Day + 60 Tushy Troubles Continued

       Today's clinic visit wasn't as "painless" as the last few weeks. Sam was due for her pentamadine injection. This is an IV medication that she gets once per month that helps protect her from a specific strain of pneumonia. It takes over two and a half hours for her to receive a full dose of this medication and the zofran that she receives prior to avoid nausea/vomiting.  She was also "due" for her dressing change, throat swab, bottom swap, cyclosporine blood level, CBC blood levels, chemistries, and urine sample (Monday Fun- Day!). Kaeden is also out of school this week and doesn't start summer camp until next week, so he tagged along for this four hours of fun as well:) When Sam is receiving an IV medication there is a line hooked up to a "pump" that is on a tall vertical bar with wheels (similar to what I posted as her "caddy" during transplant but smaller.) Now that Sam has more energy, strength, and is on steroids, she loves to run around like a maniac (most 21 month year old toddlers do right?) So as she is attached to this medication for over two hours, I am trying to push the pump around a small hospital room or hallway at the perfect pace to maintain slack going to her PICC line, so it doesn't "pull" at her line at all. After our visit today the nurse practitioner called to tell me next week she will need an IVIG injection now too. This is a drug to give her "antibodies" a boost which are slightly low. This is a four hour injection. Hopefully we just get back home before Kaeden returns on the bus from his first day of summer camp!

      Sam's WBC count was down slightly as well as her platelets this week, but still in a good range. Her hemoglobin was stable from last week and in a normal range. Unfortunately her tummy issues/diarrhea have continued and we are at a cross roads as to what to do. Stool samples have all been negative for C-Diff and other infections that they were trying to rule out. The only way to confirm a GVHD (graft vs. host) diagnosis is through the lower GI scope and biopsy which requires general anesthesia. If it is GVHD, the treatment would be to initially increase her steroid dose significantly as well as her cyclosporine. If this doesn't work, then the transplant doc said there are other "choices" for medication to try. Typically, GVHD presents at an average of day +30 so they are skeptical to jump to this conclusion, but stated several times that Sam has obviously not been the "typical" case from the "get go" so they just have to follow what seems most logical for her at the time.  If these medications didn't have serious long-term side effects that are more likely at higher doses, doing a month long trial at a higher dose would be a "no brainer" but kidney/liver damage, bone brittleness, growth issues are all things we obviously want to avoid. I am getting the sense that the docs would like to "know what they are dealing with" more definitively which means the biopsy. Obviously though this is easier for them to view as a relatively "safe" procedure from a medical standpoint, but as I mentioned in previous posts, our stamina for the surgical floor and recovery is really waning as a family. The decision at the end of clinic today was to slightly increase Sam's cyclosporine level until next week but to keep her steroid the same. If her symptoms worsen over the week, the choice will be out of our hands, but that is where we are for now. Hoping for a resolve soon of these tummy issues so Sam's poor bottom gets a break!