Happy National Kidney Month

Home.  A simple four letter word.  To most it means where you sleep, where you park your car.  Where you eat dinner and spend your weekends.  Home to me has been a house with my belongings, a hospital and the interstate between the two for 15 months.  Just the other day we heard that our house could soon be home to Maci. 
Rick and I still have to have our traning on the machine Moo will use at home for dialysis but the dialysis nurse who will do the training said it should take about a week.  Originally it was going to be two weeks but due to the hands on we've had already a week of training should do it.  I have already been reading manuals and will soon have the machine manual to read.  Our machine for home will be ordered next week. 
Excited?  Understatement.  I just pray that our major speed bumps are behind us. 

Maci is up to 120 mLs of dialysis fluid.  She is on a 10 cycle schedule so from the hours of 12pm to approximately 10pm.  The rest of the time she does what she wants.  LOL  Once we are at home, the dialysis will be done at night, while she sleeps.  Rather when she SHOULD be sleeping.  She will sleep some at night but her tolerance to her formula seems to be minimal in the evening ours.  She has A LOT of gas.  When I say a lot, I do mean AAAAAHHHHHHHHH-LOT.  With the Nissen, she doesn't burp so we have to allow the air to escape through her g-tube.  This helps but not all the gas is passed.  Some of it gets "trapped" and my poor baby just screams and cries.  They made a change yesterday to her formula by removing the added carbs and then today they removed the added fat.  Those were to increase the calories of her feedings to make her gain good weight.  Her formula unfortunately can not be changed because of her kidneys.  She is on a kidney friendly formula and sadly there is not an abundance of options. 
When she has a meltdown, we just hold her and try to console her even though it doesn't seem to help most of the time.  At least it makes me feel like she knows we are there with her and we aren't just letting her cry alone. 

I want to say thank you to all who have helped us in any way these last 3.5 months.  Whether it was a text, a visit, monetary contribution or prayers for us; Rick and I appreciate EVERYTHING.  We received a gift card in the mail the other day that did not have a return address and it wasn't signed.  Whoever you are....we thank you from the bottomo of our hearts.  I wish I could say thanks in a more personable way but I hope this will suffice. 

I plan to order the organ donation / Linking Hands for Life tshirts in about a week and a half.  I have received an email from several people and I have added you to the "list".  If you are still interested, email me at macimoosmom@gmail.com.  Further info is contained in the Organ Donation titled entry on Saturday, 2-25-12.  

March is National Kidney Month and March 8th is World Kidney Day.  PROTECT YOUR KIDNEYS!   http://www.kidney.org/news/wkd/index.cfm

This is Maci yesterday during physical therapy. Do you think she was cooperative?????