Sorry for the delay in posting updates, but we’ve been a little busy. Piper continues to do well despite a little bout of sickness over the past few days. She didn’t have any dialysis this weekend so by yesterday, she was really ready to get some of that fluid off of her. We’ve also been feeding her a little bit more of a liberal diet trying to get her fattened up for her transplant and as a result, her potassium levels got a little bit too high. We’ll have to do better about that.
A few things have happened since the last update. Last Friday, we met with the entire treatment team at A.I. DuPont to discuss what our next steps are. Everything is on pace for a December 2nd transplant and the goal is to make sure that Piper is as healthy as possible for that surgery. Unfortunately, because she’s not gaining much weight, they have decided to put in a feeding tube. In the next few weeks, she’ll go into the hospital and have the tube put in place and then they’ll monitor her for a day or two. It’s going to be a real pain in the butt because Piper HATES having her nose touched. The idea of sticking a tube down her nose does not sit well with me, but I understand why they need to do it. They guaranteed that the tube will come out multiple times so they’ll train Erin and I how to put it back in place. I’m not looking forward to that but if it gets her fattened up and more ready for the transplant, then so be it.
During that meeting we also learned a little bit more about the medicines she will be on and let’s just say that it is going to be absolutely critical that we make sure she gets her medicines every day for the rest of her life. Hopefully it will just become part of our and her routine and it won’t be a big deal, but it will take some getting used to. They also informed us more about some of the potential complications that may arise after surgery. Obviously some are more worrisome than others but there’s nothing we can really do about all of that. We’ll cross those bridges if we need to when the time comes.
We also learned that Piper needs to be out of daycare at least 2 weeks ahead of the surgery and after she comes home from the hospital, which will be about 2-3 weeks after the surgery, she’ll have to stay out of daycare for quite a while. We’ll have to do this to minimize the risk of illness and infection as much as possible. During surgery, they will remove the peritoneal dialysis port (which will not ever be used) but they’ll keep the hemodialysis port in for a few extra weeks just in case they need to dialyze her. Most interestingly, they said that there is a very good chance that once they put my kidney in her, she will begin producing urine almost right away…right on the operating table! It’s weird, but I get tears in my eyes just thinking about.
I also finally had my appointment with Dr. Adam Frank at the Jefferson University Hospital. He is the surgeon who will be removing my kidney and handing it off to Drs. Dunn and Martin on the day of surgery. I was grateful that Erin joined me for this appointment up in Philadelphia and I thought it went very well. He described the surgery in detail and informed me of what to expect immediately after the operation. He showed me where he would make the three laproscopic incisions and then where he would make an 8 cm incision to actually remove the kidney. He also said there was a 2%-5% chance that once underway, they may have to convert the surgery to an “open” surgery, which is much more invasive and difficult to recover from. Hopefully that won’t be an issue, but if it is, it is.
He said that based on my fairly benign medical history, post-surgery will be pretty much “the most miserable” I’ve ever felt. It will be a painful recovery and he said that about half of all women who have this done said it was more painful that their c-section and about half said it was less painful. He also pointed out that women recovering from c-sections have a lot of hormones at work which help their pain and recovery. I won’t have that benefit, so I’ll have to be very careful and recover at my own pace. He expects I’ll be in the hospital for about 3-7 days, and will be about 90% recovered by two months. I won’t be allowed to lift anything above 10 lbs until 3 months due to the risk of incision site hernia, which he said I really, really don’t want. I agree. I really, really don’t want to experience that!
Unfortunately, the three month rest period means that I won’t be able to get the kids in and out of their cribs or car seats or anything else really. It will be another added burden on Erin, but I’m confident she can handle it. I will certainly miss holding these kids for those 3 months and I hope they don’t hold it against me!
After the appointment, Erin and I enjoyed a day in Philadelphia together. We tried a few beers at this really cool craft beer bar right next to Dr. Frank’s office and then we did a little shopping on Walnut Street before eating one of the best burgers we’ve ever had at the Good Dog bar. It was great to spend some time together. Sadly, we don’t get to do that very much anymore.
We were so fortunate that April was willing to take Piper to dialysis yesterday and then watch her afterwards. We were even more fortunate that she stayed for dinner and a champagne toast to celebrate her passing of her nursing boards! We are so thrilled for her and just know she’s going to be one of those nurses that patients never forget. She is definitely a part of our family now and we couldn’t be happier about that.
I’m off to San Francisco for four days to attend a conference (and get my much needed continuing legal education credits) so Erin is once again left to fend for herself. I will be taking the red-eye home Friday night so that i will get a full weekend with my great little family.
Thanks again…to everyone…for everything. We are so blessed to have so many people who care about us. The food, the prayers…thank you!
Love – Chris and Erin
