"When it rains, it pours" seems like the theme with Lily lately. Outwardly when you see her you would think that absolutely nothing is wrong. It seems like people don't take her precarious health situation seriously because she appears so "normal" and happy on the outside. She is seriously the sweetest, calmest and happiest baby I have ever been around. I want people to treat us normally but I still want everyone to understand just where she has come from and where she still has to go. So where do we go from here.....
Lets simplify this and split it into organs/systems (The professor in me writing a blog):
Last time I updated she was coughing and wheezing which the pediatrician attributed to reflux. Since that point, Lily has had her first ER visit because everything got worse. She had a chest X-ray to rule out pneumonia and reherniation, which were both ruled out. They concluded that she had a respiratory virus and just needed some albuterol treatments. Two days later she still was not breathing well so I took her back to the pediatrician. He gave her steroids and referred her to the pulmonologist which is where she went Tuesday.
Her pediatrician's initial diagnosis was correct and it is her reflux that is causing all of her coughing, wheezing and vomiting. The reflux is aggravating her airway and causing reactive airway disease. Now armed with new inhalers and a new reflux med, hopefully this will clear itself up.
We had a cardiology visit today. She is gaining weight (now 11lbs 11oz and barely on the growth chart) but not at a rate that the dr wants to see. When she has her sedated MRI next week, they are taking advantage of that and doing the 2 for 1 special and doing an echo at the same time. If her Echo shows enlarging of her left ventricle, then he is referring her to the cardiac surgeon. We will find out results next week right after she has the MRI.
She is scheduled for her sedated MRI now on October 4. We will find out results on the same day and meet with the neurosurgeon. Hopefully she doesn't have hydrocephalus but if she does, then she will require brain surgery. The two options are a ventriculostomy or a shunt.
If she needs both the heart and brain surgery, then the brain surgery takes precedence. If she only requires the heart surgery, it will probably occur within a month of the referral. Either way, everything is going to be decided before the end of the year.
I am so scared for my baby girl. I don't want her to have any more surgeries, much less possibly two. Please pray for her heart and brain so that she doesn't require surgeries. Please pray for strength for us and we continue on this journey that Lily absolutely does not deserve.
On a happy note, her therapies are helping her so much. Yesterday she rolled from her tummy to her back for the first time!
I know by this time next year that this will be a distant memory. I just want what is best for my baby girl.