Monday, June 30, 2008


It was a pretty decent day. Of course, that makes me nervous because a good day almost always followed by a really, really shitty one. And tomorrow is brain ultrasound day.

But for now, we go with today.

I liked his day nurse. That's always a plus.

His tests were mostly good.
We wont' know the results of the trach aspirate for a few days because it has to grow in the lab.

His red blood cells were down a bit, so he got another blood transfusion today and will get a 2nd tomorrow. (They broke it up into two parts to try to balance his fluids a bit.)

His sodium levels were good enough that they put him back on the diuretic he was on before again. This should help with the swelling and maybe with his lungs.

His chest x-ray was hazy again. Expected. What he really needs is a round of steroids, but again, we have to wait until we figure out what's going on in his trachea.

The doctor came by today and said that he thinks the bacteria is actually a result of reflux. Apparently the bacteria growing is something normally found in the gut. He said that if it's still present tomorrow, he might change his feeding tube from an NG tube to an NJ tube. Basically, it would go to his intestines instead of his stomach.

Personally, I think that sounds awful, but the doctor assures me that it's no big deal. I asked how it would affect his nutrition and he said the only thing it changes is that they can't give him large doses of strong medicines that way. So they don't and it's fine.

He did scare the shit out of me at one point. I asked how concerned I should be about Robbie still being on the vent after a month.

The doctor responded very, very slowly.

"Unfoooooooorrrrrrrtunateeeeely....." *long pause* My heart stopped. I thought Oh shit. He's about to tell me it's super horrible. He continued "it's pretty normal for these guys to do this. He'll get there." I started breathing again. Phew.

Anyway, our Kangaroo time went well. His O2 needs had been way up early in the day, and were able to come down a lot while I held him. They're back up a good bit again tonight, but at least for a couple of hours, they were better.

I only Kangarooed for 2 hours becaue I had to go downstairs for my head scan. It was pretty uneventful. I didn't know they were going to do contrast. They kept asking me if I was allergic to the dye. How would I know? I've never done this before!

In any case, they asked enough times that I was a little nervous when they injected it, but it was fine. They told me I'd probably feel warm but I didn't feel anything. The whole thing from appointment time to finish took less than an hour. The actual scan itself probably took 10 minutes.

There was a weird moment there. The tech doing the scan asked why the scan was ordered. I explained that I'd had pre-e and had been numb headed since. She asked how early my baby was, I told her. Okay fine.

Well, when she came in to inject the dye (they did the scan w/o it first, then with it) she mentioned that her baby was 3 months old and they'd really been suffering because her baby had colic. I'm pretty sure it was her attempt at "new mommy bonding." Normally, I love that stuff, but I honestly had no clue how to respond.

I think I finally said "I'm sorry to hear that." What should I have said? "Yes, Robbie gets really cranky when the nurses prick his heels." Our new mom experiences are just vastly, vastly different.

I'd had a few glimpses at that feeling previously. When my friend delivered her full term baby last week, I felt a little weird because, of course, my delivery was so different. And knowing she was getting to go home with her baby.. it was a little bittersweet.

But this was the first time that I really felt completely seperated from the other person.

In any case, the scan is done and we should have results on Wednesday.

I called my OB about getting a referral to a neurologist and she was completely fine with that. I called the neuro today but the name my OB gave me is someone who only sees MS patients, so I ended up leaving a message for the office manager to see which other doctor in the practice 1) sees non-MS patients and 2) can get me in the quickest. She left the info on my voicemail just before they closed for the day, so I'll actually make the appointment tomorrow.

Also- I said that David's urologist appointment was on Wednesday. It's actually on Thursday. I could explain how I got confused, but it's stupid and pointless and just chalk it up to I-have-no-idea-WTF-day-it-is disease.

So.. Pray for no bacteria and a good head ultrasound tomorrow. That's our biggest immediate concern.


P.S. Because of the contrast I have to pump & dump for 24 hours. I think I may have felt physical pain when I had to dump my hard earned milk down the drain.


Osh said...

sometimes it's so hard always sitting on the other side of the fence while all the other typical moms and typical kids go through life.

Amy said...

Glad Robbie had a better day overall. And geez I can see how the doc's reply would make your heart stop! Relieved to hear his final answer though.

Glad you're not allergic to the contrast dye. (Apparently I am, I discovered the fourth or fifth time I had it.) Hope all goes well with your and David's health! And I'm praying for Robbie's tests today. Love you!

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