As a family we will walk through this difficult time together

Tuesday, August 27, 2013

1 year KidneyVersary

So I wrote this last week but had issues uploading it. So here it is I sit here in total disbelief that today marks one year since I gave my kidney and Faith started her life with the organ she so dearly needed. At this time I was in the surgery room and Dan and my family were waiting on word how I was doing and trying to keep Faith happy and occupied while they waited to take her back. I remember waking up in so much pain as they rushed to get it under control before they wheeled me to my room. I feel like it was just yesterday when my bed made the corner and I saw Dan and my family and Darbi. I burst into tears, which was the most excruciating pain. It didn’t take long for the pain to get under control and I became, to say the least, very loopy. I laughed, my family laughed, and for the brief moment I didn’t feel pain or worry about Faith. Dan had been in such a hard place all day running back and forth between hospitals checking on both of us, all the while trying to keep it together. Darbi that night stayed with me so Dan could go back to the Ronald McDonald house to try to rest. During the night I started hurting bad again and finally after a couple hours of bladder pain I woke Darbi since I couldn’t reach the nurse button. Come to find out my catheter had moved and wasn’t draining. After that was fixed I was able to sleep, but the morning brought nausea and pain. I got up and tried walking, which my left leg was not working very well at all. I couldn’t go very far without feeling weak and sick. And on top of that I had gained 15 pounds in water weight in 24 hours from the fluids and surgery. I worked my booty off to walk the halls so I could get out and be with Faith. And a day and a half later I was discharged to drive to see her (which every bump HURT), and be with Tristan for his birthday. She was still out of it and in allot of pain when she woke up. The next few weeks was a juggling act of trying to not over do it (which I always did) and trying to get Faith healed and figure out what was going on with her. She of course had to go in for another surgery since she was retaining so much fluid in her abdomen that it ripped the inside stitches and put a drain in to pull out fluid, which took a few weeks to get to a point that it was manageable to go home. So now here we are a year out, first time we have had almost 12 months at home since she was born. We still have daily meds, bi monthly lab draws and monthly doctors visits, but the child we have now is nothing like the one before transplant. She is walking, talking, eating, drinking the amount she needs to, and is just as strong willed as the moment she was born. We aren’t out of the woods and will never have a normal child’s life but the life we have been given by God so far has been a growing, stressful, and beautiful life changing one for many involved. Over the three years almost since we found out about Faiths condition I have watched to many kids with the same disease pass away, get sick, hospitalized numerous times, and even go into rejection not even a month after transplant. It’s a scary road some days where I come to the reality that we are never going to have a normal life with Faith. But every day when I see her smile, laugh, love on her animals, scream for ice cream, and come running to me I realize I would take every minute with the known chance we may be in the hospital again, for the fact we weren’t even supposed to see the smiles, the laughs, or what she would grow up to love. So for that I thank God every day, even on the hard ones (which are very hard sometimes) because she is such a joy to my life and everyone who sees her. So as I mark this year by spending most of it in the hospital today talking to doctors and tests, I am thankful for every minute I’ve had with her, my family that has been so supportive since the day we heard the awful news, our friends that have been there and given support and laughs when I needed them, God for giving me that gift of faith to believe and trust him and for Faith, and for my husband who has been through this journey every second with me. Has cried with me, laughed with me over so many goofy moments with her, held my hand when I was in pain from giving life to our daughter, and holding my head up when life got too much. So here is to the next year and blogging amazing moments that come our way through the days and months to come.