5/13/18 - 2 Months

I have been at the Children's Hospital of Wisconsin for two months today. It's been pretty good for me honestly. They brought me back from near death, as you know. This was me when I arrived:

And here is me today:


Frankly, I have had a rough go of things the last week here. We are getting it [the infection] figured out, but it has definitely taking it's toll on me. I am frail looking and feel yucky. It's such a bummer because I was doing so well last week and finally feeling pretty decent. This whole heart failure thing is for the pits. But, yeah, two whole months here...what a roller-coaster it has been. I've had huge improvements in my appearance and let's say my overall well-being; not necessarily my health. My health situation is not improving. It won't. They can't fix me without my someday donor's heart. I need that heart to come so soon. That huge gift of life. My second chance. Being here at CHW is the best chance I can have to live thru all of this though, so I'm thankful this place is in our state. 

Well, the doctors and nurses like numbers so much here and I've picked up on that. So, here are some numbers from my two months here:

  • I am 2 months, 21 days old today.
  • I have been here at CHW for 2 months. That's about 1,500 hours of laying in this bed. 
  • I have been on the Heart Transplant List for 1 month and 16 days. 
  • I weigh less than, but close to 10lbs (i vary daily) and am about 22" long or so.
  • Mom (and sometimes Dad) has driven every single day to see me. That is 61 days of driving to Milwaukee from just north of Wisconsin Dells, WI. At 126 miles one way, they have driven a ridiculous 15,372 miles to be with me in the two months I have been here. That is about 220 hours in the car so far and they won't stop coming. They promised me they wouldn't miss a single day with me. My days are limited and special. 
  • I wish I knew exactly how much fluid I get a day thru my IV's with medications and such. That would be an interesting number! Gallons of medicine? Ugh, that's horrible to think about.

Anyhow, I hope you enjoyed the numbers. I need my rest and am trying to keep the excitement to a minimum for the next few days so my body can fight off this infection. My nurses are keeping me a little more sedated and keeping me cooler, too, so my body can rest and recover.

Mom told me more about what you guys all do for me every day. That you pray for me and send me letters and why you do. She said my prayers all come in different forms and that people all believe different things. She told me that to "pray", is to address a solemn request or expression of thanks to a deity or other object of worship and that a prayer is something beyond us all. She explained to me that when people think of me and "keep me in their prayers", it is like they are sending me good vibes that just float thru the air from you to me. I imagine those as tiny little hearts that just float to me and I breathe them in and feel all warm and happy inside. I need those good vibes. I need you and thank you so much for your prayers. So, if you would, please keep me in your prayers again tonight. Pray I can relax and rest, fend off this infection and be okay. Pray it hasn't damaged my heart further, that I can get back to where I was a week ago, feel well again and for my heart to come. Pray for my someday donor's family to find comfort and pray for my family, too.

PS. I know a lot of you were hoping for a sweet Mother's Day post tonight. I keep my blogs real. The reality of today is Mom doesn't feel like a Mom at all and it has been a very difficult day for her. She is just trying to be thankful I'm still here and not feel sad. So, I will just take a minute to tell all of my friends and family that read about me every day...Happy Mother's Day! Look at your children right now and be so thankful for them. Be thankful for their health, for their bright and happy smiles, for the time you get to spend with them and furthermore the choice of how you get to spend your time with them. Do not take one second for granted. 


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