It’s been a long couple of days. I can’t even begin to explain the rollercoaster ride of emotions I went through from 24 hours pre-OP to 24 hours post-OP. Any emotion you can find in a dictionary, I felt it. I went through everything from acceptance to anger, from reassurance to doubt, from relief to guilt,... you name it, I felt it. It all started to set in the day prior to Wyatt’s scheduled surgery. When I saw him on Monday, it hit me that that’s the last time I’ll see him with a breathing tube in his mouth. While I knew it was for the better, it still felt bittersweet for some reason. I have no idea why but I suddenly wanted to just leave Wyatt be and wait, whereas a week ago I couldn’t get the surgery done fast enough. Everything just seemed surreal. So I had my freak out moment that night and cried until I couldn’t cry anymore. Then Tuesday morning came and I was antsy. I got to the hospital by 10am and it was pure torture. All the poking and prodding they had to do to get Wyatt ready for surgery. I held his hands at first to try to keep him calm through it all but then after 30 minutes I had to step away or I would have knocked the next person out that was going to mess with him. Aside from all the pre-OP blood tests, Wyatt ended up with three IV’s, one in his head, one in his wrist and one in his foot. The surgeon came in and talked to me briefly about the details of the four procedures that would be done - the tracheotomy, the Nissen, the G-tube, and the muscle biopsy. Hearing him talk about the length of the incision for the Nissen (about 2 inches) and the possibility of having to get the muscle biopsy from Wyatt’s leg if he wasn’t able to get it from the abdominals at the incision site, that’s what took it out of me. I was ready to say no to everything just because of the thought that they may have to mess with Wyatt’s leg, too. Signing the consent forms felt like signing Wyatt’s life over to someone else. And then the dreaded walk to the surgical area at 1220pm, stopping at the red line and watching the surgical team take him away around the corner. I held it together but I couldn’t stop shacking. The surgical waiting area was packed but at least I brought my MP3 player and a notebook. I cranked up the music as loud as my ears could handle and started writing. Zoning everything out around me and putting down my thoughts on paper was the only way I was going to get through this. The shaking never stopped though. In fact it got worse when an hour and fifteen minutes later the surgeon told me he was done, everything went well and Wyatt was taken back to the NICU. They had to get him situated in his NICU warmer again first before we could see him. Even though that only took a few minutes, it seemed like an eternity when I didn’t know whether I wanted to just bust in or run away. Finally seeing him still didn’t make me feel any better. It’s another one of those things that you’re never prepared for. There were even more wires than normally, the two inch incision covered by tape, the brown G-tube covered by tape and his trach held in place by a foam wrap. The trach was actually comforting to see and not at all scary anymore because I knew it would make Wyatt so much more comfortable after recovery. It was also nice to finally see Wyatt’s face. He looks exactly like our 2 year old son. Ironically when our 2 year old was first born, he weighed in at 9lbs 9oz and Wyatt was now just over 9lbs. They even have to same dimple on their chin. Almost as soon as I was done admiring Wyatt’s face though, the panic over the recovery phase set in. Not even 45 minutes after surgery, Wyatt already woke up. The morphine couldn’t get there fast enough. All we could do was to hold his hand and tell him that everything will be ok. Did I believe what I was telling him… I wasn’t sure.
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| before tracheotomy surgery |
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| after tracheotomy surgery |
After not being able to sleep well last night, I woke up early again today at 545am, pumped, grabbed a bite to eat and got to the hospital right at 730am after shift change. Wyatt had a bit of a rough night with his blood sugar levels being high and his blood gases being less than ideal. Due to the morphine and the stress from the surgery, he was also just riding the ventilator at an increased rate of 40%O2 and 55BPM and he was not making any breathing effort on his own (pre-OP 21%O2 and 20BPM as back up only). As a normal response to surgery, his body was also putting out anti-diuretic hormones so he started to retain fluids and his poor face was now all puffy. The fluid retention causes poor circulation and that’s why his blood gases were now out of the norm. (At least it wasn’t an actual breathing issue this time.) They pushed more fluids to try to let his body take over, flush things out and regulate everything on its own again. Unfortunately that means they have to keep poking him every few hours to draw blood. Thankfully by the time I left at 230pm, Wyatt’s numbers were starting to head in the right direction again. His blood sugar level was back within the normal range and his blood gases were slowly starting to improve. By 6pm he had also finally filled a diaper with some long-awaited good urine output. So hopefully things are starting to normalize again… Aside from waiting for Wyatt to bounce back from surgery, I also had to put up with some of the different case workers today. My intention was to get a head start on the mess we'd have to deal with before and after discharge. And while I am glad I have a bunch of people from all different angles who are already setting things in motion, I had no nerves left for it today. There is a follow-up person for the Wyatt’s Medicaid application, a follow-up person for his SSI application, a case worker from the hospital that deals with United Healthcare and helps us sort through home health care agencies, a different case worker directly from United Healthcare that will coordinate continuous care after Wyatt’s hospital discharge, the hospital social worker that makes sure we get trained on all medical equipment, a case manager for a state funded special needs kids clinic which we only qualify for if Wyatt gets approved for Medicaid (and that’s a big if), then there is the rehabilitation team at the hospital consisting of the occupational therapist, the physical therapist, and the rehabilitation coordinator, and let’s not forget about the developmental specialist. And I’m not even including all the doctors and specialists we have dealt with so far. And to top it off, bills are starting to come in, too which we can’t even touch yet because we’re still hoping that Wyatt qualifies for a specific type of Medicaid for newborns with special medical needs… I’m surprised I haven’t lost my mind yet. Or maybe I have and just don’t realize it.
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