No light at the end of the tunnel

[PreciousJewel]

My baby girl has been admitted to hospital and is now on IV Anti Bio but they dont know what is wrong with her. She is needing oxygen and her breathing is slower than normal. She will not feed. Her X ray has come back ok and i am waiting for her cough swab result... She is only 4 months and I feel so helpless...
I am so afraid for her and feel that i just cant go on anymore>>>
I just cant see her leading any productive life...Will things get better? Im not so sure....

 

[anonymous]

Paula,

I'm sorry to hear about your little one and all of the trouble she is having. I know it's a very difficult time for you right now, not having your baby home and getting used to this diagnosis. I look back at that first year my son was diagnosed and I'm just so glad that we made it through. I know our situations are not exactly the same, but things are good for our family now and our son with CF is doing very well. There were times during that year that I thought things would never get better. I'm so glad they did. It would feel out of place to not have him do his treatments or take his enzymes....it's just become a part of daily life. He still goes to school, plays with friends, take swimming lessons....and this is after he had a very difficult first year of diagnosis as well. Please keep us posted on your little one. She will be in my prayers. Hang in there, Paula.

Carey

 

[anonymous]

Thanks Carey,
They now think she is salt deprived.???..as her sodium and potassium were completely off range....She is still not well and until we get further results we just dont really know...and neither do they??? Her chest is clear so we are waiting on the cough swab result...I dont want to wish her years away but cant wait until she can walk and talk if that makes sense as she is so so tiny....but she has been through so much already and is a tough little cookie.....

Not logged in, Paula - Mum to Joe aged 2 and 1/2 and Ruby 4 months...

 

[anonymous]

Both of my children have cf and the first six months of their lives where the most challenging. They both were hospitalized twice during that time, once at diagnosis and once for pneumonia. My children would not feed as well when they got pneumonia. My daughter ended up being on a NG feeding tube for a few months. It really helped. Sorry your sweet daughter is going through so much. I too wondered what life would be for my daughter when she was diagnosed. For my children, everything was so much better for us once they reached about 9 months. Since then, they have been on the regular cf drugs, but no real cf problems (praise God!). You would never know they had cf, they lead wonderful, productive lives.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

I agree with the other posts. My first couple of years of my life were pretty rough. I don't know if our immune system is just not fully developed at that age or what. There were times when my parents faith was tested. Stay strong & if you believe in God, pray for strength and healing.

 

[proudmom2lilCFer]

I know just how you feel about no light at the end of the tunnel. My son was diagnosed on 2/14/05. He was 3 1/2 months old. Since then he has been hospitalized at least once a month. Staying in for as long as 3 weeks. It's very easy to get discouraged and lose faith, but you have to be strong and keep going. If you child sees you giving up, she will give up. Even at only 4 months, they know what you are feeling. My son is now almost 10 months old, and things are still hard. He doesn't eat by mouth anymore. He has a g-tube that he got on 5/9/05. He has gained almost 3 pounds in the last 6 weeks. He is a fighter. Just as your baby is, I am sure. I wish you all the love and support in the world. I know it's hard. But don't give up. There is a light at the end of the tunnel. Sometimes you just need to look a little harder.

 

[anonymous]

Paula, be sure and keep us updated on little Ruby. What's the latest on her salt levels? Almost every parent I talk to agrees that the first year (or at least the first "period" of diagnosis) is by far the hardest. You and doctors (and your children of course) are trying to figure everything out.....meds, treatment, etc. Hang in there. I really believe things will look up for you. Try and not lose hope. Carey

 

[PreciousJewel]

Thanks to everyone,
I am still having a bad time at the minute as my husband and I are juggling going to the hospital and also trying to be normal (whatever that is) with our son, who is 2 and realises that Ruby is not around. Her salts have gone up to 130 and they should be 135 - 140 so things are much better. She is starting to take her bottle again but she does keep bringing back a little milk which is really flemmy??/ Is this normal they say it is the mucus which is on her chest (its clear by the way) but her X Rays come back ok...I dont really understand all of this mucus stuff.
She has a feed then starts to cough, then brings up a load of flem..??
Is this normal for CF babies....i am sure alot of the staff dont really know...What are your experiences and is there anything i can do to help her apart from the physio....????

...They say she has a bacterial infection but it is a common one that all babies get and noting to do with CF.....it was the lack of salt and potassium that was the main problem but i suppose this infection doesnt help

It was suppose to be her christening today....so i feel a bit low.....

x ...Like a previous reply about losing your child...It just consumes me all of the time...I cant bear the thought of it..I just hope that something comes in soon to make their lives so much better

Thank you to all that have replied, its nice to know that people care xx

 

[anonymous]

I completely understand. When my baby was 3 months, he was admitted for 2 weeks. It breaks your heart to see your baby lying in the hospital and all you can do is rearrange the room (and you know you would go to the ends of the earth for your children if you could). I had so much trouble in the begining (and still have bad days, weeks, etc) that every time I looked at my precious baby, all I saw was the disease. I constantly had panic attacks that every time I checked in the crib that I had to brace myself, never knowing what the future held. Having an older child who is used to being "number 1" and then suddenly competing with a sick baby, can make matters all the worse. I am happy to report my chubby 9mo old is teething, trying to walk and a big troublemaker! I know that I can't see the future and my anxiety will never completly go away but enjoying every minute helps. My prayers are with you.

BIG HUG!!

 

[anonymous]

Paula,
It's really hard, I been threw it and it's so hard. Don't ever give up hope. Alot of people don't want to hear this, but put your faith in the Lord. I still do, my kids are 17 & 18 Yrs old. At times I thought when they get older it a be alot better. It's not true, I think it's worse. When they're little the main thing is the calories and making sure they do the treatments. When they're little, just remember you have to say so. Feed them hot dogs, cheese noodles and don't forget chocolate milk. My girls always keep their weight up. NOW they want salad and low fat stuff which is'nt really the greatest. But, they still love the chocolate milk.You'll do find, at times it was so hard especially listening to other stuff about Cf. Just put your mind to it. Your goin to beat CF, don't ever doubt. I don't.
If you ever have any question my email is funtownusa@aol.com.
DD

 

[anonymous]

Thanks to everyone.
Ruby came home last night..Hurray!!!1 She has been suffering from lack of sodium!!! She still has a nasty cough but i suppose she will sometimes.....She is has put on 10 oz's in the last few days which i was surprised at...Her christening has been arranged for this Sunday coming and i cant wait we are having 1 huge huge party!!!!
I agree with the other entry. My son Joe doesnt understand why Ruby is away and it is so so difficult....

I really hope something comes out that can really treat this disease......I sometimes have my doubts in the darkest times but god i hope so.......just imagine if that happens we will all have to meet up and have the biggest party EVER!!!!!

Thanks again
Paula....(not loggin in)

Paula