Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 We are having a difficult time with Max, so I thought I would ask you all for some advice. First of all, Max looks just terrible. He has lost 7 pounds. Yikes! He is able to keep down some saltines, though, and he just took Cisapride and most stayed down, so maybe we are making progress... My problem is that each time we open up the g-port, there is lots of green liquid coming out. I assume that it is because of the gastroparesis (stomach basically shutting down). It's a real mess each time he gives himself meds and tries to vent himself. I've got a ton of laundry to wash because of it. Any ideas or suggestions? Does anyone know what is going on? The other problem we are having is that when he is off the feeds, he is feeling very dizzy. I'm sure it is blood sugar related because when he eats a cracker or two, he feels better. That is all he can keep down, though. I am tired, overwhelmed and discouraged. He has been through enough in almost 16 years and it should be ending, not starting up again. And having to deal with the insurance company and now the government to get them involved and help us out...It takes a lot of effort. I'm also going to call Nestle and see if they can help because they make Peptamen, Jr. By the end of the week, I will also have called our local newspapers. Expecting us to pay $400/week for formula is unrealistic. (Did I tell you all that the insurance company wants us to puree the food and put it down his j-tube? How stupid!) While this all may not help Max, it may help someone else. I sure hope so. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Jodi, I am so sorry to hear Max is having a tough time again. I don't know what else to say, other than keep on being the great mom you are. You have gotten him this far, and I know if anyone can do it you can!!!!!! You are an inspiration to so many of us on this list, for all you have been through and all you have taught us over the years. As far as the peptamen goes, what does your insurance policy say? Do they cover enteral feedings at all? What about medical food? Ours says it will pay for medical food if their is an inherited metabolic disorder. Due to Jake's hypoglycemia, our doctor was able to say it his problem was metabolic in nature, therefor they would cover it. Another suggestion given to us by our pediatrician's office was (if they gave us trouble with the metabolic angle) was to have the ped. office contact the local sales rep for peptamen jr. and let them explain the details of what Max is going through. That you aren't financially able to get help, but that you will literally go bankrupt without assistance paying for this. Personally, this #$%% makes me furious! There have been times in the past, I just wanted to have my husband quit his job, just so we could qualify for medical things instead of getting sick to my stomach worrying where we would come up with the extra money. We work, pay high insurance premiums, and still have to fight for every medical bill! Please let me know if I can help here. I am always willing to fight this stuff! P.S. Have you ever applied for a Medicaid Waiver for Max, parental income generally isn't a guideline. Alison > We are having a difficult time with Max, so I thought I would ask > you all for some advice. > > First of all, Max looks just terrible. He has lost 7 pounds. > Yikes! He is able to keep down some saltines, though, and he just > took Cisapride and most stayed down, so maybe we are making > progress... > > My problem is that each time we open up the g-port, there is lots of > green liquid coming out. I assume that it is because of the > gastroparesis (stomach basically shutting down). It's a real mess > each time he gives himself meds and tries to vent himself. I've got > a ton of laundry to wash because of it. Any ideas or suggestions? > Does anyone know what is going on? > > The other problem we are having is that when he is off the feeds, he > is feeling very dizzy. I'm sure it is blood sugar related because > when he eats a cracker or two, he feels better. That is all he can > keep down, though. > > I am tired, overwhelmed and discouraged. He has been through enough > in almost 16 years and it should be ending, not starting up again. > And having to deal with the insurance company and now the government > to get them involved and help us out...It takes a lot of effort. > I'm also going to call Nestle and see if they can help because they > make Peptamen, Jr. By the end of the week, I will also have called > our local newspapers. Expecting us to pay $400/week for formula is > unrealistic. (Did I tell you all that the insurance company wants > us to puree the food and put it down his j-tube? How stupid!) > While this all may not help Max, it may help someone else. I sure > hope so. > > Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Thanks, Ginger. I feel a bit better after going to a friend's house for Passover tonight. I think that we all need rest and some quiet around here for now. The best is to just not think about how much everything is going to cost and just to cut back and do the best we can. Maybe by the time we run out of what we have, insurance will change its mind and pay for some of the stuff. Well, I look at Passover as our new chance for us to start over. Let the bad stuff pass over us and let us get on with our lives! Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Jodi, So sorry to hear of Max's challenges. TJ also has green drainage from the g-port of his GJ tube sometimes. I agree it is a mess when I don't work quickly enough to get the extension attached or the plug in. The seals on the ports to prevent leakage only seem to work for a short time. Also, if there is enough pressure that also causes the ports to leak. Are you still using the Farrell Valve? Regarding the Peptamen Jr. - it sounds like the insurance company is giving you the run around. Why isn't the home health company you use calling and doing battle with your insurance company? Do you have a designated case manager with your insurance company? If not call and request one a.s.a.p so you have only one person to deal with at the insurance company. Have you spoken to anyone who has actually reviewed Max's case AND has a medical background? Obviously the person you spoke with does not know what a J tube is or they would not have suggested putting pureed food into it! Have your Ped. or local Endo contact their Nestle rep and request a few cases of samples for you. We had to pay in the begining as well while our insurance was being sorted out. I found a company called Care Express Products that sold Peptamen Jr. at a much lower rate then buying it from the local home health company. Don't know if I still have their phone number but remember finding them on the web, try to search on that name. Finally, have you thought of using a different product for Max? One dietitan we work with suggested trying a formula that was further broken down so we could increase the volume thus, hopefully, increase TJ's weight. Haven't switched yet but it sounds reasonable. Hope some of this info. is helpful. Meribeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 I have no advice or experience but I say GOD BLESS YOU. You are doing a fantastic job. Remember to breathe and smile and that God doesn't give us things that we can't handle. I hope things go well. > We are having a difficult time with Max, so I thought I would ask > you all for some advice. > > First of all, Max looks just terrible. He has lost 7 pounds. > Yikes! He is able to keep down some saltines, though, and he just > took Cisapride and most stayed down, so maybe we are making > progress... > > My problem is that each time we open up the g-port, there is lots of > green liquid coming out. I assume that it is because of the > gastroparesis (stomach basically shutting down). It's a real mess > each time he gives himself meds and tries to vent himself. I've got > a ton of laundry to wash because of it. Any ideas or suggestions? > Does anyone know what is going on? > > The other problem we are having is that when he is off the feeds, he > is feeling very dizzy. I'm sure it is blood sugar related because > when he eats a cracker or two, he feels better. That is all he can > keep down, though. > > I am tired, overwhelmed and discouraged. He has been through enough > in almost 16 years and it should be ending, not starting up again. > And having to deal with the insurance company and now the government > to get them involved and help us out...It takes a lot of effort. > I'm also going to call Nestle and see if they can help because they > make Peptamen, Jr. By the end of the week, I will also have called > our local newspapers. Expecting us to pay $400/week for formula is > unrealistic. (Did I tell you all that the insurance company wants > us to puree the food and put it down his j-tube? How stupid!) > While this all may not help Max, it may help someone else. I sure > hope so. > > Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Thanks, . We are taking things very slowly here, one step at a time. Each day seems to bring new challenges, but then Max will surprise me with a good thing and I feel more encouraged and can take just a little bit more. For example, he just ate a banana and half a sheet of matzah. And he only threw up a little of it. It's stuff like that that keeps me going. Jodi Z. Quote Link to comment Share on other sites More sharing options...
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