Good Week, Still Neutropenic

 Ty has had a pretty good week, feeling pretty good, playing and even helping out a little.  The only meds he is on right now are voriconazole (antifungal for the spots on his lungs), Dapsone (antibiotic to prevent a certain type of pneumonia), and Colace (stool softener).  We tried to go to the Field of Heroes this morning but it was raining when we got there.  We decided to drive through Artic Circle and then see if it was still raining and try again.  Ty promptly threw up as soon as the food was in the car and so we called it a day and went home.  We might try to make it back over there before the Memorial Day weekend wraps up.  We'll see how things go.  The Voriconazole makes him throw up occasionally, I guess it is a pretty common side effect.

 We figured his counts would be gradually rising this week since he is still not taking any of his oral chemo.  He's just not very good at getting that durn ANC back up though so we've been cautious.

 Grandpa replaced his roof and Ty had a lot of fun helping with the cleanup (with gloves and a mask of course).

Helping mom make jam...so fun to be 'normal' for a while : ) His port removal steri-strips finally fell off!!  The line scar is the port insertion/removal site and the red dot under it is a scar from accessing the port many times.  If everything goes as planned he'll have a matching scar on the other side where they put his new port in July hopefully.

 CBC yesterday.  With no picc line and no port we had to go up to the hospital lab to get a pokie. (Thank you Aunt Sarah for the cool pokie prize! We played with a marble tower like this when we were kids and she found him one on ebay) He hates finger pokes really bad, they hurt for a few days after and the arm ones only hurt right when you get them which is why we chose to just go right to the lab where they could do an arm one.  He does so good with them now, he cries when it pokes, but he doesn't struggle and freak out anymore like he used to, and he likes the idea of having a pokie prize to look forward to. 
Even though we went first thing in the morning so the results would be done in plenty of time for PCMC oncology to call and let us know what to do about his oral chemo and next CBC...the lab forgot to fax the results to PCMC so we waited and waited and never got a call.
Our awesome home health nurse looked them up for us and since he is still neutropenic we are assuming PCMC would have just kept him off his chemo pills anyway.  Hopefully we will hear from them on Tuesday so we know where to go from here. 
 For my records WBC 2.0 low, HGB 11.7normal, HCT 34.3normal, PLTS 325normal, ANC 400 neutropenic.
I don't think anyone will have an answer for why his ANC is still so low, especially since he only took half dose chemo pills for 3 days.  ??  We are over 9 weeks off oral chemo total out of the 17 weeks he's been on maintenance.  He's supposed to take his oral chemo daily without missing a day.  I hope they can solve the mystery of the low counts monster so we can get him into a more 'maintenance like' life.  So far the only time we have felt like we were in maintenance was the first three weeks of maintenance.  It's been a roller coaster ride of low counts, infections, and hospital visits ever since.  Don't get me wrong though, we are doing great!  and all of the 'downs' make the ups so much better so don't worry about us, we have so much to be thankful for!

His lips are still creating this weird peely thing where the stitches are.  Anyone know how long it takes for stitches to dissolve?  It seems like they are taking forever to go away.  Actually I guess it has only been about 3 weeks since his biopsy so maybe that's not forever as stitches go.  I'm not sure why his lips do that peeling thing.  I've always correlated it with low platelets, but his platelets are fine right now.  He's not dehydrated so I have no clue.  He has had problems with his lips since he was diagnosed.  I guess it will always be one of those weird things that no one can explain.
If you missed our last post you might want to scroll down, Ty had so much fun doing a 'dressing change' on dad.  He keeps asking if he can do it again. : )  He was also pleased that Brooke and Brenna both had to get pokies at their Camp Hobe physicals this week.  Starting to wonder if Ty will be stable enough to go this year...here's to hoping.

Dressing Change on Dad, Back off Chemo

 We said goodbye to the picc line today.  His oncologist wanted it out as soon as he was done with the vancomycin because of the positive strep blood culture last Thursday.

