Well, if everything continues to go well, the plan is to release Eli from the hospital sometime tomorrow! He was allowed to eat “real food” today and he was snacking on pizza and other things. They wanted to take him off of antibiotics and let him stay 1 more day just to make sure there were no more fevers. So if we have a good night tonight and tomorrow goes as well as today, we’ll be packing up and heading for the Ronald!
The only negative is that Eli was supposed to start drinking his beta glucan on Wed. to start his 5th round of 3F8 on next Monday the 21st. They were concerned with him starting beta glucan the day after he was released from the hospital, but mostly concerned about giving him narcotics next Monday and having him go through extreme pain so quickly after being discharged. So we will have to delay this next round of 3F8 one week and will start it on Monday the 28th instead. We think it’s probably a wise decision to give Eli a little bit more time off before putting him through 2 weeks of 3F8.
Sunday night was a nightmare. At 4am, I woke up to find the nurse struggling with Eli’s lower port (his mediport is actually a double, it looks like a contact lens case under the skin). No matter what she did, she couldn’t get it to flush or draw. So she decided to deaccess his lower port and reaccess it with a new tube. This is a pretty big deal because it means poking him with a very large needle. Usually, they put numbing cream on it so he doesn’t even feel it, but she was worried it would clot, so wanted to get it re-accessed immediately. They have a quick spray that also numbs the skin by basically freezing it, but it doesn’t work that well. Plus, pharmacy was gone so they didn’t have any. So, Eli had to get accessed with no numbing cream. Parents that have kids with ports just let out a collective “ugh”. He was very brave about it and let out a yell of pain, but stopped crying very quickly. She tried to flush and nothing. She couldn’t get the saline to budge. She called in another nurse who said it might have been put in a little too far to the right, that’s the only thing she could guess.
So, you guessed it, they pulled it out, got a new needle and tube and re-accessed him AGAIN (this time another nurse tried it). This time there was someone in pharmacy, so they had the spray, but it really didn’t help. They pulled back. Nothing. They tried to put in the TPA medicine that dissolves clots, but no matter how hard they pushed, they couldn’t get even a cc to push in so it could start working! They were stumped and poor Eli was spent. They left to go see what the head nurse thought. While they were gone, Eli had to sit on the toilet. I looked at the syringe of medicine and thought, “I saw them pushing with all of their might. I wonder if it just needs a stronger push?” So I unclamped his tube and gave the syringe a forceful squeeze. There was resistance, and then the medicine flowed in with a rush. I clamped him off & let them know what happened. They left it for an hour, then came back and it was clot free and everything worked great. Whew! So at 6am, Eli and I went back to try to get some sleep.
Eli still has a lot of pain in his side. I think it’s a combination of soreness from surgery as well as cramps and trapped air in his bowels. He has been “expelling the air” a lot more the last two days, so we’re hoping the side aches start to diminish. He’s still on his slow road to recovery, but at least we’ll be able to do some “recovering” at the Ronald instead of this small cell in the hospital. 🙂 Thank you for continuing to pray for his recovery and that his pain will decrease. All you parents know that seeing them in pain is one of the hardest parts. He told me that when he gets out of the hospital, he wants to eat crab legs and chinese noodles. I think it had something to do with the tv show “Deadliest Catch” being on at the time. Regardless, you know I’ll be scoping out the nearest Chinese Buffet. 🙂
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