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Thread: Mystery Man Part 3: Mystery Solved?

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Mystery Man Part 3: Mystery Solved?

    ((((((Hugs to All)))))) ~

    This is the end of the trilogy. We hope!

    While pondering Jon's recent absence of belly distention issues (knock wood ~ c'mon, everybody who reads this ~ knock wood!), we came upon this possible explanation:

    Jon is fed formula via G Tube for about 18 hours per day. The breaks are allowed to accommodate his Dilantin doses ~ food must be off for 1 hour before and after his Dilantin.

    Until a few months ago, Jon's formula was delivered in cartons, similar to juice cartons, with separate IV bags, into which we poured the cartons of formula. That meant opening and closing the feeding bag several times a day, allowing air into the system. Additionally, the cartons had to be shaken, before they could be poured, which created air in the formula.

    At the end of Jon's feeding cycle, usually around 5 p.m., Jon would begin to swell, filled with gas and fluid.

    Jon's current system is closed. We have a bag with 1500 mls of formula, we unscrew the bottom port, insert the spike set tubing, and no air gets into the system. That's it. We hang the bag, and instead of pouring 6 cartons of 250 ml formula into the bag, we do nothing, other than operate the pump, and give Jon meds and flushes.

    When Jon's GI visited to change Jon's G Tube, he suggested an antibiotic in case Jon has bacterial overgrowth. But I was reluctant, and we chose to take a wait and see approach.

    If we're right, and the previous feeding system was the cause of Jon's distention, then I intend to write to a variety of folks about this, including the manufacturer. I will tell them about the countless times our son nearly drowned in his own secretions of water, because his gut was so inflated with gas. The nightmare that he and we went through to get him to a safe state every time it happened to Jon, which was frequent.

    It's no good to tell us, "well this is what happens with G Tube feeding." They should never ever go back to the system we were using with the cartons.

    Every time we open that feeding bag, every time we shook a carton of formula. Every time we disconnected the feeding line from Jon's tube. Air got in.

    I pray that we are right, and that Jon will not have any more of those frightening episodes. (Time to knock on wood again!)

    It just seems to make sense. And, it's been a long time since I've said that.

    Jon's nurse will be here on Thursday to change Jon's catheter, so I'll run my theory by her. It's as plausible as any other theory, so why shouldn't this be the one?

    Fingers crossed, and lots of praying, this is the one.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose that's great detective work. Totally plausible. what a long time to go with this issue and such an asy practical fix. Praying this is the end.(and knocking wood).
    Mary Grac

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    ((((((Mary Grace)))))) ~

    Thank you so much for your prayers and for knocking on wood!

    It is totally plausible. The feeding system is the only thing that has changed for Jon, since the distention issues decreased. He still has fluid retention for many reasons ~ immobility, Dilantin, poor circulation, being in bed, poor motility. But the gas was the real problem. It consumed his gut and left no room for the fluid, which had to come out somewhere. It escaped through Jon's mouth and trache. All of that abdominal pressure was hard on his lungs and his heart.

    Jim and I became used to these episodes, but nonetheless, we often looked at each with panic in our eyes, as we were desperately suctioning him to keep him from drowning. More than once, we were poised to call 911, but we knew that we had to keep working with him, and laying him flat on a gurney would be the worst thing that could happen to him in that state.

    It was pretty scary, and I have the grey hairs to prove it.

    With the old system, we could only add 2 cartons at a time to the feeding bag, because the formula would not stay fresh more than a few hours. So, three or more times a day, we were opening the feeding bag, letting in all that air, and adding shaken, bubbly formula to the bag. With the new system, NO AIR gets into the bag, and it can hang for 24 hours.

    So, I'm not sure that I did great detective work there. It just kinda makes sense, you know?

    The thing is that we couldn't have changed it, if we had wanted to these past few years, because the closed system was only recently invented. Maybe they came up with the idea, while the facility was closed for repairs to the water main earlier this year (or last year?). I'm just glad that they did, because so far it is working.

    I just finished giving Jon his Spa Treatment Bath Extraordinaire. I was able to recline his head to shave his neck. I was able to lay him nearly flat to change his colostomy flange.

