shoot4parr
New member
Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
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Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.
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Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.