Thursday, October 27, 2016

Surgery is set!!!

Emmie's surgery is set for Monday, November 28th. 

  We talked to the surgeon, Dr. Coleman, this week. The test results are in, and they were able to get all the information they needed from those tests. Here's what they found: both kidneys are working evenly and the rennin is coming from both kidneys. However, they do believe that most of the rennin on the left side is coming from the upper pole, which is the deformed portion that is being fed by the tiny string-like artery.

Dr. Coleman and her surgical partner, Dr. Eliason, set down with a pediatric urologist, Dr. Park, to discuss the findings of the tests. Dr. Park is recommending that we remove the upper pole of her left kidney. It is functioning, just not very well, it's deformed, they are not sure it's all there, it's getting very little blood flow and it's secreting lots of rennin. They also feel like the lower left is functioning very well and getting great blood flow, so they do not think anything else needs to be done to her left side. 

So her surgery will take 6 to 10 hours. They will do the aortic patch and the reconstruction of the renal arteries on the right side, then remove the upper pole of the left kidney. If you need a refresher on what they are doing see my previous blog post where I explained in detail with pictures what was happening. 

We now have a 3rd surgeon involved in Emmie's case, Dr Park, who will remove the portion of kidney that needs to be taken out, and Dr. Coleman & Dr. Eliason will do the rest of the surgery. While the doctors are quite confident in the prognosis for Emmie, they do not believe she will come off of all her meds. They do think they can get her down to 2 meds though, and we would be very happy with that! She now takes 6 meds, and at one point in her life she was on 9. So 2 sounds great. However, we also know the Great Physician can completely heal her body, and how awesome would it be to see her medication free!

We ask that you continue to pray for us and Emmie as surgery approaches. It's nice to have a date and be able to plan, but it's also stressful and the anxiety tends to build as we get closer. We ask that you pray for these 3 surgeons. That God will be their guide for steady hands and minds during this long surgery. Please continue to pray for our other children, especially Elise. She's too young to really understand. I am hopeful that she will "get it" when she gets to visit her sister in the hospital. There are lots of details to work out for kids, pets, jobs, finances. Just pray for all those things to work out smoothly.

Lots of people have asked how they can help, or if they can get Emmie something. As far as help, we are working on things that we will need. God has already been so good to us in providing just what we need when we need it, but I know things will come up. For Emmie, if you are interested in getting her a gift, let me know. I can give you ideas. We have also put together an amazon wish list of things she likes, and can do while she isn't allowed to move around much! She will be in the hospital for 2 weeks and out of school for 6 weeks. Once back at school, she will not be allowed to go to gym class or recess for several months. So, lots of down time for her! I can email the wish list to anyone interested, but please do not feel obligated in any way. 

Thank you for reading, and thank you for praying us through this difficult journey!!!

I've been co-leading a GodFit group at our church since August. A wonderful group of ladies, working through a study on getting our bodies ready for service. It's all about being spiritually fit, mentally fit and physically fit to serve. When I agreed to help lead this study, I had no idea any of this with Emmie was going to happen. But the week we were at MOTT for testing, I was reading week 4 of the devotion series, and it was titled "Simplicity: faith without worry or distraction". My first thought, was ya right! I'm totally distracted and worried! This isn't good timing! But God knew what was ahead for me when I started reading this book. His timing is always perfect and he knew I'd be setting in a hospital room with my daughter when I was reading it. So, rather than skip it, which I almost did, I read it. Two of the verses in that weeks study really spoke to me.....

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

"Cast all your anxiety on him because he cares for you." 1 Peter 5:7

Here's a little blast from the past for you. Emmie the morning of her very first surgery. February 4, 2010. 12.5 months old. Also, the day Elise was born! That's another "God's timing is always perfect" story I'll have to blog about later!

And here she is almost 3 weeks later. The first time she got to leave her hospital room. The first time I got to do something somewhat normal with her in 3 weeks, which was simply a ride around the halls of the hospital in that little red car she loved so much! With cords and monitors in the engine compartment, we strolled the halls, and she was so happy!!

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.

Friday, October 14, 2016

Back to Reality.... and surgery date

We had a great little get-a-way this week. Me, the girls and my mom headed to Fort Walton Beach to my aunts house. I can't thank my mom enough for making the trip with me and I can't thank my aunt enough for hosting us. We got to play with our cousins and some friends, enjoy the pools and a lazy river, look for sea shells and build sand castles. Some much needed stress relief for me and Emmie. Unfortunately, we headed back to reality on Thursday. I guess I can't whisk her off to a Caribbean island and pretend she's not sick, because that's what I really want to do. Instead, I was greeted with a large packet of information on MOTT Children's Hospital. It is really happening, ugh! To be honest, my gut reaction was to vomit, and burn it :(

Emmie will be admitted to MOTT Children's Hospital Sunday. She will undergo a few tests on Sunday & Monday, and should be released on Tuesday. She will have a nuclear test of her kidneys, which shouldn't be a big deal. She doesn't have to go under anesthesia for this. Should take an hour or so. The second test is an angiogram of her renal arteries. This is a little more difficult for her. She will be under anesthesia. It's done in the cath lab. They go in through her leg with a catheter and inject dye into her renal arteries. They want a very clear picture of what they are dealing with in order to decide on the best course of action. She will need to be monitored after this test, so she will stay the night, and we will come home sometime on Tuesday. 

