So Many Doctors, So Little Time

Stella has been a busy girl lately! She has Speech Therapy on Mondays, Occupational Therapy on Tuesdays, Physical Therapy on Wednesdays and usually at least one other doctor appointment at some point in the week.  The past couple of weeks I have realized how blessed we are to have some pretty amazing doctors (and how frustrating it is when a doctor doesn't meet our expectations.)

Recently Arizona Business Magazine released their Health Care Leadership Awards and Stella was lucky enough to have two doctors mentioned! Her main cardiologist, Dr Stephen Pophal won the award for the best physician (see the article here) and Stella's heart surgeon, Dr John Nigro was a finalist for the best surgeon. Although my opinion is a little partial, I think Dr Nigro definitely deserved to be the winner-he did save my baby girl's life TWICE after all!

Today we had a cardiologist/echocardiogram appointment. The results of the echo were good, nothing has changed in 6 weeks. We are so grateful to have Stella's cardiology team, from her award winning cardiologist to our amazing Nurse Practitioner, Laura, who is always willing to answer any questions and make sure that Stella is getting the best care in every area. We brought up some concerns we have about Stella's neurological activity, GI issues, and eye issues and Laura gave us better answers and guidance than the specialties in each of these fields has done. I seriously don't know how I would have the confidence I need to take care of Stella without the help of Laura and the team that Dr Pophal has provided us with. 

Neurologically Stella has made a lot of advances that have really amazed us. She is a happy girl full of personality. However, a couple weeks ago, Stella started a behavior that concerned us and the soonest we could get in to see our neurologist was April 3rd. About 5 times a day (and usually once in the middle of the night) Stella makes a few involuntary jerking movements with her arms that we think might be a sign of seizure activity. We have video taped her doing this a few times to show to our doctors but today Stella decided to show Laura herself. Laura was also concerned by this and is making an effort to contact our neurologist to do what she can to get us in sooner so we're not waiting a few weeks to get this checked out!

I think that having a doctor as helpful as Laura has really set the bar high for the other doctors we see because I expect all of them to give us that level of care. Unfortunately, it's not very common, especially with our GI doctor. We have not made a lot of progress in figuring out why Stella vomits so much and finding a way to help her. The last GI appointment we had two weeks ago our doctor recommended changing her feeding schedule to a faster rate and coming back in two months to see how she was doing - what am I supposed to do for two months with a barfy baby?! So Dr. Mom took matters into her own hands and created an even better feeding schedule that works best for Stella and for us and I'm looking into finding another GI who might be willing to look outside the box for some answers. The good news is that now Stella does not get continuous feeds throughout the night, her last feed stops at 10:15 pm and her morning feed doesn't start until 9:00 am - which means NO MORE WAKING UP EVERY MORNING AT 2:00 AM to add more feed and NO MORE FEEDING PUMP MAKING NOISE ALL NIGHT LONG. This has been a huge relief leading to a few nights of uninterrupted sleep for all.

We are also seeing an ENT (ear, nose and throat) doctor on Monday to see if he can give us any insight into her gagging. We're hoping they can do an upper airway/esophagus scope to see if there is any inflammation or anything that would cause her irritation and make her gag. 

A few weeks ago we also saw a pediatric ophthalmologist (eye doctor) thinking that her right eye was weaker due to her brain damage. We went into the appointment thinking Stella would get a patch for her left eye to wear throughout the day to make her right eye stronger. The doctor we saw thought that Stella had a congenital eye defect that was completely separate from her brain damage and that she needed surgery. The idea of another surgery isn't the most pleasant for us and the doctor only operates at Cardon Children's Medical Center- which is a great hospital but is not where Stella's medical team is, which makes us uncomfortable with the procedure. At first the news of a congenital eye defect sounded great because we finally had something that was not due to her neurological damage and otherwise her eyes were "normal." However, after thinking about this for awhile we have decided that we need to get a second opinion (hopefully from a developmental eye specialist) because the weaker eye due to her condition makes a lot more sense.

Stella is a trooper through all of the different visits and as long as I play her favorite YouTube video "Twinkle, Twinkle Little Star" by the Gigglebellies she is usually smiling the whole way through. Stella has come a long way since she was admitted at Phoenix Children's Hospital in June and we are going to continue to do everything we can to make sure she has every opportunity to continue in her progress. Thank you for being a part of our journey, because even with award-winning physicians, we would not have gotten through this past year without the support of our family and friends who love Stella (almost) as much as we do :)