Tuesday, April 12, 2016

Emmie Update

Emmie Update.....
I've not posted an update on Emmie in awhile, and thought I'd fill you all in and ask for your prayers!

For the most part Emmie is doing well. She is a happy, energetic 7 yr old. She's doing all the things every other girl her age does. You'd never know by looking at her how many health concerns she has.
Emmie's heart looks great! Exactly how it should be. Her kidney function is good, and we've been able to keep her blood pressure normal (with 6 medications) for several years now. 

Her original diagnosis of aortic coarctation is still monitored every 6 months to a year, and her stent is adjusted as needed (which is basically as she grows taller). She has also been diagnosed with mid aortic syndrome, which is another narrowing in her aorta, but lower in her abdomen, around the belly button. This area is monitored as well, however until she is fully grown, there's not much they can do to treat this.
Her kidney function has not gotten worse, and in fact stayed pretty much the same since about the age of one. She's got 2 partially functioning kidneys: her left kidney was never formed correctly in the womb, so it has always only had the bottom half functioning and her right kidney is receiving very little blood flow due to the narrowing in her renal arteries, so it also doesn't function at full capacity. However, her nephrologist tells me that you have a lot of extra kidney!! So she's ok!

The latest in Emmie's world of doctor visits and hospitals has been the scoliosis diagnosis. She now wears a brace to help slow the progression of her scoliosis. She also has something called a tether cord, which is present at birth but should disintegrate on its own, well hers didn't! It needs to be surgically snipped in order to help slow the scoliosis. This surgery is pretty serious, requires a neurosurgeon, 3 days in the hospital and several weeks of down time.  This surgery was supposed to happen in January, but due to complications with blood pressure, it was stopped before they did any cutting but after she was already under anesthesia. 

Since then, there have been lots of opinions on what's causing the blood pressure issues. Emmie's BP above her coarch runs high, and below the coarch runs low. The low BP is also affecting the area of the spine that needs to be operated on. The spine doesn't like low BP, therefore the surgeons were concerned about damaging her spine during surgery due to lack of blood flow, which is why the surgery was stopped.

There is also this lingering question that has been brought up more than once, does Emmie have something called "neurofibromatosis". It could answer some questions if we got that diagnosis, but ultimately doesn't change the course of treatment for her. That is something we are hoping to get answered once and for all very soon, but requires genetic testing, since she doesn't have all the clear signs that lead to it, and genetic testing is expensive, insurance companies don't like to pay for it, so another battle we have to fight. 

All of these doctors are coming together Wednesday afternoon (April 13th) to discuss Emmie. They will make a decision on how to proceed. How do they safely operate on her? This isn't the first time she's been the topic of a "meeting of the minds" so to speak, in fact I'd say she has quite often been the topic of discussion amongst these doctors. They tell me she's an anomaly, they've never dealt with a case quite like hers and she doesn't make things easy on them!

I ask that  you please pray for Emmie. Pray for her team of doctors. Pray for the decisions that need to be made. I trust these doctors with my daughter, but I trust in God the Father even more. I pray for his healing hand on her body daily. I wish she didn't have to go though any of these things. I wish she didn't take 6 medications daily, I wish she wasn't a Riley Child, I wish I could take all of her pain, but the fact of the matter is, I can't. I can however pray for my daughter and her team of doctors, and I ask that you do the same!

Palms 139:14 I will give thanks to You, For I am fearfully and wonderfully made.