Welcome back to the world of surgeries, the Pediatric Intensive Care Unit (PICU), and recovery!
We started out really early and were at the hospital by 5:30am. It was funny because many people all showed up and they herded us in like cattle. Thankfully they treated Eli differently since he was the only kid prepping for surgery. We went down and did the MRI after he slipped into his “PJ gown” which really looks more like PJs than a gown, which Eli liked. He also had to put on these “transformer robot stickers” all over his head to help make the MRI mapping even more accurate. He thought that was pretty cool, but wanted to make sure they were going to take them off once he was asleep (which of course they did).
The resident that took us down to the MRI is definitely not a pediatric specialist. He told us that he didn’t think they could use his port and would have to give him his IV in the wrist. Long story short, it became very clear that he wasn’t really comfortable with the port and didn’t want to track down an access kit because they didn’t have them available near the MRI room. It was frustrating, but those are the things you have to just let go and push through. Obviously Eli was not pleased with this change in routine (I certainly didn’t blame him, we had him all ready with numbing cream on his port and everything). However, in typical Eli fashion, he sucked it up and was amazing during the MRI. I was staring at him for the entire 30 minute scan and most of the time he just stared back at me without moving a single muscle, not even a twitch of the nose. I have seen Eli stay still through hundreds of scans, but it really hit me today how incredibly proud of him I was and how brave he really was to go through it. I think I take it for granted how great it is that he doesn’t need anesthesia for his scans. The tech told me that I could lean in on his legs and be really close to him without being completely in the machine, so I did that today and couldn’t believe how many tones and how much noise that machine makes inside your head. It’s a really loud machine, but if you’ve been through an MRI you know that there is just as much noise going on that seems to be “inside your head” as there is outside noise.
Anyway, I was happy to be rid of the resident after the MRI and we were off to surgery. I donned the customary jumpsuit, booties and “baker’s hat” as Eli called it. He said I looked like an astronaut ready to bake cookies. The doctors and nurses in the OR were awesome. They were not rushed, they let Eli take his time, they made jokes with him and it was a great “pre surgery” environment. We were trying to guess what Eli’s Oxygen level was going to be. I guessed 99, the anesthesiologist guessed 100, and then Dr. Souweidane asked Eli what he thought it would be. He thought really hard and then said, “Um, I think probably 32.” 🙂 That got a good laugh. As it turns out, Dad was right, it was 99. 🙂
As the Surgery Blog readers know, we got a few updates and found out that surgery started at 9:30am and was expected to take 4 hours. They promised an update in 2 hours. At 11:30am, they came by and said, “Dr. Souweidane is done and will talk to you in about 15 minutes or so.” We weren’t expecting that! Sure enough, in walked Dr. Souweidane and he said that everything went fantastically. He said that the MRI was invaluable in helping him find exactly where the spot was (which he later said was no bigger than it was 2 weeks ago). He said he was able to get the entire tumor out and everything around that area looked clean (although he only looked in that immediate area of course). He had no trouble with the Ommaya and everything went according to plan and that Eli was “rock solid.” Definitely the news we wanted to hear! He said that the pathology that tells us whether it is Neuroblastoma or not should be in mid next week or so. We are definitely anxious to hear those results!
For now though, we are focusing on recovery, which quite frankly is taking Lacey and I a bit off guard. It started out like any other surgery. Eli was waking up, was upset about the new tubes (especially the catheter for the urine output), and wasn’t liking the new turban (a really tight head bandage to keep down the swelling). He was also in a LOT of pain. It was a bit disturbing to the nurses I think because he was handling the pain like 3F8 treatments. He was yelling at the top of his lungs. 🙂 They kept giving him doses of morphine, but Lacey and I told them that he needed Dilaudid. Finally a resident said, “Yeah, I don’t see a problem with that.” They gave him one dose of Dilaudid and 5 minutes later he was resting. He is now on an every 3 hour dose of Dilaudid. The reason we were taken off guard is because over the course of about 4pm until now, Eli is really starting to act like himself. He read books with Lacey for hours and is wanting to eat and drink and watch movies. He’s even laughing at my jokes, which some people would argue might indicate that Dr. Souweidane might have inadvertently caused brain damage, but I assure you that it is normal for Eli to laugh at my jokes.
We have an amazing nurse tonight who is really great with Eli. Lacey and I both think he is awesome. He spent the first 15 minutes just talking to Eli and didn’t touch him at all to try to gain some trust. I think little things like that go a long way. He also does a great job explaining to Lacey and I what he is doing and he has gone out of his way to get Eli what he wants on several occasions. We have also been VERY thankful to have Lacey’s mom Janice here to help us with Isaiah so that Lacey and I can both be with Eli. I must admit, Isaiah was a very welcome distraction in the waiting room and was entertaining everyone with his animal sounds and overall busyness. We don’t know how long we will be in the PICU here, but Dr. Souweidane said he hopes that Eli can go across the street to Sloan by Sunday, which would be great! They are doing neurological tests on Eli every hour to make sure that he is still doing ok because the first 24 hours are very critical in making sure there isn’t some unseen bleeding or swelling causing problems. Obviously I’ll keep you updated on our progress and recovery. We REALLY appreciate all the prayers we know we had today as well as all of the CarePage Message Board and Facebook posts. Wow, what an outpouring of prayer requests today for our Eli. Thank you doesn’t seem to be enough.
I will go back to using CarePages for Eli updates now and my Facebook/Twitter statuses for the randomness they are designed for. I hope you all found it useful for tracking our adventure today. We certainly appreciate everyone wanting to stay on top of Eli’s progress. I will try to update tomorrow night with the latest!
PS, thank you so much to everyone who signed up (like us) to walk with Team Larson at tomorrow’s CureSearch MileStones walk (http://host.curesearch.org/site/TR/Walk/Milestones/1839155302?pg=team&fr_id=1220&team_id=4770). We are obviously bummed that we couldn’t be in Des Moines to walk with you all and see everyone, but we appreciate all of the support our team is giving to this cause and are so proud that Team Larson raised SO MUCH money for this event. Way to go!
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