Saturday, July 13, 2013

Drama, Drama, Drama: Drama With A Side Of Drama

Since the very day I wrote my last post, things have been nothing short of insane. I'm so exhausted that my hair even hurts.  I've been so stressed and overwhelmed and now I'm actually physically ill, fever and all. I'll try not to ramble and just lay out the facts. Let's start with Tuesday night (the night before we're supposed to be admitted for Round 5).

I came upstairs to give Sully a bottle and get him settled but I can hear Spencer screaming. Todd tells me he was having a rough time pooping. Minutes later, he throws up and his temp is 101. Todd calls the Oncology doc on-call (as Spencer throws up again). They say we have to come to the emergency room downtown so at 9:30 in the rain after throwing up a third time, off I went.

By the time we got there, his temp was 102.2 and he was miserable. They drew blood for a culture and gave him antibiotics and fluids. He was so warm and very cuddly. They said he would be admitted but decided to let us 2:00am. Wouldn't really know anything else until the culture grew. So after walking through a group of creepy guys, not being able to get out of the parking lot, and driving in a storm, we got home close to 3:00 and Spence slept in my bed.

Had to be up at 6:30am for his clinic visit.  I was exhausted to the core. Didn't even shower. All they basically did was change his bandage and tell me that chemo should be postponed until Friday. His numbers were ready but we had to be sure he didn't have a blood infection. His doc reassured me that just because this happened, it wasn't going to change his mind about possibly letting him go home after the 7 days of chemo. Thank Buddha. I laid down early because I was so drained and get a phone call telling us to pack up and come downtown because Spencer had a blood infection, most likely from his PICC. So Todd and Spencer were off (I had taken a Benedryl so I got to stay home with Porkchop). Straight chaos. Downtown 3 times in less than 24 hours.

By the time I got there in the morning on Thursday, they knew that Spencer did have a line infection and were trying to decide whether to try and save the line or remove it. Chemo will be done in approximately 6 weeks but he still needs a line for 2-3 months...for labs, platelets, blood, etc. If they pulled it, that means less antibiotics but means another surgery for a new line, his 4th line!  It was suggested that we just stay in the hospital from this point on to clear up the infection and roll right into chemo. Doc said we would be there approximately 2 weeks IF we got to go home right after chemo.

Then everything went haywire. Yes, up to this point it was just nuts. Now it was HAYWIRE.

Spencer slept in realllllllly late and was kind of off when he woke up. He was coughing a lot during breakfast and only had a few bites. I thought he was choking at one point. They said his lungs sounded clear but he was not behaving like himself. He fell asleep on my chest and for 2 hours, just whimpered so I called the nurse. This was NOT my little boy. Something was bothering him. They took his temp and it was 102 so they gave him Tylenol and then Motrin. His temp quickly went up to 104.4 and his heart was racing (which meant he was septic, such a scary word). About 10 people were in our room from Infectious Disease to Nurse Practitioners to Attendings and nurses. I was overwhelmed. I requested a margarita and to schedule a nervous breakdown.

He threw up and they decided the line had to be pulled immediately. It was too dangerous to leave at this point. And they wanted to move him to the Pediatric ICU, just for the day. I couldn't believe this. My poor guy! So we get over to the PICU and I hate it. It's like being in an aquarium, you're way exposed and everyone is looking at you. I missed our room and our nurses and was super uncomfortable (and there was no bathroom!!!). Plus, I had to hold Spencer, he couldn't get down, not that he wanted to. They started an IV in his hand which is always a disaster, pulled the PICC, and got antibiotics going. Phoebe came to keep us company and it was the happiest I had been all day. She brought food and Spencer ate some quesadilla and a donut and started to smile and laugh.

Our docs said we could go back to Rainbow 2 but the ICU docs said we had to stay until the morning. I was SO upset. I haaaaaated it there. But I had no choice which seems to be life lately. So we were sleeping jammies or toothbrushes or my pillow.

At bedtime, policy said he couldn't sleep with me on the couch, which he can in our regular spot. He doesn't like the hospital cribs so he usually falls asleep with me and I try to sneak him in. Anyway, I put him in the crib and he whined and cried and shook the bars and was sooooo dramatic. I turned on some cartoons and laid down but couldn't stop rubbing my feet together. I was freeeeeezing. After 2 hours, I realized I wasn't freezing, I was sick. Also after 2 hours, they couldn't take Spencer's crying so they brought in a regular hospital bed for us to sleep in together and at midnight we both passed out.

At 2:00 I was SWEATING. Sick for sure.

Spencer slept in pretty late the next day, too. I had a rough time since I was freezing, sweating, freezing, sweating. And I was nauseated. And needed comfort which I wasn't getting. They kept saying we were going back to our room but it was taking FOREVER. I couldn't put Spencer down and I could barely sit up. Luckily he was OK just cuddling and singing. And a plus was that he had no more fevers and his blood cultures were now coming back negative so the meds worked! After 48 hours of negative cultures, he's good to get a new PICC line so that's scheduled for Monday.

Todd came to relieve me so I got out of there so fast. I had to look like death on legs. I barely made it to the car before I puked on the ground (and on my bag). The drive home was longgggggg and sweaty. I picked up my dude Sully and set up a bed on the couch. Luckily, Sully is pretty good at entertaining himself so even though I couldn't sleep, I could rest (until I discovered Sully can CLIMB...on the art supply box to the toy box to the couch...I almost died when I saw him peeping at me!).

My dad brought over some pancakes and Sully and I had a Behind The Music marathon. My fever was 100.2 when I went to bed and it has clearly broken. I THINK I might make it to my oldest friend's wedding today!!! Last night I kept saying I'd have to see how I felt in the morning but I didn't have much hope. Right now, though I'm not upright, I feel 25-50% better and I think a shower will only improve that. I can't miss Tessa's wedding. She's my oldest friend and Spencer's godmother. It would be one of my biggest regrets. If we come home and don't get to stay in the hotel and I don't have cocktails, so what? I'll get to see Tessa in her wedding dress! And there's a photo booth!! I'm pushing through.

Happy Wedding Day Tessa. We love you!

I'll update again after Spencer's PICC surgery.

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