Day 4: Macy's Journey with the Rex Shunt

Day 4 just kind of melded together with Day 3 for us.  It was nonstop, and full of emotions.  To be honest with you, days like this scare me.  I spent a majority of my day pacing next to her bed, staring at her monitors, and shaking from an adrenaline rush that seems to last all day long.  I clenched my teeth so bad that when Jeremy and I finally got some food and I attempted to eat, my teeth ached. 

In the last 24 hours, Macy has had 2 ekgs on her heart, 1 echocardiogram, 2 chest xrays, 2 ultrasounds, and 2 extra lines been placed.  She has been started on over 5 new medications.  They believe Macy's body is in an inflammatory state following this long, huge procedure. The first indication was a very high increased heart rate.  She normally has a very low heart rate.  She not only has this low heart rate, but she has had lower blood pressures, and increased work to breath.  They would push in large amounts of fluid, her heart rate would respond to it and drop drastically, and then it would begin it's climb again.  They did this over and over, which as you can imagine caused her to swell.  Her face is so swollen, and she couldn't see out of her eyes today. 

She is on a machine called a bipap that helps her to breath nice breaths in and out.  This is different than a ventilator.  The machine is not breathing for her, however it has forced in and out air to help her take those nice deep breaths that she needs to be taking following such a big abdominal surgery.  Sometimes due to the pain in the stomach, and the additional pain she has from her neck incision, patients breath lighter essentially causing problems.  She spent most of the day in an asleep state, but constantly bothered by the traffic in and out of her room.  She responds to our voices and our questions, but she feels so crappy and tired. On top of the increased heart rate and struggles with breathing, she spiked a fever.  Macy is known to do this following big surgeries, so it did not surprise me.  However, a high fever can make you feel like crap too!

So at this point, Macy is on a blood pressure medication and 2 antibiotics to help with some of the inflammatory and infection type symptoms.  She has had 2 blood transfusions in the last 24 hours as well due to a drop in her hemaglobin levels.  The overnight plan is to watch her numbers closely, especially her hemaglobin, and treat as needed.  Part of the plan is to also let her sleep.  She has been bothered over and over by people coming to do tests that she has had no real sleep at all.  She is exhausted!

The surgical team is very involved in her care, and trying to decided if and when it might be the right time to take her back to the OR to see if they can locate the source of the blood loss.   They can't keep treating her with blood transfusions. 

She was very awake before bed this evening, talking through the giant mask on her face!  She is on some pain meds, so the drugs made her have many different emotions.  She cried when I told her that she couldn't have "Coca-cola vanilla"....."but I like Coca-Cola vanilla so much!" (insert tears).  She asked for apple juice and water over and over.  She would fall asleep and wake up and say "why am I wearing this mask?"  We would turn our heads for a moment, and she was making the bed go up and down with the buttons.  Then she would ask us to position her toward the door, nevermind toward mom and dad, nevermind toward the tv......  Then she would ask to have ice packs placed on her head, or her chest (in which I told her not directly on the skin).  I look over a minute later, and she's ripping off the gown we had laid over her, and placing the packs right on her chest.....with her arms that are full of iv and arterial lines.  She would wait until Jeremy and I would go over to lay down, and then she would start kicking the ice packs off the bed onto the floor.  She would start making the bed go up and down.  It was like babysitting a drunk!  She started resting pretty peacefully around 11:00 p.m.  I had to say, "Macy, mom and dad haven't slept since Tuesday night, we need to sleep."  Yep, I made her cry.  She started crying and saying "I'm so sorry!" Bless her sweet heart!

This girl and the fight she has in her is amazing!  Please pray for an uneventful rest of the night.  Good numbers, blood as needed, and some ideas of where to go from here in the morning when doctors round.  I have a feeling she will be heading back to the OR, and I will let everyone know if she does.  Please continue to pray for Macy.  Pray for her body to start to normalize and accept the changes made.  Please pray for her heart rate to return to a more normal state.  Please pray for the bleed happening inside of her body to stop.  If it can't stop on it's own, please pray that the doctors can successfully located and stop the bleed.  Please pray for the fevers to go away and to not return.  Please do an overall prayer of health and healing for Macy!  Thank you for all of the LOVE!  She can do this!!!!