Thursday night was a full moon. We could tell at our house. X got a nasty cold that his older brother had. This meant 2 hours of sleep with a lot of nausea, crying, screaming and PTSD like reactions to his sore throat. Ever since he had the ng tube ( feeding tube that went down his nose) he panics if his nose or throat hurts. It's horrible (we are trying to find someone to help him with this, but that is proving more difficult than it should).
On Thursday night the hubby was hit by drunk driver. He is okay, but the car is totaled ( and this was the first night of C's vacation) This driver stopped in front of a bar, missed his parking spot, stopped, put his van in reverse and hit the gas. C was stopped and honked his horn and tried to back up, but the guy didn't hear him. He hit C so hard both air bags went off. This person was extremely drunk and his friend who was with him was worse off. C said it was like something out of Cops. The friend of the driver was asking C and a witness if they had any weed. Then the driver told his friend he had a lot of DUIs and said he was going to wait for the police in the bar. Well, he disappeared and his friend told the police he was the driver. It's a mess. We don't know if the driver was insured, so we may be responsible for our deductible. The police looked for the driver, but couldn't find him. They impounded his vehicle, so hopefully he goes to claim it and they can get him then. Ugh. We do have a nice rental car our insurance is paying for. The boys have been enjoying that.
X is starting to tolerate his feeds today. They are small, but he isn't nauseas and isn't throwing up. He also has energy and is not dehydrated, so this is all good news. This is the first big illness (for him) with just the gtube, so it was scary, but he made it and we stayed out of the hospital, so I think we are good.
Both boys have been sick since Tuesday night and we have been stuck at home this whole time. We are all going crazy. I work tomorrow, so I will get out of the house then. Yay!
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Sunday, August 25, 2013
Wednesday, August 21, 2013
The Heat is On
Warm weather has finally arrived!! I love the heat and humidity and I'm excited that it finally feels like summer!! X's GI system does not love this heat and humidity. We've had to decrease the amount of his boluses otherwise he throws up. He is getting 5-6 boluses a day totaling 1310ml (and 1310 calories). It's a lot of hooking up and unhooking, but it works.
We also had to increase his total calories by 60ml, which doesn't seem like much, but his tummy is very sensitive to increases in volume, so it's been a little challenging. X hasn't gained any weight in 2 months, so that is why we had to add the calories. Ugh. It's frustrating.
When he first had the feeding tube that went through his nose 2 years ago, he was eating 500 calories and getting 1200-1300 calories with the tube. Now he maybe eats 50-100 calories a day. I could cry when I think about that. I feel like we've gone backwards in oral eating. He does eat a larger variety of food now. He just takes one or two bites.
The exciting news with X is that when he had his ear infection and was on amoxicillin, he was still able to tolerate his feeds and didn't throw up. That is a miracle for him! In the past he would retch and retch and lose weight. Seeing him do so well was encouraging.
I feel like I am getting impatient with this feeding tube. I just want him to be able to get enough calories orally and be done with the tube. I am grateful that he is healthy and strong and thriving though. And that wouldn't be happening without the tube. I have a love/hate relationship with that thing.
N has a horrible cold. Like the ones you get in the middle of winter. He's needed his nebulizer (which he hasn't used in almost a year) and is miserable. Praying his ear doesn't get infected again and make the Holbein his eardrum larger. Last night was a long night. Today is filled with nebs and bolus feedings. X is very concerned about his big brother and is trying to make him feel better. It's sweet to see. Those boys do love each other (and they have moments where they can't stand each other----they are brothers).
N is napping and X and I are going to get a nap in as well. Enjoy this warm weather!
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We also had to increase his total calories by 60ml, which doesn't seem like much, but his tummy is very sensitive to increases in volume, so it's been a little challenging. X hasn't gained any weight in 2 months, so that is why we had to add the calories. Ugh. It's frustrating.
When he first had the feeding tube that went through his nose 2 years ago, he was eating 500 calories and getting 1200-1300 calories with the tube. Now he maybe eats 50-100 calories a day. I could cry when I think about that. I feel like we've gone backwards in oral eating. He does eat a larger variety of food now. He just takes one or two bites.
