Moyamoya Surgery

Uggghhh!!  So I have been dreading this post and dreading reliving this extremely hard week of our lives.  But, I want it for my journal, so here goes.  On Friday, July 10, Evan went in to have his revascularization surgery for his moyamoya.  He was the second case of the day and had to be there at 9:30.  He was supposed to go back to surgery at 11:30.  But, as the time drew closer, they informed us that the surgery before ours ran in to some difficulties, and so Evan's surgery was delayed.  So we waited.  And waited. And waited some more.  But, we had all sorts of fun things to do.  Neighbors and friends and grandparents had sent him fun things.  And we brought our iPad to play on while he waited.  The hardest thing was that he couldn't eat or drink.  And that was sooooo hard.  Especially as the day wore on and on.

He finally fell asleep for a nap around 2 and slept for about 45 minutes.  When he woke up, he just wanted to lay there and watch TV.  Finally the surgeon came in and marked the site and then we went back to the outside of the OR with him.  We couldn't go in as he went off to sleep.  By this time it was 4.  Then Barth and I headed out to the waiting room.  The hours came and went, and eventually we were the only ones that were left in the waiting room.  Right after 10 pm, Dr V came out to tell us that everything had gone just like he had thought that it would.  He said that by the looks of his brain, you could tell it was blood and oxygen deprived.  But that everything went smoothly and according to plan.  From there, we went upstairs to the ICU where we were finally able to see him around 11 pm.  It had been a very long day!  They took him back for a CT at midnight and then we settled in for the night.  They came in every hour to wake him and do a neurological exam.  The morning came after very little sleep for either Barth or I.  About 4 am, Evan's blood pressure started dropping.  To help the bypass "take," his blood pressure needed to be high, but his wasn't even normal- it was too low.  They gave him bolus after bolus of fluids hoping to bring it up.  They turned off all of his pain medicine.  They gave him other medicines to try to help raise it.  They talked about giving him a transfusion to try to help.  It was very stressful.  When morning came at 6 am, they made him wake up and stay up to try to keep his pressure up.  It did help some.

The one nice thing about it was that we had the BIGGEST room in the entire ICU!  The place was huge!!  It was like the size of 2 rooms.  It was sooo nice.  And with all the big windows, it was cheerful which helped to keep my spirits up.

Evan was on lots of IVs and monitors.  It was crazy!!  He had an IV in each hand and an arterial line that monitored his BP constantly.  

I really did enjoy the views out our windows and the big clock tower right there!  

I loved the rolling hills beyond the parking garage for the ER.

He looked the best on the first day after surgery.  There was no swelling yet and the pain hadn't caught up with him yet from not being able to have pain medicine from his blood pressure being too low.

He even managed to give me a few smiles that day.

And what a sweet little angel when he slept.  This was probably his best day up until the day that he left.

I only left to go and eat in the evening around 8.  I loved this area outside that I could enjoy the fresh air and flowers.  It helped me to cope with everything that was going on.

The next few days were hard.  As in really, really hard!!  They wanted Evan to get up and sit in a chair and try to walk.  But every time he did, he would throw up and throw up and throw up.  It was terrible.  And the swelling started.  The next 2 days his right eye was mostly swollen shut.  We got some cool transformer dinosaurs for Evan that he could build while he was in the hospital.  His hands were so full of IVs though, that mostly Daddy built them and Evan held the pieces and helped as best as he could.

Barth went home every night but one when Evan cried and cried for him.  That night I went home.  I left at 11 pm and headed back by 7 am.  The nights before that were hard.  They woke him up every hour for a neurological exam.  And then he would have to go to the bathroom at the side of his bed.  But sitting up would then make him vomit and vomit and vomit.  And then he would finally fall asleep just to be woken up 15 minutes later and start that whole terrible cycle all over again.  When Barth would go home and come back, he always brought back cards that people brought over to him.  That was fun and helped to cheer him up!

