We Are Home!

Macy is doing great, and we are so happy to be home!  Especially after our sleepless night last night.  Hospital sleeping is always difficult, but last night we really struggled.  Part of the problem was that they had placed her IV in her hand, and then due to long tubing, they had to wrap it all up.  She had a Popeye hand and arm.  It made it very difficult to sleep and get comfortable.  I have no idea what my problem was, probably just being attentive to Macy.  I was back and forth between the couch and recliner in our room.  We are beyond excited to get to sleep in our own beds tonight!  Woohoo! 

Things went very well with the procedure.  Let me first go back and talk about her last surgery......if you remember it was emergent.  They needed to get in there and stop the bleeding.  They weren't able to get in and clearly look at any other areas since they had one goal. 

This time was different.  They were able to get in there and see a lot of her GI tract.  They took a total of 12 images.  Many were of her varices, but some others were her connecting areas between her esophagus and stomach, and stomach and intestines.  They even got some images of her villi.  Healthy villi is important, and it shows that we are managing Macy's Celiac Disease well.  It looked good! 

Macy had 4 varices that needed to be banded.  Jeremy and I, as well as Macy, were a little shocked when we heard that. After hearing all about what they did, and all of the imaging they took my first concern that I voiced was, "Last time you only banded 2 varices, this time there were 4.  So does this mean things got worse faster?"  The answer is no.  So last time she came in, she was actively bleeding.  She had lost a lot of blood, therefore the veins in the esophagus were smaller (kind of deflated) from having such a large rupture.  So likely, they were already there.  Like I said above, the goal last time was to stop the bleeding, and that was all.  Last time they saw multiple red areas as well, which are areas that are at a higher risk of a rupture.  So things looked pretty bad last time.

Varices are measured on a Grade I through Grade IV scale. Grade I being the least worrisome.  Macy had 3 Grade II varices, and 1 Grade III varix.  The Grade III had a red area.  Once they banded them, the veins pushed back and looked great.  So overall, things were not worse. It is actively being managed and maintained until we can get to our big surgery in March.

Due to having the 4 areas banded, Macy has been having some discomfort down the center of her chest area, but that can be completely normal for a few days following the surgery.  She obviously had a sore throat from being intubated during the procedure (breathing tube).  She was on a liquid diet all day yesterday, and finally got to start eating thicker food this morning.  She is technically allowed to eat a normal diet, however we are keeping it softer for the next few days, and we are continuing to avoid chips and popcorn (anything really hard or sharp). 

We go back in 1 month to do it all again, and then we have officially scheduled her liver surgery in Chicago for March 18th (our first day of spring break).  Luckily we have 2 weeks of spring break, so hopefully we can spend the first week in Chicago and relax at home the 2nd week. 

Macy got a little emotional last night about all that is coming up, and all that she has been going through.  She usually doesn't get too worried or worked up, but the older she gets the more she understands, and this is a very difficult time.  She told me that she wishes she didn't have to deal with all of this, and that she wishes she was just a normal kid. Not many truly understand how she is feeling...I don't even understand.  Yes, I am going through a lot right now, but it's as a parent. It's not happening physically and emotionally to me and my body.  Even an adult who is going through a lot cannot understand how it would feel to be an almost 13 year old girl who has to spend time being limited from activities, in and out of the hospital, watching life go by at times.  Watching other kids at school worrying about the simple things in life that 13 year old normally worry about.  She has so many BIG worries in her life to worry about.  I try my very best to help that worry and reassure her, but it doesn't take away what she is going through.  My heart breaks for her!  We obviously can't travel right now, but I can't wait until we can just get away from this stress and take her on a special trip as soon as she is better!  She deserves it so much! The crappy winter weather doesn't help with all of our moods either.  Bless this sweet girl, and all that she is.....the smile she shares through the pain, the ability she has to overcome the hardest things in life, and her continual concern for others rather than herself.  She is AMAZING! 

Please continue to pray for her!  Pray for safety each and every day to get us safely to our next scope, and then to our big surgery in March.  Pray for her varices to go away.  We want a clear scope when we go back in February.  Please pray for The Lord to calm Macy's concern and worry.  Thank you for always checking on us, for all of your words of encouragement, and for your continued prayers!