…Is a virtue I’m not sure I have in abundance these days. It’s been 3 weeks now since we got the unsettling news about the CT, a week since the surgery and still no definitive word on whether the masses are malignant or benign. The initial pathology looked encouraging, but until we get a final ruling our family will have this hanging over us. Last I heard they are getting a second opinion on the biopsy from Stanford, and Stanford may send it to Washington, DC if they need a third opinion. It’s hard to know whether the wait is a good or bad sign, but it is certainly not comfortable.Diego went to school this afternoon, I’ll pick him up in half an hour or so. He is doing remarkably well for having surgery about a week ago, but is a bit cranky and moody. I never know whether it is physical or psychological or a bit of both. His appetite is not great, hoping it’s just very temporary. I wish we could get this little boy to EAT!
Diego was discharged from the hospital yesterday afternoon– hooray! We made it home at around 7pm for a tearful homecoming. Diego was exhausted and crying, Mateo doing a little happy dance that we were finally home. After the inital waterworks we all snuggled up on the couch. Super cozy~Today we’re at home doing laundry and re-acclimating. Diego is cranky but otherwise doing okay. We’ll see how it goes with the pathology next week, but until I hear otherwise, Diego and Mateo will be back at preschool on Tuesday.
Diego is out and about today and making friends in the playroom. He seems almost completely back to normal this afternoon! The resident says he can probably go home tomorrow- Yay! We probably won’t get final biopsy results until early next week, but I am almost giddy that we might be able to get outta here!
One might think after 5 surgeries in under a year we would be old hands, that it might start getting easier. Or perhaps that was my wish- Recovery has been smooth enough so far, but I forgot how difficult it can be. This has been the first surgery that he has had where he was not actively ill before hand, so perhaps it has been harder to watch him in recovery.
In any case, sometime this afternoon around 4pm I got my first smile post surgery. What a relief to finally see that. Last night was a long night with pain control. One of the nurses said, “You know a 4 year old has had a hard life when he asks for morphine.” We laugh about this, but yes… This kid has been through far too much.As in past hospital stays, he became depressed quickly, so I’ve had to keep his morale up. Family visitors perked him up a bit but otherwise he did not want to leave his room today. Late afternoon I finally managed to lure him out with wagon ride, made super soft with lots of pillows and blankets. The ride around the floor lifted his spirits and he was so comfy that he has been in there about 3 hours now.
The surgery was a success!!
Diego’s surgery has been pushed up to Monday. He is doing fine, but it’s been nearly two weeks since the CT reading, so stepping it up seems to be the best course. The Kaiser surgeon in Santa Clara will be performing the procedure. I spoke with the oncologist on call today to ask some questions and we feel comfortable with the decision to move forward with this plan. The UCSF surgeon was not going to be able to work with our timeline.Diego is due to check in at about 2pm tomorrow, Sunday, so we can meet with the oncologist and surgeon beforehand. It will take us an hour or so to drive to the Peninsula from here. We’ve taking the whole family down and have spun it as a big adventure to Diego and Mateo. We’ve told him that he and I will stay there for a few days while the doctors figure out what is going on with his tummy. He was worried when I talked about it, saying, “But my tummy feels okay now, it is all better.” Then I changed the subject and talked up how the hospital is new and how I bet they have a great playroom. He hates hearing the medical talk. I know he will cry when he hears about the surgery, so we are just trying to break it to him slowly and not give him too much time to worry about it. We’re taking a cooler down with us too with his favorite non-dairy foods to keep his weight up. I’m expecting to be there about a week, but we won’t have the luxury of driving 10 minutes to go home so it’s a bit like packing for a big trip.
I’ve been emailing with Diego’s doctor, and told her this morning that we really needed a plan set today, that we could not go another weekend with things being up in the air. ( I just want to say again, that I know his doctor is working really hard for us but she has only so much power over the almighty foe of red tape.)
Et voila, le plan:
• Plan A is surgery at Kaiser San Francisco by the original surgeon (Dr. Shinjiro Hirose).
Diego’s surgery appears to be mired down in red tape. We would like the UCSF surgeon, but it seems to be rather complicated to get him, and it may take another week. Diego’s oncologist wants to get a less invasive biopsy in the meantime via interventional radiology. I am concerned about leakage from the mass if it is a tumor, and have asked her about risk. I’m not sure whether the UCSF surgeon is actually a better surgeon than the Children’s Hospital ones currently contracted by Kaiser Oakland, but that is my perception– That he is worth the wait.
This has been a hard, long week of waiting and worrying.