A Little True Story About My Son with Cystic Fibrosis
Nurse comes back in the room to do the test again leaves the room does not say anything, next thing I know we are being taken to my permanent room they of course take the baby to the nursery to clean him up put him on the warmer etc. 12 hrs later we were released from the hospital (Great get to go home). Baby seemed fine went for his three day check up told the doctor their is something not right about my son he is spuing like the exorcist, I can’t keep him full, he don’t sleep like a baby should sleep. Doctor checks him out and says oh he has reflux and fluid on the testicles. sends us on our way, baby goes for all of his visits that are required. when baby hits six months old he got sick and i do mean sick, he went down to 9lbs 12 oz, Doctors stated that he just had a virus and gave him antibiotics and a cough suppressant sent him home, and the next Dr’s visit i told him again their is just something not right about my son he has this awful and i mean awful bowl smell he is still spuing like the exorcist. so we switch him to soy formula, that did not help.
So the Dr totally ignored it just kept telling me that he had the reflux and the fluid on the testicles, so what am i to do but take the doctors word for it. So my husband and I decided to move away out of the state and move to another state(Iowa). we got a farm house with horses,cows, etc we were very happy where we lived both got jobs found a great Dr for the baby, found an aw-some and i mean aw-some baby sitter for him (Love her to death). Take the baby to the Dr’s here for a routine check up Dr is asking me questions about the baby (now he is 11 months old) I told him everything I stated to the Dr.’s where we use to live Dr has me sign a consent form for his records where we moved from took him for his appt because Dr wanted to see him again was concerned about his growth I thought nothing of it. Dr looks at me and Say’s we need to keep an eye on baby he fell off the growth charts at six months old and I was never told this by the other Dr. Of course now I’m concerned. Three months later Dr’s are still concerned and they get a whiff of his diaper. they stated that they are concerned. So they schedule him for a sweat test. Well test comes back not good so they schedule us an appointment with a specialist in IOWA CITY. We spent all day their for the test and the results are not very charming shall I say.
Dr comes in and looks at us and is straight forward with us and says Your child’s test results confirm that he does have cystic fibrosis, as a mother I start crying and am in just disbelief of it all i kept telling myself to wake up from this awful dream I was having, But it was not a dream it was reality. so of course we get bombarded with people around us other specialist, and Blood work needed done to see the progress of the cystic fibrosis, and of course medications etc. so Dr calls back and says we need to do a procedure to stick a scope down our son’s throat to see the progress blood work is not telling us what we like to see. so in November he has his procedure done Dr’s let us know he is in his first stage of lunge disease and his liver is affected as well. So of course more bad news for our little man. They let our son go home the same day so.
Dr’s look at me and told me that any children my husband and I have will have 4 chances of having cystic fibrosis and 1 chance a angle will look over them and they won’t have the disease because the father and I carry the diseased gene, and they recommend that we have our 6 month old son tested so we had him tested. Our angle was looking over our Baby because he DOES NOT HAVE IT THANK YOU LORD.
So as a mother Please parents and Dr’s Listen to the parents when they are telling you something is wrong with their child because nobody knows a child better than their parents.. Our son if he was diagnosed at birth for this he would not be so far into progression with the cystic fibrosis if he had the proper medical treatment that he needed, and just if one moment that the Dr would have taken time out just to listen to me and really examen my child the way he needed to be just maybe something would have gave him the indication that their was something wrong with this baby other than reflux and water on the testicles, If the Dr would have put some of the signs together he would have realized what was going on. I Really Thank the Dr.s where we live now for everything and for catching this disease of our son’s before it could have been too late but as our son gets older, he is doing better and better. He actually has hit the growing charts after such a long battle of trying to get him to this point.Dr’s are very happy and pleased with his progression that he has mad since his diagnosis. So please parents be persistent with your Dr.’s Don’t take no for a answer be very persistent with them keep on them if you feel something is wrong it is better to be safe than sorry. take a look at the web URL for cystic fibrosis it is www.cff.org I Leave this last note to you all. GOD BLESS ALL CHILDREN THEY ARE OUR GIFT FROM GOD.
