Bumps and Boulders

Thankfully we are strapped in for this ride we are continually riding.  Not only are we strapped in, but we are holding on tight to each other.

Don't worry, Macy is doing well.  However we got a phone call from Chicago last week and some things have changed.  Dr. Superina's nurse, Joan, told us that he wants to perform another surgery 2 days prior to her Rex Shunt.  This surgery will take place in Interventional Radiology.  Basically she has some large vessels around her portal vein area that blood is running through.  His concern is that when he takes the vein from her neck and places it as her portal vein, blood will not run through this new vein properly if it can escape through these other large vessels.  So if they go in a couple of days before and close off these vessels, then when he puts the new vein in place as her portal vein, the blood with properly run through the new vein without an escape path.  While they have her in for this procedure they will get imaging in her neck area to locate the vein pathways and designate the vein they will use for her new portal vein.  We will then stay inpatient until her Rex Shunt surgery 2 days after that.

This is not ideal, and it's definitely what we expected.  However, if Dr. Superina feels that doing this will give her a better outcome with the Rex Shunt surgery, then we are supporting this. It broke my heart to tell her that she has to have this additional surgery done, but she took it very well.  It's so hard for me to know how she truly feels.  She just kind of brushes things off, and moves on.   However, I keep thinking she should feel more emotions and feelings than she shows.  I can't ask her continually though and hover over her.  If she truly isn't worried, it might ignite fears in her.  In contrast, I don't want her to bury her fear.

It's not just her on my mind though.  There is McKenna too!  Apparently right before this last surgery Macy had, McKenna said something to Jeremy about us "leaving her again".  We dropped her off at school that morning and Jeremy picked her up at school when it was over.  He spent the whole night with her, and even took her back to school the next morning while Macy and I stayed at the hospital.  When she got home that day, Macy and I were already home.  I was only away from her for about 30 hours.  I guess that is her perception though, and it makes me feel horrible.  This next time, we will be leaving her for possibly a week before we see her again.  We'll be in a completely different city and state.  It's just hard, and weighs heavily on my mind.  We are okay though, and will pull it all together to support each other and mainly Macy.

We are planning some fun weekends the next few weekends!  For Valentine's Day we put together four fun experience gifts for the girls.  They are just some fun things that our family can do together before surgery.  The girls are excited because they get to open a new "gift" envelope each Friday night.  We are hoping we all stay healthy and can enjoy this relaxing time together over the next few weeks.

Please continue to send prayers our way!  We'll take prayers for health, a fun next month, calming minds, and a successful upcoming surgery for Macy.

30th Surgery Complete!

Wednesday was the 30th time Macy's has been under general anesthesia.  She, once again, faced it like a champion.

We had extremely high hopes that there would be no varices.  Especially when they came to get us 36 minutes after taking her from us, and said that the doctor was ready to talk to us in one of the conferencing rooms.  The surgery itself only took about 25 minutes or so.  Crazy!!!!!  As we sat waiting to see our doctor, our favorite family care nurse stopped by and said that Dr. Molleston told her to tell us that we were staying the night.  Bummer!  That's when we knew banding took place.  However, we are so excited to say that only 1 varix needed banded.  Dr. Molleston actually said that if we didn't have surgery planned in Chicago next month, and we were needing to do more scopes and possible bandings that she would've told us that she'd see us back in 6 months!  So we are very happy with how things looked, and that there is a very low risk of a rupture in our future.

When we met in the conference room, we had a very interesting conversation with Dr. Molleston.  It began by her telling us a story about a study that took place with children.  There were 3 different groups.  It involved children sticking their hand in an ice bath and measuring pain level. One group of children were distracted, one group overly-comforted by parents during the process, and one group left as the control group.  The findings were that the children in the group who were overly-comforted by their parents had the highest pain level.  She then said something to the effect......"you two have this child, who has been through so many surgeries, so much pain, so many terrifying experiences, yet she has maintained the most positive attitude and lives the most "normal" life she can.  She sees herself as a completely normal child, and has managed to overcome it all.  What is it that you two have done as parents to help make her that way?"  Knowing that I was a teacher, she asked if I had students complain often about stomach aches and illnesses.  Yes, especially with kinders.  So how is it these seemingly healthy children complain about the simple things like stomach aches, yet Macy lives life to the fullest and has been through more than most people in a lifetime?  It was the first time, we have had a doctor pose this question to us.  I wasn't quite sure how to answer it.  We went on to chat a little more about Macy, and our parenting.  It was very thought provoking, and very complimenting. 

Macy and I stayed the night.  We watched some Animal Planet and HGTV.  She is now addicted to Pinterest.  We spent some time watching how to draw videos on Youtube, and attempting to be artists.  Then we finished our evening with a chick flick movie night.  She is feeling much better this time than last time.  One banding vs. 4 bandings makes a big difference!  She was only allowed to eat liquids until this morning, so she ate about 5 cups of ice cream in the course of 24 hours, lol.  She progressed to a mechanical soft diet this morning, and is able to eat normal as she tolerates it.  Tonight she had a grilled cheese sandwich and tomato soup, and did great.  She's heading back to school tomorrow.  She's bound and determine to go back mainly so she can attend the Riley Dance Marathon after school tomorrow night.  It's obviously a cause close to her heart!

The next step is the big liver surgery in Chicago on March 18th!  We are excited and scared at all the same time.  However, we know it's necessary and time to finally do it.  You can read about it here if you are interested.

https://www.luriechildrens.org/en/specialties-conditions/portal-hypertension-program/


Thanks for continually following Macy journey, giving her and us encouraging words, and constantly sending prayers our way!