 His nurse just cut the stiches and pulled it out...no big deal.  Getting the dressing off was way more annoying than pulling the line out.

We had a little fun with the dressing today.  We got the idea from another cancer kid to let Ty do a dressing change on someone else.  Dad volunteered and when Ty put it on his arm and took it right back off it didn't hurt that bad so he did a few more, including down on the hairy part of his arm.  I'll post the video of Tegaderm application and ripping off number 7... I'm sure by this time it was more like what it feels like on Ty's raw sore skin when it gets washed with alcohol and chloraprep.  It was pretty funny that Merin also knew exactly what to do...

He had a CBC today and ANC is 300.  That means he is back off chemo after only being on it for three days...?  Not sure what is going on with that.  I guess we'll see what his counts are next Friday and go from there. for my records: WBC 1.9, PLTS 199, HGB  9.7, HCT 26.7, hematocrit is getting pretty low too, but now that he's not on chemo that should recover pretty good so we won't do a transfusion for now.

Not sure why his finger tips look like this.  Those little pin-pric dots showed up when his hands were wet, they don't really show as much when his hands are dry.  Must be a side effect of one of the meds he's on or something.

Clinic, Eye Doc, & CT scan

 Farewell scab party!!  His home health nurse promised some red velvet cake to celebrate when his scab fell off.  He likes the frosting.  She also brought him some starburst the other day which he had never had before.  As he was eating them he said, "what are these called?"  They might possibly be his new favorite.

 Got up at 4am for our trip to horsey doctor today.  Dad was awesome to drive the whole way and let mommy and Ty sleep a little.   On the way home he was very happy and very into his DS game.   It was so fun to see him so animated and having so much fun.  First appointment was with the eye doc.  When he was inpatient they checked his eyes (along with everything else) for fungus and didn't find any but did see some signs of hemmorage and wanted us to follow up.  His eyes are totally fine! Yay!

Next was CT scan to see how the fungus in the lungs is progressing.  He holds really still while he rides in and out of the 'spaceship'. *warning* lots of boring details ahead: The CT showed that he still has spots, and they got the voriconazole (antifungal med) blood level test back and it was too low so they doubled his dose.  He will be on that for 4 more weeks and then they will do another CT at his next appointment.  The good news is he doesn't have to be on steroids this week cause fungus likes steroids. Yay!  So at clinic he got his vincristine and we talked to the doc for a while.  She agreed that camping, lakes, and rivers are not really an option right now, she said with his history his counts would have to be really high for her to agree that those kind of activities were okay.  She also said being off chemo so long like he has certainly isn't ideal, but they worry more about kids who are off of it with high counts who are just refusing or forgetting to take their chemo than they do about kids who are off because of low counts.  She wants him to be on the vancomycin until Friday and then pull his picc line out.  She said the type of strep he had in his blood culture usually is just a skin contact thing but with these kids who are neutropenic a lot you have to be really conservative so as soon as the IV vancomycin is done she wants the line out.  That means a couple of pokies (IV at his next appointment in June and CBC to check counts next week) until they get his new port in in July (hopefully), but he has a really cool pokie prize on its way from his aunt in Utah and he's dealing with the idea better than he has in the past.  And no picc line is awesome cause she did say swimming pools are okay because of how heavily chlorinated they are.  He's been asking about the dragon slides (Cherry Hill water park in Kaysville) nonstop so he will be happy that we get to go there soon!

These clinic days always wear him out.  He came home and fell right to sleep as we hooked him up to his vanco.  He weighed 16.1 today which is 35.42 pounds and they didn't do another CBC since he got one yesterday.  His chemo pills are being cut quite a bit, she cut his 6mp in half so he will take half of a pill per day 25mg.  His methotrexate is cut down to 1 pill, that's 2.5mg.  To put that into perspective when he started maintenance he was taking 1 6mp a day 50mg and 10 methotrexate pills a day 25mg.  I am curious to see what this does to his counts, and I don't have any predictions this time.  We are hoping it is just the right dose for him.  We are also hoping for no more fevers.  This is probably the most boring technical post I've done in a long time... it's fun to be boring!  Thank you thank you for dinner!  Thank you for the prayers, concern, and for loving our other kids while we can't be with them.  We are so so blessed and life is good!

