I can't believe it's been almost 5 weeks since I posted! I would love to say it is because life has been gloriously uneventful and I've just had nothing to say... but in the past five weeks we did manage a surgery for Addie, a lot of potassium drama with Addie and an unexpected PICU admission for Max! We've had alot of boring medical stuff happening and the posts I've started full of details about catheter placements or Potassium clearance were so boring I couldn't even finish! But for all the minor things I will say we have two healthy and happy babies right now and are in a good place to be approaching this huge day in our life!
Last week Addie, my mom and I went to California to meet our team of surgeons and doctors who will be doing our surgeries. We had only spoken on the phone with the transplant coordinator but had never seen a doctor. We weren't sure how much testing they would want us to do and if they would have any concerns about the surgery or not. If you've been following our story for a while then you may remember that in late December we really thought we were going to get to transplant in January and then Addie's doctor came back and the team met and they cancelled any transplant any time soon so although I have had a peace about our May 8 surgery date, I was still nervous about it actually coming to fruition and whether the doctors would end of finding a problem or reason to delay.
So the main good news from our trip is that there were no problems, no concerns and we have our official approval from all components of her transplant team for surgery a week from Tuesday! They actually repeated very little testing, aside from some blood work. They wanted to see me and Addie and talk A LOT about her medical history but they didn't have us redo any of the reasonably invasive and time consuming testing that Addie and I went through in December. Of course all the doctors fell in love with this little girl- I mean how could they not?!
Addie was pretty amazing on the plane. We had strangers come up and tell us she was the best baby they'd ever seen on a plane. There were no tears, no screaming and a lot of sleeping! We also loved the area and found we were done every day in the early afternoon and spent time shopping and eating out and actually turned it into a little vacation! It was really nice to see Addie get to have fun and enjoy a little girls week before her big surgery!
We learned a lot more about the surgery itself and the days that will follow so I thought I'd share a bit more so people know what all will be going on and so that you know how to be praying for us, because it was certainly clear we are going to need a lot of prayer!
So... a week from today we leave and arrive in California on Sunday evening. On Monday May 7, Addie will first recieve her last hemo treatment there and then be admitted. They will do some last minute pre op testing and start her on IV fluids. Thankfully I do not have to be admitted the night before and will get to spend Addie's last night before surgery with her. Then on Tuesday morning, I will head to be admitted very early in the morning. They will take us both to the OR faily early (although we did learn that California early and Texas early mean different things and early seems to be 9am there instead of 7am here which we were quite excited about!) He is hoping to be removing my kidney around 930am CA time which is 1130am Houston time. The same surgeon is actually doing both of our surgeries which is different to how they do it here. But Dr C the surgeon really believes in being involved in every step and believes it contributes to his amazing 100% success rate so we are happy for him to be doing mine as well.
Unless you have been through surgery or are a really enthusiastic medical TV fan, you may not know a lot about the difference in open vs laprascopic surgeries but in a laproscopic surgery they make smaller incisions and then stick a camera inside of you and small tools and they can avoid actually opening you up to see what they are doing. Both of Addison and Max's kidney removals were done this way and we had assumed mine would be as that is how they would have done it in Texas. However, Dr C does not believe that laprascopic surgeries on the donor are in the best interest of the recipient, at least not a little recipient like Addie. He believes if he opens me up and then is able to go in with his hands and find the kidney and remove it that way, he can assure us a better outcome for Addie. She will make urine faster and have lower risk of losing my kidney. All of which sounds super important so we are really grateful for a surgeon that has such a conservative plan and has Addie's interests at the absolute forefront.
The drawback is that it will be a much bigger surgery for me- a significantly bigger incision and more pain with a longer recovery. I would of course do anything for Addie and I'm going to be in California all summer for Addie's recovery so it's really not a problem at all. But as much I want everyone's primary focus in praying to be Addie, I would appreciate some prayers for me on the 8th and the days that follow for minimal pain and no complications as it appears what I thought was a fairly minor surgery for me is actually not so minor!
So I'll be in the operating room and Dr C will be well on his way by 930 and he estimates my surgery will take around 3 hours. They had told me 4 at one point but Dr C was very excited that I was 'fit' (to be clear, I am not fit and pretty much get winded walking up the stairs but I am thin which seems to offer the illusion of fitness!) and he thinks that should make my surgery a bit faster. While he is operating on me, anaesthesia will have put Addie to sleep and will already be flushing her body with fluids so that hopefully once my kidney is inside of her, it will start making lots of urine. Once Dr C has my kidney, he will personally walk it across the walkway to Addie. Presumably someone will close me up, I didn't really ask about that but am taking it in good faith they will not just leave me there! I'll wake up right around when he gets started on Addie. Honestly I really wish I could just stay under through her surgery as well and just wake up and it all be done but don't think asking for some optional aneasthesia would go over well so I will wake up and start worrying about Addie.
