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Since I had mentioned in an earlier post a hope to come home around the Monday following the last day of chemotherapy (Saturday night), we’ve had lots of “when are you coming home?” questions. Unfortunately the answer right now is, “We don’t know.” We do know that we have a meeting with the stem cell transplant specialist on Wednesday, so it won’t be before then. However, I wouldn’t be surprised if it’s shortly after that (God willing).
The things that need to fall in place before Eli can go home include: Pain level manageable without a morphine drip, blood pressure stabilized and managed, sodium levels stable and eating/drinking on his own. We were very close to a trip to the Intensive Care Unit with Eli’s sodium levels steadily decreasing despite having sodium in his IV drips. Fortunately, those seem to have stabilized themselves the last day or two after they put extra sodium in his IV, so as long as that stays constant over the next few days, we won’t have to worry about the side effect of really low sodium: seizures.
It’s great to see Eli down to 2 bags in his IV instead of the 5 or 6 he’s had the last several days. Now he’s just getting nutrition and lipids. Once he’s eating and drinking on his own, that will go away as well. We hope that his energy and wanting to play will start to pick up in the next few days as well.
We had to put a tube down Eli’s nose so that he could take his oral medications because he was throwing up 100% of the time when anything would go in his mouth. He didn’t like it going in at all, but he liked it going in even less the second time after he yanked it out in the middle of the night. It has stayed in fine since that episode. Thankfully, it does the trick and now we can give him the oral meds without them immediately coming back up. It still does randomly happen, but rarely.
The blood pressure seems to be a bit better now that the doctors have started Eli on a beta blocker. We’ll definitely be going home with blood pressure medicine, but as the tumor shrinks, it should help. The tumor releases hormones that kick up Eli’s blood pressure, so the best medicine is obviously chemo. Part of the reason Eli should start feeling better due to the chemo is because of the shrinking tumor. However, they keep reminding us that it’s very large, so it will take time.
The activity of our friends and family on this CarePage has been great. We love reading the messages on the Message Board. We can see who all has signed up, how many times they have visited, and when they visited last. We have 148 CarePage visitors as of right now with 867 total CarePage visits. Of course, 41 of those visits come from my brother Adam, who must login multiple times a day regardless of whether there has been an update or not. 🙂 Eli says hi to all of his nurses that have signed up for his CarePage, too. He promises to bring his grabber toy the next time we come back so he can get you.
The song of the day is “Let us Pray” by Steven Curtis Chapman:
Let us approach the throne of grace with confidence
As our prayers draw us near
To the One who knows our needs
Before we even call His name
Let us pray, let us pray, everywhere in every way
Every moment of the day, it is the right time
For the Father above, He is listening with love
And He wants to answer us, so let us pray

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