No More Scab!!!

 His scab looked like it was hanging by a thread yesterday.  Saturday night when he was asleep we peeked under it.  It looked a lot like it was attached to the lip by a vein so we thought he must have developed a pyogenic granuloma under there.  We were thinking we'd have to go in today and have his scab cut off and that vein cauterized.

Still on vancomycin. 

 We had a great time yesterday at a picnic where we met Mike Evans who is running across the state of Idaho in June to raise money for local kids fighting cancer.  He is planning to run 50 miles a day!!! You can see his blog "Mike's Extra Mile" by clicking HERE.  You can see more information about the Tenley Foundation and our awesome cancer buddies on the IdahoFighters blog by clicking HERE. 

His giant scab fell off in the night!! Woo Hoo! That means it wasn't a pyogenic granuloma after all.  Yahoo!

 We went to the doc anyway cause Ty needed a CBC and I think they still wanted to check on him.  They were going to see what they needed to do about his lip...the scab fell off just in time!

We were there for a long time waiting for CBC results and for the doc to talk to his oncologist at Primary Children's so Ty and Merin took turns spinning on the doctor chair and then trying to walk.  His counts are up a little from the last CBC which surprised us!  WBC 2.7, RBC 3.28, HGB 9.1, HCT 28.5, PLT 139, ANC 999!  So we go to his appointment tomorrow and he starts up on chemo and steroids again.  It will be a pretty long day cause he has an eye doctor appointment, a chest CT scan, and clinic scheduled.  Whew!  Going to have a farewell giant scab party today!

Going off the rails on a crazy train sir

Sorry had to do it...just couldn't think of a title for this post.  Yep.  Megamind.  It has so many good
 one-liners in it I could use one as a title every time I post.  You're welcome.
Tyson is feeling pretty good.  The Vancomycin is doing a good job, which is great cause I guess it is one of the big-time antibiotics that they try to only use when other stuff isn't working.  (He fevered and grew out a positive blood culture while on Ancef) So it better be working!  The gram positive cocci (bacteria) that was in his blood turned out to be Alpha Hemolytic Strep which I guess is a pretty common type of strep and not a huge one to be super worried about since it looks like they already have it licked.  So far his culture from yesterday hasn't grown anything.  His counts however are continuing their nosedive.  WBC 2.8 down a lot, HGB 9.5, HCT 26.7 down quite a bit, PLTS 119 up a little, ANC 600 down a LOT.  He's back down to almost neutropenic which is anywhere from zero to 500. 

While the other kids and dad are at the movies and a barbeque at Grandma's he is occupying himself squirting water in the bathtub with various devices including old saline flush syringes.  We also went to the carwash today to watch the rainbow wax and got some drive through Arctic Circle hamburgers (without the hamburger of course, he only likes the top bun complete with lettuce ketchup and mayo).

The lip scab is about half hanging off now, it is taking a considerable amount of self control for everyone involved to keep us from ripping that baby off.  We don't want a scar of course so we need to leave it alone...but we are so excited for it to fall off.  And that's all the news I have...so fun to be boring!  Happy Mother's Day!
Ty will have his blood tested on Monday to see if he will start back up on chemo at his clinic appointment set for Tuesday.  He is at two weeks off chemo now which makes his grand total off chemo since he started maintenance 8 weeks.  So he has been in maintenance almost 16 weeks now and 8 of those weeks have been totally off chemo.  That's 50 percent.  The doc told us at the beginning of maintenance that his 95% chance of not relapsing depended on him taking his chemo 95% of the time.  booo. (she was telling us that so we wouldn't get into the habit of forgetting to give him his chemo pills, trying to stress that it was important not to miss...and believe me we never missed...but he's missed 50% of them anyway because of low blood counts)  I haven't had a chance to ask his oncologist what she thinks of all of this time with no chemo...if we go Tuesday we will definitely be asking that question.  It's no fun to fear the 'r' word, we try to just have faith that whatever the Lord has in store for him will happen and that we will be strong enough to deal with whatever comes our way, but we also try to protect ourselves emotionallly by knowing all of the possibilities.  And then when he is doing well we feel like we were just being dramatic and we become confident that he's going to beat this and be fine...and then he gets sick again and we start to wonder again.  I guess that's where the crazy train comes in ha! 