The exciting news with X is that when he had his ear infection and was on amoxicillin, he was still able to tolerate his feeds and didn't throw up. That is a miracle for him! In the past he would retch and retch and lose weight. Seeing him do so well was encouraging.
I feel like I am getting impatient with this feeding tube. I just want him to be able to get enough calories orally and be done with the tube. I am grateful that he is healthy and strong and thriving though. And that wouldn't be happening without the tube. I have a love/hate relationship with that thing.
N has a horrible cold. Like the ones you get in the middle of winter. He's needed his nebulizer (which he hasn't used in almost a year) and is miserable. Praying his ear doesn't get infected again and make the Holbein his eardrum larger. Last night was a long night. Today is filled with nebs and bolus feedings. X is very concerned about his big brother and is trying to make him feel better. It's sweet to see. Those boys do love each other (and they have moments where they can't stand each other----they are brothers).
N is napping and X and I are going to get a nap in as well. Enjoy this warm weather!
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Sunday, August 11, 2013
The Joys of Miralax
X: (in the bathroom) Mom! I didn't go potty and I didn't poop, but you need to wipe my bottom!
X: N! You need to see my poop!
N: (shaking his head) That's not good.
X is on a half cap of Miralax a day. I can't stand that stuff. X has nausea and vomiting that is related to how often and how much he poops. The Miralax works too well with him and also makes him nauseated. Either way he doesn't eat. It's a frustrating cycle. Without the Miralax he eventually gets really backed up. With the Miralax he does better for a couple days, but then ha has other problems. Personally, I feel a large part (if not all) of the reason he won't eat has something to do with his colon. He was going to have a test done with the lower part of his colon, but part of the equipment they use has latex, so that was scrapped. We have a follow up the first week in Sept. hopefully we can come up with a new plan. I am also starting to research natural ways to help keep things moving along. Until I find something else, I hope we can find a balance with the Miralax.
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X: N! You need to see my poop!
N: (shaking his head) That's not good.
X is on a half cap of Miralax a day. I can't stand that stuff. X has nausea and vomiting that is related to how often and how much he poops. The Miralax works too well with him and also makes him nauseated. Either way he doesn't eat. It's a frustrating cycle. Without the Miralax he eventually gets really backed up. With the Miralax he does better for a couple days, but then ha has other problems. Personally, I feel a large part (if not all) of the reason he won't eat has something to do with his colon. He was going to have a test done with the lower part of his colon, but part of the equipment they use has latex, so that was scrapped. We have a follow up the first week in Sept. hopefully we can come up with a new plan. I am also starting to research natural ways to help keep things moving along. Until I find something else, I hope we can find a balance with the Miralax.
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Sunday, August 4, 2013
Forward
On Thursday, August 1, X went from a GJ feeding tube Mic-Key button to a G feeding tube Mic-Key button. We are moving in the right direction and this is a HUGE step for him!!
This means that X has been able to tolerate all his feedings into his stomach. We haven't had to use the J tube (the one that goes into his small intestines) in months. He also had an ear infection and cold (last month) and didn't vomit his feeding, did not need pedialyte and tolerated the amoxicillin. This is miraculous!!! He has never done that while ill since getting this feeding tube almost 2 years ago.
He said his tummy feels better since getting the switch. I think having the J tube looped around his stomach and snaked through his intestines was very uncomfortable for him. Now we pray things continue to go well. I would hate for him to have to get the J tube again.
The other beautiful thing about this new button, is that it only has one port and it doesn't leak!! When we hook and unhook his feeding tube now, nothing comes out of his button. He is extremely happy about that, as am I. He seems more relaxed in general.
The day of his button change was amazing. This was the first time we had it changed out in our town. Usually we head down to the Cities. When X found out that morning what was going to happen he was a wreck. Poor guy. His last change out was extremely painful (in March) and he hadn't forgotten that. I will say that X was able to calm himself (which was a miracle) with help and when we got to the hospital, he was doing okay. Scared, but able to talk about it without screaming.
At the hospital, they hadn't gotten the order for the new button, or had lost it and they wanted us to come back another day. Poor X, there was no way he would have been able to wait, so I gave them 3 different numbers to try at the hospital in the Cities. Thankfully they were able to get a hold of someone.
