Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, May 4, 2012


Have I mentioned yet that this is a rollercoaster ride?  Well it's not a very fun one
 So he got his picc line in, it took a couple of tries to get it in the right place but everything went pretty good and they sedated him which is very very good.  I had to leave the room though, which is never an easy thing for me to do. 
 He woke up from sedation while they were still cleaning the site and he was very agitated which is unusual for the lighter sedation like that.  He got his prizes and recovered shortly after they left though.  They were all commenting on how he is beyond his years cause he is so calm and just lets people do what they need to do.  So there's his new picc, we took the dinosaur stuff off and put a mesh sleeve on instead cause that stuff gives him a rash.
Big muscles.  He got the IV out of his leg too so he was able to have a washy bath, get dressed and walk around his room for a bit before he got hooked back up to meds.  So at this point we were having a pretty good day, the picc line was a little stressful, I had to hide in the bathroom and cry and hate everything that has to do with this place for a few minutes but I recovered and we were getting instructions on what we would need to do at home and getting ready to leave in the morning. 
I probably shouldn't finish this post while I'm still mad but this is the reality and I'm not going to try to gloss it over so we can all feel warm and fuzzy.  Life was good until the Infectious disease guy came round and looked at his lip.  He is concerned with how big the scab is and is not satisfied with the biopsy results they have so far.  All they have back is that it was staph...duh...and he thinks it could be something else, even though the oncologists and the dermatologists think the scab is big and it is swollen as a normal healing process from a biopsy.  So he won the fight, ordered a swab and had dermatology come back and do it.  The lady that did it was brutal.
She got a piece of dry rough gauze and rubbed the scab off, if you look close you can see part of the incision from the biopsy and see the little stitch in it.  She got her swab stick and rubbed it like the dickens a whole bunch, put that one in a vial and did two more swabs like that.  And she said as she was swabbing, I don't think this is going to grow anything, this is probably just a normal progression of a lip after a biopsy.
Ugh!!  IF they'd leave his lip alone and let it heal they would see that it was just a stupid staph infection.  It's not herpes, it's not varicella, it's not all the weird rare funguses they are testing for, it's a stupid stupid staph infection.  Okay, I feel better.  I understand that they need to be thorough when a child is neutropenic but enough is enough. 
And just to show how resilient he is, he cried for a few minutes until the nurse brought him a fruit chiller popsicle and now he is playing lego batman on the xbox like nothing ever happened.  Talking and happy and into his game.  Me on the other hand...still mad. 
I have no idea if they are still sending us home tomorrow or if they are going to make us wait 48 more hours for those cultures to grow.  I guess we will find out tomorrow.  They started him back up on acyclovir in case it is herpes even though its not.  They also changed up the antibiotics he is on which I actually think was a good call but don't tell him I said that...cause I hate him right now.  So he is now on acyclovir, Nafcillin, Cefepime, and still the voriconazole which is the antifungal. 
We have an awesome nurse today, it is amazing how much better life is when you have a good nurse.  She's been here 20 years.  Her name is Kathy and oh how I wish every nurse was like her and Tracy!  They both listened to me rant about the stupid lip culture and didn't defend the docs. The first day nurse we had was pretty good too but I can't remember her name...I think it was Becky, and the nurse we had the first night we were here worked really hard all night at getting his fever down and his vitals stabilized, his name was Eric, I'm really thankful for him.  Nurses have a hard job....and so do little cancer patients. : (


  1. Oh my Amy, I can't believe all you guys are dealing with. How frustrating! His lip looks like it hurts and BAD. What a trooper he and you are. Is his lip from falling down steps right? So sorry! Hope you can go home soon!

    1. Amber no, the lip isn't from when he fell, that healed completely about a week before all of this happened. This is some kind of infection and we don't know how he got it. :(

  2. Oh man! I've lost track of how many days you've been down there so far; I'm sure you haven't! Maybe someone needs to bring you a prize too! It's so hard having to wait and not being able to be momma bear. So sorry!!! Still praying for you guys!