Bacteria in Blood, Video

Ty is feeling much better today.  We gave him Tylenol last night at about midnight and he hasn't had a fever since.  He is also walking today, I don't know if I mentioned that his hips and left leg hurt really bad yesterday and he refused to walk.  We figured that was the after effects of the Neupogen shots cause they can cause bone pain.  His stomach hurt really bad off and on yesterday too.  Last night when I put him to bed his tummy and his legs were hurting, I recorded a video of how he read his stories anyway even though he was hurting.  He is one tough little buddy.  I'll post the video below.
We got a call from the pediatrician this morning to tell us that his blood culture did grow out a gram positive bacteria cocci.  They haven't determined yet if that is a staph or a strep. I would venture to guess it is the same staph aureus that has plagued his lip but who knows?  There was another little girl up in ICS who got strep while we were there so maybe that sneaked in when they put in his picc line. Obviously the Ancef that they put him on when we were released from the hospital was not strong enough to take care of the problem.  They switched his antibiotic from Ancef back to Vancomycin so hopefully that will take care of it.  Lucky for him his ANC is high so he can still be treated for it at home.  Kind of scary for us...we watched and worried last night as his fever went back up after he was in bed.  It got up to 104.1. That's when we gave him the tylenol.
The bad news is his ANC (that is the number they use to determine your ability to fight off infection) is already dropping.  WBC 5.3 down some, ANC 2600 down quite a bit from yesterday, PLTS 106 up a little, HCT 30 same. 

The lip looks a teeny bit smaller every day.  Here is what it looks like before I put the softening cream on this morning.  It looks a lot scarier with the cream on.  Here is the video, I wanted to give you a glimpse of what a trooper he is. If the video doesn't work you can watch it HERE

Fever

 Yesterday (May 9) was so much fun!  Ty was a normal kid, playing outside, riding his bike,

 Playing with his bro and his sisters,

 Eating Reeses 'circles' from his favorite nurse while he's hooked up to meds,

 And then this morning (May 10), he woke up with an elevated temp.  It was ranging between 99-100.  His nurse came to give him his meds and was worried, I was worried too so she called his docs and we went up to the peds floor to get a CBC and cultures.  When we got there his temp in his armpit was 103.5.  So 'here we go again' I was thinking and got his hospital 'to go' bags out of the car.  Then the doc came back and said his ANC is really high like 5000 I think he said (forgot to get a printout) and his WBC is 7.5 I think.  I have never seen his white counts that high.  So they said you can go home and as long as he has a fever we will have home health draw cultures and a CBC.  So I put his 'to go' bags back in the car and home we went.

Hugging his new picc line covers that came from Amazon today.  He likes the ninja ones the best.  His temp stayed between 102-103.5 until about 6:00 tonight.  Then it slowly went down and is now (7:00pm ish) at about 100.3 and he is perking up and talking and eating and stuff.  That is a good sign.  It is more scary to sit at home and watch him fever than it is to be at the hospital, especially since he is already on antibiotics and antifungals so what in the world is ailing him we wonder.  For now we wait for culture results and watch him.

