Wednesday, October 19, 2016

C.S. MOTT Children's Hospital Part 1 Update

So we survived our first trip to C.S. MOTT Children's Hospital in Ann Arbor Michigan. It was actually a really nice hospital, not that I was expecting less, I just didn't know what to expect. The staff was very nice, the nurses were great, they really exceeded my expectations. Every doctor that came in to discuss Emmie was kind, respectful and very knowledgeable.

Emmie had 2 procedures while we were there. The first was the more serious of the two. She had to be put under, they had to go in with a catheter in both legs and go up into her aorta, then into renal arteries, inject dye and take lots of images to get a clear picture of what was going on. They also took rennin samples from all arteries leaving her kidneys to see which one is secreting this hormone that sends signals to the brain to up the blood flow. If you've ever had one of these cath/angio type of procedures, or know someone who has, the insertion sight for the cath isn't stitched up, they use compression to close the sight, then you have to lay flat for several hours with as little movement as possible to keep the sight closed. When Emmie was waking up from the anesthesia , she started coughing, and reopened on of her cath wounds. They had to reapply pressure to close it again. I wasn't there for this, thank goodness, I might have lost it. Emmie is bruised on one hip from the pressure they had to use. She made it back to the room around noon, and had to lay flat til 5:00pm. Despite them telling me they gave her an extra sedative to help her sleep off the day and stay still, by 3pm she was asking "how much longer?" She also had her finger on the button to move her bed to the seated position every time she asked, and would smile at me when I said "Don't you do it". Then she would touch it just for a split second, just enough to make the motor click on. She definitely still had her spunky attitude, even drugged up! (I really don't know where she gets it!) On day two, she had a nuclear scan to check kidney function, this was a walk in the park compared to day one. She watched cartoons for 30 minutes and it was over.

The surgeon, Dr Coleman, came and talked to us around noon on Tuesday. Let me just say, that she is fabulous! She is so kind & so knowledgeable. She handed us a packet of information on Emmie, all the images they had collected, all the tests they ran, a CD copy of everything, her business card, her cell phone number. (Really, what doctor hands you their personal cell number?!?!?) She went through step by step what they want to do with Emmie while looking at the printed copies of her imaging.

Step one: Reconstruct the mid aorta.
     There is a significant segment of her mid aorta that is narrowed, they measured a 20mm pressure gradient across the narrowing, which is fairly significant. They want to do an aortic patch to correct this. Basically they will cut open her aorta and patch it to make it wider, essentially making it the same width as the rest of her aorta.

Step Two: Kidneys and Renal Arteries
    Emmie's right kidney is larger than her left. It also sits up higher than where a normal kidney placement would be. Her left kidney is smaller, the top is somewhat deformed, and it sits lower than where a normal kidney would be.

On the right side, Emmie has two arteries coming off of her aorta to feed the kidney. Typically you have one artery, that branches into two, one feeds top pole, one feeds lower pole. Both of these arteries are narrowed where they attach to the aorta. The surgeons will create a bypass that attaches to the aorta and connects to both arteries and passes over the narrowing.

The left side presents more of a problem. The left kidney has always been in question, since the very first MRI she had after her first heart surgery when it became clear there was something else wrong. They questioned that left kidney. It just didn't look right, but on a one year old its hard to tell what's going on because the kidney is so small. Now that she's 7, they can see it more clearly. There are 3 arteries branching off of her aorta feeding this very small kidney. The top pole isn't all there, it isn't formed correctly, and is functioning very poorly. It is being fed by a very tiny artery, almost string like. They were able to get a catheter in it and inject dye and see it flowing into the kidney, so they know there is something going on there. The middle is fed by an artery that looks to be fairly normal in size with little to no narrowing. The bottom is also being fed by an artery that looks fairly normal, with little to no narrowing.

The surgeons want to wait for the results of the kidney function test and the rennin samplings to come back before determining what to do with the left side. If the upper pole, which is badly deformed, is making a lot of the rennin, then they are proposing we take out the upper pole, and leave the lower half in tack, and do nothing with those arteries. So, she would have a partial nephrectomy on the left side. That thought is very scary to me, but if it will help get her down to 1 or 2 meds, and help her live a normal life, then I'm on board.

Psalm 139:14 I will give thanks unto the Lord, for I am fearfully and wonderfully made:wonderful are they works and my soul knoweth well.

We will hear from the surgeon next week as to what the results of the tests were, and what they decided to do with the left side. We will also get a definite surgery date. They are struggling to find an open OR that is available the entire day (6 to 10 hour surgery) and that both surgeons are available on that day as well. It could happen anywhere from the Tues before Thanksgiving til the first week of December. We have a tentative date of Nov 29th, but at this point, there is no open OR that day, however both surgeons are available.

Thank you for all your prayers. We can definitely feel them. We feel comforted knowing so many people are praying for our daughter and us as we walk through this next step on her journey. I felt at peace with the hospital, the surgeons and the nurses. I know God led us here, and I know its the right time. It doesn't make it any easier on my mommy heart. I still struggle with everything she goes through. I want to take it all away, I want to take it on myself. I want to go through this for her. If there was any way to trade places with her, I'd do it in a heart beat.

It makes me realize though, how much God loves us, to sacrifice his only son for our eternal lives. He traded places with us. Unconditional love. John 3:16 For God so loved the world, that who soever believeth in him, shall not perish, but have ever lasting life.

Continued specific prayer requests.....
1. That we get a surgery date soon!!!!
2. That the results of the tests are exactly what they are hoping for.
3. Emmie, that she will do well, and her surgery and recovery will be smooth.
4. For me as I still struggle emotionally with all of this.
5. Elise, she's struggling with Emmie's special treatment, at least that's the way she sees it, and its so hard to explain to a 6 year old.
6. Insurance will work out, vacation time for Tom will work out, and that my gym will stay steady even when I'm not there.

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