I have to say I am so proud of X. He was terrified, but was able to do deep breathing with me ( that was a first) and asked for a washcloth to cover his face and laid on the table quietly. The staff at our hospital was amazing and they used a lidocaine gel to numb up the area. The procedure took less than 5 minutes and X only said "ow" when they took out the first button, but he was okay for the rest of it.
When they were done, he got off the table and said (enthusiastically), "that didn't hurt like the other doctor I go to!!!" He was so excited. The nurses kept fawning over him because he did so well, and he worked the room after everything was done. My sweetie.
He even said he wants to go there for the next change.(usually after a change, he says he wants Jesus to change it when he gets to heaven) And they said they could change it for us (I will have to check with insurance about that). I hope they can, otherwise we will have to change it. That is not an option for me. At. All. I could do it in an emergency situation, but not just because it was time. I would pass out.
So, I know it's been forever since I have blogged, but things are going well. We are doing 4-5 feedings a day that last 30 minutes each and are 2 hours apart. (he is not getting any tube feeding at night anymore) He is getting 1250 calories a day and supposed to be eating 100-150 calories. We will probably be upping the calories he gets on the feeding tube because he isn't eating the 100-150 calories. I'm not sure how we are going to fit another feeding in, but we will.
X is as energetic as ever. He is doing great and we have had a busy and fun summer (if you can call it that) so far. I'll have to blog about our camping. That
was quite the adventure!
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This means that X has been able to tolerate all his feedings into his stomach. We haven't had to use the J tube (the one that goes into his small intestines) in months. He also had an ear infection and cold (last month) and didn't vomit his feeding, did not need pedialyte and tolerated the amoxicillin. This is miraculous!!! He has never done that while ill since getting this feeding tube almost 2 years ago.
He said his tummy feels better since getting the switch. I think having the J tube looped around his stomach and snaked through his intestines was very uncomfortable for him. Now we pray things continue to go well. I would hate for him to have to get the J tube again.
The other beautiful thing about this new button, is that it only has one port and it doesn't leak!! When we hook and unhook his feeding tube now, nothing comes out of his button. He is extremely happy about that, as am I. He seems more relaxed in general.
The day of his button change was amazing. This was the first time we had it changed out in our town. Usually we head down to the Cities. When X found out that morning what was going to happen he was a wreck. Poor guy. His last change out was extremely painful (in March) and he hadn't forgotten that. I will say that X was able to calm himself (which was a miracle) with help and when we got to the hospital, he was doing okay. Scared, but able to talk about it without screaming.
At the hospital, they hadn't gotten the order for the new button, or had lost it and they wanted us to come back another day. Poor X, there was no way he would have been able to wait, so I gave them 3 different numbers to try at the hospital in the Cities. Thankfully they were able to get a hold of someone.
I have to say I am so proud of X. He was terrified, but was able to do deep breathing with me ( that was a first) and asked for a washcloth to cover his face and laid on the table quietly. The staff at our hospital was amazing and they used a lidocaine gel to numb up the area. The procedure took less than 5 minutes and X only said "ow" when they took out the first button, but he was okay for the rest of it.
When they were done, he got off the table and said (enthusiastically), "that didn't hurt like the other doctor I go to!!!" He was so excited. The nurses kept fawning over him because he did so well, and he worked the room after everything was done. My sweetie.
He even said he wants to go there for the next change.(usually after a change, he says he wants Jesus to change it when he gets to heaven) And they said they could change it for us (I will have to check with insurance about that). I hope they can, otherwise we will have to change it. That is not an option for me. At. All. I could do it in an emergency situation, but not just because it was time. I would pass out.
So, I know it's been forever since I have blogged, but things are going well. We are doing 4-5 feedings a day that last 30 minutes each and are 2 hours apart. (he is not getting any tube feeding at night anymore) He is getting 1250 calories a day and supposed to be eating 100-150 calories. We will probably be upping the calories he gets on the feeding tube because he isn't eating the 100-150 calories. I'm not sure how we are going to fit another feeding in, but we will.
X is as energetic as ever. He is doing great and we have had a busy and fun summer (if you can call it that) so far. I'll have to blog about our camping. That
was quite the adventure!
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Thursday, January 3, 2013
Emotions
Yesterday X went the entire day without feeling nauseas. The. entire. day. He even mentioned it at supper. That's how big a deal that is. The puke bucket sat, untouched for the entire day. What a gift.
