Wednesday, January 4, 2012

The Fight Continues

For those of you praying for Theo, please say an extra prayer for him today.  He came down with a fever overnight, so the doctors are starting him on additional antibiotics to be on the safe side.  That is the cliff notes version.  If you are interested, I'll provide some more context below.

Feeling better = play time!

As I last wrote, Theo developed peritonitis on Monday, December 26th.  The nephrologist started him on antibiotics that same day.  The doctor knew that it would take several days to get the specific bacteria identified, but opted to use two antibiotics in Theo's dialysate that treat approximately 99% of bacteria.  Theo's condition seemed to improve very slightly over the next couple of days, but he was clearly still not feeling well.  He started retaining a lot of fluid, causing him to gain over 1 pound in 2 days.  (Proportionately, that would be like most of us gaining 15-20 pounds of fluid weight in that timeframe.)  He was quite the chunky monkey.

On Thursday, the lab was finally able to identify the specific bacteria that was in Theo's peritoneal cavity.  It is a particularly nasty bacteria, called enterobacter cloacae.  This bacteria is one of the few that is resistant to the antibiotics used in the dialysate.  Once the results came back, the nephrologist and neonatalogist immediately started Theo on a new antibiotic intravenously in case it has spread outside of the peritoneal cavity and into the blood stream.  I have read quite a bit now on the bacteria, and it a scary one, particularly for someone like Theo.  Of course, the antibiotic that they used in the IV is not without its own pitfalls -- it is metabolized by the kidneys, so is considered toxic in high enough doses for someone with kidney failure.  As a result, Theo was only given one dose through the IV and then a different, non-toxic antibiotic was started in his dialysate again.
Not feeling so hot.  Still, a pretty cute face.

Fortunately, so far all the lab work shows that the bacteria has not gone systemic.  The antibiotics in the dialysate also seem to be working well, and Theo has lost the fluid weight that he gained.  (In fact, there was a bit of an overcorrection; he lost too much weight after the doctors made changes, but now seems to have rebounded to where he was before the infection.)  He has been looking healthier over the last few days, and seems a lot less uncomfortable.

Yesterday, though, he started to seem fussy again.  Nick and I noticed that he had a lot more gas than normal, and he was not eating well.  Towards the end of the day, he started having some diarrhea.  (Sorry if that is too much detail.)  His temperature, which we take every 3 hours, started to rise slowly.

Don't make me eat when I don't feel well!
This morning, at 3:30 am, the neonatologist called to let us know that Theo's temperature had climbed enough that they were going to start him on additional antibiotics through an IV.  We are praying that Theo just has a little bug, and that the infection has not spread into his blood stream.  Hopefully, the antibiotics will work their magic and Theo will be bug and bacteria free shortly.

The past week has shown Nick and me that Theo's health is very fragile.  Who knew that the kidneys were so important?  Theo will never have "just a little fever."  Each fever will require a trip to the hospital.  We will have to watch and monitor him very closely for recurrences of peritonitis and any sign of sickness.

We are still trying to take each day as it comes.  It seems that when I start getting ahead of myself, we hit a snag.  For instance, we were talking with the nephrologist yesterday about how we were going to proceed with dialysis today with the goal of cutting back total hours on dialysis, assuming all the cultures came back negative again.  Now, these plans will be put on hold while we await the lab results from the cultures this morning.

It is so hard to see Theo suffer through all of this.  I would give anything to switch places with him, and take away all of the pain.  Nick and I continue to love him more and more each day, though, and will do what we can to help Theo know that he is not going through all of this alone.  Thank you for your prayers!


  1. Praying for that precious boy... and his amazing mom & dad! You two are just incredible parents to him. It is so hard to see our children struggling in pain--praying he's better soon. Theo you are SO loved!! Please give him a big kiss for me!