As you know we were admitted on Mother’s Day, last Sunday, due to Penelope’s fever.  On Wednesday they decided to let us go – her blood cultures had come up clean for two days, so it looked like we were good to go.  They discharged us at around 2pm that day, by 5pm we were getting phone calls telling us to bring her back in.  Apparently, the culture they took late the night before had actually produced bacteria…again!  This time though, the bacteria had mutated – apparently this strain is fairly resistant to particular antibiotics.  So instead of dying, it just reproduces itself in a slightly different manner that’s affected much less by the antibiotics.  At this point the doctors are thinking that it may be her chest catheter itself that’s infected.  This type of bacteria can actually seat itself within the plastic of the line.  So there were a few options to consider – replace it outright – a ‘minor’ surgery, or try to flush the line with a dissolving/cleansing agent that can get the bacteria out of the line, even if it’s embedded in it.  The ID doctors (infectious disease) recommended that we go with the latter, which constitutes of flushing/saturating one side of the line with Ethanol (yes Ethanol) for 6 hours while the other side still feeds her antibiotics.  After 6 hours you switch lines (there are two lines/ports on her chest catheter) and sterilize the other for 6 hours and feed the meds through the other.  This repeats every 6 hours for 5 days…

Carina had spent the night at the hospital that night and I get a call at about 730am from a hysterical Carina who’s crying and going a million miles a minute.  Carina and Penelope had been downstairs in the cafeteria eating Cheerios and drinking coffee (I’m sure you can figure out who was doing what) and Carina was talking to another Mom of a little sickee when she heard a ‘pop’…she turns her head, looks at Penelope and just sees blood starting to stain her shirt.  She had pulled on her chest catheter and it literally broke right off!  The ‘main’ line had broken, above where it splits into two tubes, so she’s just dripping blood and the cafeteria is on the second floor – her unit is on the third floor…now panic sets in.  Carina gets her upstairs as quickly as possible – yells for a nurse, and as soon as she sees a nurse that she knows…she just falls apart…Granted, I’m not even there at this point, it’s just a barely awake baby and a Mom who (I’m sure) could’ve used another cup of coffee before all hell broke loose.

Now things are moving quickly – the first nurse grabs some hemostats and clamps the end of the tube about a half inch up.  Another nurse grabs some sterile gauze, another some adhesive – and now we’ve got our young lady cinched up and not bleeding…that’s when Carina called me.  My poor babe was freaking out.  Can you blame her!?!  I honestly felt bad for not being there.  I had 2 different conference calls to get handled and a few dozen account updates to get in the database, etc., etc., but as soon as she called me crying I just bailed and got down to the hospital.

At the time we were in a really, really, really small double room with another family that had a 2 year old who had a blood disorder.  The parents were getting mad at the doctors because their daughter was sick, literally!  They were refusing treatment and wanted a second opinion from their ‘own’ doctor, so their little daughter just screamed, and screamed and screamed and…

After two days of that we were able to get moved to a different double room that may work better for our family and allow both the baby and Mom to get some sleep…now this is awesome, because this is when we got to meet Marley.  She’s an adorable 11 month old little girl that has a softball sized tumor on her kidney.  She and her parents were in for their 1st round of chemo, so it worked out kinda well that we all got to be roomies.  We’re (the Buttress’ family) working on round four of chemo, so it was helpful for them (I hope) and really cool for us to meet another family with an adorable little girl that’s going through a really tough cancer situation.  I know that might sound weird, but when anyone can even kind of relate to your situation – for some reason it just helps.  You, at least for a second, feel like you’re not alone.  Like you just might make it through this…other people are doing it, so you can do it too!  It does help…it really does.

Sorry, I don’t have any pics of Marley to post right now, but I bet you we will soon!  Penelope and Marley were playing in the activity room today (?) and I just forgot to get a shot.  I’m sure you can imagine, they’re just cute little girls with way more tubes than should be allowed.  But, when you see them smile – you just wanna cry…that’s the definition of precious.

So – back to Penelope, she has to have her chest catheter replaced.  Today she went in to the Operating Room and had the rest of the line removed from her chest.  They had to put an IV in her hand for the moment and it looks like they may (on Monday) put in a picc line to take place of her catheter until it can get replaced on the 24th of this month.  Apparently the pick line is installed via the vein in the bicep and runs up near the top of the heart.  It’s more permanent than a standard IV but much more temporary than the Hickman catheter that she had and will be replaced.  She needs to be on antibiotics for another 7 days and chemo is supposed to start in just over a week – so we’re not sure if/when we’ll be back home for any length of time.  With any luck we may be able to be home for 3 or 4 days before we’re re-admitted, but time will definitely tell.

Thanks again everyone, hope to see you next week at the benefit show!

Best

Aaron