X continues to struggle with reminders of procedures, mostly I.V.'s and blood draws, as well as the ng tube.
Last week we were stringing popcorn for our re-purposes Christmas tree.
That is my one re-purposed item I have. We place the tree in a bank of snow outside our window near the bird feeders, and make edible ornaments and decorations for the bird throughout the winter.
While stringing the popcorn, X poke his finger with the needle, (thankfully not hard enough to draw blood), he was okay with it initially, however after a few seconds he had a panicked look on his face and began to cry "it feels like a poke!!". Oh, X. It took a good 15 minutes to help calm him down. It's heartbreaking. I can see the change in his eyes and I know he's remembering stuff. I am going to call the Child Life Specialist next week. He isn't as panicked as he used to be with this kind of stuff, but it's still there.
The next day he threw up, and it was a bad throw up and his throat and nose hurt, which caused him to scream at the top of his lungs in a high pitched voice for 10 minutes. Whenever his nose or throat hurts he panics. This is from the ng tube. The tube irritated and hurt his nose and throat more than we knew. That is my biggest regret. That we did the ng tube first and used it for 3 months. 3 months. Initially I wants to do a g-tube, but we were told it was invasive and not a good choice for short term use (he was supposed to be eating within 3 months). I still struggle with guilt over that. I know we made what we thought was the best decision at the time and we used the information that was given to us and what we researched, but I feel bad. Those 3 months were not fun for him.
He keeps telling me that he does not want his "button" to come out when he is able to eat enough on his own. He is scared he will have a hole in his stomach and the stuffing his stomach will come out. He has been telling me this for almost a year. I wish he didn't think about things so much.
X is going to need his button changed soon. He has grown so much and gained so much weight since October, the button is almost to the point of being too tight. He has been complaining of it hurting a little during the cares of it. Oh, I don't want to have to do that to him. I was hoping we could wait until April. This time we may have to give him the Versed. We'll see. He didn't complain much of the pain during the procedure last time, but he talked of it hurting a lot days later, so he is now afraid to have it changed again, (I haven't mentioned changing it, he brings these things up on his own). The procedure takes literally, maybe 5 minutes, but the Versed works for a couple hours. He wasn't in pain after the procedure and was joking and laughing with the staff as soon as he was off the table. It's a tough decision.
I know X is fortunate and we have so much more to be thankful for than to complain about. I truly know that deep in my heart. Yet, I still struggle seeing him affected (effected? I get those mixed up all the time) by decisions we made in August of 2011 and it's heartbreaking as X's mother to see him suffer. I am just trusting that God is with X, always, and that these effects will disappear, and that He knows how all of this will play out, and that He is not condemning me for the decision of the ng tube and He will be present during the next change of the button.
I hope this doesn't sound all "doom and gloom", because that isn't how it is over here. December was definitely a harder month for me, for whatever reason, but we are definitely celebrating the victories with X's eating and yesterday's absence of any nausea, as well as X's growth and weight gain. I wanted this blog to be a place to record our life with the tube, and some moments aren't all that great, but we have more moments of joy than of sadness.
Did I mention X was nausea-free yesterday?! ;)
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X continues to struggle with reminders of procedures, mostly I.V.'s and blood draws, as well as the ng tube.
Last week we were stringing popcorn for our re-purposes Christmas tree.
That is my one re-purposed item I have. We place the tree in a bank of snow outside our window near the bird feeders, and make edible ornaments and decorations for the bird throughout the winter.
While stringing the popcorn, X poke his finger with the needle, (thankfully not hard enough to draw blood), he was okay with it initially, however after a few seconds he had a panicked look on his face and began to cry "it feels like a poke!!". Oh, X. It took a good 15 minutes to help calm him down. It's heartbreaking. I can see the change in his eyes and I know he's remembering stuff. I am going to call the Child Life Specialist next week. He isn't as panicked as he used to be with this kind of stuff, but it's still there.
