Here's The Plan.....

First of all we want to thank everyone for all of the prayers during our recent visit to Chicago.  We've had 2 venograms before.  The first was in 2008 to make her Abernethy Malformation diagnosis.  At this one, they told us that her portal vein was absent.  They also proceeded to tell us that she would need a transplant, and that she would need one sooner rather than later.  I knew deep down, that The Lord had different plans for Macy.  From 2008 until 2015, I searched for answers.  Along the way, I met a mother who started a blog to find answers for her daughter, also diagnosed with Abernethy Malformation.  She found an answer...his name was Riccardo Superina.  I talked with her multiple times about the repair he had performed on her daughter.  I knew that when the time came, he was my man!

In 2015, multiple specialists caring for Macy expressed concern for her health.  We all collectively decided it was time to do something.  Our amazing GI doctor at Riley sent us to see Dr. Superina in Chicago.  We first made contact in 2015, and planned for another venogram in April of 2016.  At this venogram, they made the amazing discovery that Macy did have a portal vein.  This was one of the most amazing blessings that Jeremy and I have ever received in regards to Macy's health!  We rejoiced and cried at the same time!  Her portal vein was the size of a thread, and was carrying no blood to the liver.  The blood was going around her liver through another area (a shunt) that was not supposed to be there.

The decision was made in 2016 to perform a surgery to repair her liver.  In a matter of 18 days, Macy had 2 surgeries, was completely paralyzed for 5 days, and spent weeks in the ICU.  We then spent months recovering, as well as 9 months on a therapeutic dose of Coumadin (blood thinners).  During those 9 months, Macy had to have weekly, bi-weekly, and monthly labs draws.  We finally came off of the Coumadin in January 2017, and had another CT Scan.

Unfortunately the CT showed an enlarged spleen and many small veins running to her liver rather than 1 large vein (portal vein).   This means that not enough blood is getting to her liver, and is backing up into her spleen.  This was causing her platelet count to drop as well.  Basically, Macy was in portal hypertension.  The only fix is another surgery called the Rex Shunt.

This brings us to our most recent venogram.  This venogram was to check the veins running to the liver, and check the pressures in the portal vein area.  During surgery, when they went in through her neck, they were able to get some information, but not all the information needed for our doctor.  Therefore, they had to unexpectedly go in through her stomach and poke into her liver.  This causes an increased risk for internal bleeding.  The worst part is, they still didn't get all the info they needed.  They had to watch Macy closer and longer than the original plan and check her hemoglobin levels multiple times before they could send us home.  We finally went "home" to the Ronald McDonald House.  She was actually doing way better than any previous venograms.  We were able to attend a party on the 4th floor at the house to celebrate the 5th year anniversary of Ronald McDonald House location that we stay at.  Ronald McDonald was there, and they did face painting.  If Macy was feeling any pain, it definitely took her mind off of it.  So we left Chicago with no answers, and we had to wait for the phone call.

Waiting 2 weeks to find out the plan is very difficult!  I have to admit that I broke down and called twice, once last week and once this week.  Those that know me well, know that I live and breath Macy's medical life.  It consumes me......and it has for 11 years.  Things gets easier sometimes, and other times they get more challenging.  The last year has been a challenging one.

The news we received today is nothing short of a miracle.  As I said previously, Macy has been in portal hypertension, with blood backing up into her liver.....basically in need of another surgery.  The venogram was to basically confirm not IF, but WHEN the surgery would happen.  We knew we were going downhill.  WELL, the venogram showed blood flowing to the liver, and flowing with the correct pressures.  A normal pressure is 1 to 5, and Macy's is 3.  She is no longer in portal hypertension!  Macy's ammonia levels and her platelet count is in normal range!  Our surgeon's office told us "she appears to be turning a corner".  We do labs in 3 months to make sure we are still heading in the right direction, and will return for a visit (for labs and an MRI) in 6 months!  This is the most fabulous news ever!  We are so thankful for this break for our family, particularly for Macy!  She is so happy to continue her normal summer being a carefree kid!    

It's Summer Break....Woohoo!

We are into the swing of summer!  Well, I really hope the last week isn't a sneak peek of our summer.  Macy was sick, and it was NOT fun.  The illness really caught us off guard, and took a lot of work to get her back to "normal", but I think we are about there!  Yay for that!

