So my daughter was hospitalized for the 2nd time a month ago, for her lack of oxygen. (She was diagnosed with asthma at 5 months, i know its weird, we're going to a pulmonologist tomorrow to get real answers) but anyways, yesterday, her pediatrician's nurse left a message at 5pm that said that i need to get my daughter in to see her dr this week. They were closed so i called today, and made an appt and left a message for the nurse, the nurse didnt call me back so i called at 4pm and then spoke with another nurse. My daughter already had an appt on monday to see him but they said she needed to get in this week, that monday wasnt soon enough because they got test results back. The nurse i spoke with didnt know the test or the results, so im calling again tomorrow. My daughter has seen her dr for the followup of the hospital visit, so i know thats not the issue, and the whole test result thing is freaking me out big time. The hospital was checking on her newborn screening (she was born at a different hospital) and she was admitted during a holiday weekend so they couldnt get the results that day. The results they needed were for Cystic Fibrosis. I'm flipping out and want answers NOW. The pulmonologist is going to do a lower airway scope to see if her breathing is due to a physical abnormality so we can take her off all of her steroids and medecines if they are not needed. But she has to be put under anesthesia. Aubrie is only 10 months old on the 4th of April. I'm flipping. Sorry this was long but i really needed to get this off my chest. Ty for reading!
If you have links to give me that would be great, and personal experience as well.
I just joined this group, and am freaking out right now so if there are any soothing words you have for me, id love to hear them right now. TY!
EDIT: Aubrie doesnt have Cystic Fibrosis. She had the test on Friday.
I know how you feel about freaking out about CF. I did the same thing, and although my son is more digestive and his lungs are good...when I heard he had CF I thought it was the end of the world. But research has come very far, and these kids can lead semi normal lives. So wait until you get the results back, take a deep breathe. If your daughter has CF, find the closest CF clinic, make an appointment and go right away. The doctors and nurses in these clinics are the best, and will help you step by step. Good luck.
Hello,
Take a deep breath and just take it as it comes..............CF is not the end of the world, most people see my 11 year old and never guess he is ill. A sweat test and or DNA test is what will determine if she has CF or not. Neither are invasive, simple and easy. If they say CF get to your local CF center and they will give you all the answers. Don't try to do this with a pediatrician. http://www.cff.org/ is the site with links to your local cf center and alot of information about CF. I would recommend taking a notebook and taking notes and a list of your questions if you end up going to to the CF center.
But just remember this isn't the end of the world. It's alot of work for you but not impossible to deal with. Your child will lead a mostly normal life and there are new medicines coming out for CF all the time. I feel they are very close to a cure or at least a major reduction is symptoms....
God Bless and best wishes for you to get your answers soon!
Okay, so we went to the pulmonology dr today, and am a little relieved but now I have a whole new list on concerns. The dr said that she thinks its physical, and that it could be Laryngeal cleft. Which is a flap/opening in her esophagus.(sp) Or cystic lesion, or laryngomalacia, tracheomalacia, or bronchiomalacia. But she is getting ANSWERS! Thankfully, except im not getting my hopes up because everytime we think we're getting answers we dont. Aubrie has to have 2 different scopes done that require her to be under anesthesia now, and the ENT and Pulmonologist are going to coordinate so they can be done at the same time. If it is the Laryngeal Cleft, the ENT can fix it right then! They are also doing a sweat test! They said they dont think its CF but they want to make sure since it was brought up and i'm (obviously) concerned. They are also going to be doing a swallow test. To see how she is swallowing since her episodes are always when she is laying down even though we have her elevated when she sleeps ever since birth. So good news, but also stressful news. But atleast its a new start to finishing the diagnosis! (And about her ped. office, the nurse is so ignorant, she said she didnt read the whole chart and another dr had already signed off on the results, and she didnt need another follow-up. I'm like read the chart before you call and freak me out next time please. lol)
Thank you for your prayers and thinking of my daughter!
We're in another battle actually. The pulmonologist had told us that she thought it was Lyrgeal Cleft and not the lower airways, well we went to the ENT and they said it sounds more like lower airways and not upper airways at all (lyrngeal cleft included) but they're both taking a look to see what it is. So we'll see. who knows, i am so frustrated right now. And the pulmonologist had told us that they could fix it right there if it was lyrngeal cleft and the ENT (who specializes in that specific thing) said its a MAJOR SURGERY. I'm just going to have to wait for the scope and try to just not freak out about all of this. Every dr is giving us something different though.
Sweat Test
- Mama2ETA
on Mar. 23, 2010 at 11:49 PM