Dad was pretty proud of himself filling in for the nurse this afternoon because she couldn't be here for that dose.  Ty just sort of drifted in and out of sleep while he was fevering.  We are relieved that his temp is lower, hopefully that means his body is successfully fighting whatever is causing the fever.  Hopefully.  and I'm gonna go find some chocolate to eat. : )  For my records: WBC 7.5, RBC 3.6, HGB 11, HCT 30.2, ANC 5000, PLTS 93

Ahhhh, I tell you minion, there's no place like evil lair

Couldn't resist using a quote from one of our favorite movies.  You get a prize if you know what that is from. ; )  Yes we watch a lot of kid movies around here.

We got home about 11:00 last night and then waited up for our favorite nurse to come by and give Ty his IV antibiotics.  It took Ty some time after she left to finally fall asleep cause his lip was slowly bleeding, and I think in a strange way it took some adjusting to be in his own bed again. 

Yesterday before Ty left the hospital they had someone from Wound care come up and see him.  She looked at his lip and said, oh, that's just dried blood.  She gave us some cream to soften it up so his scab will go away and they will be able to see how it is doing underneath the scab at his appointment next week.  His lip already looks a ton better!  Here is a pic of it last night after we got home...the white is just the cream.

It bled a little on the way home...hence the dried blood all over his face.  I know it looks nasty, but you quickly learn in this business when to bother your 4 year old and when to leave him alone.

Dad did clean it up a little later cause he was rubbing it all over his face.

He's just been his good old self this morning.  Merin sure is happy to have her buddy back.  I got a tip from another cancer mama that baby leg warmers make good picc line covers.  That way it won't get caught and pulled as easily...seems to be working really well so far.  He's very excited that there are some ninja and guitar ones on their way from amazon.

His lip bled a little throughout the night, it's weird to see a little bloody handprint on your kid's bed in the morning. (don't worry, it never started bleeding profusely, just kind of leaked...believe me we were checking)  But it looks so much better this morning!  The part of the scab that is attached to his lip is already so much smaller, even than it was last night and so far underneath is just healthy pink lip.  Yay!!  (the white is just the softening cream)  We can't wait until that big hunk of dried blood falls off...I'm sure Tyson can't wait either.

It is so fun to be 'normal'!  Other than meds and being cautious about germs and stuff we are hoping to just be normal and boring for a while! 

And the best news?...we didn't have to come home on neupogen shots! Yay!

Hospital day 11

It was very strange to drive home last night without Ty in the car with us and it is strange to be home without him.  He told daddy today that I am the snuggle mama and he is the fun dad.

Yes he's had the same shirt on for like 4 days now...I made the mistake of putting one on him the day he was off fluids.  Then they put him back on acyclovir which means he needs to be on constant fluids to protect his kidneys so he hasn't been unhooked since... which means he can't take his shirt off cause his arm is hooked up to the IV pole.
He was pretty excited to wake up to a giant cinnamon roll this morning and said to dad: 'I even like the parts with no frosting.' 

Good news! His ANC is 200 today!  That is still considered in the dangerous neutropenic range, but it is progress in the right direction! Finally!  The oncologist who is on this week told Ty's dad that if he continues to improve he might send him home tomorrow or Wednesday! Yay!  They have to figure out what cocktail of meds would be best to send him home on.  Hopefully not neupogen!  WBC 2.8 up a little, RBC 3.56, HCT 30.4, PLTS 44 down a little and he weighs 16.5 which I think is the same as when he was first admitted. 36.3 lbs.

The Infectious Disease doc who is on this week doesn't seem to be as concerned about his lip as the other doc was.  I guess it oozed and bled a little in the night, and so his scab looks a little bigger to me in the pictures, but it is hard to say without being there.  She said it is probably his way of pushing the junk that was in his lip out but she does want to keep an eye on it for a couple more days.  She also would be expecting to see other signs of illness if it were something more sinister and he's doing so well!  This is all hearsay of course since I'm not there and I'm hearing all of this second hand, but I think that is the gist of it.

