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

Saturday, May 5, 2012

No Go, Lip Story

May 5 counts: WBC 1.7 up a little, RBC 3.54 down a little, HCT 30.5 down a little, PLTS 74 up a little, but he got a platelet transfusion yesterday, ANC 0 but there are 2 bands so maybe that's a teeny tiny good sign.
Definitely not going home today, the Infectious Disease guy wants to see improvement on the lip or his ANC go up in the next few days.  Brady will be home tonight so hopefully he will be able to come play with Ty for a couple of days and I'll go home.  Then I'll come back depending on how things look by then.  Hopefully we will be done and I'll be picking them up. We'll see
Going to put the whole lip story down so that Brady has something to refer to while he is here talking to infectious disease peeps.  Feel free to disregard cause most of this is repeat, it is just spread through several posts so I'm compiling it all into one.

April 15th
Ty fell and hit his lip on a front concrete porch. It hurt a lot, bled a little, healed up fast.  His oncologist saw the remains of it at his clinic appt on the 17th.  It was just a big scab by then.  She didn't seem to be concerned.
April 15th right after it happened, you can see that it is on the opposite side of his new lip sore.
April 16th the next day, you can see it scabbed up
 April 17th at his clinic appointment. His CBC this day was ANC 800, PLTS 65
And April 20th, completely healed, lip looks normal

On Saturday April 21st, we went for a little hike.  I am wondering now if that is when something sinister got in his lungs even though it wasn't windy that day.

Around April 24th Ty told me his port hurt 2 or 3 times.  I thought he had bumped it, it did look a little different, it wasn't sticking out like it usually did but he didn't have any other symptoms so I didn't think much of it.  I don't know if that is a significant detail or not.

And now we get to the current lip problem...
April 26th a little tiny pin prick looking spot on Ty's lip started bleeding.  He doesn't know why it started and neither do I.  He held a wet washcloth to it for quite a while until it finally stopped bleeding.
 April 27th he woke up with an elevated temp (99.8) and a little fat lip.  His temp continued to elevate and we went to PMC. When we got there his temp was about 102.  They put him on zosyn with his first dose at about 1:30pm.  His lip continued to swell throughout Friday, started oozing that night and continued to slowly ooze a clear yellow liquid throughout the night.  He held a tissue to it to keep the stuff from dripping in his mouth throughout the night.
 Friday's progression on April 27th in pictures:
About 10:00 am April 27
April 27th in the afternoon
April 27th later in the afternoon
April 27th early evening.  The red spot looked a lot like a blood blister.  His platelets were 16.
April 27th later evening
 After he went to bed for the night it started oozing and it was dripping into his mouth which woke him up several times that night.  It oozed clear yellow liquid and when we got up in the morning it looked like this below:

The yellow crusty stuff is what oozed out all night.  It also appeared to be spreading up his cheek. They swabbed the oozy stuff and lip for herpes and bacteria.  The herpes test was negative 3 days later, and the other culture was positive for Staph aureus.  His pediatrician put him on vancomycin that morning and had the ENT look at it so he could watch the progress of it.  That afternoon a bunch of things happened at once. Ty reacted to a platelet transfusion:
 And right then the doc came in and said his blood culture had already come back positive for yeast.  We were transferred to PCMC by ambulance pretty soon after.
April 28th. They continued to give him vancomycin, in fact he got a dose during the ambulance ride.  By the time we got to PCMC at about 7:00pm his lip looked considerably better, less red, less swollen, and it was starting to form a scab.  That led me to believe it was responding well to the vancomycin, cause it was obviously resistant to the zosyn on Friday.
 That night his temp was way high over 105, and then down to about 102 when he was on Tylenol. He needed blow by oxygen to keep his oxygen level high enough, his blood pressure was low and his heart rate was high averaging at about 160.
 April 29th. Each day it looked a little better, less red, smaller scab, it looked to be healing great.  Still on vancomycin.  He had his port removed this morning.
 April 30th, no swelling or redness left....just a scab (above)
May 1st, lips look even better, it was just a big scab by this time, the dermatologists wanted to peel off the scab and swab it his lip.  I fought against it because he has already been on antibiotics and antifungal meds for three days and I didn't want him to have to go through that hellish procedure for no reason.  After I argued with them about it they agreed that it probably wouldn't yield much in the culture. They did go ahead and do a biopsy on it on May 2.
May 2 right after the biopsy, if you look close you can see the stitches (above)
 May 3rd, you can see it is starting to scab over (above)  They took him off Vancomycin at 10:00am this day.  I think this may have contributed to the increased swelling later that day...or the increased swelling may just be a normal healing process after a biopsy of the lip. 
 May 3rd in the evening, starting to swell (above)
 May 4th, 7am looks more swollen, and a little red (above)
 May 4th afternoon, the dermatologist came in and scraped the scab off with rough gauze, did three very rough horrendous swabs on the part where you can see no longer has scab.  As she was swabbing she commented that this probably wouldn't grow anything, and his lip may just look like that as a normal healing process from the biopsy.
May 4th afternoon, after the dermatologist left.  They put him on some new meds called Cefepime and Nafcillin. (above) and took him off zosyn. 
May 5th, afternoon, still a little swollen and the cultured place scabbed back up.  The Infectious Disease guy was concerned about the bigness of the scab and the swelling.  I commented that he hasn't given it any time to heal and wondered out loud if maybe it would if they would leave it alone. I also made note that it is expected to be red and swollen after the heinous culture on May 4.  He talked of another biopsy if they don't get any results.  It looks less swollen and red than it did on the 4th.  I expect it to continue to improve now that they have him on antibiotics that target Staph.  I don't know however if it will heal miraculously fast enough to please the ID guy so we may end up with another biopsy.  I will need some pretty good evidence of its necessity before I agree to it.
May 6th. The scab looked a little bigger today.
 May 7th, it bled a little today
May 8th
May 8th after we got home.  It bled a little on the way home, Ty slept so we left it alone.  The white is just softening cream.
May 9th. It bled a little in the night
May 10th the white is softening cream
May 11th
May 12th
May 12th, hanging on by a thread it seems
May 13th. The scab finally fell off in the night.
May 16th, you can see the stitches from the biopsy.
 May 20th stitches still there...lips are starting to do that peeling thing
 June 4, stitches are still there, peeling thing is still there
 June 9, stitches are gone! peeling thing starting to look better
June 13th, last of the peeling stuff fell off.


  1. Wow poor little guy. He really went through it. 😣

  2. Hi if u don't mind me asking what they said it was?

    1. They never got any positive results from their testing other than the staphylococcus aureus