Search results

OK, My son and I have been referred from our CF specialist to a transplant specialist and they are recommeding a transplant for his lungs. I have so many questions that they answered but I am having trouble believing them. Meanwhile my 15 year old son does not want a transplant because he...

OK, My son and I have been referred from our CF specialist to a transplant specialist and they are recommeding a transplant for his lungs. I have so many questions that they answered but I am having trouble believing them. Meanwhile my 15 year old son does not want a transplant because he...

We are in the hospital in New Orleans for a "tune up" and Parker's doctor is talking about having him evaluated for a lung transplant once he is doing better. He wants them to make the evaluation to see if it is time to start looking at those ideas or do we still have some time to wait and see...

Well after being absent from the fourms for quite a while, I am back.  Parker was checked into the hospital Friday for a "Tune Up" as his pulmonologist put it.  This morning they are talking about putting in a Picc line.  I am trying to spend as much time there as I can but with another child...

Has anyone ever heard about eating bird seed as a snack. My son has done some research about how bird seed is high in calories. He asked me if he could eat it as a supplement to the things we are already doing. I did not have an answer to why or why not. Does anyone know anything about this idea.

Has anyone ever heard about eating bird seed as a snack. My son has done some research about how bird seed is high in calories. He asked me if he could eat it as a supplement to the things we are already doing. I did not have an answer to why or why not. Does anyone know anything about this idea.

Last week Parker went into the hospital to have his sinuses cleaned out again and his doctor suggested that we get a DNA test as long as we were there so we would know what mutation of CF he has. At first I was outraged at myself and him. Parker has been diagnosed for 11 years with CF and in...

Axcan has been providing 5 cases of Scandishake a month to me so I can make a tube feeding for Parker that helps him gain weight. Four of the cases are above and beyond the one they offered in their comprehensive care program. I even wrote them a year ago thanking them for their compassion...

Well Parker woke me up at 2:30 this morning to tell me the top of his mickey button had broken off and he was leaking "everywhere". We did not have a button kit at home so off we go to the ER in a town of 8,000 people. They don't have one that small and the Doctor who put in the button and has...

Apparently someone moved the sun about 5 million miles closer. Does anyone out there do things to address the heat other than pushing fluids and breaks and shade? Parker seems to have periods where he gets overheated then will have trouble keeping his weight. We pick up the volume on his tube...

Parker had his CF visit yesterday and while they were thrilled that he has put on 10 pounds in 4 months, they commented that his lung function could be better. The doctor talked about using Azithromycin three times a week to improve his lung function. This initially made sense but then I had...

Well Parker returns today from spending 3 weeks with his mother. He spent about 6 weeks with his mother over the summer in New Orleans and a vacation to Western Canada. With summer camp and a trip with his grandparents during my time, Parker spent about 1 week with me and that was broken up...

Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me...

Does anyone know of an enzyme product that can be mixed in with a tube feed so you do not wake up every two hours or so to give them to him. It interrupts his sleep and interferes with school the following day. Does anyyone have any good ideas?

As March is upon us and summer is closing in, it is time to lock in summer travel plans and such. Thanks to a shortened holiday from school is LA, I have an interesting dilemma. There are three summer camps that I wanted Parker to be able to go to for their one week session. They have moved...

Well I have been following the recommendations of Parker's nutritionist of working to maintain a 24 calorie a day diet for Parker and he lost weight this week. I thought the g-tube was supposed to work the other way. I have added some feedings in some places but I am concerned. Do I have the...

After doing all the research and hunting to find any and all resources to hlep pay for Parker's feeding tube supplements, I get a call from a "case manager" who says she is trying to help me get the resources I need. I explain my current dilemma and all her suggestions are to retrace my steps...

Parker is having his 10th birthday today and announced to me that 40 is when you get old. CUTE ISN'T HE.... Anyway, we are going to see the doctor Monday to set the date for putting the button on his G-Tube and not a moment too soon since we had baseball tryouts yesterday. Do ya'll have...

Well Parker had his G-tube put in yesterday and by all accounts it went well. I was a little concerned that the Surgeon, Pulmonologist, and Gastrologist were not on the same page on how long Parker was going to be in the hopsital. He is going to be discharged today and spend the rest of the...

Well we go in on Friday to see Parker's specialist and we are already looking to set a date for placing his tube. The doctor is advocating for a G tube and I agree. The problem is that my son is trying hard to lobby for a NG tube instead so he can avoid surgery. He seems to have resigned...