The next day he threw up, and it was a bad throw up and his throat and nose hurt, which caused him to scream at the top of his lungs in a high pitched voice for 10 minutes. Whenever his nose or throat hurts he panics. This is from the ng tube. The tube irritated and hurt his nose and throat more than we knew. That is my biggest regret. That we did the ng tube first and used it for 3 months. 3 months. Initially I wants to do a g-tube, but we were told it was invasive and not a good choice for short term use (he was supposed to be eating within 3 months). I still struggle with guilt over that. I know we made what we thought was the best decision at the time and we used the information that was given to us and what we researched, but I feel bad. Those 3 months were not fun for him.
He keeps telling me that he does not want his "button" to come out when he is able to eat enough on his own. He is scared he will have a hole in his stomach and the stuffing his stomach will come out. He has been telling me this for almost a year. I wish he didn't think about things so much.
X is going to need his button changed soon. He has grown so much and gained so much weight since October, the button is almost to the point of being too tight. He has been complaining of it hurting a little during the cares of it. Oh, I don't want to have to do that to him. I was hoping we could wait until April. This time we may have to give him the Versed. We'll see. He didn't complain much of the pain during the procedure last time, but he talked of it hurting a lot days later, so he is now afraid to have it changed again, (I haven't mentioned changing it, he brings these things up on his own). The procedure takes literally, maybe 5 minutes, but the Versed works for a couple hours. He wasn't in pain after the procedure and was joking and laughing with the staff as soon as he was off the table. It's a tough decision.
I know X is fortunate and we have so much more to be thankful for than to complain about. I truly know that deep in my heart. Yet, I still struggle seeing him affected (effected? I get those mixed up all the time) by decisions we made in August of 2011 and it's heartbreaking as X's mother to see him suffer. I am just trusting that God is with X, always, and that these effects will disappear, and that He knows how all of this will play out, and that He is not condemning me for the decision of the ng tube and He will be present during the next change of the button.
I hope this doesn't sound all "doom and gloom", because that isn't how it is over here. December was definitely a harder month for me, for whatever reason, but we are definitely celebrating the victories with X's eating and yesterday's absence of any nausea, as well as X's growth and weight gain. I wanted this blog to be a place to record our life with the tube, and some moments aren't all that great, but we have more moments of joy than of sadness.
Did I mention X was nausea-free yesterday?! ;)
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Wednesday, January 2, 2013
New Year
Happy New Year!
I just realized its been a while since I've blogged anything. I feel like I disappeared for most of the month of December. One, because we were busy with holiday things and two, I don't know really. December was a little hard.
I'll try to recap December without making it too long. The boys are watching Kung Fu Magoo ( their new favorite movie) and I am snuggled in our rocking chair with a cozy blanket, so this is a perfect opportunity.
X was pretty nauseas all last month. There was no rhyme or reason to his nausea and the puke bucket became his security blanket. He didn't throw up much, for which I am extremely grateful, but he felt pretty nauseas at least once a day. Sometimes at the start of a bolus, sometimes after 180 ml (that part was predictable), or at the end of a bolus, or 30 minutes after a bolus ended. We never knew when he would be nauseas though. That was the hardest part, not being able to predict when he would feel ill, because it meant we couldn't help prevent it. It was very frustrating for X as well.
Yesterday was good and so far today things have been good. I think all the nausea was from the cold he had at Thanksgiving. It's taken his system this long to recover.
He has been eating pretty good though. Food does not make him nauseated. Never has. We can usually count on him eating a decent supper, which brings tears to my eyes. He has started small amounts at lunch as well. Praying this trend continues.
X had a food trial for his peanut allergy in December. I am so proud of him. He was scared, but he did complete some of it. He was extremely brave and continues to amaze me. He was afraid he would throw up or need the Epi-pen. We'll try again in the summer when he will be healthier. At the point of the food trial he was still throwing up once a day. He was able to let me put peanut butter on his skin, his lip, and tongue, (just dabs from a q-tip). When we return in the summer we will pick up where we left off, which is nice. We learned that he can be around peanut butter, but we still don't know if he can eat it. That is a relief knowing that.
The boys and I made Advent ornaments. We used Truth in the Tinsel, an e-book, and made an ornament a day to hang on our garland ( or 5 in a day if we were behind)
I also had an Advent calendar, read a Christmas book a day, and used Stampin' Up Christmas Countdown boxes. Next year I will not have so many things to do. It became a little stressful. And, in case I have given false pictures of pure harmony the entire month of December, there were plenty of crabby moments while doing all of this ;).
