James' Journal
Well it seems that August 18 was the last update e-mail I sent out. This leaves over 3 months of activity to catch up on. I have tried to keep a journal for James but have fallen behind on this as well. I will continue here by taking pieces from James's journal. Since this journal is written from James' perspective, the "I" would be James.
Tuesday, November 7, 2006
On Wednesday, August 30, 2006 I made yet another visit to the hospital. This time it was actually a scheduled visit. The ugly NG-tube finally came out of my nose and a new G-tube was put in my tummy. This was done by surgery and I had to be put "out" for the surgery. I sure woke up screaming and crying for quite a while. Eventually I settled down and slept and slept. I stayed in the hospital until Saturday. In the hospital I spent most of the time in bed or going for stroller rides. I had lots of morphine, so I slept lots. The last day I was getting up and around a bit more like myself. I would automatically pull up my knees to protect my belly if someone picked me up. In the hospital they slowly worked up my feeds and then let me go home.
I arrived home to vomit at suppertime, a couple days later I vomitted again and my belly was very distended. I became irritable and was sweating lots. Mommy and Daddy decided to slow down my feeds even more. After that I seemed to be better. Because my feeds were slowed down it took about an hour and a quarter to do my large feeds. This left little time for snack feeds. Mommy decided not to give me snack anymore but to see how I did on just my "meal" feeds. . My bowel movements became more normal, more paste like and no more mucas. I did not seem as cranky anymore either. I also slowly began to show a bit more interested in food, picking at things here and there. Overall I was doing pretty good.
My G-tube site took a bit of time to heal. For the first two weeks I was in a lot of pain. About a week after the surgery I developed an infection around the site. The site became red, swollen and there was discharge from it. Mommy called the Surgeon and was told to put polysporin around the site. This seemed to take some of the redness out of it, but I was still not very comfortable. I walked cautiously, I would not go up or down the stairs, and when I was picked up I tensed up and pulled my knees to my belly. Mommy and Daddy picked up like a little baby, always being held under the bum too, but
I still was in a lot of pain. Two weeks after the surgery mommy had to take m
e to the GI doctor, at the same time she stopped in the Surgeons office and was able to see the nurse. The crossbar on my tube was way to tight, she loosened it up a bit and showed mommy how to loosen it if it needed to be done again. She also said to stop using the Polysporin and instead to treat the site with salt water in order to dry out the granulate skin that was trying to grow around the hole. The next day mommy loosened the crossbar a bit more and in a couple days mommy could tell the difference. I was walking better and not so tense when being picked up. Before long I was doing stairs again, sleeping on my tummy, rolling, playing as if nothing was there. There continued to be redness, discharge and bleeding around the site. At the beginning of October it started getting worse and I was becoming more tense when being picked up again, lifting my legs to my belly again. On October 10 mommy seen the Surgeon and he treated the skin around the site with Silvernitrate (burns the skin) and then prescribed an antibiotic to get rid of the infection. that stuff sure works, because when I snuck my hand under my shirt, a bit of skin burned on my finger tips. In a couple days it was looking really nice, no more discharge or bleeding. Mommy also requested to have a Mickey tube put in. Right now I have a 10 inches of tube hanging from my belly. Mommy tapes it to my tummy so that it doesn’t hang out of my shirt and get caught, and to keep it more stable and not swinging around all the time. My tummy of course gets red and irritated from always having tape on it. On November 29 they hope to put in a Mickey (which is a flat cap).
My G-tube looked wonderful while I was on antibiotics, no more discharge, no more bleeding or granulation skin, no more redness. A few days after the antibiotics were done the discharge came back. The last few weeks it’s been getting worse. My tummy gets red all around the site, more discharge, little bit of bleeding and there seems to be some granulation skin coming again. On Tuesday I went to see the Genetic Doctor and mommy had a chance to talk to the Surgeons nurse again. On that day my site was looking really good and she said it was fine, that it’s just a foreign object my body is fighting. Since then it’s been getting worse and I’ve started to pull my knees up when picked up as well I itch at it because it’s bothering me. Next week I see my Pediatrician, hopefully she can decide if it needs more treatment.
Since I’ve been out of the hospital I’ve had several doctors appointments to keep an eye on me. I’ve also seen GI again on September 15. My GI Doctor said that the biopsy they did during the scope had been sent away and at this point they believe that the colitis is LPI related, likely from overexposure to protein. He would like to do an endoscopy, which is a scope of the esophagus, stomach and larger intestines, from this scope they hope to get a clearer indication of the extent imflammation that I am dealing with and then decide how is best to treat the situation. It was also discussed whether there is a problem with my system absorbing sugar. At this time they do not think this is the case so they are just going to do the scope. The doctor also prescribed some more Canesteen for my yeast infection/rashes on my bum. Yeast infections are common with someone who has colitis and whose system is not functioning properly, it also comes when a person is on antibiotics, since antibiotics can kill the bacteria that fights yeast. I have been on antibiotics often in the last months. At this time they will only treat the symptoms on my bum and are not going to treat it orally, hoping that once my body stabilizes this will settle down. The GI Doctor also prescribe a medication that will help to hold my bile together and reduce the amount of phlegm/mucas in my diapers. Mommy took this prescription to give a try if the mucas gets quite bad again. Mommy has not tried the medication yet as she does not like how it just covers up the symptoms and doesn't treat them. By covering the symptoms mommy says she would not be able to tell how well or not-well I’m doing.
