What's Next?

Please bare with me as I write tonight’s entry. I am so emotional right now, which happens from time to time.

So I take Arianna to her pediatrician this afternoon to get things checked out. They took some chest x-rays, which came back normal. This is wonderful news but it does not help us determine what is causing her low saturations. The pediatrician feels that this is not an acute problem and even though he thinks a referral to a pulmonologist would be a good idea, he wants to wait until after we see the cardiologist on Feb.20th. I agreed with him at the time, but now I’m not so sure. The cardiologist mentioned on the phone that if the x-ray came back normal than a CT would probably need to be done. So when I got home I emailed her cardiologist to let him know of today’s events. I’m hoping he will let me know that its either okay to wait until the 20th or to go ahead and get the referral. Either way I will feel better once I hear it from him. The pediatrician even went as far as mentioning that it’s possible that she might need supplemental oxygen if this is a heart issue. So that’s what gets me, you think she might have a heart problem but you want me to wait until the 20th to check this out. That’s why I sent the email to her cardiologist, even if it’s just to calm my nerves. It’s just hard when the pediatrician tells me not to worry but then goes on to say, well if you have heart issues it possible since the lungs work hand in hand with the heart, that you can have lung issues. What is a mother to do?!?!


I also told the pediatrician that her early interventionist wants a hearing test done, so we are getting a referral to an audiologist. Even though she passed her newborn screening, when your child has speech delays they recommend another test done after 1 year old.

Still no word about the swallow study, but the doctor was pushing the nurses today to get the ball rolling. This test could also check to see if she is aspirating which could cause lower saturations.

So as you see its just one thing at a time. I am praying that she didn’t catch a cold from the gym. She woke up from her nap today coughing and sounding kind of yucky. She is coughing in her crib as I type. God please don’t let this be another cold. It seems like she gets a cold once a month. I’ll be glad to get her immune studies done next week.


So I guess I let it get the best of me toda. It just breaks my heart that I have to worry about Arianna’s heart. I just want to worry about normal thinks like teething, or having diarrhea, not her heart function, if you know what I mean. I remember telling myself before her surgery that all we need to do is get past her surgery and everything will be fine. I am coming to terms that the worrying never goes away. I try not to get down about it but sometimes I just cannot help but cry.