Goodbye PICC!

One week after we returned home from the hospital, we found ourselves traveling back to Austin for follow-up appointments with Casen's home infusion nurse, nephrologist, surgeon, and infectious disease doctor. I decided to bring Bentley along with us, which was a bad idea in hindsight, but I didn't want to bother one more person with a request to babysit.  I had been relying on so many people during the past two weeks, and I just felt like I needed to handle it myself. It was a LONG day, with a few hiccups along the way, but we managed to get to all of our appointments on time!

Our first visit was with his infusion nurse to get a blood draw for an appointment later in the day with his infectious disease doctor. This was supposed to be our quickest appointment of the day, but the nurse couldn't get any blood out of his line and we were sent to the hospital to meet with the PICC team there.  They wanted to take an x-ray to make sure the PICC was still in place. I didn't want to subject Casen to another x-ray since we were anticipating getting his PICC removed that day anyway, but I really had to push to get them to try one more time before taking an x-ray. Fortunately, the nurse finally agreed and was able to get enough blood drawn for his labs. Score for team mom!

At this point, John arrived to offer me some help with the kids for the rest of the day, but his "help" quickly turned counterproductive as he discovered that he had locked his keys in his car. Next stop, nephrologist.  We discussed Casen's course of treatment for his kidneys over the next 6 months and it was nice to walk out of that appointment with a plan even though it's completely up in the air as to whether or not it will succeed. He will be taking a blood pressure medication (lisinopril), an immunosuppressant (prograf), and he will continue his prednisolone for the next several months as we try to taper him off of the steroid. Casen has been given 6 months to try out Prograf. If it hasn't put him into remission after 6 months, we will come up with our next plan. We will continue to meet with his nephrologist at least every other month indefinitely.

Our third appointment of the day was with the infectious disease doctor.  I wasn't a huge fan of hers. She came in and told us that one of Casen's labs hadn't entirely returned to normal levels (although they were very close to normal), and she recommended that we continue antibiotic treatment at home through his PICC.  I was NOT happy about this recommendation. I was so sure that we were going to walk out of that appointment without the PICC and I pleaded with her to let us finish up the antibiotics orally.  She wanted us to get a CT scan to check for any residual fluid and if that came back normal she would consider allowing us to go home with only oral antibiotics.

Fourth appointment, surgeon. He didn't have a whole lot to say other than that his incision was looking good and we were cleared to remove his bandage and give him a proper bath! Quickest appointment of the day.

At this point, we were running to make sure that we were on time for Casen's CT scan. While John took Casen back for the scan, I ran out to the parking lot to meet the locksmith. Mission accomplished, keys were rescued. I came back in to find that Casen was already done with his scan and there wasn't any extra fluid in his abdomen (insert first pump)! They did however ask us if he had eaten any rocks recently.  If you know Casen well at all, you know that this kid eats anything and he had in fact taken a couple chunks out of a rubber/plastic toy a couple days prior. No big deal though :)

The infectious disease doctor had already left for the day, but Casen's results were called in to her and we were finally given the ok to get his PICC removed! We headed back up to her office, and one of the nurses allowed us back in after hours to remove his PICC.  He was such a trooper and amazed the nurse with his courage.  Can I just say that Casen has been such a champ during this whole ordeal?  With every poke, with every procedure, with every examination he has been so brave! He didn't cry a single time that he had to be pricked for blood or an IV. Not one time! His only request before anything took place, was that I "hold hand" and I was happy to oblige. I don't know any other kid who would have dealt with things with so much grace and maturity. What a kid...

Two weeks later, we are still tube free! After completing a week of oral antibiotics at home we went back to Austin last week for another appointment with the infectious disease doctor. I requested a phone appointment, but was denied. At this appointment we learned that all of his levels had returned to normal and that we could stop his antibiotic treatment.  Why she couldn't have just called to give us these results is beyond me, but at least we do not have to see her again!  I've been anxious to get his results back because we haven't been able to start his new kidney medication until he got cleared of any infections and was done with antibiotics.

This past week was the first time in 5 weeks that I didn't have to drive to Austin and it was so nice! Casen started Prograf this past Monday and now our fingers are crossed that it will put him into remission. It is a nasty drug and has a lot of bad side effects that Casen is already beginning to experience, but right now it is our only option. Please pray for my sweet Casen, he has a long road ahead of him. Right now we are trying to enjoy a bit of normalcy and we continue to count our many blessings every day!