No More Bugs!

We're still here...waiting for negative cultures.  Every day they have taken cultures and every day they grow bacteria.  The first cultures that sent us to the ER grew out of both lumens (his central line has two tubes...or lumens)...both gram negative rods.  They identified the bacteria as e. coli, which wasn't surprising at all.  Nate has been having such bad diarrhea for almost a month that caused him to poop all over himself, literally from head to toe...no, I'm not kidding...at least once a day, sometimes more.  His lines got pooped on, over and over again.  We cleaned them of course...we cleaned them well, but apparently not well enough.

They have Nate on antibiotics and every day they take cultures.  Every day, they have been growing...but only in one lumen now.  So, it is pretty obvious that the infection in his blood is being treated well, but there are still bacteria stuck in his line.  Many times they are able to knock out the bacteria stuck in the line by running the antibiotics through the line, but sometimes the bacteria form a thick "biofilm" on the plastic of the line and hang on tight.  It seems that these bugs are hanging on tight.  So, after five days of positive cultures, they decided to pull his line today.

They placed a temporary IV in his arm, which took three tries...poor baby.  Then, this morning Nate went in to surgery to have his line removed.  We've told Nate from the beginning of this hospital admission, that he had to go to the hospital because he had little bugs in his line that could make him sick and the doctors had to give him medicine to get rid of them.  Chris told Nate last night that they had to take his line out and clean all the bugs out, then put it back in a few days.  Chris said Nate was pretty upset about the thought of his line coming out.

This morning he woke up asking for food and couldn't have any because of the anesthesia.  He was upset but I was able to distract him until transport came to get him.  He then started to get upset about having to go downstairs to have his line removed.  I think it was a combination of the thought of this thing that has been a large part of him for the last 6 months being removed...and leaving the comfort of his hospital room (he always gets a little nervous when transport comes to take him somewhere for some test).  He was a little mad at me in pre-surgery, telling me he didn't want his line out and he wanted me to go home.  The anesthesiologist gave him some happy medicine, he started smiling and was wheeled away.  The procedure took about a half an hour and as the volunteer was walking me back to see him, I could hear him screaming.  He was P-I-S-S-E-D that his line was gone, and it was all...my...fault.  He wanted me to go away and for Daddy to come.  He didn't want his nuk, he didn't even want poor Softie...he didn't want "ANYTHING!".  The nurse gave him a tiny bit of dilaudid and we went back to his room.  He was much happier settled back in his familiar room.

Then he began to eat.  He ate a breakfast bar, 12oz of milk, popcorn, drinkable yogurt, a bite of cheese, some fruit loops, some little sprinkle cookies, a fortune cookie, part of a banana, half a bag of chips, some bites out of his muffin snack tray and an entire PB and J sandwich...over about 2 hours.  He's been eating so great since we've been here.  It's a bit of a challenge because he doesn't like the hospital food, so we are keeping a steady stream of outside food coming in, but it seems to be working.  He is up about another 0.5 kg from being weighed at clinic on Wednesday.  Some of that is probably fluid weight that you gain when being on IV fluids in the hospital.  He is also weighing in a diaper and hospital gown, as compared to jeans and a sweater at clinic, so I'm hoping it evens out.  He is up to 14.1kg.  His ideal weight is 17kg but he has never been above 16.5kg.  His lowest, earlier this month, was 12.7kg.  If we can get him near 15.5kg before transplant, I will be over the moon!

Right now, his line is out.  They took it out this morning, gave him a few more doses of antibiotics and drew cultures out of his hand 6 hours later.  Really, there is no reason these cultures should grow anything.  Assuming they stay negative (which they should) for 48 hours, Nate will go back in to surgery on Thursday to have a new line placed (he thinks he is getting the same one back...after it goes through the dishwasher).  He can then come home.  Hooray!!  He will come home on IV antibiotics that Chris and I will be able to give him.  I'm kind of happy that the antibiotics will be IV, because the poor kid is already taking 17 doses of oral medication a day (not counting his Flintstone vitamin and the Culturelle I put in his milk)...and he hates every drop of it.  He is a very good boy about taking his medication though, he kicks and screams for a second, then takes it like a champ.  I think I'd kick and scream a bit if I had to take 17 yucky medicines a day too.

What's that?  You wanted to know about Nate's poop?  I knew you did!  Nate has had three...count them three...solid bowel movements over the past few days.  Remember that head to toe diarrhea at least once a day for a month I was talking about earlier?  Chris and I have never been so happy to see a solid poop in our lives.

I have Nate up and walking the halls several times a day and the whole floor knows when this is, because he screams at the top of his lungs the entire way.  It also tires him out pretty quickly, but I am determined to get this boy as strong as possible before transplant.  He really wants to go to Chuck E. Cheese (because the Peter Piper Pizza that is right by our house that he has been asking to go to...closed), and I promised him that we will take him before transplant admission.  A little NED celebration...but it's not going to be much fun if he won't walk.  So, we will just keep walking...screaming and all.

I found out that we have no worries when it comes to the timeline for antibodies.  So, that is a huge weight lifted.  I was not succeeding at the "don't worry until there is something to worry about", and was quite literally losing sleep over it.  As of right now, we still don't know when his transplant will start.  The earliest will be next week, with admission a week from Thursday, though it could be pushed back another week.  Infectious disease and transplant are discussing and deciding.  It is a balancing act between starting transplant ASAP and not giving any hidden cancer cells a chance to grow, and making sure Nate's infection is completely gone.  The biggest risk to transplant patients is infection, so we need to make certain that he enters the process, infection free.

Overall, Nate is doing pretty good.  I just can't wait to get him home, so we can be home for almost a week before transplant.  He's eating and pooping and walking (sort of).  He's getting stronger and stronger every day.

I want to ask for some prayers for a little friend of ours.  A couple weeks ago, we met a little boy named Jake at clinic.  Jake has been battling Neuroblastoma for 6 years, from the age of 2.  Jake does not have a Facebook page, blog, or Caringbridge site.  His family has been quietly and privately fighting this war for years.  Jake's battle is coming to an end.  He has been in the hospital since we met him and his family has been getting one piece of bad news after another.  They have been told that there is nothing more that can be done for Jake.  Anything more would cause more harm than good.  On the outside, Jake looks great.  On the inside, Neuroblastoma is quickly taking over his body.  The doctors have been preparing his family for what will take place over the next couple weeks or months.  Jake's mom says that sometimes he says he wants to fight and sometimes he says he is done fighting.  Unfortunately, the disease is now making this decision for him.  Please pray for Jake and his family.  This is not something that a little boy and his family should ever have to go through...it's just too much.