I do feel confident that it is not the diet or an intolerance to the formula.
He's comfy and sleeping right now. We may be able to go home tomorrow, depending on how he tolerates the feeds, and if he's not having pain. Please pray with us that the new dose of Nexium is the answer we've been looking for. I want to take him out to play in the pool, and go for walks, to the park, church, and have fun with him. I want him to feel good again. Life may never be "normal" for us, only in the sense that we are not like everyone else, but it can still be wonderful. That's what I want for him. Wonderful.
Neurosurgery and neurology were consulted to be sure that the shunt and seizures were not to blame. Both of these teams feel confident that this is not the case. An EEG was performed and the results were pretty much the same as the last one over a year ago. He's seemed to have a returning of some reflux symptoms, so they tested his stomach ph, and sure enough it was very acidic, so they doubled his dose of Nexium. Severe reflux can actually cause all the symptoms he's been having, so I'm praying that this is our answer.
In the last week the only food he's had is about 24 hours of continuous half strength formula. Some days he even had a hard time keeping down the Pedialyte. Our dietitian has increased his calories again, and he was started on feeds at 15 ml an hour a couple hours ago. He's thrown up twice since, but also twice this morning, so I don't think it is related to feeds. His vomiting during this whole illness has been random, not correlating with feeding, so I do feel confident that it is not the diet or an intolerance to the formula.
He's comfy and sleeping right now. We may be able to go home tomorrow, depending on how he tolerates the feeds, and if he's not having pain. Please pray with us that the new dose of Nexium is the answer we've been looking for. I want to take him out to play in the pool, and go for walks, to the park, church, and have fun with him. I want him to feel good again. Life may never be "normal" for us, only in the sense that we are not like everyone else, but it can still be wonderful. That's what I want for him. Wonderful.
Tuesday, July 2, 2013
Mystery Symptoms
For the past couple weeks, Levi has had a return of noisy breathing that escalated into difficulty breathing, as well as vomiting old blood and persistent low grade fever up to 100.2, and other lesser symptoms. So we saw the pediatrician, ENT, and had a couple visits to the ER, as updated in my previous post. The Sunday before last we took Levi for an overnight sleep study. It wasn't bad except he wasn't allowed to sleep on his stomach, his preferred position. It took a couple hours for him to fall into a good sleep, but he slept for a continuous five hours. It will take a few weeks to receive the results.
Monday morning on the way home from the sleep study, he vomited old brown blood, so I called the GI doctor. He assumed that Levi had a virus and admitted us for IV Nexium to help settle his tummy and IV fluids. During this time, he had breathing treatments, which helped for a couple days, but did not completely clear the breathing. We stopped his feeds for a couple days, then increased them slowly until we were at our normal home rate. On Friday we came home better, but his breathing was still noisy and a bit labored.
Saturday morning he began having difficulty again, and we wondered if maybe he was having allergies to something in the air, or in the house. Ever on the quest for answers, I looked back at the blog and realized that the first symptoms appeared within 24-48 hours of starting Neurontin. I looked up side effects and sure enough vomiting blood, fever, and difficulty breathing were listed, and can even be a sign of an allergic reaction to the drug. I stopped giving him the morning dose, and am waiting to hear from the neurologist to see how long I have to continue his evening dose. This is also a seizure med, and even though that is not what he's taking it for, it cannot just be stopped all at once, or it could cause seizures. My plan is to take him off Neurontin and see if these symptoms clear up, and also what his overall mood is. I want to know if he is having a reaction, but also if it has actually helped him, or if he was just getting better anyway. This morning he vomited again with "coffee grounds" in it, which is old blood. I'm hoping this does the trick, and all these issues go away.
Thanks so much for your continued prayers!
Monday morning on the way home from the sleep study, he vomited old brown blood, so I called the GI doctor. He assumed that Levi had a virus and admitted us for IV Nexium to help settle his tummy and IV fluids. During this time, he had breathing treatments, which helped for a couple days, but did not completely clear the breathing. We stopped his feeds for a couple days, then increased them slowly until we were at our normal home rate. On Friday we came home better, but his breathing was still noisy and a bit labored.
Saturday morning he began having difficulty again, and we wondered if maybe he was having allergies to something in the air, or in the house. Ever on the quest for answers, I looked back at the blog and realized that the first symptoms appeared within 24-48 hours of starting Neurontin. I looked up side effects and sure enough vomiting blood, fever, and difficulty breathing were listed, and can even be a sign of an allergic reaction to the drug. I stopped giving him the morning dose, and am waiting to hear from the neurologist to see how long I have to continue his evening dose. This is also a seizure med, and even though that is not what he's taking it for, it cannot just be stopped all at once, or it could cause seizures. My plan is to take him off Neurontin and see if these symptoms clear up, and also what his overall mood is. I want to know if he is having a reaction, but also if it has actually helped him, or if he was just getting better anyway. This morning he vomited again with "coffee grounds" in it, which is old blood. I'm hoping this does the trick, and all these issues go away.