So our summer started off in normal fashion, with a trip to the lake.  However, the weekend ended with us packing up within an hour, and driving home with a very sick girl.  No use in going into details, since I think we are on the mend.

So let's highlight some of our positive things from our first week.  We went to ENT for our tonsillectomy follow up, and Macy looks great!  They want to repeat a sleep study on her since her sleep study came back severe.  They said we could do that before school starts back up, so we will shoot for a day in July.  McKenna had two softball games this week, with the second being her first tournament game.  They won!  So we move onto Tuesday to play!  Yay for the Pink Panthers (yes, that is the name the girls came up with for their team).  She also tried out for All Stars yesterday.  She was trying out against all girls older than her....many 8 and 9 year olds.  She did a great job, but I will be surprised if she makes it.  Next year she will be one of those 8 year olds, so I think our odds are much better.  She had fun doing it though, and I was so proud of her!  We ended our first week with going out to dinner with some great friends, and heading back to their house for a campfire and smores.  It was a blast!

On another positive note, Macy completed the Red Cross Babysitting Course, and is now an official babysitter.  She even had her first job on Wednesday!  It may have just been for her sister, but it went very well!  I had to go into work for a professional development, and they were alone for about 4 hours.  They sent me a couple of text messages, and I sent them a couple too.  It went great!  Now maybe Jeremy and I can get a much needed date night.  We still haven't celebrated our 14 year wedding anniversary.  YES, 14 years!  It seems like just yesterday!  What an AMAZING 14 years!  When I say AMAZING, I mean AMAZINGLY good, AMAZINGLY challenging, AMAZINGLY scary, AMAZINGLY fun, and AMAZINGLY blessed!

So now, we move onto Chicago.  Our Chicago visit is this week.    Macy will undergo another Venogram to take a closer look at her pressures in her portal vein/liver area.  I honestly have no idea what to expect because it's about impossible to predict what is actually going on in there.  If liver pressures are high and concerning, she will face another liver surgery.  If pressures are not where we want them to be, but not too concerning, we will continue to wait and watch.  If pressures are good, we will be good to continue as is, and leave her liver to continue in the current state.  We pray for good pressures.  I may not know anything for about a week.

My parents are returning this week from a 15 day vacation in Tahiti.  Surprise, but no surprise they have made it happen to fly into Chicago, and stay with us to support us during our time in Chicago. They had plans to fly in there originally, but had different plans on actually returning home.  We don't know what we would do without them!  They are amazing!

After we find out what the plan is, we can start to make some summer plans.  If those plans are surgery, we will make it happen and still try to enjoy ourselves as much as we can.  If those plans do not involve surgery, then we have SO MANY things we want to do!  McKenna has a scheduled soccer camp, and Macy has hopes of continuing her horseback riding, and attending her first golf camp.  Please pray that we can be "normal" this summer, and my girls can do "normal" things that kids do in the summer.

I look back at my summers and remember lazy, fun days.  Just hanging out with friends, camping, exploring, etc.  I want my girls to have those memories, not memories surrounding hospital life.  We spent our summer like that last summer.  We need a break!  Please pray for this!  Please pray for us!  Please pray for Macy on Thursday!!!!!  Please pray for a fast recovery and good news!

Thanks for checking in on us!  I will keep you posted!

Here are some pictures highlights from our spring.

McKenna ran the Fast Flash....her first 5K.  She finished 2nd in her age division.  Her time was 29:01.  It was a 9:22 pace.

Macy danced with her Folk Dance Club at the International Fair.  Great job Macy!

Both of our girls earned awards at school, and had great academic years.  We are so proud!

Here's McKenna in softball mode.  She had to pitch out last 2 games since our pitcher was on vacation.  She did great!  I was so proud of her for stepping up to do that even though it was not her normal position, and she didn't feel very good at it.   

Macy's girl scout troop spent over a year collecting plastic bottle caps.  They put in an amazing amount of hours collecting and sorting.  They were able to have multiple "Buddy Benches" built from those caps, and dedicated 3 of those benches at our school!  Way to go girls!  They will be recognized in a few week at the Girl Scout Banquet for receiving their Bronze Award.