Tuesday, March 17, 2015

An Update On All Things Medical

And boy howdy is it an update.

We've been busy ... running to and from the hospital, and other doctor appointments ... and we've learned a lot and added some things to our plate.  (Our plate was pretty full before so it will be interesting to see how we get it all done.)

Em had an MRI of her heart a few weeks ago and it told us a lot.  As a little refresher, I'll explain Em's heart just a bit.  One of the defects she has is called pulmonary atresia.  Basically it means that her pulmonary valve didn't develop.  When she was a baby her surgeon put in a temporary valve made out of gortex, but it is long gone.

Because of the missing valve, the blood flow to her lungs leaks back into her right ventricle, causing it to enlarge.  We have an MRI once a year to measure the size of the right ventricle, as it is that that will determine when surgery will be to put in an artificial valve.

For Emily's age a normal size for the ventricle is 115.  Em's is measuring 137.  They will do surgery when it's about 160.  Assuming her heart enlarges at the same pace, we have about a year before her next open heart surgery.  We've always known she would need another surgery, and that didn't come as a surprise.

Jason and I talk often about how in some ways we wish they would just do the surgery and get it over with,  so that we no longer have to play the wait and see game.  However, the longer we wait, the longer we will have before Emily will need her next surgery after the valve replacement.

Em's heart can't be fixed - everything that is done is simply a way to make do with what we have.

The cardiologist told us that they saw an aneurysm on Emily's heart that they hadn't noticed before.  He had never seen this before, and wasn't sure about the best way to proceed.  He and his co-workers met together and decided that for now, it doesn't add any additional risk, and so they are just going to watch it.  We will have more frequent visits with the cardiologist, and will just wait until Emily shows signs that her heart is getting weaker.

Before and after her MRI

Over a year ago we met with a team of doctors who deal with cranio-facial issues.  Emily has a cleft in her soft palate and we met with them to discuss our options where the palate is concerned.  They didn't want us to consider surgery until she could speak enough that they could listen and hear how her cleft palate was affecting her speech.

We met with them last week, and they are confident now that Em's current speech issues are 100% a result of the palate.  We met with four different doctors, and all of them believe that surgery will be Emily's best option, but they still want to wait.  Every sound that Emily makes is made through her nose, and they want her to be able to say a hard d and b sound before they do surgery.  With a scope they can watch her make those sounds and from that can determine the best surgery option.  Apparently there are four ways to repair the palate and they just want to make sure they choose the best way for Emily.

Emily has had speech therapy her whole life through the state but I am currently looking to get her into a program that has people experienced with cleft palate issues, so that her therapy can be tailored towards that.  Initially we were told that our insurance wouldn't cover speech therapy and we were really concerned about what we were going to do because each appointment costs $250 and for a few months Emily will need weekly therapy.  However, I called the insurance company and after explaining Emily's situation they told me that they would cover most of her therapy.  I felt like I had won a small battle.

The ENT we met with suggested we get a sleep study done to make sure that Emily doesn't have sleep apnea, as that could also determine how they proceed with the surgery so I am waiting for a call back to schedule that test.

They tested Em's hearing and although she did pretty well, she failed a portion of the test.  It's common with her syndrome to have fluid issues with the ears, and the portion she failed tells us that Em does have fluid.  The ENT and audiologist were surprised that Emily hasn't had more ear infections than she's had.

We've scheduled surgery at the end of the month to put tubes in Em's ears.  We want to give her the best possible chance to hear sounds correctly, as that will help her with her speech.

So we'll do tubes, have a sleep study done, and do 6-8 months of speech therapy and then at that point we will meet with the doctors and decide from there when to fix Emily's palate.

To say that I'm grateful for a job that provides health insurance would be a huge understatement.

Emily has a pretty healthy fear of all things medical, and it's often more than I can handle to have to put her through even something as routine as a shot.  I'm so grateful that Jason is usually there to help us both through the hard parts.

My girl shows me every day what it means to have strength.
She loves life with her whole heart, and it's my hope that I can always be there to fill her life with as much love as I possibly can.

Tuesday, March 3, 2015

Life Lately

One of us, or all of us at the same time, has been sick since the last time I posted.
We're really sick of sick.

One lousy case of the 24 hour yuck and a back that was thrown out - that was Jason.

One horrible bout of debilitating vertigo, an order to stay in bed to avoid pneumonia, two plus weeks of feeling kind of crummy - that was me.

And weeks and weeks of illness, some of it undefined - that's our girl.
It's getting old - it got old a long time ago.

She's had a cold for forever, but for the last twelve days she's had a consistent fever that we can't figure out.  Her temperature ranges from 100-103 ... and when it's above 101 she's miserable.  On top of that, a chest x-ray shows that she's got the beginning phase of pneumonia.  We had blood work done yesterday, and so far everything looks normal.

If she hasn't improved by Thursday, we have to take her back in for another round of tests.

She's missed two of the last three weeks of school, and at this point we're not sure when we will be able to take her back.  Honestly, we're not sure if we want to take her back.  School is about the only place she's exposed to germs, and those germs have not been our friends this winter.

In spite of it not feeling well, Emily is pure joy.  I know I say that regularly, or as regularly as I post, but it's true.

Emily stayed home with Jason today and I went to work.
When I got home tonight Em and Jason were resting on our bed.
Jason was watching the news, and Em was laying next to him watching something on the iPad.
I went in and laid down next to Em and although she looked at me out of the corner of her eye, she didn't say anything.

It was a few minutes later when her show ended and she basically threw the iPad at Jason and then threw herself into my arms and said, "Hi!"  She snuggled with me for for a few minutes and told me all about her day.

We've spent a lot of time snuggling the last several weeks, and Jason and I enjoy every minute.

We recently cut Em's hair, and every single person who sees her, stranger or not, comments on it.

I'll post my favorite pictures of Em from the last month, and then I'll try to post again before the fourth of July.

And as a ps.  If you want to follow me on Instagram or Facebook (where I post a lot more frequently) you can find me at @elimysmommy or send me a friend request on FB.