Surgery, way too much excitement, and 6 yr old roid rage

Warning – this could be a long post. Here’s the short recap: surgery, scary complications, several days back in the hospital and finally home and able to breathe more easily.  If you want the long version, read on.

As you may recall, Scarlett was scheduled for surgery on the 16th. I honestly can’t remember which number surgery this is; I’m pretty sure it’s number 4 but she’s had so many other procedures, MRIs, CT scans and sleep studies that  I get a bit lost in the numbers. We knew this surgery would be the most complicated because they needed to take out a larger portion of the tumor in her airway. She was scheduled to stay in the hospital for a couple of days and then come home and recover here. So, the 16th arrives, Scarlett puts on her favorite sparkly sequined shoes and off we go.  There are so many bitterweet moments on this journey. For example, this was the first time she didn’t need one of us to suit up and accompany her back to the operating room and the anesthesia. She just took the nurse’s hand and off she walked. They said she just hopped up on the table and  put the mask on easily.  What a pro. Still, it kills me that a 6 year old should master such a skill.

So, as we do during her surgeries, Jon and I went and got coffee and waited. This wait seemed much shorter that the others and she was only in surgery for about an hour and a half.  We had a pager from ICU and went up to meet the surgeon and get the update. He said the surgery went well, he took out as much as he could (the tumor is so intertwined with her larynx that he had to be extremely cautious to preserve her voice functions). He also put stitches in to close up the edges of the excised tissue. Scarlett did a great video recap, gory surgery photos and all – here’s the link: .  trim.eTZipc

So, we spent two days at the hospital in the ICU and she was doing wonderfully.  We discovered she has an adverse reaction to the pain killer and instead of getting drowsy, she was super WIRED. She was telling the ICU nurses fairy tales at 3 am on hyperspeed.  I’d never seen her speak so quickly but amazingly, her voice was already more clear and we all remarked that she wasn’t struggling for air during extended sentences.  Everything seemed great (so you know where this is going right?)

We get home and she’s on heavy pain medicine and feeling great.  We had 2 good days but on the third I noticed she had a fever. I got concerend and had her sleep in our room to keep an eye on it that night. In the middle of the night, I woke up to the horrific sound of what truly sounded like her drowning. She was swallowing rapily and gasping for air.  I would roll her over on her side and it would stop but as soon as she rolled onto her back, the gasping started. I stayed up all night and kept her on her side and then called her surgeon first thing in the morning. He said to take her back to Childrens ER so off we went.

One of the remarkable things about Scarlett is that her demeanor gives you no indication of  the severity of her condition.  Every doctor who’s ever seen a scan of her tumors has been stunned at how big they are and yet here she is, a 6 year old prancing around and smiling her giant smile. So we get to the ER and she seems to be breathing alright, just a bit out of breath. No one seems too worried. They call down one of the surgeons and he decides to take a look down her throat with a scope. She decides she doesn’t feel like having a wire put up her nose and down her throat so out come the sedatives.  She relaxes, they get the scope down and then in a minute, everything changed. I knew the minute I saw the mass in her throat that it was bad. The surgeon looks at the other doc (a resident who looks a bit stunned) and then says “we need to get an IV in her and admit her now”. Suddenly we had a room full of ER staff gathered to watch the video of the scope; Scarlett, ever the gracious host, is totally drugged up and saying “come on in!” to all of them. So, they all watch the video, have the same “oh sh*t” look, and get to work. It was an amazing display of team work and we were admitted to the hospital and in a room in less than an hour. The big issue was that the tumor site had swollen so badly that you couldn’t even see her airway and they didn’t know if it was just swollen or had abcessed. They immediately started an IV with heavy steroids and antibiotics to try and get the swelling and any infection under control. They also told us we’d been staying at Children’s until the airway opened back up. We stayed there for several days, had a night at home, more choking, back to childrens again, and now finally home for a couple of days with much improvement.  She is breathing so much better although I’m still staying up at night listening just to be safe.  (Yup, I’ve reached new levels of exhaustion).

If you know me, you probably know I try to find humor in any situation. That’s been pretty hard to do over the past 2 weeks but there’s been one thing that’s made me chuckle a few times. Because Scarlett is on very heavy steroids, the nursing staff warned me that it might make her a bit “angry” and said that’s why some body builders get “roid rage”.  I didn’t think much of it until I watched my amazingly sweet, loving 6 year  turn into the HULK when the nurse came in to take her blood pressure one night.  She also managed to kick a doctor and freak out over totally random things. Even now, at home, she’s still on the heavy dose and lost her mind waiting in line at a store today.  I have to laugh because that’s so NOT Scarlett.  Thank goodness the dose drops down before she returns to school on Monday.

So, we are home. I have no idea what the future holds; one surgeon thinks we’re going to need another surgery in the very near future but need to let this one heal first. For now, we are just so glad to have made it through the last 10 days.  Thanks for all the kind messages, wishes and prayers (and thanks for not holding the typos in this post against me; I’m writing on the iPad and really tired).  Much love, Shan