Tuesday, February 16, 2010

Waiting for the doctor's call....

Everyone remember the weekend before last when I was praying to keep Tomas out of the hospital because of low ANC and respiratory stuff?

Well, he did seem to bounce back for a few days and I really thought he was going to beat whatever was going on, but by Thursday of last week he was turning downhill again and had what looked like a sinus infection (gunk in eye and nostril). On Friday he had a standing appt. with his pulmonologist. She gave him his Synagis shot, started him on some antibiotics, said his lungs sounded great (thank God), and ran a culture on his sinus drainage.

Ok, still not too terrible. Most of the weekend passes without much changing, but by Sunday evening his petechiae (red spots) are getting worse and new patches are cropping up all over. I don't like those spots, they are never a good sign. He had been running a low fever but it started spiking Sunday night. He was still playful though, and his sats were good, so nothing severe enough to want to make me take him to ER.

Yesterday, I was going to take him to the pediatrician but he started the day out just fine, except for those petechiae and his heart rate was elevated even while he was resting.  So I just thought I'd watch and wait. Mid-day when I was ventingout his G port there was a clear bloody liquid and a lot of bile in his stomach, so I did end up bringing him in.

The nurse asked me what was going on. So I told her he has been on antibiotics for 3 days but is still running a low grade fever, his resting heart rate is climbing into the 140's, his petechiae are getting worse not better, his pump kept beeping clog in line even though there isn't one visible,and  I vented out about 15 cc of bile from his g port. She looked up at me and said "Hmm, so just your typical baby stuff." That made me laugh.

The poor pediatrician. I didn't know what specialist to bring Tomas to because he has the blood issues going on and the GI isssues going on, and I have no clue if they are related or not. So I told the doctor I would just start with him and let him figure it out. That made him laugh.

He spoke with the pulminologist and the GI and then came back to talk with me. GI wants to see him to figure out what is up with his tube. The pulminologist told him that Tomas' culture came back positive for the pseudomona bacteria, but it is responsive to the antibiotic he is on, so that is not likely the culprit. He ordered more lab work to recheck his ANC. He said there is something called neutropenic fever wich could account for the fevers, high heart rate and petechiae. He aslo said that with all those symptoms, if his ANC is still low we may have to hospitalize him until it passes.

Tomas slept poorly last night and was very fussy. Something was definitely bothering him. But this morning he is playing in his crib like normal. His heart rate is still getting up into the 140's though, it is so wierd. I am just waiting for the doctor to call and trying not to pre-worry (hah!).

I'll keep you all posted.


  1. Yes! Please keep us posted.
    Sending prayers

  2. Yeah, no pre-worrying! Its so hard not to panic over our kids, they can just be such stinkers! Here's to a good ANC and no hospital visits!

  3. Good luck! At least he's playing this morning. Let us know if you need anything...My other half is home so I'll volunteer him...He'll do anything for "his boy"!