We had another very long, but very productive day at CHOP last week and we're on track for transplant on April 11th!
We started off our visit with Dr. Baluarte, the transplant nephrologist and Stephen pulled out all the bells and whistles to prove to him that he's big and ready for the surgery! I'm actually not kidding. My kid acted like a complete angel, walking all around the office in his diaper and "spanx" showing off, and let Dr. Baluarte lay him down on the table for a full exam. Which never happens!! He was adorable, talkative, and kept himself occupied with an Elmo video, his trains, and some cereal.
After that, we headed over to the Wood Center to meet with the infectious disease doctor, Dr. Kim. We met with Dr. Kim for a quite away and Dr. Baluarte eventually joined in on the discussion as well. The main objectives of meeting with Dr. Kim were to get his opinion on the cdiff and his immunology status (i.e., IVIG). Dr. Kim actually has a different opinion on Stephen's immunology status than the doctor we saw here in Virginia. This is actually a first for us that two of Stephen's doctor's disagree on his plan of care. Dr. Kim feels as though Stephen has responded well to his vaccines and is making antibodies, and therefore, does not need to receive IVIG. And feels as though the risks of IVIG outweigh any potential benefit. Whereas, Dr. Alpan (the immunologist in VA), believes that Stephen needs the IVIG because his IGG is low. And Dr. Kim feels as though Stephen does not need to be re-tested for cdiff ever again (he was very adamant about this) unless he is having very very specific cdiff symptoms.
Dr. Kim did request some additional bloodwork to be done to double check his B cells and his immunization responses, and since last week, everything has come back normal. So Bill and I are inclined to agree with Dr. Kim, but we're still waiting on his doctor's here in Virginia to conference on these latest results and come back with their opinions.
After that, we then met with the other transplant surgeon, Dr. Abt, who we had not yet met with. He was very nice and obviously brilliant, and we feel even more confident about the surgeon's skills and knowledge. I haven't been doubting our choice to travel to CHOP for this, but have just been questioning whether or not going the whole way to Philadelphia was the right thing to do. But after this trip, and discussing it more with Bill on the way up to Philly, I can now say that there's no doubt in my mind that this is the right decision for Stephen, and for Kristin too. I know that not only my child will be in amazing hands in the operating room, but so will his donor.
And last but not least, we had to update our "profile" with the social worker. Because dialysis and transplant centers are overseen by Medicare in some ways, there's all this stuff we have to do that the government requires. But I think the social workers at CHOP are going to come in handy after transplant trying to coordinate insurance and medications, which I'm looking forward to. Up until now, I've navigated this on my own, but am looking forward to having someone help me a bit with all of this new "post-transplant" world.
All in all, we were at CHOP from 11:30 to 4PM. It's a very long day for a two year old who didn't nap, but again, helpful in the long run.
And before we headed out of town, we went for a tour of an apartment building; The Franklin Residences. I'll share more about our housing plans in a separate post, but I'm happy to say, the housing decision is behind us and I couldn't be happier with our final decision! Thank you very very much to everyone who offered advice, help, and suggestions for housing in Philadelphia, and to those who offered their homes to us as well. The outpouring of support was amazing and I truly appreciate it!! Once we solidify everything, I will post where we plan to be and when and how you can come see Stephen if you want! Our doors (and the hospital doors) will be open for visitors at anytime!!!