I am a mom of a 4 year old, this Friday, that has CF. I used to worry about my son gaining weight. It was even harder when he was an infant because he had horrible reflux and it seemed like he threw up his entire bottle. My sons name is Joey, and he is the baby of 3 kids. He had a rough start and spend quite a bit of time in hospitals for a while. He had psuedo pneumonias with a collapsed lung on several ocassions. I put all of knowledge about children away and completley listened to the doctor. I later learned that I knew my child better than his doctor . I didnt feel that what my doctor was doing was right. The doctor was fully aware of the fact that Joey had horrible reflux, but he didnt seem to care about it. Now, I do love the doctor, he is very compassionate about the disease and children, but he doesnt have children of his own and is quite stubborn!
But when u talk to a doctor, and he isnt listening, i would love to brow beat him1 anyways. I was going down the road the doctor was talking about putting a G tube in because he wanted to save Joeys lungs. He had a test run to see if he was asperating. Joey did great except for the milk. He actually choked during the test and they classified it as asperating, while I asked them to run that test again, they didnt. Joey rarely chokes drinking milk. So my doctor put Joey on a thickener, which was even harder to get him to eat. Now, 4 oz of milk with thickener actually equaled to like 12 oz because it fills you up faster. So I tried what the doctor said, but didnt see any improvement. Joeys congestion seemed to get worse during allergy season 4 times a year. This is when he would end up in the hospital. His congestion would get so bad his lips would turn blue from not getting enough oxygen. All the while I was managing holding onto a job, he was in the hospital the last time when he was 2 years.and after his 5th hospital stay, his doctor wanted to put in a G tube, although his weight gain was ok. I wanted to take my kid home, I felt the surgery was not necessary. I had the GI doctor and speech doctor telling me they didnt see what the pulmonologist saw. The Speech doctor gave me a few suggestions and helped me talk to Joeys Pulmonolgist. I took Joey off of Milk when his allergies were flaring up and put him on soy milk<vanilla flavor to make this easier on me> and took him off of the thickener and started to do my own thing. I would specifically made sure that Joey had a lot of high fat junk food before each apt to rack up the pounds. I know its sad, but against my doctors wishes, I listened to my instinct and I was right. Joeys weight gain hasnt been a problem since. He hasnt had any hospital stays in almost 2 1/2 years and I am on a parent board for new CF parents. The scary thing is if I just went along with the doctor, he would have a G tube in him right now.
Where u guys are right now, I was there. I think my worry about his condition wasthe possibility of the unknown. Ultimately, it is a small moment. and it does get easier. Is your grandchilds congestion gunky? My Pulmonologist wouldnt admit it, but the speech doctor suggested the no milk for a while and see what happens versus get surgery. And I thank the good Lord for having that angel help me have the strength to stand up to my doctor. They did an allergy test and stated he isnt allergic. However, if he is congested it highly irritates the CF. Once Joeys congestion cleared up, I let him have regular milk again.: I could tell you dozens of stories :}. If you need to talk to someone, email me at Tammygianni@att.net. I will email you my phone number. The more people you talk to, the better informed you are and realize you are not alone.
I hope this helps a little.
Tammy Gianneschi
