Awesome Labs – Day +82

Monday morning, bright and early, we headed to COH for our weekly trip. Arriving on time with limited traffic, we checked-in and went for labs. Then, we grabbed a quick snack in the lobby and ran back upstairs to meet the drs.

First, we were taken into a meeting room and a new physician entered the room. Dr. Yadin, the nephrologist (kidney dr) proceeded to tell me that she reviewed Naomi’s reports and has no concerns whatsoever about her kidney function. She explained that high potassium can be caused by cyclosporine levels about 225, which Naomi’s is around 250, and that as long as we keep her creatinine levels safe, there is little concern. She did advise that we add some sodium bicarbonate and salt Naomi’s food as much as Naomi desires since sodium makes her more alkaline and that would help balance the potassium in the body. She also recommended no more meds to lower potassium unless it goes above 6.0 and scheduled a quick ultrasound for next week just to have records of what Naomi’s kidneys look like post-transplant.

Dr. Pawlowska entered next and while reviewing her lab results, we were thrilled to see the best WBC and ANC counts ever! At 4800 and 3800, respectively, we could not be more thrilled with how well Naomi is doing. Late let’s are still above 200,00, too. Dr. Pawlowska repeated a few times how fantastic Naomi looks and how great she is doing. Thank God! Again, I am so glad that Naomi’s doctors do not talk down to us and treat us as a team members. They told Naomi how well she is doing drinking and that inspired her so much that I did not need to remind her to drink coming home tonight. She did it all on her own, seeing that her work is paying off.

Also, a good report was that Naomi’s weight has increased again. She now weighs more than ever before! This is a huge accomplishment as she lost quite a bit of weight while sick. We made a deal with her last week that she is required to eat no less than six bites of whatever is served to her (since she is six years old). Being a determined child, she accepted that, and often exceeds it just to prove she can! 🙂

We enjoyed lunch with a friend while in CA and then drove home through evening traffic. The 3.5 hour trip took almost 5 hours. I am still so thankful to be HOME after a long day of traveling and appts rather than stay at the hotel.

We are nearing the 100 day mark and are discontinuing some meds this week. Next Monday will be an important appt to see how Naomi does over this next week without Renegel to lower her phosphorus. Also, as the week continues, she will run out of her anti-fungal and we are going to see how she does without it. That makes me a little nervous…. Any advice BMT moms? Heather? Vicky? Jennifer?

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