Blood Infection

It's always something.  For about the last week and a half, Nate has been having these episodes where he would get uncomfortable and moan, then he would get warm, and then poop.  He is still fighting the c. diff. infection and is having really bad diarrhea.  These episodes were mostly happening after bedtime, almost every night.  I mentioned it to the doctor last week and he thought Nate was clearing the toxins from the c. diff. from his system.  A few days ago, I started to think that these episodes were also happening a couple hours after we flushed his lines, which we do at bedtime.  On Monday, I decided to flush his lines before nap to see if he got warm and uncomfortable during his nap instead.  Sure enough, two hours after flushing his lines, it happened.

I called our nurse clinician on Tuesday morning and asked if we should have his lines cultured.  She thought it was unlikely that he had a line infection because he would be much more sick and feverish, but she was going to check with the doctor.  I flushed them at naptime again and again he got a little warm, two hours later.  Our nurse called that same afternoon and said that the doctor did want to culture the lines to be safe, so we made an appointment for Wednesday morning.

My mom brought Nate to the clinic on Wednesday morning, because I had to work, and they had a rather nice visit.  His weight is up 1 kg from his lowest point, which means he has gained a half a kg a week.  They said that is what they would aim for him to gain with the NG tube in, so I am very happy with our decision to have it removed.  Really, I don't feel like he has even eaten that much and feel like he is capable of so much more.  I spoke with the NP on the phone for a while and told her exactly what has been going on with Nate.  She said that it didn't seem likely that he had a blood infection, because he would be much more sick (at that point he was in the stroller munching on Cheetos and chatting with everyone).  They took the cultures anyways.  We discussed his weight gain, future appointments and blood work.  His hemoglobin had dropped and she thought a blood transfusion would be a good idea.  I said that I would rather my mom not have to sit around the clinic all day for him to get blood and I would bring him in on Thursday morning.  They sent Nate and my mom home with a container to try and get a stool culture to see if that could be the source of his "warm episodes".

Grandma said that she and Nate had a lovely day.  They drove around and chatted.  Went home and played, watched TV and napped.  He also ate a bunch with Grandma.  Far more then he has been eating in the past weeks.  They had flushed his lines at clinic, so I had my mom be on the look out for a fever.  She thought maybe he got a bit warm, but no fever.

Then at 4pm I got a call at work that his cultures had grew bacteria and we had to get him to the ER, now.  Apparently, his blood grew gram negative rods which is very serious.  Nate's transplant doctor today told me that she "respects gram negative rods".  Usually, kids get very, very sick with this infection.  They usually have hours, not days, before they can become septic and even die.  Yet, somehow it seems that Nate may have been fighting this infection for a week and a half.  Wow!  Crazy.  Super Nate to the rescue.

So, here we are.  Nate is actually doing quite well.  His spirits are high and his appetite is the best it has been.  He has been eating all day long.  I brought him a HUGE bag of all different kinds of foods.  At the suggestion of Grandma, I brought a muffin tin and Nate and I filled each muffin cup with a different snack.  Since he only wants to eat a couple bites of each thing, the muffin cups are perfect and he has been snacking out of them all day and has even eaten a bit of hospital food.  His new favorite food is fortune cookie.  He saw one on TV a couple nights ago and has been obsessed ever since.  He called me last night and asked me to bring him some, then told the nurse first thing this morning that Mommy was going to bring him a "whole box of fortune cookies".  Well, I found a bag of them at Albertson's after work yesterday and he ate TEN fortune cookies today!  The kid is going to turn in to a fortune cookie!

I met with the stem cell transplant doctor and nurse today while Maya entertained Nate (thanks Maya).  I found out that Nate was indeed randomized to two stem cell transplants.  Ugh.  Chris and I have to talk a bit more but we are pretty confident in our probable decision to drop out of the study and only put Nate through one transplant.  Nate's doctor mentioned that she has another family that really, really wanted their child to receive two transplants and was randomized to one.  Really, it makes me sick to my stomach that we can't switch with this family.  It just doesn't work that way...it has to be random.  I don't know their child's situation, but it breaks my heart that this family's mind could be put at ease and here we are stuck with two transplants and don't want it.  We have until Monday to give them our decision.

Nate's transplant will indeed need to be moved back a week.  There are some possible timing issues with this and I'm trying not to worry about them until I know there is something to worry about.  I am concerned that this set back (as well as the set backs we have had along the way) could put Nate's ability to get the antibody treatment at risk.  The antibody treatment has to be done a certain number of months from diagnosis and I don't know what that number is, or if we are getting close to that number.  I just know that Nate has had several timing set backs and it is making me nervous.  We should know some more information soon.

Right now, we are waiting for the bacteria that grew in the cultures to be identified.  Once they know what bacteria we are dealing with, they will know better how to treat it.  He may then be able to go home in the next couple days on antibiotics (probably IV).  Just waiting and seeing right now.  He is currently getting two broad spectrum antibiotics.  He spiked a fever last night, two hours after they flushed the antibiotics in to his lines, but has not had any fever since.  They drew more cultures today and last I heard, nothing had grown.  The other question we don't have answered yet is if they are going to put him in to surgery to replace his line.  Three teams of doctors are discussing and will decide.

I am trying to look at this blood infection as a blessing.  Maybe this was the answer to my prayers.  God does work in mysterious ways.  Nate has the extra week now that I so desperately wanted for him to work on building his body mass and strength.  This would normally be an infection that would make a child very, very sick...but Nate is not sick.  He is better than he has been in over a month.  Crazy that a serious blood infection could be the answer to our prayers, but you never know.  We are now praying that there will be no problems with a timeline and Nate receiving antibody treatment in the future, that we make the right decision about Nate receiving one transplant or two and of course that this blood infection is cleared up quickly and completely.

Unfortunately, now we will not be able to bring our little super hero to the benefit tomorrow night. Chris and I will be there for a bit, though, and we are really looking forward to it.