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?! ;)
- Posted using BlogPress from my iPad
Thursday, January 3, 2013
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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