Questions

(a post from last night that didn’t go through)
Not much to report over the last 2 days. Basically, Eli has felt really good and has only thrown up once each day (at night). There has been back and forth debate on whether or not to do another CT scan or xray, but they’ve decided that no matter what it shows, they probably won’t do anything different about it anyway unless he starts having a lot of pain or starts throwing up more often. So for now we continue to wait. We had some people saying that we can’t be sent home on 5 antibiotics, TPN, and wound dressings, but then surgery comes in and says they think we should get out of here in the next few days. There seems to be a lack of communication between the two groups, but with Eli continuing to throw up, we think we’ll be here at LEAST through the weekend, if not well into next week.

It can get a little frustrating when the docs don’t communicate and we get stuck in the middle. At one point, a case manager (who we had never talked to before) told us that we’d likely be going home on 5 antibiotics (not oral, through IV) and TPN. Then he came back 30 minutes later and said, “Well, we think that 5 antibiotics, plus TPN, plus wound dressing changes is just going to be too much to handle. It’s too much for anyone to handle, plus there is just so much risk for infection. We can’t expect you to handle all of that at the Ronald, it will be miserable for you there trying to accommodate all of that. I understand there is probably a little benefit to being at the Ronald instead of here, but it just isn’t worth the risk of getting a line infection.” I have never talked back to a doctor. I have very rarely openly disagreed with one. However, when I heard this guy telling us that all of this was too much to handle, I couldn’t stop myself from speaking up. I said, “Don’t you think that’s a little over dramatic? We have done TPN before, we have done antibiotics in his line before, and frankly Lacey has been doing Eli’s wound changes and the nurse just watches her do it. Plus, to be honest, the ONLY time Eli has EVER gotten a line infection is in this hospital. It has never happened when we were at home or at the Ronald. Also, you cannot possibly over estimate the impact it has on Eli’s morale to get out of this hospital and back to the Ronald. It’s more than a ‘little benefit’.” Lacey and I were both peppering him with arguments he clearly wasn’t ready for, so he went back to check on the status of how long Eli would need to remain on the antibiotics. I haven’t heard back from him since. We are happy to be here to get Eli well, but we don’t accept that he has to stay here for another week or two just because 5 antibiotics at the Ronald is too much to handle.

One question is with how much longer we are going to delay the 3F8. If Eli can’t have anything by mouth, the beta glucan will be out of the question. However, we don’t want to keep delaying his 3F8, so if it comes down to it, we might have to ask if we can go ahead and do the GMCSF one week 3F8 after all. Although, with stomach problems and slow bowels, they probably aren’t going to want to do 3F8 treatments which hurt the stomach and slow down the bowels thanks to the dilaudid. So the summary is that we think things are slowly getting better, but not good enough to be discharged or to start 3F8 quite yet. Eli’s spirits continue to be high and although his buddy Griffin has gone back to the Ronald, another buddy Justin is here to help entertain.

Another big praise is that somehow we’ve managed to keep this private room even though we aren’t on isolation. We aren’t sure how that has happened, but we think that possibly they feel downright sorry for us for having to be here so long and Eli has some sort of “seniority” status here on the 9th floor that they are hesitant to disrupt.

Thanks as always for your prayers. We feel SO ready to move forward, but it’s all in God’s time on when Eli’s stomach issues will be resolved.