Thursday, September 6, 2012

Almost 2 years ago...

Reading on Caring Bridge brings me back, and allows me to progress forward too.  Interesting how when in ICU there was still so much unknown with Makenzie...and now her future has unknowns too. But she is strong and doing great today! She rocks her 1/3 of a pancreas like nobody's business! 

Written Sep 28, 2010 11:14pm
Green Irish GirlMakenzie Christina Shirey Update- 9/28/10 by Erin Kreitz Shirey on Tuesday, September 28, 2010 at 3:33pm
Wow, who knew that life could change so fast. Makenzie is my hero, she is fighting so hard. She was swimming catching flags at the pool last Monday night and today, Tuesday afternoon, she is full of tubes and had a blood transfusion. Seriously, she kicks ass like no other. I am beyond grateful to be her Mom and have her call me "Mommy" as loud as she can.

Yesterday was a rough day. Makenzie needs oxygen now because her breathing is compromised and her left lung is now full of fluid. She did not like the various options for face masks for breathing and it was a battle. But we figured out how to make it work. In the midst of this, Makenzie had a CT scan to see what is going on in a greater level. Her poor little body is broken inside. Good news is her kidneys, bladder and stomach are looking ok. Bad news is her Pancreatitus is worse than first thought and she has colonitis. She has a case that is severe and the doctor's hadn't seen that bad before...not the news a parent wants to hear. Her blood cell count was low and her body needs to keep the good blood and get rid of the bad. In addition the rest is from the last few hours:
I talked with the specialists today, went over the CT scan and here is the breakdown.
  • Makenzie's pancreas has so much damage that part of the pancreas is almost missing. She needs a lot of time for it to heal.
  • more than 50% chance she will get the fluid filled sack- sore- on the pancreas as it heals and will need surgery to remove it.
  • She has Colonitis too, and it is damaged.
  • The concern is that there could be bacteria floating around in her body that can cause another infection. They are monitoring it closely because of her jeopardized system.
  • She is one tough kid- if we were to be in her shoes we would be so angry and in mush worse shape.
  • She got her catheter taken out because she was peeing so much - YEAH!- and will have to start peeing on her own or in a bed pan "Princess potty"
  • She is doing the breathing "vest" treatments again and did not like it. We decided every time she does treatments she has to have medicine before to calm her nerves.
  • Her left lung and side is full of a lot of fluid. The fluid is getting a little broken up, but she has a long way to go.
  • The influenza strain she was tested for is the concern because of it comprising her healing.
  • WE NEED TO KEEP HER SPIRIT AND DETERMINATION UP! She needs to keep getting frustrated, pissed off, happy, cuddly, sad and ready to make the next step.
  • She is really connecting with the Pulmenoary Specialist, Perry, and nurse Molly. That is key!
I just want to hear her laugh again. I want to take away all of this pain and make her feel good. The doctors said it is not a sprint but a marathon. And I said this will be her PR. They said that it will most likely be 7-14 more days in ER, another blood transfusion in the next while, and our goal is to have her home by Thanksgiving. After the CT scan and everything else, the dates have shifted. I am at a loss, but want to care of Jack and Emerson so much too. It is beyond challenging to be there and know that I have seen E for all of an hour daily the past few days. But I wouldn't be anywhere else and need my baby to get better. She is INCREDIBLE! Bo(college bestie) came by yesterday for a few hours and brought an iPhone full of games, movies, music which was perfect. She asked me to read in bed with her today which was nice.She is getting a strong voice in what she doesn't like, which is my normal Makenzie.
I feel grateful for all she is going through and for being the kid of Type A parents. She has a sense that she will win and get better. She doesn't have an option, and it is her only way to take the time to heal.
On a different note update- thanks SO MUCH for all of the emails and cards. I bring the cards to M an put them on her bulletin board of the ICU. It means the world to us that you are praying and sharing your kind words with us.I just got my computer approved by the medical team and can now write from her room when she is sleeping.It is key because Emerson can't see her until she is out of ICU and we will hopefully be able to Skype. They are sisters who are always together, so this is a a new challenge to have them apart. Emerson is doing incredible though! She is my little monkey!!
If you wanted to connect with anyone, my Mom and Sister, Tina and Robbie, MIL and SIL- Denise and Jen, and friends, Danielle, Colleen, Bo, Sandi and Sheri are the liasons. Emails are Mom-, robbie-, Danielle-, Colleen-, Sandi-, Sheri-, Denise-, Jen- We are not really at our house right now, so if you have a card for Makenzie please send it to my parents.
Thanks so much for your thoughts, kindness and concern for our baby girl. Jack and I appreciate it more than you know.We truly do, we truly do.
Erin, Jack, Makenzie and Emerson

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I am probably out running, but I thank you for taking the time to share. I look forward to your additional input as this blog grows and evolves.
Erin Kreitz Shirey