I can't help but hold my little girl and whisper to her... you did it! As our time here at Primary Children's is winding down, floods of emotion are upon me. It's definitely a Bitter-Sweet feeling. I can't seem to look at or talk to anyone without crying. Although I'm a mess, I don't think I need therapy (ha ha) .. I'm simply so thankful and humbled by this experience we've had. I can not believe what all we've accomplished this last 2.5 weeks - and none of it was planned. I have witnessed so many miracles and I'm so thankful for each one of them. I truely Stand All Amazed.
While there is much I want to write about ... I'm exhausted and will save them for another entry. :)
Madison has continued to do remarkably well through everything. Her last chest tube should be coming out tomorrow morning. Her medical team would like to observe her for at least 24 hours and then we will be going home. Wow... yes, another miracle will happen tomorrow.
Here is our busy schedule for tomorrow: (just incase anyone is curious what we do all day :) )
5:00am: X-rays
6:00am: Labs
7:00am: Order breakfast
8:00am... Meds begin (Madison takes 10 medications at this time. It will take us 2 hours to eat breakfast and take meds .. and not throw up. While we have had many close calls, Maddie hasn't thrown up her meds in 3 days!!)
8:30am: Doctor's rounds.
10:00am: More Meds arrive (Madison has 3 more medications to take..)
10:00 am: Echo
** Sometime in the morning... chest tube comes out.
12:00pm: More meds arrive
Nap tme? (at least for me.. please?)
Snack
More meds
Play time
Dinner
More meds
Time for bed..
**Seriously, if anyone has any suggestions for taking / giving meds - I'll take them. Maddie is doing really well... right now. But, I'm not sure how long it will last.
Thank you and goodnight.
(Shauntelle... I need to call you. I keep forgetting and now we are going home. I would really like to get together. I will call you tomorrow. Will you please call me, if I forget? (801) 649-9551. Thank you.)
7 months ago
10 comments:
Hooray, hooray!! Michelle, I am so excited that you are able to take that sweet girl back home and be home for the holidays! :)
You are going to be one busy mama it sounds like when you get home. Please let me know how we can help.
Hello I'm a transplant mom too. Sydney (HLHS transplant at 9 days)now nearly 12 so we may see you around clinic. When she was little we'd bribe her with a sucker -- licks in between meds - fuggies also worked as they seemed to numb her mouth to the taste, along with sipps of momma's coke. Yes, bad mom for giving soda but whatever makes the cyclo and other nasty meds go down! The funny part was when she was small the best med to her was the asiprin -- she still loves it today.
Madison is amazing!!! Each day my team at work asks for the Madison update. We are very excited for your family to head home and be reunited with Cooper. This is truly a Christmas miracle.
Merry Christmas!
Angela VanShaar
Will she have an NG tube at all? I haven't seen any in the pictures, but wanted to know. With Daniel's kidney we had to give him fluids thru the night. So the meds we could give thru the tube (we didn't do Prograf or Cell-Cept.....anti-rejection/immunosuppresants....I know you know about Prograf) anyhow, everything else went in the tube! That is the one thing I loved about the tube! Some of the yucky tasting ones, we had the pharmacists (sp?) put different flavorings in them when they were made. It cost $2 or so per med, but WAY worth it. Some we even just added sugar. WHATEVER IT TAKES! :-) Good luck!
I am so amazed by you and your family. I cry as I read the things you have gone through. I pray that Madison will be healthy and happy as she grows! So glad to hear that she is doing so well and that you are able to head home for the holidays! GO MADDIE!
Michelle and Mark,
This is Laurie Anderson, Kim Lucchesi's mom. I have read your blog and am so amazed at the blessings you are receiving. I'm sure you deserve them! You will be in our prayers every day. Bless you and especially Madison and the family who made this transplant possible. I hope someday they know what joy they have brought you!
That is awesome news! Good girl :)
Wow! Going home already!! Merry christmas!! Thank you for sharing Miraculous Madison with us! We will continue to pray for Madison and your family.
Loves, Mason's Mommy
I am so happy that you guys are home!! I was going to bring you some treats today while we were at clinic but you have moved on the bigger and better things!! Congratulations!! I am so so so happy you guys will be all together for Christmas!! Just remember don't stress. And if you need to call the transplant team it is ok. I always felt bad for bothering them but they are so amazing and make everything so much easier. What a wonderful journey.
Don't forget to post updates of home life. Sending lots of love!! Hilary Cook
Hey let me know if you are still there i would love to drop something off to Madison while we are there tomorrow for Libbi's checkup. I hope you are home but if not we'd love to stop by, let me know tonight! Thanks mindidixon@msn.com
Mindi
Hooray! I'm so glad she's thriving and feeling better. It's a Christmas miracle :)
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