Monday, August 26, 2013

Round 6: The Joke That Never Ends

So here it is Monday Morning, a week since chemo was supposed to begin. Not only has it not started yet, but Spencer is currently on his way to the OR for surgery. I can not measure on a scale how sad, disappointed, frustrated, and any other furious/emotional/aggressive adjective I am.

Spencer finally got scheduled for a new PICC line this past Friday at 2:00. It was supposed to be a simple procedure that he has had twice before. Pre-procedure was a bear because he wasn't allowed to eat. You try telling a hungry 2 year old that they can't eat with good results. And since he couldn't eat, I couldn't eat. We were unhappy campers. Campers who could've EATEN A BEAR.

I wasn't allowed to stay in the room this time because there was a large group so I went to the cafeteria and cried. I felt very lonely. Especially after my phone died. I tried reading W magazine but it wasn't for me. And seemed slightly inappropriate a for a pediatric waiting room. Lots of jugs. Not the point. The procedure was supposed to take an hour...1.5 hours later, a nurse came out to tell me they THOUGHT they had the line in but it was a struggle. Waiting for X-Ray confirmation. I was warned that his veins could have scarring from having a PICC in each arm so recently but it seemed like it was working out. He was metabolizing the sedation meds too quickly so he was maxed out. And even then he moved during the procedure. I was glad to get an update because I was in a panic.

Which continued another half an hour. They finally came out and told me that after further attempts and going beyond the maximum dose of sedation meds, they couldn't get the line in. Bust. It got up to the armpit and stopped, most likely due to scarring. The PICC team was not going to try again. And it was almost 5:00 on a Friday at this point. If anything was going to be done, it had to be right then or after the weekend. I called Todd and cried. Called my mom and cried. And the choked back anything I had left when they told me that Plan B had to wait until Monday, 1 week after his planned start date and 10 days after he was admitted to the hospital. Heartbreaking.

Plan B means surgery.

Since he couldn't get a PICC line, he has to have a Broviac again. This was the first type of line he had. He'll be intubated and under anesthesia and probably require morphine after. It's much more intense and scary. And I'm not with him with makes me feel like a toad. His dad is there and I'll be there later but I have the worst feeling that I should be there NOW. They've already taken him to the OR and now I wait for an update. It's a long wait. The whole situation is getting so painful.

Didn't get to update until now, Wednesday. The surgery went smoothly and he now has a Broviac on the right side of his chest. Chemo has been running since Monday around 3:00, I think. FINALLY!!! So far, he's doing pretty well. He's been a little clingy but he did just have surgery. Monday evening, they gave him some steroids because it sounded like he was having some difficulty post-intubation but that cleared right up. And last night at dinner, he spit some of his food out which usually doesn't happen so early. Hoping it was a fluke.

Now we just wait. Chemo will wrap up Monday but we have weeks of recovery ahead. Weeks stuck in this room. I'm trying to take it one day at a time. I know it's the last round and I should be thankful but that doesn't make it any easier to be here. Netflix helps. Visitors help (thanks for the tomatoes Natalie!!). Last night my mom sat with Spencer for an hour while my dad and I went to Little Italy for dinner. Best steak I've ever had at Trattoria Roman Gardens! A steak and a Peroni, a quick shower, and back to hospital life.

I realized for a second that it's only Wednesday and almost cried. Keep telling myself that I get an extra day at home this weekend because of the holiday. And I already cleaned the house so I SHOULD just be able to relax with Sully, who just turned 11 months old. I miss him so much, I feel sick. All of this is so unfair to him, too. I know I've said that before. And I'm the least important out of anyone in this situation but I'm feeling low because I probably won't get to go to school this semester. I arranged for my classes to start September 10th but it's looking like we'll still be here. It hurts. Puts me s semester behind, further from being a nurse.

But it is what it is.

Hopefully our time here will be boring (unlike yesterday when Spencer unhooked his chemo and the line acted like a vacuum, coating us in a damn crime scene). But I'll update in a few days. 

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