Thanks so much for your continued prayers!
Sleep Study
Snuggling :)
Looking up!
Thursday, June 20, 2013
ER Update
Tuesday we went to the ENT clinic for breathing issues, but when they sprayed a decongestant/numbing solution in his nose he immediately filled with phlegm, couldn't breathe, and his oxygen saturation dropped drastically, so they put him on oxygen and took him to the ER. A chest x-ray was normal, he received a breathing treatment, and we were told to return to the ENT clinic the next day.
Wednesday morning Levi woke up screaming. I was shocked to find that his diaper was completely full of stool. I didn't think this could happen with a colostomy. He threw up just after I changed him, and the vomit contained "coffee grounds", which is old blood. He hasn't done this since the colostomy was placed two months ago. So off we went to the ER. The vomit tested positive for blood. An x-ray of his belly was normal. The surgery team said that having a bowel movement was not uncommon because they don't cleanse the colon when they perform the colostomy. The stool was leftover from before the surgery. The bloody vomit may have been caused by reflux, but he's on Nexium, so it's doubtful. It may just be a virus.
In the ENT clinic, the doctor put a scope down his nose. He said the adenoids and tonsils are slightly larger than normal, but not enough that he thought it would cause problems. He prescribed two nasal sprays, one containing steroids, and will schedule him for a sleep study within the next week, I think to rule out sleep apnea. Again, hopefully this was all just caused by a virus. The nasal spray immediately made a difference in his breathing, and he was much more comfortable. He's still gaggy, but I'm hoping he feels better today. Thank you to everyone who has been praying for him!
Wednesday morning Levi woke up screaming. I was shocked to find that his diaper was completely full of stool. I didn't think this could happen with a colostomy. He threw up just after I changed him, and the vomit contained "coffee grounds", which is old blood. He hasn't done this since the colostomy was placed two months ago. So off we went to the ER. The vomit tested positive for blood. An x-ray of his belly was normal. The surgery team said that having a bowel movement was not uncommon because they don't cleanse the colon when they perform the colostomy. The stool was leftover from before the surgery. The bloody vomit may have been caused by reflux, but he's on Nexium, so it's doubtful. It may just be a virus.
In the ENT clinic, the doctor put a scope down his nose. He said the adenoids and tonsils are slightly larger than normal, but not enough that he thought it would cause problems. He prescribed two nasal sprays, one containing steroids, and will schedule him for a sleep study within the next week, I think to rule out sleep apnea. Again, hopefully this was all just caused by a virus. The nasal spray immediately made a difference in his breathing, and he was much more comfortable. He's still gaggy, but I'm hoping he feels better today. Thank you to everyone who has been praying for him!
Sunday, June 9, 2013
Bluegrass Fun
Yesterday was a wonderful, activity packed day! In the morning Patrick, Levi and I went to yard sales with Misty, Raven, and Kylynne. This is one of my favorite things to do. The weather was perfect, and even though we didn't pick up any amazing deals, we had a great time!
We spent a lovely afternoon and evening with Misty and Mom at the Bluegrass Festival to benefit the Senior Services Plus Meals on Wheels program. It was supposed to be held down at the amphitheater on the riverfront, but of course with the flooding that was impossible, so it was held in the Mall parking lot. The weather continued to be beautiful! After a long nap, Levi was happy too. He enjoys being outside and loves music, so the combination was terrific for him. Marty Raybon (from the country music group Shenendoah) spoke to Levi from stage, calling him "sugar britches". The Harman family always puts on an amazing show, and last night was no different. They were definitely in top form, even though their dad just had a heart attack and couldn't perform with them. He's in the hospital awaiting, I believe, more testing and a surgery. Please join us in praying for complete healing for Mike Harman!
Here are a few pics of the day.
We spent a lovely afternoon and evening with Misty and Mom at the Bluegrass Festival to benefit the Senior Services Plus Meals on Wheels program. It was supposed to be held down at the amphitheater on the riverfront, but of course with the flooding that was impossible, so it was held in the Mall parking lot. The weather continued to be beautiful! After a long nap, Levi was happy too. He enjoys being outside and loves music, so the combination was terrific for him. Marty Raybon (from the country music group Shenendoah) spoke to Levi from stage, calling him "sugar britches". The Harman family always puts on an amazing show, and last night was no different. They were definitely in top form, even though their dad just had a heart attack and couldn't perform with them. He's in the hospital awaiting, I believe, more testing and a surgery. Please join us in praying for complete healing for Mike Harman!
