We Are Home!!!

If you would've asked me 5 days ago if we would be home right now, I would've said that I don't think so.  In true Macy fashion, she had other plans.  I'm not going lie, this recovery has been so rough, and Macy has felt so bad, that we kind of had to light a fire under her butt.  Well it worked, and not even 3 days after leaving the ICU, they let us leave.  Recovering at the RMH was great.  They had a wheelchair for us to use for Macy since she wasn't walking very good, and was still very unbalanced. 

Our first night out was a little rough.  Macy was still having a hard time getting comfortable, and required 1/2 a dose of her pain medication to help.  We are proud that she is only taking it at night, and down to 1/2 a dose.

Yesterday wore us out.  We had 3 appointments at the hospital.  First we headed over early for some lab work.  Then we headed back to the RMH and started packing our things.  My mom made 3 huge trips with our luggage to the car.  The car is parked at the hospital, which is 4 blocks away from the RMH.  After her last trip with bags on both shoulders, the homeless man on the corner at the 711 said he was going to follow her back and start helping her if he saw her again.  Most grandmas could NEVER do that, but not my mom.  She's as tough as they come, and just wanted to make things easier on us when it came time go. 

Macy could only have clear fluids after 8 a.m. until her ultrasound, so that was a little rough.  I felt bad eating in front of her yesterday for lunch, but I've learned along this journey that it's very important to feed myself so that I can better take care of her.  The lunch served at the RMH yesterday was AMAZING!  Double Tree by Hilton served a catered lunch.  Real plates, real silverware, real cloth napkins, and the most wonderful meal.  I don't think those volunteers realized what a difference they made in all of the families' lives yesterday by serving that meal, which to them was just another meal.  It's the small things that can make a big difference for the families there.  If you have a RMH near you, and you have a willing group (work, church, etc), please look into volunteering to serve a meal.  That one time volunteering job can make such a difference in someone's day!

We checked out of the RMH, and said goodbye to the staff there.  They gave Macy lots of well wishes, and wished us a safe trip home, and we headed back to the hospital.  Macy's ultrasound went well.  I was worried with the pushing and moving of the probe on her stomach that it might be very painful for her with her incision, but she did great!  We then headed to see Dr. Superina.

He is ecstatic about this whole process....repairing her Abernethy, changing her to a Rex Shunt kid, and seeing the AMAZING results.  He said that her shunt has already grown, and the amount of blood flow to her liver is truly amazing!  He said her platelet count is up to 252 from the 70s that she had been living in for 3 years.  Her hemaglobin is high, and he thinks it's due to being over transfused in the ICU.  He said that her body will reset itself, however in the meantime he is adding in Plavix to help make her blood smoothly move through her veins until her INR (Coumadin level) is at the therapeutic dose of between 2-3.  It's still under 2.  We were also given the okay to stop 2 meds, one being the diuretic.  She was also given the okay to start applying oil/scar cream to her scars.  We had a great visit!

Tomorrow, we will head to the lab at Riley for another INR check, and then we are hoping our home monitoring machine comes soon so that we don't have to head back to the lab next week.  We return to Chicago next Friday for 3 more appointments.  Then after that we won't return until the 3 month mark and the 6th month mark.  At this time I am not sure what those appt. will be like...CT scan, MR, or ultrasound.  They are suppossed to be calling me back about those soon so that we can get something in the books.  I'm trying to get the 6 month visit to line-up with our Fall Break vacation. 

It was the most exciting feeling ever last night when we pulled into our driveway!  Jeremy and McKenna were waiting for us inside with a beautiful "Welcome Home" bouquet and balloon!  Of course I cried happy tears, and couldn't stop hugging McKenna.  We had a pretty uneventful first night at home.  Macy appeared to sleep well, but woke up pretty early at 6:00 a.m. She's still getting her nebs, but I have spaced them to every 6 hours.  It doesn't appear to really be her lungs though, but more of mucus and sounds coming from her throat.  She has been snoring lately, which she doesn't normally do.  It hurts to cough and clear her throat because you have to use your stomach muscles, so we have to keep pushing her to do that. 

I was so excited to be able to wake McKenna up this morning, help her get ready, and drive her to school.  It was the best feeling!  It's the things that so many people complain about on a daily basis and take for granted.  I am loving it right now!  My mom is leaving today in just about an hour.  I am sure she will be so happy to get home, after putting her normal life on hold to help us our for so many weeks!!!!!  I can't thank her enough, and there is nothing I can do to show her how much it means to us.  However, I hope that someday I will be able to pass on the good deed to my own daughters when they need me!  My mom has taught me so many things, and one of the big ones is how to be completely selfless when it comes to your children, grandchildren, and family.  Thank you Mom!  You are AMAZING, and we love you so much!!!!

We are hoping that Macy continues to regain more strength and health over the next few days.  We are so proud of her for wanting to conquer the stairs last night and this morning!  She was offered to have Dad carry her up last night, but she refused.  Go Macy!  We don't know what next week holds for her in regards to school, we will just have to see how much better she can get over the next 5 days.  She was given the okay to return if she is able next Monday, but that it can be on a modified schedule such as half days. 

Continue to pray for more strength for Macy as she continues to recover at home!  Please pray that her respiratory status continues to improve and that she can start producing more productive coughs.  Thank you so much for all of your love and support.