Yesterday they were a little concerned about his new picc line cause it was red and tender, but it doesn't seem to be as red today and might just be red and tender because it is new and tegaderm tends to make his skin red anyway.  The nurse taught me how to change the dressing on it yesterday and he was not happy at all!  Dressing changes are painful, that dang super sticky tegaderm!  With all of the meds he's on, if he got an infection now I would venture to guess that would be very bad so whew!  Glad it's doing better today.  They were concerned about it right before I went down to hospital church.  That was such a great meeting, I'm so glad they do that for the families who are there.  It was hard to sing the opening song "I'll Go Where You Want me to Go Dear Lord" cause it has such a different meaning now than it did in the past.  It was good to hear testimonies of some other parents of children who are there. I'm sure most if not all of the parents there are dealing with a child who has a life threatening illness. 

So dad and Ty are in Xbox heaven, having a fun time today and waiting out the stay.  They built a fort yesterday with blankets and the food tray above his bed, and I just got a text from him that says 'he is keeping me busy!' 

Oh and with the busyness of Saturday I didn't get a chance to post pics of the kids coming to visit which was so much fun!  Ty loved having them here and I took them two at a time down for some lunch so we could have some time together and I could find out all of the happenings of the week at home.

They brought a super cool octopus balloon and some foam rockets which are perfect for entertaining in a hospital room.  Brenna didn't come cause she had a sore throat, probably from her hayfever but we have to be super cautious

Which reminds me of some other super dumb news.  Camping and hiking has always been a big part of our summer and what we look forward to.  With summer approaching we keep forgetting to ask our oncologist about which summer activities will be okay for Ty.  Dad talked to the infectious disease doc today about our little hike a couple of weeks ago, and about camping in general.  She said any time you are dealing with dirt, especially farther away from home you are increasing his risk exponentially, and water adds even more to the risk.  So it looks like we are going to be hotel people for a couple of years, we might have to count Cherry Hill as our camping trips since it is grassy and the water is chlorinated. 

Thank Goodness for Camp Hobe!  At least the older kids will get to camp a little! : )

lippety lip lip Daddy's Here!!

Daddy's home!!  Now that he is here I can tell you that he was gone this entire month except for one day.  We don't like to broadcast that kind of stuff on a public blog.  He was doing some military training.  Ty is excited to have him here, he is much funner and funnier than momma. : )  We haven't heard from the docs today but our plan right now is for Brady to stay with him for a couple of days and I'll go home and then come back depending on what we hear about when they are going to release Ty.

 Ty was looking at his Elmo balloon and wondering if they made a oscar the grouch doll like the elmo doll he got while he was here.  He's never seen Sesame Street but I told him about oscar the grouch and he thinks he's funny.  So daddy brought him an oscar the grouch doll.

 So I really hate to admit this, but now that I've seen his lip this morning I might have to say the Infectious disease guy might be right.  His scab has spread to a part of his lip where there wasn't any trauma that I know of.

See how it is moving to the left?  The ID guy thinks there is something going on that is making his capillaries react and grow a bigger scab than it should.  I am discouraged today to see that he might be right.  I am hoping that his lip just bled a little and that extra scab is just from that but it really looks like it is attached to the lip, not just dried blood.  And there is no blood on his pillow. Ugh.  That also means that if it is growing on all the meds he's on right now I don't think that is a very good sign.  Booooo.  Hoping it is nothing.  We'll see when some docs come round. 
You gotta love hospital church...it's half an hour long and we don't have to dress up...looking forward to that if Ty lets us go. I'll update more when we find out more...
Counts for May 6: WBC 2.1 up a little, RBC 3.58 same, HGB 10.2 same, HCT 30.1 sameish, PLTS 59 lower, ANC 0 same...ugh...
They are going to teach Brady how to do neupogen shots today cause I really don't want to do it.  I'll do the dressing change on his arm, but not too fond of giving my kid shots.  Neither is Brady but he's at least done IV's on army guys and stuff so he said he'll do it. Bleh

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 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.