This day was rough from the get-go. I noticed that the spot where Spencer's central line was threaded in felt lumpy. You could clearly feel the line which I hadn't noticed before but it had also been bandaged. I brought it up in rounds and they sent someone from surgery up to look at it. The NP from surgery agreed that something felt off so she ordered an x-ray which showed that the central line had coiled up and moved, but NOT closer to the heart (sometimes the line can tickle the heart and cause arrhythmia). My parents were visiting so they got to see what one of my exciting and stressful days is like. Pure chaos and a very upset little boy. You think it's going to be a smooth day...until it isn't. Eventually, they believed the old line would have to be replaced now and not when he had his next biopsy. So Spencer received platelets and stopped eating in preparation for surgery. A second surgery in like 10 days.
I woke up to a bunch of docs hovering over me looking at Spencer who had slept in my bed. This surgeon didn't believe that Spencer would need surgery which was the polar opposite of what I was being told the previous night. But he hadn't looked at the x-ray which makes TONS of sense. After looking at it, he decided to pull the line out right here in out room which was terrifying but quick. And I was told to go ahead and feed him because no replacement line was going in at this time. They would just use the IV that they had put in for surgery. The problem with this was that he was going to get poked a lot. The line was to save him from this. And it allowed him more mobility than an IV. And IVs don't last longer than a few days. It took FOUR TRIES to get that one in. He's already a pin-cushion! But we had some visitors and the chaos from the day before died down.
This was the worst day emotionally. I was already horribly exhausted from all the "fun" of the previous 2 days. During rounds, I was told his ANC (can't remember what it was) and it wasn't close to 250 which is when we'd get to go home. I believe my Facebook status said, "Day 14 and going home is nowhere in sight"...which was inaccurate since is was Day 15. Anyway, after rounds as I was having a woe-is-me moment, one of his docs came in and said, "Don't hang your hat on it, but I think you'll go home today or tomorrow". I was SO HAPPY! I texted Todd and my whole family and almost wept openly. They felt so good about it that they phoned in his prescriptions and gave me a calendar of upcoming events: a clinic visit on the 6th, bone marrow biopsy on the 15th, central line placement and admission for Round 2 on the 21st. We were GOING HOME!!
Until we weren't. Spencer woke up from a nap very upset and making weird noises. I knew he felt warm but refused to accept it. He had his first fever, ever. Right as we were going to be released. And then he threw up down my back. He was sick. It was official. My hopes of going home were crushed. This was the first time I was really crushed. I got my hopes up which was a mistake. The fever continues on and off all night, with the high being 102.7, and his heartbeat was out of control. They did another x-ray and considered an EKG, started antibiotics. He was stuck to me like glue. Any time I would set him down he'd rage. So he slept in my "bed" and was a wet, sweaty, feverish mop all night.
The fever continued on Friday so they did a blood culture which required several more needle sticks...made me miss the line even more. This had to grow for 5 days. The criteria at this point for us going home was no fevers, negative blood cultures, and an ANC of 250 or higher. He was glued to me again for most of the night even after his fever broke around 5:00. He had visitors but was pretty spacey and didn't have much of an appetite which had been disappointing. But very late in the day, he got an energy boost and played. Looked like the worst if it was over for him. For me...I was a wreck. I couldn't decide if Todd and I should switch places for the weekend as planned. I was worried about either of us bringing germs in and out and about him needing me and me not being there. But I missed Sully so much and my brain was feeling a little unstable. I was giving up hope about ever really getting to go home before Round 2 so I REALLY wanted those 2 days with my baby and that made me feel guilty. I didn't know what I should do and felt like I was being eaten alive from the inside out.
I was still wavering about staying and going in the morning. Spencer's ANC was 140, the blood cultures were negative, and he had no fevers. Not the criteria for us to officially go home but enough for me to feel good about spending time with Sully. Spencer was in good spirits, eating a little, and had put me through the ringer. His diaper leaked all over my last pair of jeans and he unscrewed his IV so he, his mat, the floor, and my hands were covered in blood. I actually made mental note of the moment I hit my boiling point. If I didn't get some time in the real world, I was going to be on a slippery slope to cracking up. So home I went! I didn't been give Todd 2 seconds to get in the door before I blew passed him like The Flash!
I was SULLY BOUND!!!