Sunday, June 29, 2008

4 weeks

It was a decent enough day.
Robbie was up and down on his sats like crazy, but for the most part, just outside the normal range. Basically just making a lot of noise on the monitors.

My dad and his girlfriend went by to visit before David and I got there. I guess the monitors were making them very nervous. Both Robbie's day nurse and the respiratory therapist who was there when I had Robbie (she comes to check on us pretty much every day that she works. She's super sweet.) commented about how nervous my dad looked.

I guess they both explained the monitors and why everyone doesn't just jump up right away. I'm sure my dad will never believe them, though. I've explained as well. He's very mistrustful, though. It sort of makes me laugh, except that it's exhausting to reassure him all the time.

Anyway, I digress.

It was a pretty uneventful day for Robbie except that we have a plan for the week.

Tuesday is a big deal. He gets his 1 month head ultrasound. GULP. There's no reason to believe it will be bad, but still. Nervousness!

He also gets another trach aspirate that day. Hopefully the stupid bacteria growing there will be gone by then (Did I mention it happens to be one of the resistant bugs you keep hearing about in the news? Yeah. It is. That's why he got a 2nd antibiotic added a couple of days ago.) and if so, then he'll get another quick round of steroids in hopes to try extubating again at the end of the week.

We really want this extubation to work. Having been on the vent for 4 weeks already is a LONG time. He's entering that realm where he's very, very likely to have long term lung issues because of damage caused by the vent. I have felt very patient about the vent, but today I had a small breakdown in the NICU because it seems like almost all the other babies were on the vent a few days or maybe a week and here Robbie is, 4 weeks later, and still REALLY dependent on it. I worry what it means for him long term.

There was a discussion about his weight gain (and lack thereof) over the last week, but we're all mostly thinking that he didn't gain anything because he was on straight breast milk for several days. The last 3 days (when they added the extra calories back) he's gained like a champ. He's 2lb 2oz as of last night. So hopefully that continues. Cross your fingers.

I believe he'll also get another CBC that day.

So I'm thinking Tuesday is a day I'll want to be at the hospital early.

It's going to be a heck of a week.

My CT scan in Monday. The aforementioned things on Tuesday. David sees the urologist on Wednesday.

Oh, and a friend of a friend is a neurologist and she really thinks I need to see a neurologist ASAP about my head wonkiness, so I have a feeling that somewhere in there, I'll be trying to see some other doctor somewhere.

My little family is single handedly supporting the medical community economy. Fun times.

I'm off to sleep. Please pray for us!


P.S. Took a couple of 4 week pictures tonight. He was on his belly, so they're not the greatest, but I hope to get some better ones tomorrow and will try to get them up ASAP.


Stacie said...

Praying for you guys. I know what it is like to feel like you support the medical world. Not fun. Hoping everything for you and your husband checks out okay and that Robbie is off the vent before you know it.

I just want to say that my boys were born at 28 weeks and my son, Jason, was on the vent for nearly 4 weeks (like 2 days shy of 4 weeks). Scared me like crazy because his brother came off within days. Anyway, Jason was on oxygen for weeks after. Then he had a lung collapse due to a bad vent placement (yes, you read that correctly. took them hours to figure it out, too). But you know what? He came home with no oxygen and doesn't seem to have any lasting effects with his breathing now.

Don't count little Robbie out yet. It is amazing how these little guys surprise everyone!

Fertilized said...

praying for you- wow 3 weeks already!

Fertilized said...

oops meant 4

LJ said...

WOW, Tuesday IS a big day - keep us all posted, okay?

silvashan said...

Just wanted to say Im sorry for the worry you're going through. I know what its like to have these weeks where it seems everything is piling up on you. Just keep in mind that it is most likely to go just fine. And Stacie's tale is proof of that.

Hang in there and know we're all praying for you and your sweet little family.

AngelsAmid said...

I'm definitely praying for your little guy! I hope he can come off the vent and everything will be fine. I hope your head tingly thing goes away soon *hugs*

Heather said...

My daughter was on the vent for over four weeks, and then one day, she just didn't need it anymore. You'll see, it's like a light switch.