He ended up being in the ICU for 4 days.  It was a very long 4 days.  We finally found out that the reason that he was so dizzy and nauseous was that he had a cerebrospinal fluid leak in his head.  The surgeon used a dural patch when he closed and that usually helps so that people don't have this complication, but it didn't help Evan.  He said that he could tell that he was having that because of the bump that was coming on despite the fact that the swelling was going on.  And the fact that any time he moved he got really dizzy and then would throw up or dry heave.  We kept trying to get him to eat things, but nothing sounded good, and the few things that he did have would just come right back up.  :(  Poor little guy!  He did a lot of watching TV and sleeping.  And he was very grumpy!  

They weren't sure why, but as the days wore on, he needed oxygen.  First it started just being when he would fall asleep, but by day 3 and 4, he needed an oxygen blow by (or having oxygen blowing right by has face) all the time.  And then, even that wasn't enough and he had to go to a mask.  But it was soooo hard to get him to do things.  His pain was still out of control and he was very agitated.  He even broke a mask and threw it at a doctor.  He was not himself and it made me sad.  We had several really good nurses while we were there.  Our night nurses were by far the best.  We had one not very good nurse on one very bad day.  She kept wanting him to take his medicine by mouth even though his pain team had said that since he couldn't keep anything down, they were good with him just continuing to take it by IV.  She wouldn't bring the medicine in when she was supposed to and then would badger him to take it by mouth, even though I kept telling her that I wanted him to have it by IV.  It was very frustrating.  At one point, when Barth was there, she came in and once again started to tell him that he really needed to be taking his medicine by mouth.  I told her that I had said all day that I wanted him to have it by IV and that she wasn't listening to me.  I told her that Barth would make the call, but that I had to leave before anything else happened.  I was that upset.  I walked out of the room and out of the unit.  Barth texted me a few minutes later that he was getting the medicine by IV.  When I came back to the room, but nurse apologized.  Thank goodness.  After that, she was good and did things the way we wanted them done.  I think that she was worried I would tell the charge nurse or something like that.  

Finally, at long last, we were able to go to the regular floor.  As time wore on, he no longer needed his oxygen.  His regular room was much smaller, but it had a huge, fancy TV that displayed, "Welcome Evan!" when you turned it on!  He thought that was pretty cool.  He had 2 different guy nurses while he was in the regular unit.  He thought that was pretty cool.

Those last 2 days of being on the regular floor were more fun for him.  He got to go to the playroom and do fun things.  He loved to paint at the easel there.  They also had a bucket of super heroes that he really loved to play with!!

Outside the playroom, there was a roof top deck where the kids could do out and play with chalk or bubbles.

One of the nights that we were there, they had some cool Star Wars guys come to visit!  Evan got to get his pictures taken with them.

The jawa challenged him to a game of pool and then helped him to win!  :)

I think that this guy was a bounty hunter, but I can't remember.  The Star Wars guys were making 2 different appearances that night.  One to the playroom and one to the teen room.  There weren't that many people that came to see them in the playroom (I'm guessing that more went to the teen room) but that just meant that they gave the few kids there a lot of attention!

Then Evan played a game of pool with the Tusken Raider.  The storm trooper kept tipping the tusken raider's pole so that he would miss and Evan would win!  :)  That was pretty fun too!

Finally, finally by our last day there, Evan was feeling better.  He was off of the oxygen at last!  He finally able to eat and keep things down!

Even though it was a hard week, and even though we won't even know if the surgery was successful for another few months, we are thankful that it is done and that Evan is healing and feeling better from the surgery.  He still gets tired so easily.  I'm hoping that as time goes on and that his blood flow gets reestablished, he will feel better. I'm glad to have this part behind us for a little bit.  Now, it's time to start school and keep a watchful eye on Evan for signs of trouble with the other side of his brain!

Buzz cuts

A few days before Evan's surgery, we decided to buzz his hair.  We knew that they would be shaving the area of his head when they operated, and we thought that it would look better if it was short before that happened.  Evan wasn't so sure about it.  He loved his long hair.  He always got lots of compliments on his beautiful blonde hair.