This Christmas was the most stress free Christmas we have had in several years. Oh, how I am grateful for that. That in itself was an incredible gift. Craig's brother came over the 23rd and stayed until the 26th. We went to my parents' on Christmas Eve and celebrated there. On Christmas Day the boys slept in until 8:45am. That was a glorious gift.
N was very excited to receive a pocket knife for Christmas. X really wanted his big brother to have one.
Uncle Randy
Jack the Dog enjoyed shredding the wrapping paper.
He was excited to receive a bop bag.
I've been taking the boys ice skating. We have 2 hockey rinks and one regular rink a couple blocks from our house. We haven't done much winter outdoor activities the last couple winters, so this year I am determined to spend as much time outside as possible. These two need to burn off energy.
The first day skating was hilarious. X couldn't stand on the ice without falling and N had forgotten how to skate. The second time we went, X was able to "skate" without holding onto my hand or a chair. N did much better as well. I'm hoping to do that several days a week.
December was a full month. Right now X is doing well and we are praying things continue to improve.
I just realized its been a while since I've blogged anything. I feel like I disappeared for most of the month of December. One, because we were busy with holiday things and two, I don't know really. December was a little hard.
I'll try to recap December without making it too long. The boys are watching Kung Fu Magoo ( their new favorite movie) and I am snuggled in our rocking chair with a cozy blanket, so this is a perfect opportunity.
X was pretty nauseas all last month. There was no rhyme or reason to his nausea and the puke bucket became his security blanket. He didn't throw up much, for which I am extremely grateful, but he felt pretty nauseas at least once a day. Sometimes at the start of a bolus, sometimes after 180 ml (that part was predictable), or at the end of a bolus, or 30 minutes after a bolus ended. We never knew when he would be nauseas though. That was the hardest part, not being able to predict when he would feel ill, because it meant we couldn't help prevent it. It was very frustrating for X as well.
Yesterday was good and so far today things have been good. I think all the nausea was from the cold he had at Thanksgiving. It's taken his system this long to recover.
He has been eating pretty good though. Food does not make him nauseated. Never has. We can usually count on him eating a decent supper, which brings tears to my eyes. He has started small amounts at lunch as well. Praying this trend continues.
X had a food trial for his peanut allergy in December. I am so proud of him. He was scared, but he did complete some of it. He was extremely brave and continues to amaze me. He was afraid he would throw up or need the Epi-pen. We'll try again in the summer when he will be healthier. At the point of the food trial he was still throwing up once a day. He was able to let me put peanut butter on his skin, his lip, and tongue, (just dabs from a q-tip). When we return in the summer we will pick up where we left off, which is nice. We learned that he can be around peanut butter, but we still don't know if he can eat it. That is a relief knowing that.
The boys and I made Advent ornaments. We used Truth in the Tinsel, an e-book, and made an ornament a day to hang on our garland ( or 5 in a day if we were behind)
I also had an Advent calendar, read a Christmas book a day, and used Stampin' Up Christmas Countdown boxes. Next year I will not have so many things to do. It became a little stressful. And, in case I have given false pictures of pure harmony the entire month of December, there were plenty of crabby moments while doing all of this ;).
This Christmas was the most stress free Christmas we have had in several years. Oh, how I am grateful for that. That in itself was an incredible gift. Craig's brother came over the 23rd and stayed until the 26th. We went to my parents' on Christmas Eve and celebrated there. On Christmas Day the boys slept in until 8:45am. That was a glorious gift.
N was very excited to receive a pocket knife for Christmas. X really wanted his big brother to have one.
Uncle Randy
Jack the Dog enjoyed shredding the wrapping paper.
He was excited to receive a bop bag.
I've been taking the boys ice skating. We have 2 hockey rinks and one regular rink a couple blocks from our house. We haven't done much winter outdoor activities the last couple winters, so this year I am determined to spend as much time outside as possible. These two need to burn off energy.
The first day skating was hilarious. X couldn't stand on the ice without falling and N had forgotten how to skate. The second time we went, X was able to "skate" without holding onto my hand or a chair. N did much better as well. I'm hoping to do that several days a week.
December was a full month. Right now X is doing well and we are praying things continue to improve.
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