On Tuesday I went to surgery around 830. They kept moving my surgery time so I was enjoying some time with Addie in her room and I was actually sitting up in her crib with her and the anaeastheologist came in to tell us that they were ready for Addie early and was shocked to see me in the room! So she started calling everyone shouting 'the donor is in the baby's crib!' really loud! It was quite embarrassing! I was like can you not just say I'm in her room lady?! So anyway I jumped out and had to make a very quick goodbye which may have been easier and I got the express lane treatment into surgery. I was grateful not to have a lot of time to think about it before it was happening.
And the next couple of days were a total blur. I remember coming out of surgery and seeing my parents and aunt and I remember one of the best moments of my life when they told me that Addie was 'flooding with pee' right away. I knew then it had worked!! My aunt listened as I made some very drug fueled euphoric phone calls to Al and my best friend saying 'I'm so happy!' over and over! It was a wonderful feeling that we had done this and Addie was making urine!
The next day Wednesday I had a rough day. I really struggle with pain meds and was having terrible nausea and then they gave me a medicine to help that and I had a reaction to it and was shaking and had to get oxygen and they called my parents to leave Addie and come to see me and that was the only time all week I was genuinely terrified. But it passed after about half an hour with some IV Benadryl and I slept the rest of the day and recieved the unbelievable news that they were extubating Addie 24 hours after her surgery!
We had been prepared for a 4 day ventilator time and I had dreaded that so much! And Addie's new kidney made so much pee they didn't have to worry about fluid overload at all and she did so well breathing over it that they pulled it within a day. Due to my own issues I didn't even actually see Addie until later Wednesday once she'd been extubated! All my worrying about seeing her intubated and I never did! By Wednesday evening, I was feeling a bit better and Addie was totally showing me up sitting up in her bed playing with toys!
And since then it's just been all good. I've gotten stronger and less pathetic! I was surprised that the surgery on me was harder- clearly I either remembered my C section being better than it was or it was just a way easier surgery! Anyway I felt better Friday and was excited to be discharged as I did not enjoy my shared room or the every 8 hour Heparin shots associated with being inpatient! I'm balancing wanting so much to take care of Addie and give my mom a break with needing to rest. My parents are being amazing and really taking excellent care of Addie and I and by tonight, I'm really starting to feel okay.
Addie has had no medical issues. She's doing everything she should be doing. There is lots of studying numbers and adjusting medications and it's easy to worry about the details but big picture, she's amazing. The surgeon himself said he couldn't remember a baby doing this well. And he finishes every summary with 'she's gorgeous!' which always makes us smile. We also had been warned Addie would take a real step back developmentally before moving forward but Addie decided that was not for her so she's been pulling up and cruising around her bed for the past few days.
She is a little grumpy at the moment and we had a long day. She's just uncomfortable- particularly her throat is bothering her from the ventilator and when she coughs her incision hurts and her pain meds make her itch (where on earth did she get weird reactions to pain meds from? haha!) Right now if Addie could say more than glah-dah-bah-na-glah, I think she would say 'what?! this kidney transplant thing is not as fun as you made it sound! I feel yuck and miss my dad and brother and dog and hate being in the hospital!' Of course she just doesn't know that a week from now she's going to be feeling so much better and that her life has changed so much for the better. Right now she's just a baby who isn't sure what all is happening and why she feels bad so please pray that she starts to feel comfortable and happy super soon!
She should get her dialysis catheter removed early this week (maybe even tomorrow?) and we expect she'll actually be discharged from the hospital within a week. We will be staying in CA in an apartment for another 6weeks to 2 months until her bladder is stronger and they can remove the surgically placed catheter she is currently reliant on. And until all her immuno suppressant levels are stable and it's safe for her to head on an airplane.
But in summary, God is so good and this transplant has been a tremendous blessing. We are thanking him for leading us to Dr C and Stanford hospital, for preparing my kidney for Addie and for taking such amazing care of our precious baby all week long. God works in wonderful, miraculous ways and we have seen how he uses medicine, super smart doctors and and amazing technology to heal his children. And to top it all off, he used me in the most precious way. Being Addie's kidney donor has been the best experience of my life. I am forever grateful I got to do this for her.
We love all of you so much and could not have made it through the week without the love and support we have recieved. Please keep praying for amazing Addie and of course for marvelous little Max. We cannot wait for him to get his daddy's kidney and we pray every day for God's hand on Max as he waits. Thank you for loving us and sharing in our precious babies' remarkable journey.
And Addie's prayer walls... (better clearer pictures to come!)... thank you to everyone who contributed, we couldn't fit it on one wall, it's Addie's amazing testimony...
