Day +124 (Waiting patiently ...)

Hunter went to his first IVIG appointment at CHLA yesterday. We weren't quite sure what to expect except different. Well, different is exactly what we got! Our actual appointment time was 10:30 but the scheduling receptionist told us to get there as early as possible. I assumed if we arrived at 9:00, which we did, we would be in good shape. Initially, everything ran smoothly. We sailed through triage and waited briefly before Hunter's Attending Physician examined him. During our brief wait a volunteer we know well asked if we had secured a bed in the Day Hospital (at the other end of the floor). I said we hadn't and he gave me the "that's not good" look. He informed me the beds in the Day Hospital where Hunter's infusion was to take place are first come first serve regardless of your appointment time. What?! Thankfully, he offered to take one of our bags and place it on a bed to "save it" for us. Apparently, if there isn't a bed available when you arrive you must wait in the waiting room for a space to open. However, anyone else waiting can try to secure the same opening. I'm very glad we didn't have to deal with that particular scenario. Anyway, Hunter's exam went well. He completes his steroid taper tomorrow. Although the doctor increased Hunter's GVHD prevention medication, erring on the side of caution. This will lengthen Hunter's Tacrolimus taper from approximately four months to four and a half months. We will discuss Hunter's new schedule after he is reevaluated next Monday. Honestly, I thought we made good time arriving at the Day Hospital by 10:00 but this is where different quickly came into play. In Seattle, each patient has his own infusion room, cubicle or space. The room we entered was set up for five patients. We were the third family in the room and the other two spaces were immediately filled. I'm not sure what the status of the other patients was but we waited two hours before our nurse finally came in the room to acknowledge us, another huge difference. We waited an additional forty-five minutes to begin the infusion, our nurse spending time on Hunter's IV placement, blood draw and premeds. Once his IVIG began everything went well. Hunter was so loopy from the Benadryl that for much of the time he played with the tourniquet the nurse used to place his IV. We were also lucky to have the volunteer Hunter loves entertain him. When all was said and done we were away from home seven and a half hours!

Please know that while I am frustrated about yesterday, I do realize in the bigger scheme Hunter's recovery is progressing without complications for which we are so very thankful. There are families we've met, become close with, and many others we haven't met whose loved ones are losing or have lost their particular battles. My heart goes out to every one of them. Tonight I am thinking of Ashley, Skyyler and Nicole and their families with love and admiration.