The one thing I’m learning (and I promise it’s not just one because I’m much smarter than that) is that the road to recovery can be bumpy – very bumpy. On Sunday, I had a really good day and Mama C fell asleep in my room feeling really good about where we were. In the middle of the night though, I decided to spice things up a bit and I found a way to get my tiny little fingers under the tape behind my EAR and I pulled out my central line (central venous catheter). I didn’t really mean to be naughty but I definitely gave my nurses a shock when they came in and saw the blood on my bed. So, the nurses let me rest for a little bit longer, but they woke Mama C up at 4:30am and had her keep me calm while they had to put a new i.v. line in as a temporary solution. I wasn’t happy about that because my veins are really tired and they had to try every single foot and wrist and then go back to the best one and finally get the line in. That was finally done around 6:30am and I let Mama C sleep for 1 more hour and through the nurses change-over, before I made the day nurse, Christina, wake her up again because I had spiked a fever and they needed to do a blood and urine culture, which means more people had to come and poke me. That was all before 11am and so I was very sleepy at that point and I slept and gave Mama C enough of a break to let her get dressed, clean up the room a bit and even put on make-up. Then, Christina and another nurse came back in and they gave us some good news (good news technically but it still meant that I was going to get poked again): one of my chest tubes (draining from where the operation was done, not the fluid around my lungs) and my pacing wires (in case they needed to give me a pacemaker) were ready to come out. I really didn’t like how they had to do it, but it seemed to go okay and then they nurses finally let me rest.
The afternoon is when things got scary (and Mama C realized that make-up was a mistake). I’ve been having a lot of troubles with my tummy and passing gas and trying to poop. I’m on a lot of morphine so it makes everything inside me really hard and so I’ve been struggling a lot and it makes me very upset. Like before, when I get upset my levels drop – it’s because of all the fluid that’s around my lungs makes it hard for me to breathe when I’m relaxing and so much harder when I get all agitated. So, in the afternoon I was trying really hard to poop – I could feel it in my tummy and I got all squirmy and achy and I hurt so much. I finally did poop and it was everywhere: all up my back, on the sheets, on my legs, but it was just the way that I was sitting and it actually wasn’t that much. So I calmed down a little bit but my levels just kept dropping. My nurse Christina asked Mama C to hold me, hoping that it would calm me down, but my levels just wouldn’t come up and that’s when everyone got really worried. In the end, my oxygen saturation level had fallen to 45% (ideally it’s between 90 – 100%) and then everything got very woozy. Christina called Ashley (the boss of the nurses) who took one look at my monitor and yelled for the Cardiac doctor who was working and before Mama C even thought about what was happening, someone had taken me from her to lay me flat on my bed and there were lots of nurses and doctors all around and then someone called for a respiration therapist that they thought could help me. Then someone thought that it was going really badly and they called a Code Blue. I didn’t really know what that means but in the blink of an eye there were a lot more people in my room – some standing on chairs taking notes of what was happening, other’s moving Mama C to a chair so that she was okay too (although I didn’t like that I couldn’t see her). The doctor in charge got upset at that point, because she didn’t think that I needed a Code Blue and all of the worried faces started to look a little better, but they still looked very very serious. They gave me a lot of oxygen and some epinephrine, and a surgeon came up and suctioned my chest tube to get some fiberous crap out of it, to help me feel better right away (someone should have given some to Mama C because at that point she was crying a lot) and it worked because then people started to walk away and I got to be with just Mama C and Mommy (she had slipped in at some point – Mama C looked really happy to see her) and just Christina, Ashley and Cornelia (the doctor). They decided that I needed to go back to the Step Down room for a few days because there are obviously a couple of things that need to get sorted out before I can be okay in my own room.
While all of this was going on, they had done a chest x-ray (which was impressive because the whole episode was done in less than half an hour) and it showed that, even though I was draining lots, there was still more fluid all around my lungs and there was even a small pocket of fluid just left of my heart. Once everything was calmed down again and they had moved me into my Step Down room, they came back and did another chest x-ray (on the other side) to make sure there was nothing else going on. That x-ray showed the doctor that the chest tube they just put in (for a second time) on Saturday was kinked again. There was a lot of discussion about what they wanted to do, and they even brought some surgeons up from downstairs and finally it was decided that if my levels stay consistent, they will leave the drain as it is (because it’s still draining, just kinked), but if they start going funny again then they’ll replace it again.
The rest of the day, luckily, was very uneventful. I slept a lot and in the end both Mama C and Mommy decided to spend the night with me, even though they couldn’t sleep in the same room as me. I was very kind and let them sleep through the whole night (although rumour has it they didn’t sleep very well). Mommy had to get up and go to work so I only saw her for a moment but Mama C was there with me when the doctors did their rounds. They were still very concerned with what had happened the day before and they’re frustrated that my chylothorax isn’t getting better because that is what’s causing all my fluid problems. So, they decided that it’s been 5 days since they switched my formula and so it’s time to move on to the next step. Sadly for me, the next step is something called complete bowel rest or PN (Parenteral Nutrition) which means that I’m NPO (Nil per os – nothing by mouth) and they’re going to feed me and keep me hydrated completely through my i.v. line, which means everything goes in to my bloodstream and hopefully my body will stop making the chyle that’s causing so many issues. It’s already hard because I’m used to my tummy feeling full and comfortable and this won’t feel that way. They’re going to do this for another 5 days to give it a chance to work before they look at doing something else. The mom’s are a bit sad because they were hoping we’d all be home by the weekend but now I’m going to be there until at least Monday.
I also had to go down to surgery today so they could put a new PICC line in (since I don’t have a central line anymore). I tried to stay nice and relaxed all day today to give the mom’s a break (for their poor hearts), so me and Cookie Monster snuggled a lot and even though I was cranky (because I still hurt) my levels all stayed up and that’s good. I don’t want to scare the mom’s like that again.