Right now her surgery is scheduled for November 29th. (It could possibly change after they see the images of the angiogram) It will be a 6 to 10 hour surgery. The first few days after surgery will be rough for her, and for me. She will be in a lot of pain, and I won't be able to take it away. The recovery should get a little easier as each day passes, but it will be long and hard.

Specific prayer requests we have right now.....

1. That the testing this Monday will go well, no complications, and Emmie will not be too anxious.
2. That we will be able to work things out with our insurance. Right now they are telling us the hospital is out of network, which means that 30% of the bill will fall on us.
3.  That my anxiety level will come down a little. I've not been this emotional about surgeries and procedures with her for a very long time. I know it's due to the difficulty of the surgery and the recovery, plus its a new hospital, new team of doctors, new everything. We've never done a surgery like this, I have no idea what to expect from Emmie afterwards. I had grown "comfortable" so to speak with Riley, our team of doctors and what to expect out of Emmie, this feels so foreign to me and I'm really struggling with it. As I struggled this evening even writing this post. I began searching for verses of comfort. 1 Peter 5: 6-8 says "Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Satan is preying on my weakness right now. 

4. Pray for the surgeons. We are handing our daughter over to them and we are trusting them. I pray for a clear decision on what is the correct procedure, steady hands and focused minds during surgery.

I know whose daughter she is. She is a Princess. She is the daughter to a Heavenly King. He goes before her, he will be with her, and he will never leave her.  

Friday, October 7, 2016

Who knew you could be so emotionally connected to a doctor??????

Well, I wish I had more to report, and better things to report.....

The latest on surgery and testing....... Emmie will have a nuclear scan of her kidneys and an angiogram of her renal arteries the week of Oct 17th. We do not have the exact date yet, however we do know that we will need to be in Michigan 2 to 3 days for testing that week. Surgery should still be on track for the middle of November. I am hoping to confirm all dates early next week.

Today, Emmie had a routine check up with her nephrologist, Dr. Leiser (kidney doctor, but also her hypertension specialist). When we arrived, I was told he was on a leave of absence, and we would be seeing someone else. I know due to privacy laws and such, they are not allowed to give me any more info than that. All they could say was that he was on a leave of absence and they were not sure he was returning. I'm sure most of you reading this have not had a child with on going medical needs, but those of you who have will get where I'm coming from, and hopefully those of you who haven't had to deal with this, will understand too.

The first time Dr. Leiser saw Emmie, she was 2 days post heart surgery. She was 1 year old. She was still on a vent. We didn't know if she was going to live or die. At the time, I had no idea the level of bond we would make with this man. He became her hypertension specialist. He controlled and adjusted meds until we found what would work. At times in Emmie's life, we've had to see him weekly, biweekly, monthly. During that time, Emmie was having blood work done 3 times a week. We were marking her body with a sharpie to keep track of where the last draw was so we weren't using the same arm or leg too many times. I've made lots of late night calls to him over high blood pressure, and kidney function. He's reassured me, he's comforted me, and he's cared for my daughter like she was his own. I believe he loves her as much as I do. I believe he has stressed out over her blood pressure like I have. I know he has looked through her medical records, studied over them, and put in countless hours of work to make sure she was receiving top notch care. I've said for years that he is by far our favorite doctor! (Not that there aren't others we love as well!) But we have developed a bond with him that I can't explain. He's been through EVERYTHING with us. He takes his time to explain things to me. He would even let me ask my list of questions that I had researched on WebMD. I joked with him, that I do in fact have a WebMD degree! HA!!! He would let me try to take her off of meds, knowing full well it wouldn't work. He'd tell me "You can take her off hydrolazine, and call me in a few days to let me know her BP numbers." And of course, I would have to call him and say "You were right, I had to put her back on it." I love that he gave me a say in her care. I love that he treated me with respect, he talked to me like a human, and he cared. We have taken him gifts, food, and had tons of conversations about all kinds of things other than Emmie and medicine. I know about his kids, his mom, I know he's Jewish.

I did not realize how much I care for him as a person until today. I just started crying when I thought we might not see him again. I needed to talk to him today. I needed his reassurance that going to Michigan is the right choice. I needed his smiling face, and I needed the one doctor who knows my child inside and out to tell me its going to be ok.

I have no idea what's going on with him. They did tell me "He's ok." So, I guess that means he's not sick, but I'm not sure. I'm asking for my prayer warrior friends and family to pray for Dr. Leiser. Whatever is going on in his life that would cause him to take a leave of absence, means he needs our prayers.

While we are connected to and trust these doctors, I also know that The Great Physician know's my child inside and out even better than Dr. Leiser. He knitted her together in just the way he wanted her. While I do not understand why, I know it is a part of his plan for her life, and mine too. I pray daily for wisdom as we make difficult decisions. I pray for the doctors that God puts in our paths, and I'm asking you to do the same!

Thanks for hanging in there with us! We can not do this alone!! Here are just a few of the many pics we have of our favorite doctor. Most of our pics are of him checking her blood pressure, because for the longest time, she wouldn't let anyone else do it! Just him! I personally think he looks like a skinny Albert Einstein. :)