Really scared...

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Ratatosk

Administrator
Staff member
Colsophnel, you need to get into the habit of doing treatments to keep your child's lungs happy and healthy. Cfers are born with normal lungs; however, with increased infections, the extra thick sticky mucus eventually the lugns will become affected.

Realize you're overwhelmed, so instead of jumping in with 30 minute treatments right away, do 10-15 treatments. When you're holding him, give him some pats -- mini-physio treatments. Is the vest a possibility? Would that help you with compliance?
 
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Colsophnel

Guest
Incomudrox, how do you close this thread? I can't take all of this anymore. I can speak to you personally through email but I don't want this publicized anymore.
 
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Colsophnel

Guest
Incom, please I'm trying desperately to reach you...How do you know about his hospitalizations???
 
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Printer

Active member
Incumudrox:

Kitomd21 is the first logical voice that I have seen on this posting. Closophnel may be looking for advise but her child is in a dangerous situation. It is time to think more about the infant than about the mom. You are acting as an enabler to the mom. Katie is being an advocate to the child.

For you to WARN her is only for you to continue your enabling without critism.

Bill
 
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Colsophnel

Guest
For the people that speak against me, please understand I am very new to this and my mindset has been if his lungs have been healthy for the past year then what are the treatments even doing for him? I didn't even know it was dangerous. Please be kinder, you can explain the bad without saying I'm a horrible person. If I know the bad, which I've been uninformed of I will change my ways. FYI I did give him his treatment today. I am working on it since I posted this initially.
 
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Colsophnel

Guest
Now someone please answer me....Can the moderators on here get access to our medical records??
 
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Printer

Active member
Colsophnel:

Nobody here hates you. We all, in one way or another have faced CF. You knew that missing treatments was wrong, that is why you lied to the Doctor. You need to understand that you and the Doctor are a team. You need to work together for the wellbeing of your child.

The fact that the Doctor is agressive is a good thing. Take what you have learned here and work for the health of your child.

Don't be upset with us, we, like you, want to keep your child alive.

Do what is right and continue coming back here for further support.

Bill
 
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Colsophnel

Guest
Ok, I know where you guys are coming from. But please understand I just want to know if anything bad has happened to his health by me doing that. And if my beginning now, with a full-blown treatment regimine will be too late. I'm definitely starting now. I just want to know what bad I have caused by being so stupid, careless and neglectful. I adore my son and if anything happened to him, be it he gets taken by a social worker or the disease, I would in the most literal sense, die.
 
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Melissa75

Administrator
Something dawned on me a few years ago with regard to parenting: This. Is. It. You don't get a second chance to raise your kid. There is no "do-over." The childhood they get is the one you and fate give them. You can't control fate, but you can do your best on your end of things. Of course my kids will have something to bring to the therapist's couch, but I hope I can look back and say I grew as a parent and tried really hard to do a good job. No parent is perfect. Learn from your mistakes. Then learn some extra so you don't look back someday and have regrets. Is your husband aware of the missed treatments and medication? Have you and he ever joined a support group for parents of CFers? Have you ever talked to the clinic social worker about your feelings about your son's diagnosis? Do you have supportive family or supportive friends?
The thread title is "Really scared." That is good. Fear can motivate learning, changing, and maturing.
 
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Colsophnel

Guest
Melissa, my husband is aware and he is really upset with me that I don't do it. He's supportive but he knows I'm not doing what I need to be doing and it's something he makes snide comments about. We never joined a group, I don't know of any around where I am. I'm scared to talk to the social worker about all of this but I have told her about my depression and my suicidal thoughts. I do have a supportive family but they don't know I've been such a **** mom. They see the love I give him, but not the medical attention I give him..
 
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Melissa75

Administrator
Unless your husband travels extensively or works 18-hr days, he should do the treatments himself. Heck even with a horrid schedule, he could do the treatments when he is around. Ask the social worker for info on a support group.
 
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Printer

Active member
Melissa is right. You and HUBBY need to work together on this. Both of you need to sit with the entire (one by one or as a group) CF TEAM to get the help that you both need.

Whatever harm is or is not done is in the past, start fresh and give this child the attention he/she needs.

Bill
 
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