Day 8: Macy's Journey with the Rex Shunt

I am making an earlier post than usual because we have had the most fabulous day, and I just have to share it with you all.  Macy was very sad when she first woke up this morning.  She cried twice, told me "I can't do this anymore", "I hate being here", and "this is torture"!  When the first ICU doctor came in this morning she said "What do I need to do to leave this floor?"  He explained to her what he was looking for in regards to her moving to a regular floor.  Well, I think she is now bound and determined to make it happen.

At about 10:00 this morning, the respiratory therapist came in and did Macy's treatment.  She then put Macy on a high flow nasal cannula.  PT and OT came by, and helped her get out of the bed and sit in the chair.  Just to top things off, one of the doctors said that as long as she was on the high flow cannula she could have ice chips.  She was beyond excited since she hasn't eat anything in 6 days.  She loved them, and really enjoyed being in the chair.

To our surprise, Dr, Superina came by this morning as well.  He was so excited to see Macy sitting in the chair with high flow on.  He told her that her NG tube in her nose needed to come out, that they were starting her on TPN (IV nutrition of fats and lipids), and that she could progress to a clear liquid diet.  So far she had ice chips, popsicles, jello, broth, and sprite.

She is still very swollen, and you can still hear junk in her throat and lungs area.  We are continuing with the Lasix and respiratory therapy sessions.  She was able to stand up from the chair, turn and sit on a mobile toilet multiple times today.  She has had a total of 7 or 8 bowel movements so far!  Woohoo!  The fact that she is able to move around some is going to also help take that extra fluid off of her body.  Since she is able to sit on the toilet, we let her wear her own underwear and a pair of comfy pants.  Well, they barely fit.  They were so tight from all of the swelling she has going on.  When we arrived for surgery 1 week ago, she weighed 65 lbs.  Due to all of the fluid, she weighed in at 80 lbs yesterday and 79 lbs today.  That just tell you how much extra fluid is on this girl.

When Dr. Superina was checking on her this morning, he said that he wanted a CT scan on Wednesday, and then we needed to work on transitioning her to Coumadin (oral blood thinner).  Unfortunately Coumadin again is really a bummer, due to her being at such a high therapeutic dose.    However, it is way more important to me that my girl has a functioning liver!  He is thinking Coumadin for 6 months, and Plavix for 6 months.  After we get discharged from here, he said we can either go home or stay at The Ronald McDonald House, but that we need to return for a follow-up 1 week later.  I do not think she will be released back to school until following that 1 week post-discharge appointment.  I wish we had some dates and plans that were a little more definite, but it all depends on the CT scan on Wednesday, and how Macy continues to do.  It would make me the happiest person in the world to get home some time this weekend.  I miss my sweet McKenna more than I could've ever imagined.  Each time I talk to her, it gets harder and harder to realize how long I have been away from her.  I hope my mom knows what an absolutely AMAZING mother and grandmother she is for stepping in and doing everything she has done for us.  I hope some day that I can repay her in the same way.  Thank you Mom!  I love you!

Pray for Macy's body to continue to heal over the next couple of days.  Pray that her lungs continue to heal and the fluid continues to come off of her body.  Pray that her CT scan shows an open shunt with great blood flow.  Pray that we can get home soon and be a family under one roof again.  Thank you for all of the love and support you have given us so far.  We aren't in this alone, that's for sure!