I had been doing well on the slower feeds since I came out of the hospital in September and slowly mommy and daddy started to feed a bit more and speed it up a bit. I was being fed at 200ml/hr and they got to up to 210ml/hr and started to see more mucas, at 215ml/hr it got worse. Instead of giving the medication that the GI Doctor gave me, my mommy decided to first see what would happen if she dropped the speed down to 175ml/hr. Since then my stools have been more paste-like and much less mucas. Although the stools are looking better and there hasn’t been too much mucas (and no blood) my bum still continues to get very red and sore. This past week mommy started using spring water (bottled) to make my formula, instead of the chlorinated ditch water that the city delivers to our tap. She did not see any immediate difference from doing this, but thinks that regardless it would be better not to have so much chlorine water in my system.
Right now everyone is waiting for the endoscopy to be done before any further decisions will be made. I continue to have the dietician come every other week to discuss how I’m doing and help if necessary. The Occupation Therapist only comes once a month right now since I’m mostly on tube feeds and do not eat very much. Every now and then I’ll start picking at food again and then I’ll stop and don’t want anything. Lately I’ve been pretty consistent on not eating much at all. If I do eat something it’s usually nazzi (spiced rice) of which I like to eat the rice one "kernel" at a time. Sometimes I will eat pureed strawberries or I might take a bite of my porridge. I also like to lick salad dressing or ketchup. Recently I’ve decided I like to eat my "cheese" slices and will eat 1/4 to ½ a slice at lunch time. I have no interest in popsicles, "ice cream" (technically frozen nutriwhip), jello or things like that. Mommy gives me three things to choose from at lunch and supper but I seldom touch it, except to play with it. Mommy also bought all kinds of veggie chips, rice crackers/chips/crisps from the health store, but I don’t really like them either. I used to lick the flavouring off them, but now I don’t even do that. I just like to pick them out of the bag and then leave them on my tray or give them to someone else to eat. Mommy tried to do baking for me but I have absolutely no interest in sweet things or any sort of baking, I prefer things with spice, like nazzi and bahmi and bbq flavoured rice crackers.
Tuesday, November 7, 2006
On Wednesday, August 30, 2006 I made yet another visit to the hospital. This time it was actually a scheduled visit. The ugly NG-tube finally came out of my nose and a new G-tube was put in my tummy. This was done by surgery and I had to be put "out" for the surgery. I sure woke up screaming and crying for quite a while. Eventually I settled down and slept and slept. I stayed in the hospital until Saturday. In the hospital I spent most of the time in bed or going for stroller rides. I had lots of morphine, so I slept lots. The last day I was getting up and around a bit more like myself. I would automatically pull up my knees to protect my belly if someone picked me up. In the hospital they slowly worked up my feeds and then let me go home.
I arrived home to vomit at suppertime, a couple days later I vomitted again and my belly was very distended. I became irritable and was sweating lots. Mommy and Daddy decided to slow down my feeds even more. After that I seemed to be better. Because my feeds were slowed down it took about an hour and a quarter to do my large feeds. This left little time for snack feeds. Mommy decided not to give me snack anymore but to see how I did on just my "meal" feeds. . My bowel movements became more normal, more paste like and no more mucas. I did not seem as cranky anymore either. I also slowly began to show a bit more interested in food, picking at things here and there. Overall I was doing pretty good.
