Yesterday early morning we drove down to CHW for Levi’s Lumbar Laminectomy. Two nights prior I had been awake all night with him and my mind was in panic mode, wondering if we’d have to reschedule his surgery. One minute when he’d puke up the mucous he was snorting and swallowing from the cold he caught, I’d think “yup, for sure we will have to reschedule now.” And then half an hour later he’d settle down and fall back asleep and his breathing sounded fine so I’d think “maybe by tomorrow night he will have improved a lot and will be good to go the next morning...”

So the next day I spent time on and off the phone with nursing staff from the neurology clinic and pre-op, and I ended up taking him into his primary care doctor to get checked out and hear his thoughts. Levi was quickly improving as the day went on and his doctor didn’t even think he was sick :)

When we arrived at CHW on surgery morning, the anesthesiologist looked him over during check in and she said he is in the gray area of having a cold where it’s hard to say whether or not anesthesia will make it worse. From her assessment, she thought he would do well and may need a breathing treatment or two but since he was going to be recovering in ICU anyway, she thought it would be okay to proceed with the surgery if we felt comfortable knowing all this. Of course this just gave me one more thing to worry about but I also was hoping for the best, as he really barely had any congestion left at this point and was beyond happy and in good spirits.

Surgery went well and exactly as expected. Everything went pretty quickly when they break up the process into different steps and places for us to go. As soon as Levi went back (happy as can be), we were shown to the family waiting area where I immediately found the lactation room to pump. Then Jason and I went to lunch in the cafeteria and by the end of that, we were already paged back to consult with the surgeon on how everything went. This had been 2 hours from the time Levi left us.

His surgeon told us they only had to remove a small section of bone to get to the filum terminale, where they then resected the fat and everything sprung back just like they want to see.

We waited about another hour and a half before Levi was out of surgery and they brought us up to meet him in the PICU. He was super out of it for a few hours after, only slightly waking up at one point to scowl at everyone, as if to ask what in the WORLD had just happened and why do I feel this way.

Once he woke up a little more, I was able to hold him (which took a process because he had to stay flat, was hooked up to all kinds of monitors and a catheter, etc just like back when he was in the nicu again, and I didn’t want to hurt him by moving him too much), and then he nursed again. The rest of the night is where things started to go downhill.

Whatever doctor told me, when I asked, that they don’t seem to be in too much pain from this surgery - I would like to have had him in the room with us that night and staying awake with him and trying to feed him. In fact, I would’ve loved to have seen him even ONCE post op during recovery, but we didn’t. The nurse said at one point “I can’t imagine how painful this surgery must be for them.” And was sympathizing because she didn’t seem to have too much authority on being able to increase the sedation drip to make him comfortable again. At 10:45 PM she said that if he was “still like this” at 11, they told her they could increase it. I about cried. He had been screaming for at least 30 minutes at this point and seemed as if he was either in severe pain, or something else was very wrong. I couldn’t hold him anymore at this point - it didn’t help. In fact I wondered if it made him in more pain by moving him. So I had to go back to pumping and we fed him by bottle all night. Pump, feed, pump, feed. She had ended up giving him some more pain meds which she said could take THIRTY MINUTES to take effect, but by 11, it must’ve made him sleepy enough (or he finally had nothing left in him to keep screaming :( ), he finally was calming down and drifting off to sleep again. He’d wake every 2 hours and was pretty much inconsolable every time except for being fed by bottle.

By 3 AM Levi was waking up pretty happy so I gave him a bottle again, but then he decided he wasn’t sleepy anymore. They had taken him completely off sedation at this point (which I was nervous about since he was so upset all night, but it ended up being what he needed to not be upset anymore). So since Jason has slept soundly through the whole night so far, I told him it’s your turn to go stand by him. Well after about an hour he had been getting crabby again just because he was tired, but we couldn’t really do much to help him get back to sleep besides stand there with him and brush his face. I can’t sleep while he’s upset and crying, so I got up to pump a little more again again and gave it to Jason to feed him. He fell asleep within 10 minutes.

Finally by morning he was completely himself again and happy as could be, even smiling for the first time since before surgery. He was back to only Tylenol every 6 hours but didn’t seem to be in pain anymore with just that. Back to flirting with the nurses and stealing everyone’s hearts :) 

We were just discharged from the PICU and moved to the 7th floor as just an inpatient for our last day - hoping all goes much more smooth tonight since he is back to himself again and he won’t have to lay perfectly flat anymore. Only one more hour of that and he can sit up again!

In 10 days we go back to have stitches removed and do his post op check on him in the clinic. I will update more before then if anything else significant happens, otherwise I keep the Facebook page pretty active with little mini updates too! https://facebook.com/Love-for-Levi