Here we are. One week post op and things are going extremely well. Max is still doing better than I am, but we are both on the mend.
From a Max standpoint, speech and OT have both been by today. Max was a complete crank so nothing was accomplished. They will retry tomorrow. His platelets came up to 18 today which is still very low, but they are steadily increasing every day, so the doctors are happy. So the plan is to do an xray with contrast on Tuesday to check the swelling in the new ureter and kidney. If all goes well they will pull the catheter and possibly sent us home that afternoon. They may decide to keep him so that they can watch his labs a little more closely. We shall see.
As far as I go. I am doing well. I am still pretty uncomfortable, but it's tolerable. The worst part is trying to get comfortable enough to sleep at night. I am pretty bloated and swollen in the abdomen region and my ribs and pelvic bone are sore, but overall I am surviving.
So what does it feel like to donate a kidney? Well it feels like a train rain over you, reversed and rain over you again. It hurts- really bad. I knew there would be pain, but I was not prepared for the kind of pain that I experienced. Morphine wasn't working and the stronger pain medication that they put me on wasn't working either. Every time I moved or talked I got extremely nauseous. I vomited a couple of times- OUCH! I could barely keep my eyes open. I was light headed, couldn't see straight and just overall felt like crap. Would I do it again? Absolutely.
Seeing the change in Max has made all of this absolutely worth every ounce of pain that I have had. Max's lips are no longer dry, he no longer has circles under his eyes, his coloring is better and he has not gagged once since the surgery. For those of you that know Max you know that he gagged and retched at least a dozen times a day. He has not done it once since last Thursday. It's incredible to see the strides that he has made in just a short 7 days. You can see his little wheels turning all the time. The light is finally coming on in his little head and it's unbelievable to see. He won't nap because of everything going on around him which makes for a very cranky little boy, but overall he is doing phenomenal!
I can't believe it. This whole experience has been so surreal. I am so glad that it's over and we are ready for him to come home, but I am trying to cherish all of these milestones. The experience has been bittersweet for me as well. I have to admit that I had a few days of depression after the surgery. I realized that I left the little boy that we all have grown to know and love on A7 central Thursday morning. I kissed him goodbye and didn't realize that I would never see that little boy again. I am at peace with that now. I realized we didn't loose the old Max, we just got something better. We got the honor of receiving the new "Max 2010" on July 8 and we can't wait to learn all the new things that he's got to offer.
Thank you for coming along with us on the journey of End Stage Renal Disease. This is me officially (and finally) ending that chapter and beginning the new one of Max's life post transplant.
8 comments:
So glad everyone is doing well. He looks so good. Thanks for telling us about all of the good things (Dry lips and circle gone) and the bad things (You feeling like crap). You have been in my thoughts and prayers. I am going thru a lot now that Parker was diagnosed with autism, but anytime I have a bad day, I think it could be worse. You really have been my hero even though we dont know each other that well. I understand all of the insurance crap, medicaid crap, and theropies every week, but cant imagine being you. You are such a great mom to Max. Keep it up!!!! I am praying Parkers little light goes off in his head. Every day. So glad Max's did! Sending loves of prayers to your family. Oh, and when you want some cupcakes, let me know. I will send some over! Take care!
Katie Ruschman
It is so amazing to hear of all the changes in Max - I'm so glad the positive changes were noticiable immediately. I've been thinking of all 3 of you a lot since last Thursday - especially today as I passed your house. Once you are settled in again, I would love to make you dinner. You and Tim are truly and inspiration to me - you have such faith, love, hope, emotion and passion for life, especially Max's - I'd expect nothing else from wonderful parents. Take care and get some rest before you have to test drive the Max 2010 at home!
Kristen Hildebrand
It has certainly been a bittersweet ride, following the Max saga for well over two years. So happy the worst seems to be over and the future appears bright.
If memory serves me correctly Max still has a major obstacle ahead in a bladder re-contruction, but the first major hurdle has now been overcome and the dreaded kidney transplant is in your past.
Thanks for the updates and for allowing us to be a part of your inner circle throughout this journal. I encourage you to continue to maintain the blog and keep the pictures, progress reports, and updates coming.
Thanks and Congratulations!
DS/BBHS
wow you can see the difference in the picture. his smile is even bigger. amazing!
Denise
Congratulations to both of you! I've never met you in person but I am a follower of the story now and am so grateful to see such a wonderful thing coming out of a struggle. Your son is blessed to have such a wonderful set of parents. You will all continue to be in my thoughts and prayers.
Wonderful new & great picture of Max. Do you still have the Max Livingston Benefit Fund at P.O. Box 257 in Alexandria KY. ? I think some people would like to make donations. Please advise if it is still functioning. Best wishes to you all for a happy, healthy life!!!!!
That is so amazingly awesome. I am so very happy for you & your family, and continue praying for yours & Max's recovery.
It is so great to hear Mighty Max and his Supermom are doing so well after surgery. We are so happy for all of you. We will continue to pray for good health, a restful recovery, and an exciting journey as you see Max continue to grow and amaze us all.
Kristina, Cory, Anna, and Lily
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