Addie's surgery will take more like 5 hours once Dr C gets there. When he is done, they will take her out of heavy aneasthesia but they will leave her sedated and on the ventilator for probably 4 DAYS! They will be giving Addie a ton of fluids to keep my kidney from having too much culture shock suddenly being in a baby and they don't want to risk the excess fluid compromising her heart or lungs and her running into respiratory distress so they will preventatively leave her intubated for those first few days. I hope most of you have never had to see you child on a ventilator because it breaks your heart. I really hate it and I know it's good for her but it's very sad for me. It also brings back a lot of memories from when she was sick with her heart failure in July and on the vent for 4 days then so it's tough on me emotionally. So please be praying for all of us. Obviously the 8th is the biggest day but it will be a very trying week on all of us physically and emotionally so we would love to be covered in prayer those days.
While Addie is in the ICU the first week and I am still admitted recovering, my mom will be staying with Addie and will have been signed off as her gaurdian for that time. My Aunt Debra, my dad's sister is coming out for that week and will be staying with me and taking care of me. Meanwhile my dad is there to take care of my mom and me and Addie (and he thought retirement was going to mean less stress... hahaha!) And we pretty much have someone coming out to stay with us every week from then on so we will be very supported and loved!
I feel the full range of emotions about everything that is coming up. I am not terrified because I wouldn't be doing this if I was terrified. I am nervous and scared but I believe we are doing the best thing for Addie and that she will be okay. After Addie had a bunch of issues with her potassium clearance on Hemo, I was saying to one of my best friends that I was worried because Addie always has these strange and serious complications and what if she has a complication with transplant. She certainly has had her share on dialysis. And my friend Shannon pointed out that while yes Addie has had some serious complications she has come through all of them amazingly well and that she is looking the healthiest and happiest she ever has. And she pointed out that Addie may very well have a complication but that if she does we just have to remember how strong she is and that she'll pull through it and come out the other side better than ever. And that has really encouraged me to look at Addie's story differently. Addie's road hasn't been easy but God has protected her and been there with her even at the scary moments and so I trust that no matter what the coming weeks have in store that God will hold her close to him and see her through. I see her past complications not as a sign of how many things have gone wrong but of just how strong she is and how much she has survived. I know God has amazing plans for her and that this next month is just the beginning of an exciting new chapter for her.
So we pray for no complications and a smooth road for Addie but we know that God will be with her no matter what and that she'll amaze us all once again! Knowing all that, I think the most prevalent emotions I feel are not so much fear as just dread but also excitement. I dread Addie being on a ventilator and having new incisions and new lines and not feeling well. She's had the best last month and so I hate for her to have to go through this, even though I know it is for her huge ultimate gain. I dread being away from Al and Max and my best friends. I dread being in pain and dealing with my own recovery at a time when all I want is to be there for Addie. It is hard to psych yourself up for what you know is going to be the hardest couple of weeks of your life. But while the dread and worry are there, there is great excitement that this is finally happening.
We have known since Addie was 3 weeks old that this would need to happen and God has reassured me in all of her scary moments that she will get a kidney and she will get better. Transplant has been my hope on many long difficult days. It has been my promise and my dream for Addie. And it's here. Addie is getting the gift of life and I get to give it to her. So far above anything else I am praising God for keeping Addie safe the past 16 months, for creating in me a kidney that I do not doubt was for Addie all along, and for orchestrating every detail of this transplant.
We are also thankful for the tremendous support we have recieved from everyone- from my co workers who donated so much paid leave to me that I won't have missed a single day's pay all year by the end of this, to our pastor and church family who prayed over Addie, to my friends who have genuinely cared about every boring dialysis detail and to the hundreds of people who have sent prayer posters for Addie. (and if you haven't sent one and want to, please keep sending them this week to firstname.lastname@example.org or 936 689 7238- they really are a huge blessing!) I will be updating my blog around surgery time but I am much better at updating Facebook so if you aren't FB friends with me and following this and are on Facebook, request me and then you can follow my much more timely updates! I'll probably put up a quick blog and Facebook post on surgery day just with a picture and pray for Addie today that people can share on the day.
And to reward anyone who actually made it through this monster email, Addie and I had a pre-transplant photo session together (meant to be a family session but sweet Max was in the ICU... so it was just me and Addie but that's ok, it was a special thing to be able to do before our joint surgery!) Here's a few highlights: