Tuesday, April 23, 2013

Break It Down: 10 Sweet Days At Home After 1 Day Of Pure CRAZY

You won't even believe this...unless you already know, which most do...but Sully was admitted to the hospital on Thursday. The SAME hospital that Spencer and I were at! I know I said that I wanted my whole family to be together but this was not even close to what I meant. Poor Sully had an abscess on his leg so Todd took him to his pediatrician to have it checked out and he was immediately sent to Rainbow to see a pediatric surgeon! SURGEON!!

When Todd and Sully arrived, a volunteer sat with Spencer so I could be at the surgeon's office. They decided that Sully would be admitted for IV antibiotics and if the abscess didn't go down with hot compresses, they'd have to drain it surgically. You can't even imagine how I was feeling at that very moment. I actually couldn't stop laughing. There I was with Sully in one room and clear across the hospital, Todd was with Spencer. Together, but not.

I've seen, heard, and done a lot of rough things over the last 20 months with Spencer but seeing Sully get his IV was AWFUL. He was TRAUMATIZED and that's not exaggeration. It broke my heart. So I sat in a rocking chair with my little Buddha, doing hot compresses all night. And I mean ALL NIGHT. At 9:15, he started screaming and didn't stop until midnight...when they gave him Oxycodone for pain. I know it's awful but babies on painkillers can be pretty funny. Not so funny was the abscess coming to a repulsive head. Thinking about it...blech.

The surgical team came in around 6:00 in the morning, waking us both (which made both mama and stoned baby MAAAAD). When the surgeon reached out to shake my hand saying, "Hi, I'm Dr. So-and-So, nice to mee.......you're Spencer's mom". When he realized that he had already done a few procedures on one son and here I was with my OTHER son, I think the whole team felt sorry for me. I was still laughing about the whole thing. You seriously can't make this stuff up. Anyway,though it had drained slightly, they ended up doing a procedure to put in a "loop" that will help empty the whole thing out. I know it's gross but there is bacteria EVERYWHERE. Anyone can get this.

After he ate and proved he would take his antibiotics by mouth, we were allowed to go home! And the BEST part of that is that Spencer got to come home, too!! His ANC is still low but the doctors knew he was in recovery.  But we had to keep the boys separated until Sully's culture came back, Sully and I took the top floor and Spencer and Todd stayed down. It wasn't ideal but eating Italian take-out and watching Conan in bed with my baby sure as HELL beat being in the hospital.

The next few days were awesome. I said we would make the most of any time we had at home together and we have. Saturday, I decided to cut all of my hair off. Over a foot. Post-pregnancy, a lot of my hair fell out and what was left was all broken. The haircut came out GREAT. I was wary of going short but I love it, Todd LOVES IT, and it feels healthy, which is most important. After that, I made dinner and we watched movies and cocktailed, one of us caring for Sully and one for Spencer to continue their separation.

Sunday, we had breakfast and then went to the history and art museums, and dinner with my niece. The shark exhibit at the history museum was rad (I highly recommend it) and the renovation of the art museum was truly incredible! Plus, we saw tone of awesome people and friends. And yesterday, we made the impromptu decision to hit Dave and Buster's after we picked Aiden up from school. It's been awhile since we've been able to do anything as a family with all this junk going on. And after many threats, I FINALLY schooled Todd in hoops!! Take THAT.

But that was after Todd and I took an early-morning walk to North Park with the boys. We're both trying to lose weight (I'm already down 5.5 pounds) so I'm doing the Couch To 5K program and yesterday was Week 1 Day 1. I've never been a fan of running but I set the goal of 20 pounds by July (and I'll reward myself with a new dress and shoes for Tessa's wedding) and this will get me in great shape. And it helped to see Todd pushing my little dudes around while I ran. He said he was proud of me. That was awesome.

Today, he went back to work and I shaved Spencer's head. A little painful for mommy.

I've been cooking and cleaning and doing homework, enjoying normalcy and fresh air with my boys. Thursday I have to take both of them downtown, Sully to have his loop removed and Spencer to have his blood drawn. Round 3 of chemo is scheduled to start on April 29th but it all depends on his numbers. His ANC has to be over 1,000 to begin. Part of me hopes it won't be there yet so we get a few more days at home but the sooner we start, the sooner it's over. And I want it over because I hate this shit. HATE IT.

One possible glimmer of hope is something that was mentioned in passing. This next round won't be anywhere near as harsh as the last. So it's POSSIBLE that after the 4 days of chemo, Spence could come home while his numbers recover. I'm not getting my hopes up though. It's safest for him to be in the hospital in case of infection but the SECOND he got home, he started eating like a champ again, his diaper rash cleared up, and he hasn't thrown up once. Home is the best cure. So happy to be here.

So yeah, maybe I AM getting my hopes up. I just prefer when my family is together.

There you have it. Thanks for your support, as always. After this round he'll be half way done!!!

Tuesday, April 16, 2013

Round 2: An End To The Madness??

It's been over a week since I whipped up a Spencer update. You'd think I'd have tons of time for this but I just don't. When I'm here, I'm occupied with Spencer and school. There is very little down time. People in and out all day and night. And at home, it's all about school work and Sully. Blogging isn't top priority. But so many people have been SO supportive and care SO much, that I want to make sure to keep people informed. I love how much he's loved. Plus, posterity and all that jazz.

There's really not too much to report. But I always say that and find a million things to say. We're still at Seidman. Spencer's numbers bottomed out as they should and it's just been a waiting game for them to recover. He's been throwing up and hasn't had much of an appetite, which is a little odd because his side effects from chemo should be over by now, for this round anyway. He still has his mohawk! It's thinner but overall, he didn't really lose all his hair! We'll see what happens in future rounds.

Unfortunately, from so many antibiotics, he got C-Diff (most common cause of poop attacks in the hospital) and has been filling diapers like a mad man. He'll be on a different med (an antibiotic to get rid of something caused by an antibiotic, bizarre) for awhile to clear that up but night time IV nutrition and fluids and lipids are keeping him hydrated and fed. His weight is actually up from his admission...21 days ago. He's 10.6 kilos/23 pounds!

Last week, some sort of nightmarish stomach bug took out my whole family. First it took out Todd and his mom, then me. I was here which was not fun. Throwing up is bad enough at home but horrific when surrounded by strangers. I was asked to go home and my dad stepped in 2 days in a row to hold down the fort. I didn't get any rest because Sully Buns caught the sickness and needed mom. My sister, nephew, and mom followed. It was epic. After 24 hours, my fever broke and life returned to normal, minus a few pounds (trying to lose 20 by July anyway so, jump off). Spencer never had it but will the C-Diff, he was in equally rough shape. His diaper rash was so bad they gave him MORPHINE. So...picture that.

After an awesome weekend with Sully and an A&P exam I actually felt super prepared for, I had to come back yesterday. I love Spencer but it's been 3 weeks and I'm over this place. More and more, I'm worried about my mental health with 4 more rounds but I'll deal with my breakdown as it happens. Trying to think positive. Made a list of Spring/Summer Awesome Activities so we can make the most of any time off we have between rounds. Trading 1 summer so we can have Spencer forever is worth it. We'll still have plenty of good times. Like I said, trying to think positive.

And speaking of time off, there's talk of us going home this week! His ANC is 60 today. They're shooting for 100 to let us go this time. If we DO go home, we'll come for a clinic visit next week and report for Round 3 the week after. It might only be a week or two but I will NOT complain. His ANC has to be 1,000 for chemo to start again so we may get more time. It's up to science. I already told Todd I want to go to Benihana, barbecue some ribs, and maybe hit the museums or something. Not wasting a second.

So things are going pretty well. We'll be 1/3 of the way done when they finally free us from this joint. I need to keep it in my mind that there WILL be an end date. This WILL end. And next spring/summer, we'll be splashing in the pool, having fun, and this will be on it's way to becoming a distant memory. We'll get through this and get on with our lives. And there will be umbrella drinks...

Sunday, April 7, 2013

Round 2: The Big Move and Other Shtuff

Ah, blogging from my own bed. It doesn't get much better than this! Sully and I watched movies together all night and I got to eat REAL FOOD. I could've put him in his crib but I wanted to soak up every moment. This was my first 5.5 day stretch at the hospital and I missed him beyond compare. He looks older, I swear. I'm trying to stock pile as much of him as possible since I go back for another longer stint tomorrow...already. Ouch.

Our new room at Seidman is super nice. More like a business class hotel than a hospital room. Couch is bigger, more seating, more work space, and HUGE windows that Spencer can hang out in. We've been watching workers at the hotel next door. If they don't get better curtains, we'll be able to see all KINDS of things once the hotel opens! Hubba hubba.

So far the PICC line is working well. I'm paranoid about something happening to it but that's never going to end. The bacteria that caused the central line infection was a type of strep from his mouth. It's a super common bacteria associated with his chemo. It was probably in his blood from his mouth and bacteria loves plastic so it went right to the line. He'll finish his antibiotics this Friday. He only has little scars from the central line.

Poor guy was really antsy and agitated our first night in the room. They said older kids sometimes say the medications and steroids make them feel uncomfortable in their skin, restless. Spencer can't communicate how he's feeling. So they tried to give him Ativan but we were "behind the 8-ball" at that point. They decided to give it to him on a schedule to prevent agitation but I'm not sure if it's working. He's had trouble sleeping unless they've given him Benedryl (for nausea and skin irritation from medical tape).

Speaking of nausea, he threw up 3 times this week which can be related to the meds, of course. But it can also be related to what he was drinking/eating. Chemo can make you more sensitive and he threw up after bottles every time. Poor kid. I despise throwing up. But he bounced back immediately afterwards like nothing happened. Besides that, he's pretty much been himself! He's not drinking as much (gets IV fluids at night) and at times he's moody but nothing horrific. I imagine I'd be much worse in his position. The rest of his hair is thinning and he has a hemorrhage in one of his eyes, which will absorb, but overall, he's doing OK.

The chemo for this round stopped Wednesday afternoon so we're in our waiting period. There is no definite home-going day. We have to wait for him to bottom out (which he did on Friday) and recover. Due to this round being so intense, he'll stay lower longer. He has no infection-fighters right now so he needs to be in more of a bubble. In some situations, the kids would get to go home while their numbers recover but he's too little. If he gets an infection, they want to be on it within half an hour and we couldn't even get to the hospital that fast. So we're there until they say otherwise. If you don't count the mini-break, it's been 18 days since we checked in. Technically, we've been physically there for 13 days. We were there for 21 days last time but it was less hardcore.

I do homework to pass time. I applied to 5 schools and worked on financial aid. I pay bills and organize our finances. I play with Spencer and do whatever he needs done. We watch TV and read. Visitors help. he loves to see different faces. I made a list of Spring/Summer things to do for whenever he's on hospital breaks during good weather. It looks like this whole shebang won't be over until August or September. By then, Todd and I will need some sort of mini-vacation...even if we can't afford it...even if it's just Kalahari or something. I don't get to see Sully a lot but I don't get to see Todd at all.

Speaking of Sully, he's waking up. It's going to be 63 degrees in Brunswick today so I'm getting him out of this house! Probably just to shop but when you don't leave one room for 5.5 days, even Target seems glamorous!! Then I have to study hardcore for my Inorganic Chem test...until 9:00 when Game Of Thrones is on!!!!

Happy Sunday!

Tuesday, April 2, 2013

Sullivan: The Chubby Red-Head Who Owns A Piece Of My Heart

I'm going to take a break from hospital nonsense to pay tribute to the other little goofball in my life, Sullivan Richard Skywalker. I didn't get to post for his 5th and 6th month "birthdays" because I've been wrapped up in Spencer and his chemo and I couldn't feel more guilty. I worried so much about losing out on my bonding time with Sully but I swear that when I'm home with him on the weekends, I'm 100% wrapped up in HIM and he knows who his mama is. I can feel how much he loves me and he doesn't mind that I can't be there every minute. He's a wonderful baby. Everyone should be so lucky as to have a Sully but he's allll mine. And I could babble on and on about what makes him such a rad really guy but I've decided to use pictures instead. I don't think I've really posted any pictures of Sully since the beginning of the year and they perfectly describe everything I want to say about my little Porkchop better than I could.