Friday, July 16, 2010

Catching up

After the pulmonary visit on the 6th that Dr wanted to change his antibiotics. He had been on Augmentin since the 1st for the cellulitis around the G tube, but since he had yellow goop and was getting worse, clearly that was not covering for the respiratory infection. So she switched to Bactrim. She asked me to call Hem/Onc first because they had started him on the Augmentin and clear it with them. So I did. The nurse called me back and said it was fine with the docs to go ahead and switch.  So I went to the pharmacy (they know me, hee hee) and got the new script filled.
THE NEXT DAY Tomas had a hematology follow up and not his regular doctor walks in and the first thing out of his mouth is "Why is he on Bactrim?" So I explain but as it turns out Bactrim can suppress bone marrow production and he doesn't need any trouble in that area. So he wants to switch back to Augmentin even though I said his respiratory symptoms were getting worse while he was on it. His ANC is holding steady at 1000 and as far as this other doc knows it is still the plan to have Tomas start IvIG sometime soon.
After I got to the car (holding a script for 10 more days of Augmentin) I started to get angry. His pulmonolgist has worked VERY hard at getting his lungs healthy and she had good reasons for switching. It wasn't working and the Bactrim covers better for the psuedemona bacteria he grows. I call her office and the receptionist puts her on. She asks me "But, did you tell him this and this and that?"
"Yes, I did. "
"Well, ok, fine, then no Bactrim. Switch back to the Augmentin but we'll add in Zithromax, but for 10 days not 5"
Off to the pharmacy with 2 more antibiotic scripts...did I mention they know me?

THE DAY AFTER THAT Tomas had an endocrinology follow up and the doctor  talked about his thyroid (his dosage is fine) and also that the hypoglycemia episodes could be fasting or metabolic. He said he wasn't satisfied with the way that the other hospital ran the fasting test. They ran it for 8 hours, he said it needs to go longer, 12-24. He wanted to admit Tomas for 3 days and run it himself. I must have had a look of horror on my face because he stopped and sat down and asked me what I thought.
I said I really didn't want another hospital stay especially for something I'm pretty confident is fasting related.  The few times we've had trouble feeding him his sugars drop. Why they didn't in the hospital test I can't explain. He said I was probably right and the "chances of him having a metabolic disorder were very small and really how many things can one baby have?"
I wanted to slap him, really. Doesn't he know that is the kiss of death???? Here's the really funny part. I immediately licked my thumb and made the sign of the cross on Tomas' forehead. It was like my dead Italian grandmother was channeling through me. I've never done it before and haven't thought about it in decades. I laughed out loud the whole way home.
Well, that brings everyone up to date for last week. This week brought more but also brought an illness for me so I am trying to rest some more and will catch up again in a few days. In the meantime I'll be catching up on blogs and such.


  1. I had a very serious look on my face as I was reading your post, concentrating on every medical term that I do not understand but am trying very hard to, UNTIL, you licked your thumb and made the sign of the cross...

    From one Italian Catholic to another, I'm laughing out loud too!! And hanging my rosary beads up!!!

    Stay well!!!
    love,hugs and prayers.

  2. Doctors can be so dumb! Its the ones that get multiple things that get EVERYTHING! When Jax was diagnosed with the blood disorder, we were like,ok, we just hit every body system does not work like it should!

  3. Thanks for the update. I saw Heather yesterday and we were talking about you. Her computer was down all week because she moved and she asked if you had posted any updates. I told I hadn't heard a word from you in a while. Your ears must have been burning because you updated. I have recently come across a mom with a 3 month old daughter who was born with TMD. Her ANC has been all over the place and they are suspecting Neutropenia. She is really worried about it. Or of course that it could be leukemia but I feel that it is way too early for that. She hasn't been sick at all so I don't think that neutropenia has caused any problems yet. If you don't mind, I may send her to your blog so she can ask you about it. Or would you mind if I gave her your email address?

  4. Wow. What busy week. Thanks for he update. Hope everything clears up and that you get some rest. I must admit you have such a cheery personality that seems to come through in your post. You seem to make the most of every situation. We are on the low with just a g tube infection right now. Totally understand you with the cross on the head and what he doctor said. Hugs to you.