My G-tube site took a bit of time to heal. For the first two weeks I was in a lot of pain. About a week after the surgery I developed an infection around the site. The site became red, swollen and there was discharge from it. Mommy called the Surgeon and was told to put polysporin around the site. This seemed to take some of the redness out of it, but I was still not very comfortable. I walked cautiously, I would not go up or down the stairs, and when I was picked up I tensed up and pulled my knees to my belly. Mommy and Daddy picked up like a little baby, always being held under the bum too, but
I still was in a lot of pain. Two weeks after the surgery mommy had to take m
e to the GI doctor, at the same time she stopped in the Surgeons office and was able to see the nurse. The crossbar on my tube was way to tight, she loosened it up a bit and showed mommy how to loosen it if it needed to be done again. She also said to stop using the Polysporin and instead to treat the site with salt water in order to dry out the granulate skin that was trying to grow around the hole. The next day mommy loosened the crossbar a bit more and in a couple days mommy could tell the difference. I was walking better and not so tense when being picked up. Before long I was doing stairs again, sleeping on my tummy, rolling, playing as if nothing was there. There continued to be redness, discharge and bleeding around the site. At the beginning of October it started getting worse and I was becoming more tense when being picked up again, lifting my legs to my belly again. On October 10 mommy seen the Surgeon and he treated the skin around the site with Silvernitrate (burns the skin) and then prescribed an antibiotic to get rid of the infection. that stuff sure works, because when I snuck my hand under my shirt, a bit of skin burned on my finger tips. In a couple days it was looking really nice, no more discharge or bleeding. Mommy also requested to have a Mickey tube put in. Right now I have a 10 inches of tube hanging from my belly. Mommy tapes it to my tummy so that it doesn’t hang out of my shirt and get caught, and to keep it more stable and not swinging around all the time. My tummy of course gets red and irritated from always having tape on it. On November 29 they hope to put in a Mickey (which is a flat cap).My G-tube looked wonderful while I was on antibiotics, no more discharge, no more bleeding or granulation skin, no more redness. A few days after the antibiotics were done the discharge came back. The last few weeks it’s been getting worse. My tummy gets red all around the site, more discharge, little bit of bleeding and there seems to be some granulation skin coming again. On Tuesday I went to see the Genetic Doctor and mommy had a chance to talk to the Surgeons nurse again. On that day my site was looking really good and she said it was fine, that it’s just a foreign object my body is fighting. Since then it’s been getting worse and I’ve started to pull my knees up when picked up as well I itch at it because it’s bothering me. Next week I see my Pediatrician, hopefully she can decide if it needs more treatment.
Since I’ve been out of the hospital I’ve had several doctors appointments to keep an eye on me. I’ve also seen GI again on September 15. My GI Doctor said that the biopsy they did during the scope had been sent away and at this point they believe that the colitis is LPI related, likely from overexposure to protein. He would like to do an endoscopy, which is a scope of the esophagus, stomach and larger intestines, from this scope they hope to get a clearer indication of the extent imflammation that I am dealing with and then decide how is best to treat the situation. It was also discussed whether there is a problem with my system absorbing sugar. At this time they do not think this is the case so they are just going to do the scope. The doctor also prescribed some more Canesteen for my yeast infection/rashes on my bum. Yeast infections are common with someone who has colitis and whose system is not functioning properly, it also comes when a person is on antibiotics, since antibiotics can kill the bacteria that fights yeast. I have been on antibiotics often in the last months. At this time they will only treat the symptoms on my bum and are not going to treat it orally, hoping that once my body stabilizes this will settle down. The GI Doctor also prescribe a medication that will help to hold my bile together and reduce the amount of phlegm/mucas in my diapers. Mommy took this prescription to give a try if the mucas gets quite bad again. Mommy has not tried the medication yet as she does not like how it just covers up the symptoms and doesn't treat them. By covering the symptoms mommy says she would not be able to tell how well or not-well I’m doing.
I had been doing well on the slower feeds since I came out of the hospital in September and slowly mommy and daddy started to feed a bit more and speed it up a bit. I was being fed at 200ml/hr and they got to up to 210ml/hr and started to see more mucas, at 215ml/hr it got worse. Instead of giving the medication that the GI Doctor gave me, my mommy decided to first see what would happen if she dropped the speed down to 175ml/hr. Since then my stools have been more paste-like and much less mucas. Although the stools are looking better and there hasn’t been too much mucas (and no blood) my bum still continues to get very red and sore. This past week mommy started using spring water (bottled) to make my formula, instead of the chlorinated ditch water that the city delivers to our tap. She did not see any immediate difference from doing this, but thinks that regardless it would be better not to have so much chlorine water in my system.
Right now everyone is waiting for the endoscopy to be done before any further decisions will be made. I continue to have the dietician come every other week to discuss how I’m doing and help if necessary. The Occupation Therapist only comes once a month right now since I’m mostly on tube feeds and do not eat very much. Every now and then I’ll start picking at food again and then I’ll stop and don’t want anything. Lately I’ve been pretty consistent on not eating much at all. If I do eat something it’s usually nazzi (spiced rice) of which I like to eat the rice one "kernel" at a time. Sometimes I will eat pureed strawberries or I might take a bite of my porridge. I also like to lick salad dressing or ketchup. Recently I’ve decided I like to eat my "cheese" slices and will eat 1/4 to ½ a slice at lunch time. I have no interest in popsicles, "ice cream" (technically frozen nutriwhip), jello or things like that. Mommy gives me three things to choose from at lunch and supper but I seldom touch it, except to play with it. Mommy also bought all kinds of veggie chips, rice crackers/chips/crisps from the health store, but I don’t really like them either. I used to lick the flavouring off them, but now I don’t even do that. I just like to pick them out of the bag and then leave them on my tray or give them to someone else to eat. Mommy tried to do baking for me but I have absolutely no interest in sweet things or any sort of baking, I prefer things with spice, like nazzi and bahmi and bbq flavoured rice crackers.
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