Here are a few pics of the day.
Harman Family
Chillin!
Marty Raybon
Aunt Misty
Friday, June 7, 2013
First Dose of Neurontin (Gabapentin)
Today was Levi's first dose of Neurontin. He is on 300 mg in the morning for five days, then 300 mg twice a day thereafter. Almost immediately he fell asleep. He woke up about an hour later, and I was able to give him a tub bath, change his colostomy bag, and get him dressed without the slightest fussing. Usually he screams at the top of his lungs the entire time. We've just finished, and he's sleeping again. I'm glad he's so relaxed and feeling good, but I do hope this extreme sedative effect goes away once he gets used to it. Here are a few pics I took after his bath.
Many Changes and Feeling Better
Levi is finally starting to feel better again! The last few mornings he woke up with smiles. He's enjoying all the activities he liked before the colostomy surgery -- bouncing, playing with his legs and arms, watching TV, sitting outside -- which was nearly two months ago now. So it's been two months since he's been happy, and ten months since the feeding tube surgery when all the horrible GI issues (vomiting, unable to have bowel movements, etc) began. I am so glad he doesn't have any surgeries coming up!
The motility specialist from Cincinnati recommended trying Neurontin, and after our GI and neurologist conferred, they decided to prescribe it. He should be starting it today or tomorrow. I'm looking forward to it. Even though he's feeling better, he still has episodes of pain, and we are hoping that since the motility issues are neurological, this med will help him to feel better. There's just no real way to tell if he is feeling pain from this or not, but I believe he is.
He is also having more seizures. They are still only lasting 1-3 seconds, and since he's cutting so many teeth I wasn't too concerned, considering pain of any kind can lower the threshold for seizures. I was reading on the ketogenic website forum, and learned that teething can actually lower the ketones. He has always maintained large ketones so I rarely check, but sure enough he has had low to moderate ketones. I spoke with the dietitian and we decided to raise his ratio to 4:1, and also raise his calories. He hasn't vomited in two months, but still was not putting on much weight. He is at 0 percentile, but on the bright side his BMI is 9, and it was in the negative before. He's been tolerating the new recipe very well, and we wonder if the extra nutrition is part of the reason for his happiness. Already we are noticing that his cheeks, arms, and legs are getting pudgier. He's so much more solid now, too. Yesterday he was holding his head and trunk remarkably well!
The last time I changed his colostomy bag I found that the stoma had shrunk to about half the size it was when the bag was placed. The exposed skin had an angry rash and had completely broken down over a large portion. It looked so painful I wanted to cry for him! The fix for this a product called stoma powder, which is sprinkled over the raw area, then patted with a wet spongy stoma care wipe that creates a seal over the powder. I caked on three layers before placing a new bag, and he felt better almost immediately. I'll be changing it again tonight and hope to see that it's completely healed.
The motility specialist from Cincinnati recommended trying Neurontin, and after our GI and neurologist conferred, they decided to prescribe it. He should be starting it today or tomorrow. I'm looking forward to it. Even though he's feeling better, he still has episodes of pain, and we are hoping that since the motility issues are neurological, this med will help him to feel better. There's just no real way to tell if he is feeling pain from this or not, but I believe he is.
He is also having more seizures. They are still only lasting 1-3 seconds, and since he's cutting so many teeth I wasn't too concerned, considering pain of any kind can lower the threshold for seizures. I was reading on the ketogenic website forum, and learned that teething can actually lower the ketones. He has always maintained large ketones so I rarely check, but sure enough he has had low to moderate ketones. I spoke with the dietitian and we decided to raise his ratio to 4:1, and also raise his calories. He hasn't vomited in two months, but still was not putting on much weight. He is at 0 percentile, but on the bright side his BMI is 9, and it was in the negative before. He's been tolerating the new recipe very well, and we wonder if the extra nutrition is part of the reason for his happiness. Already we are noticing that his cheeks, arms, and legs are getting pudgier. He's so much more solid now, too. Yesterday he was holding his head and trunk remarkably well!
The last time I changed his colostomy bag I found that the stoma had shrunk to about half the size it was when the bag was placed. The exposed skin had an angry rash and had completely broken down over a large portion. It looked so painful I wanted to cry for him! The fix for this a product called stoma powder, which is sprinkled over the raw area, then patted with a wet spongy stoma care wipe that creates a seal over the powder. I caked on three layers before placing a new bag, and he felt better almost immediately. I'll be changing it again tonight and hope to see that it's completely healed.
Levi's sweet happy smiles!
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