Today was a day full of waiting, high hopes, and some disappointment. It started with me waking up to a resident asking Eli if he wanted his head bandages off and him saying yes. I looked at the clock and it was 4:50am! I said, “Didn’t they say it had to stay on for 24 hours?” At this point she had already cut away half of it and she said, “No, the rule is the day after surgery.” The next thing I knew, I was staring at Eli’s new railroad tracks on his scalp. Dr. S did a great job of course and barely had to shave any hair. He made the cut go along Eli’s hairline and you can’t even see the port because it’s a very small lump under his hair! Here’s a picture I took for Eli so he could see what it looked like (he said, “That’s MY head?!?!”):
Let me summarize how the rest of the day went. Eli – “I want to go back to the Ronald.” Lacey and I – “Us too.” Repeat 1,000 times. 🙂
Dr. Souweidane stopped in at 7am this morning and said that if we can get him off of IV pain meds and switch him to oral meds and if the MRI looked good, that we could go “home”. I said, “You mean go over to Sloan?” He said, “No, I mean go home, like to the Ronald, Eli is doing great.” I thought to myself, “The day after brain surgery he is going to go home? You’ve got to be kidding me!” Our friends had told us that recovery was really quick, but I didn’t expect a next day discharge! So 6am was his last IV pain med and after that we used regular oral Tylenol, which worked great. The problem was that they didn’t get the MRI done until after 3pm and then nobody looked at it until it was too late. So here we are for one more night until the Neurosurgeons can look at it in the morning and say everything is ok (the team here already looked at it and said it looks great, so we aren’t expecting any surprises). Eli is not too happy about spending another night here, and the nurses are joking that he is the most “un-intensive” intensive care patient they have. He’s up eating, watching movies, coloring, playing games, and walking around. Definitely not like any other patient in the PICU. They did move us to another room because we were the only ones left in our original room and they like to have 3 kids in a room if possible to help the nurse:patient ratio. Ironically we were moved to the exact bed we were in for Eli’s recovery from his original tumor extraction in October of 2007. The view of the East River is still awesome, I will give it that.
Eli’s hand has been hurting quite a bit (I am refraining from inserting a dialogue about that resident from yesterday to get a nurse to access his port, oops, maybe I didn’t really refrain after all), so I got permission to take out his hand IV and have our nurse access his port tonight and give him his IV steroids that way. He already feels much better having that hand IV out and getting his port accessed is really old news to him, so he will like that much better. Thankfully we have our amazing night nurse again, Michael Mitchell for those of you other families that have been asking, so we are thankful for that. Eli really likes him and doesn’t give him a hard time at all. I wish I could say the same for the day nurse. Eli likes to give her a really hard time for some reason, but she gives it right back to him, which is pretty funny.
So, hopefully tomorrow we will be back at the Ronald! I know Eli will love showing off his new scar to his buddy Justin who shows up tomorrow and I am equally sure that Justin will totally dig it. I’m sure he’ll be looking for Sam as well! Next week we should know about the pathology and whether it is Neuroblastoma or not (it most likely is). You can bet I will be letting you all know once we find out. Thank you so much for continuing to pray for Eli. God is amazing and we are so glad that He has all of this under control. I’ll leave you with a few more pictures I already shared with my Facebook friends yesterday:
Eli’s transformer stickers for his early morning MRI before surgery:
Eli’s turban, I mean head bandage:
Eli and I giving our angry faces (I wasn’t so convinced by his):
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