Day 11: Macy's Journey with the Rex Shunt

Today marks officially the longest time I have gone without seeing my sweet McKenna.  For our last big liver surgery, we were able to get her to Chicago for a visit on the 11th day.  So this is also the longest my two girls have gone without seeing each other.  It is so hard!  I miss her more than I can even describe!  I also miss seeing my two girls, who are the best of friends, interact together.  Most of the time they absolutely love each other, but right now I'd even take all of the fighting for days just for all of us to be under one roof together again.  I miss Jeremy so much, and it's only been 2 days.  He's my rock, and going through this life without him just doesn't work for me.  So being apart in these circumstances is very difficult.

This is also the longest ICU stay we have ever had.  It's crazy to think that she has been in the ICU for a total of 8 days now.  I am not going to sugar coat anything.....today totally sucked!  We had a purely crappy day!  Overnight we noticed some blood/fluid stains on her hospital gown right on top of where her abdominal incision is.  Overnight it got worse, and by 7:00 a.m. it was literally seeping out all over and soaking her gown and her bedding.  It is fluid, but it is bloody looking.  It scared Macy so bad.  You have to remember this is a kid who just had internal bleeding that she started vomiting out back in December.  It was a very traumatic event, so seeing this would surely send her into a panic.  Well it did.  She kept telling me that she was so scared. 

To spare you too many horrible details of our day, I will just tell you the big picture.  Basically her CT scan showed that her abdomen is full of fluid.  Fluid is in there all around her organs.  Typically it can be absorbed and peed out.  Well her fluid found its way out of two areas in her incision.  The surgeons assured us that this is seen very often and they are not worried.  However, they were scrubbed into surgery today, and the solution in the meantime was to place a large dressing over it that could soak up all the fluid and keep changing it.  Well depending on how she was sitting or laying, the fluid would pool and start seeping out of the dressing and run down her body.  Remember, it looks like blood.  Then we would have to call the nurses in to change it, and Macy would have to see all of the bloody fluid.  This happened every 20-30 minutes.  Finally I had it!  Dr. Superina is out of state through the rest of the week, so I demanded to see one of the other surgeons that I know.  He came to our room about an hour later.  I basically told him that this solution is not acceptable.  She is 13 years old, and it is scary for her.  Not only that, but she couldn't even walk or do anything today due to the huge dressing and leaking.  She was afraid to sit up straight to eat because it would leak faster.  Fortunately he listened to me, and came up with a solution.   He and another surgeon removed her some of her steri strips to find the sources.  Like I said there were two areas.  They are located on the vertical line of her Mercedes symbol incision.  He then had the nurse apply some pressure to keep the fluid in, while he cleaned and applied different types of adhesive and skin protection around the area.  He then applied an ostomy pouch to her abdomen to cover the two areas that are seeping.  They are now draining into the bag, and has to be drained every 2 hours by opening the bottom of the bag.

He said the fluid will eventually lessen and lessen, and then stop completely.  I asked how long and he wouldn't give me a timeline because he said if he did it would be wrong.  I then asked if he was talking weeks or days, he said days.  So that is reassuring.  He said the more moving and activities she does the faster it will drain.  He also started her on a med that is similar to Lasix, but works differently in the body to remove fluid.  Not ideal what is going on at all, but it's at least a solution.  Her abdomen is already starting to look smaller. 

So the fluid filled abdomen and her breathing are the two things we need to focus on to get out of here.  She was on oxygen a lot today due to all of her anxiety.  I am praying tomorrow is a better day!

Don't let my crappy day fool you though, we did have some small victories as well.  The most important of all.........her CT scan showed that her Rex Shunt is open, flowing, and functioning!!!!!!  Dr. Superina messaged to say that it looks great!  Yay!  That is what we came here for!!!!  That is what will make all of these challenges worth it in the end.  Also, they have transitioned her fully to Coumadin.  She is at a therapeutic level and she was able to stop the IV Heparin.  Another happy thing is that Macy did eat dinner tonight, after struggling to eat all day due to her fears of the fluid leaking.  Keep eating Macy!  We need to get her off of the TPN nutrition. 

In other great news, our insurance approved us having a home monitor to monitor her INR levels.  INR is what you check to make sure that your Coumadin is at a therapeutic dose.  Last time Macy was on Coumadin, we went daily for the first 2-3 days, then every other day for a couple of days, then once a week for a few weeks, then every other week, and then finally once every 3 weeks for labs checks.  We had to drive to Riley, and Macy had to be stuck every single time.  This home monitor allows us to finger prick her, check her level, and then let Dr. Superina's team know so they can adjust her dose.  Just think, we can take this wherever we go like on vacations or to the lake!  It is going to be so nice to monitor this from home without heading to the lab all of the time.  They will call us in 7-10 days to set up a time for a nurse to come to our house to train us.  I am beyond excited for this! 

Small victories, right?!?!?!  That is what I am holding onto.  Tomorrow is a new day! 

Today I was ready my daily devotional, and it really spoke to me.  It said, "To find joy in this day, you must live within its boundaries.  I knew what I was doing when I divided time into twenty-four hour segments.  I understand human frailty, and I know that you can can bear the weight of only one day at a time."  One day at a time, that's exactly right!

Please continue to pray for Macy's overall health! Please pray that she continues to eat her food well, and can be taken off of the TPN.  Please pray that her pain continues to get better each and every day.  Please pray for healing of her abdomen, and for the fluid to reduce and stop seeping through her incision.  Please pray that her lungs can continue to heal, and she can be completely oxygen free soon.  Please pray that we can get Macy out and about tomorrow with some walking practice and wheel chair rides.  She is pretty down right now!  Please pray for me to remember to take one day at a time, and to stop worrying about a timeline and more about Macy's healing and the timeline that her body needs.  Thanks again for all of your love for my family!