    What's amazing about that? If I had done that before the new feeding system, Jon would have surely choked, gagged, vomited, and we'd be in ICU. We could barely tilt the head of his bed back to pull him up in bed, when he was distended. Now, Jon can lay semi-flat, stretch out, move around. That is amazing.

    So, I'm knocking on wood again that it remains this way.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    That's just awful that a system could be in place for so long and be causing such a problem probably for others also. I's a shame that it had to go on that long but I'm so happy for you guys that this may be one less thing Jon has to deal with. (knocking wood with you). Reading about Jon's Spa Treatment warmed my heart, I could tell how good it made you feel to be able to do this for him and it certainly made Jon feel good also. It's all those little things that we can do to make a difference in how our children feel that keep us going. There are so many things out of our control and it feels really awful to be helpless.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Quote Originally Posted by mg12061 View Post
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    It's all those little things that we can do to make a difference in how our children feel that keep us going. There are so many things out of our control and it feels really awful to be helpless.
    Exactly.

    And when something, which has been out of our control, is suddenly controlled, it's a reason to do The Dance of Joy.

    Jon's nurse visited to change his catheter today, and when I said, "I think we've figured it out," her expression was almost gleeful. Once in Jon's room, I explained, using visual aids (the feeding bag/spike set) our theory. And she smiled, "That's got to be it! It has to be it!"

    I'm so sad and angry about it, as well as relieved. The distention problem is one of the reasons Jon landed in ICU in 2012. He had a horrific seizure, which I firmly believe related to his belly distention, in that we were holding his food. He vomited so much that year. We just gave him water, for fear of aspiration. We tried everything, even giving him formula 20 cc's every half hour. We were bolus feeding then. Again, that's how air gets into his belly. An open syringe, pouring formula into it.

    When he came home, he was on the pump. We thought the issue was bolus feeding. It was, and it wasn't. It was air getting into Jon via the bolus or the open feeding bag with cartons.

    Along the way, the GI and Jon's nurse(s), the docs/nurses at the hospital, all continued the mantra, "that's part of G Tube feeding."

    But it shouldn't be. Plenty of folks don't have Jon's symptoms, which were way over the top for just having some gas, but options, like the closed system, should have been available from the get-go. In the hospital, the nurse hangs a jug of formula, using a spike set, which runs for 24 hours. How hard was it to translate that to the 1500 ml bag closed system?

    Jon has had his G Tube for 5 years, and this is the first time that he's been stable with it. In those 5 years, he's been in ICU three different times. A parade of doctors have examined him, heard his story, but not one suggested that he needed a closed system.

    When I described water pouring out of Jon's trache and his mouth, they all looked at me like I was from Jupiter. What? Huh? Never heard of that before.

    Yeah, well, they all react the same way when I tell them that I pulled two 4x4 gauze pads and 6" of tape out of Jon's colostomy in 2008. Three years after his colostomy surgery. I was examining Jon's stoma, because he was constipated, and I saw something mesh like. I grabbed a q-tip to go on a fishing trip, and out came two gauze pads! Many months later he excreted the tape. It was unreal! I wondered what he might produce next, so I told Jon, "If you have anything else in there, I hope it's money!"

    As I said in my other post to you, "you're looking at rare." We're so rare, we don't even have a diagnosis for Jon and Michael. When they were boys, doctors from all over the world would visit the university and our program for children with special needs. They wanted to study my boys, and they did. Brilliant minds. No answers.

    That's when I learned to wear my Detective Hat.

    Every time I have cried to Jim, "I should have known!" "I should have figured that out!" about anything related to our boys, he always says, "But that's why we have doctors. You can't know everything."

    But, when doctors don't know anything, I have to know everything.

    I know you feel that too, Mary Grace, as I'm sure we all do. How can we control something, if we can't even get a handle on it?

    Praying for answers for Kathleen and all of our children ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    That seems to make perfect sense. Allowing air into the body can also cause infection. Go easy on yourself though Rose.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Funnylegs4)))))) ~

    Thank you. I have been known to beat myself up a lot. Guilt is part and parcel of this journey.