The thing that he did love though, was that as soon as Aaron saw his hair, he wanted his buzzed just like Evan.  It was such a tender thing.  I am so glad that I have such great kids.  They are a joy to me!!  It turned something that Evan didn't like at all, into something okay because his brother was willing to do it with him! :)

4th of July

We got to see a TON of fireworks this year!!  Every year, out little town does fireworks on the weekend before the 4th.  That weekend was the weekend that we went hiking and it was chilly.  It was also chilly at our house.  We went over by where Evan goes to preschool and parked in their parking lot to watch the show.  The city shoots them off right there close by.  It was a great show although it was awfully chilly!!

The city of Florence always does their fireworks on the 3rd.  We love to head over and watch them from the skate park right by their city pool.  It was a perfect night.  Not too hot, not too cold.  And the show was fantastic!!  We all enjoyed it!

At the last minute, we decided to take the kids to a Reds game for the 4th of July!  It was a perfect night!  Even though our team lost, the kids had a lot of fun watching the game.

As the night wore on, Evan and Katelynn (who were sitting by me) got a little on the bored side and decided to do silly things with Evan's hat.  Evan started it and then would say, "Take a picture of me!!  Do I look silly?"

And then Katelynn would say the same thing.  One thing that I noticed when I was taking pictures of just her cute little face sticking out from the hat, was just how much she looks like Ansley!!

I'm pretty sure that we entertained the people behind us fairly well too!!

Evan had a fun dip which turned his mouth green, and wanted me to take a picture of that too so that he could see if his mouth was really and truly green!  Goofy boy!

We wanted to stay for the fireworks, but that meant a late night for these little ones.  The fireworks didn't start till 11 I don't think.  Katelynn snuggled on my lap for a bit, but it wasn't until the music and the fireworks started that she actually fell asleep!  I covered her ears since she didn't like the big booms and I guess it helped her to fall asleep!

Here was our view of the game!  They honored the military that night which was pretty cool and one guy got presented his purple heart at the start of the game.

We packed quite a bit of fun into our short summer this year!  We all had a great time at the game!

Angiogram Day

The day of Evan's angiogram dawned bright and early.  He had the first case of the day (and we have since learned the hard way of all day waiting, that it is the best way to go) which meant we had to be there at 6:30 in the morning.  He was all smiles as it was time to get ready to go back.

He and I were being silly and taking pictures while we waited.  It took a few hours until he was done.  Everything went smoothly and then we got to go upstairs to see him.

Because he had to lay flat for another 4+ hours after the angiogram, and there were other risks involved, he had his recovery in the ICU at Children's.  They kept him sedated for a full 4 hours before turned that off and letting him start to wake up.  Once he woke up, he was pretty woozy, so they gave him some Zofran to help him feel better.  It did help.  They said that things were mostly as they expected for the angio.  The one thing that was not as expected was that the artery that they were going to use for his bypass (his superficial temporal artery) had already narrowed too much for them to use for the bypass.  That meant that instead of a direct and indirect bypass for his surgery, he would have a double indirect bypass instead.  That was something to adjust to.  I had done a LOT of research before this surgery and learned as much as I could about the moyamoya and the surgeries going into this.  I knew that the direct bypass is the best and most effective surgery.  I also knew that with the indirect bypass, sometimes it only worked for a year or two.  Sometimes it worked longer, but only about half of the time.  I also knew that Evan's only other option if not the indirect was a terribly long and invasive surgery that took 20+ hours.  So, we just trusted that the Lord was in charge and that the doctors would be able to help him the best that they could.

By about 7pm, Evan was finally feeling better and not so nauseous.  The last thing that he had to do before they would let him go home was to eat some dinner.  We loved that he could eat anything that he wanted to!!  He ordered donuts, pudding, chocolate milk and yogurt for dinner!  :)  That was my kind of dinner!!

