Day 17: Life at RMH

We had our triple appointment today. Macy wasn't allowed to eat prior to her ultrasound, so that was torture for her. It is also the last thing we want for someone who has lost so much weight. Lab work went well, as well as the ultrasound. Then came the meeting with the main man!

Her labs were all good. One surprising lab for us to see was her ammonia level.  Her ammonia levels prior to surgery were in the 120s. Last week they had already dropped to 65, and today it was only 37! This is amazing!  Her ultrasound looked good as well. He said she had good blood flow in her liver.  He explained that there are three types of kiddos following this surgery. 1. These kids end of having a completely normal venous system, in which all blood flows properly through the portal vein.  2. These kids have the blood flow, but the route is still somewhat abnormal.  However, their bodies adjust. 3. These kids develop portal hypertension, and need some revision work.   He said he can't predict which one Macy will be, and that only time will tell. Let's pray for kid 1 or  kid 2.

He also went on to say that her INR (Coumadin level) dropped, and they believe it was when they had us hold the Coumadin on Tuesday night. So we are back to giving her the 5mg tablets over the weekend.  Despite all of this, he thinks we can go home! YES FOLKS YOU HEARD ME RIGHT! We can go home. They can't get over how well she is doing, and how far she has come so quickly. Welcome to Macy's World...nothing will stop her!

They want to do more labs on Monday, so we will do that at Riley.  We will probably do 1-2 more days of labs next week as well, and will continue that until we start getting her Coumadin levels continually at a therapeutic level.  We will follow-up with GI at home, Dr. Molleston, in July. Are you ready for another shocker...he won't see us back for 3 months!!!!!!!!

We are beyond shocked that we have been in Chicago for 18 days (17 surgical/recovery) , Macy has faced 2 very complex abdominal surgeries, 10 days in the ICU, 4 days on the floor, and 3 days at the RMH, and we get to leave. It was supposed to be 30 days, most kids take 30 days. Macy took 17 days! Go Macy!

She is by no means back to normal. She is still sore, weak, and tires easily. We are asking for no visitors as we adjust to our first few days at home. She doesn't know how to limit herself, so we want to minimize the temptation for a few more days. We are looking forward to more healing at home! I will continue to post about how she is doing, but I can't promise it will be every day.

Thank you again for your continued prayers for Macy and our family. The outpouring of love and support means the world to us! We are continually blessed by amazing family and friends!