Friday

Nolan  is doing OK today - he had a rough morning because we tried to make him walk, which was a no-go. He kept collapsing his legs and crying. Then we gave him medication (not his "usual" Nexium) and he screamed and cried, so we had to force it in his mouth. I asked about using the tube for the meds (and the medication only), but the nurse was adamant that the tube was for "venting only." So he screamed and we held him down - not a happy morning.

He got a little tylenol this afternoon (he hadn't had any since yesterday afternoon, so no pain medication for 24 hours). We tried walking again and he did a little better. His surgeon came by and I asked about "lunch," and he cleared him to have "mushy" food. We did tell Nolan that he had to walk to get his lunch, though - his lungs are sounding gunky and we don't want him to get pneumonia from sitting around in bed all day. He walked, and we just ordered macaroni and cheese (waiting for it to come from the cafeteria).

Dr. L. also told us that we could (and should) use the tube for medications. After all, why not use the only benefit the kid gets out of the tube? If he gets a 2-3 month break from taking nasty meds by mouth, go for it. I was so relieved, because he hates taking his medications (particularly Zantac). As the logic goes, by the time he no longer needs the tube, he'll no longer need the medication, anyway. I'm not sure what the nurse's point was about making him take meds by mouth was - he's eating by mouth, which is the far more important thing. I'm glad the surgeon was clear on this - it will make things easier for Nolan tonight when we have to repeat the nasty meds.