Finally the time came that he was able to go home.  It took a while for us to get out of there because the resident on duty was no where to be found and he had to discharge us as well as the surgeon.  By the time that we finally made it home that night it was almost 10!  Thankfully, Weston and Brian are excellent baby-sitters and did a great job taking care of everything and everyone while we were gone.  We learned in the report later that the moyamoya had already started on the other side of his brain.  It just means that sometime in the near future that he will have to have another surgery on the other side to fix that side of his brain!

Look Up!

I realize that I have already posted this picture, but I wanted it here again to show the setting and to go along with an experience that I had while we were hiking through the state park back in June.  It is something that I want to be sure to remember.  It seems to me, that when you are in the thick of the hard trials, it is then that the Lord is able to help you and show you tender mercies and teach you important lessons.  That is why, although trials are hard, they are truly a blessing.  Such was the case on this cool summer day.  I was hiking with my little family through the woods.  Katelynn, being the independent 2 year old that she is, wanted to walk most of the time.  That meant that she and I were at the back of the group.  As we walked along, the way was so yucky and muddy.  There were rocks everywhere.  And tree roots sticking up along the way.  And just to the side, for most of the hike, there was a drop off, 20-30 feet straight down, that went straight to the creek there in the picture that was below.  As a mother I was worried.  The way was tricky.  I was worried for my children and called for them to be safe.  To watch where they were going.  My eyes were glued to the difficult path that lay before Katleynn and I.  As we plugged along the path, she and I, trying our best to not fall along the way, a thought came suddenly to my mind.  It said to me, "Kristie, look up."  As I stood to pause and look up, all around me I could see beauty.  Lovely green trees were sheltering me from the sun.  Trees surrounded me.  Beside me was a lovely stream that led the way of our path.  All around me was my family.  The sun was shining allowing me to see where I was going.  And at that moment, the thought came to me that this, this exact moment, this hike here in the middle of the woods, was very much like my life right now.   How closely it paralleled my life.  Here I was, trudging through what was the very hardest trial that I had ever had in my entire life.  Wondering if my child would live or die.  Seeing his symptoms worsen by the day.  Hoping and praying that the surgery would come before he had a stroke or worse.  My eyes were focused on the hardness of the path that lay directly in front of me.  It wasn't an imagined hardship, it was a real live, horrible, hard trial.  The way was littered with mud and stones and roots so to speak.  But then I realized if I could just look up, there was so much that my Father in Heaven was doing for me at this exact moment.  Just as I was sheltered by the trees all around me, so was I sheltered by angels, and friends, and family and those who loved me and my family.  Those who loved my dear, sweet little boy.  Who dearly longed to help me carry my burden and comfort and help me.  Everywhere I looked on my hike there was beauty.  From the creek to the falls to the trees.  Likewise, in my life, in the midst of my trial, there was beauty.  In the way others served my family so selflessly.  In the incredible blessing of being put in contact with someone who had walked the path I now faced.  In the meals, and the smiles, and the prayers.  Oh the prayers!  How I have felt those prayers.  In my hardest hours, I have been lifted and comforted by those fervent prayers and fasts that were offered and held in our behalf.  I testify that the Lord hears and answers prayers.  Just as that stream was there, guiding the way as we hiked, my Heavenly Father was there, right beside me, guiding my way.  And there was my family.  Right there beside me.  We were all going through it together.  And even if the way was hard, we were doing our best and enjoying it as best as we could.  I am so thankful for families.  I don't know how I could have gotten through the trial without them.  And even though this trial is not over yet, I know that the Lord will lead us through it.  That even if the trail ahead of us is muddy, and rocky and full of uncertainty, that if we can pause to look up and see the Lord's hand in all things, that we will see the beauty that is there to surround us.  To lift us up.  To embrace us.  To guard and protect us.  The Lord does not leave us in our most trying hour.  He is there.  In everything around us.  If we but turn to Him.  But look up and see that He has a plan.  That He is in all things- even the very hardest things.  I know that our Father in Heaven is mindful of us, of me, of my sweet little boy who has been through so very much and it is not even done yet.  I am thankful for this trial.  It has taught me so many things.  And for that, I am thankful to my Heavenly Father.  I love Him.  I put my trust in Him.  And hopefully, I can continue to remember to look up!