    The most important part of the story is that Jon is doing so much better, and he's able to release more of his fluids now via his catheter, which is really helping him. Unfortunately, the years of distention have taken their toll on his posture, and his lack of hip bone on his left side has resulted in deformity. I am seeing this as a future problem for Jon potentially, with regard to his lungs or his heart. We do everything we can conjure to position him properly, but he leans to the left and that side has dependent edema. His hip bone is powder.

    I just think about whether this could have been avoided somewhat, if Jon had had the closed feeding system these past years. He voided 2400 cc's in 24 hours the other day. That is very unusual. He's getting rid of all of that fluid finally, because he can. He doesn't have all that air in the way of the fluid's movement.

    Your comment that air into the body can also cause infection intrigues me, as I haven't heard of this before. Could you elaborate?

    Thanks again for your encouragement.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    (((Rose))) That is so awesome that Jon has had such great improvement! The closed system sounds a million times easier for you all than what you previously did. Even without the air problem, just the sound of having to open stuff up and pour it back and forth sounds like it could just be unsterile. Sad that the closed system was not invented sooner. Knocking on wood for you that this solves his fluid issues!! I am so happy for you all that something is going right for a change! :) I can't even imagine the relief you must be feeling. That is so nice that you have more options for positioning Jon too. Hope he enjoyed his spa treatment!! Praying things keep looking up for you all!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Rose, It is sad that so many "smart minds" couldn't see that this would be an issue a long time ago. It makes perfect sense any air into the body has to get out. When I do Kathleen's cecostomy flush I run the fluid through the tubing till all the air is gone. Not something that was in the instructions they gave me, so I wonder if others don't do this and get air into their intestines. They also said use room temperature but do you know how cool room temp is, especially in the winter. I realised it was uncomfortable for her so I warm the bag of fluid under running water to more of a body temperature. Much more comfortable. It's great to hear how good Jon's doing and how much more comfortable he is.
    Mary Grace

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Funnylegs4)))))) ~

    Thank you. I have been known to beat myself up a lot. Guilt is part and parcel of this journey.

    The most important part of the story is that Jon is doing so much better, and he's able to release more of his fluids now via his catheter, which is really helping him. Unfortunately, the years of distention have taken their toll on his posture, and his lack of hip bone on his left side has resulted in deformity. I am seeing this as a future problem for Jon potentially, with regard to his lungs or his heart. We do everything we can conjure to position him properly, but he leans to the left and that side has dependent edema. His hip bone is powder.

    I just think about whether this could have been avoided somewhat, if Jon had had the closed feeding system these past years. He voided 2400 cc's in 24 hours the other day. That is very unusual. He's getting rid of all of that fluid finally, because he can. He doesn't have all that air in the way of the fluid's movement.

    Your comment that air into the body can also cause infection intrigues me, as I haven't heard of this before. Could you elaborate?

    Thanks again for your encouragement.

    Love & Light,

    Rose
    You're welcome Rose. I'm so glad Jon is doing better! I am planning to go into biology and I watch a lot of science and medical shows as well as read a lot of articles about the body. What I always hear when an animal or person is sick or injured in particular ways is, it is very bad to let air into the body in places where it should not be because the air is filled with bacteria. I watch a show called "The Incredible Dr Pol." and he often treats animals with injuries where the tissues are exposed to the air and puts them on antibiotics to protect them. I have also heard that operating rooms are kept cold to prevent infections and bacteria entering the surgery site. Oxygen itself is basically a poison that degenerates tissue as we get older(like what happens to a half eaten apple exposed to air) even though we of course need it to live. Gas/air in the stomach and lungs is usually not harmful but if there is too much gas in the stomach people and animals can get very sick. It screws up the whole GI track. I'v even heard of "bloat" conditions in animals like dogs and cows where they die from either the pressure on their systems from the gas or secondary infections. Not trying to scare you. I am not an expert so perhaps a google search would be helpful.
    I'm sorry about Jon's hip. I could imagine it effecting his ribs somewhat. I'v learned how important alignment is for healthy body functioning. If you keep trying you may find things that could help with the alignment that bypass/work around the hip problem. People are more aware of their body alignment these days and this awareness has crossed over into the treatments for people with disabilities. Please take it easy with the guilt. When I feel that kind of guilt it hurts more than it helps, and I hurt myself the most.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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