Staycation- Clifty Falls

 Saturday, the last day of our Staycation, we decided to go and see the state park where we were supposed to be camping at.  The weather had been so, so hot with a heat advisory (which is why we didn't go), but late Friday, a storm and cold front blew through.  The place was a little over an hour from our house, and it was chilly at home, but the forecast called for weather in the low 70's so I dressed the kids accordingly.  Well, we got there and it didn't even make it up to 65 that day!  It was a tad bit chilly!! (As is evidenced by the kids' faces in this picture!)  We had packed lunchables and ate those before we did anything else.  There was some sort of family reunion going on and so all of the picnic tables were full, but we snagged two benches by the park and ate our lunch!

 Katelynn fell asleep on the way to the state park, so she wanted Daddy to hold her for a bit till she woke up!

 After lunch the kids played for a bit while Barth and I looked at the trail maps to decide where we wanted to walk and hike.  We didn't want anything too hard because Evan tired so easily.  Katelynn LOVES to swing and had a blast with Daddy pushing her!

 Meanwhile, the other kids climbed up on the log cabin at the park.  I thought that it made for a cute picture!

 My kids all LOVE the cross bars! Here they were trying them out!  I think that this was the favorite thing at the park!

 Amber was almost all the way across and Evan decided that he wanted a turn.  I wasn't so sure how he would do, since he doesn't have much stamina.

 But you know what?!?  He did soooo good!  He made it all the way across!!!  He even did it a few times without falling.  Great job Evan!  After just a few times across though, he got too tired and worn out.  He would start out, but could only make it a few bars before he would fall.  He was so frustrated about that, but hopefully his surgery will help and he will be back to his energetic self soon!

 After that, we decided to head right down the trail close by to the fall overlook and then go on a trail from there.

 The main fall overlook was paved, but the trails weren't.  The trail that hiked to the actual falls was longer and we thought that we might do it later, but it ended up being so muddy and yucky from the rain the day before that we changed our mind.

 The falls across the way were sure lovely though!

 Nothing like playing on the walls before we started the hike!

 This picture makes me laugh!  There is Evan standing there being cute and then there is Amber in the back trying her best to be a monster and photobomb the picture!  :)  Silly kids!

 Time to head out and get this show on the road!  It sure was pretty!

 My favorite kiddos, ready to go!  Barth was checking out a short trial and we were waiting.  The trail that Barth was checking had a dead end and was blocked off.

 This picture does not do it justice, but it was sooooooo MUDDY!!!  Oh my!  And there were all of these huge puddles everywhere!

 The trail was kind of hard to navigate with all the mud!

 Amber and I were waiting our turn to get across this one extremely muddy and narrow pass.

 There were lots of bridges and things that we could look out over the creeks and see the water.

 If you looked down from the bridge, this is what you saw!

 Checking it out.  There was actually a pretty big drop there beneath them.

 Sisters enjoying the waterfall.

 Once you crossed the bridge, this was what you saw.  This is what we were standing over on the bridge.

 It was cool and beautiful!  The perfect day (minus the mud) for hiking!

 The other kids had a fun time.  We took a fairly slow pace which was good for everyone.

 Most of the hike was along this beautiful creek/ river with falls all along the way.  It was so pretty.  We will definitely have to go back!

 Some of the time Katelynn walked, and some of the time I carried her.  By the end, my shorts were covered in mud!

 It was a lovely afternoon.

Before we left, we took a few minutes to enjoy the quaint downtown area of Madison, IN which is right by the state park.  I loved their town hall with the mini state of liberty that I had to snap a picture.  I'm so glad that we were able to go on our little mini- vacation!  We had a great time as a family!  It was just what we needed!