Thursday, July 3, 2008

Day of Doctors

Well, the urologist doesn't seem to think David's bleeding is anything serious. He did have some microscopic blood in his urine today but no signs of infection or any other such thing. They scheduled him for a scope to see what is going on.

The only catch is that the scope is scheduled for the end of August. AUGUST. Apparently the doctor is going to be out of the country for a month so they're behind.

I am relieved he doesn't think it's anything serious, but for heaven's sakes. Nearly 2 months to see what it IS? Clearly people don't understand how many things I have to worry about and that I need some checked off the list.

But, we go forward.

Robbie had a pretty decent day overall. Again, I'm not sure he'd necessarily agree, but I say so.

His trach aspirate was officially clean. He started steroids with a plan of extubation on Saturday.

We kangarooed for 2 hours but he was having tube issues again so they rushed him back to bed to make sure he hadn't extubated himself. He hadn't. He had a huge air leak (basically his tube is smaller than his body, so air leaks out. It makes a God awful noise and makes his vent alarm a lot. No one ever acts like it's a big deal. Since they are planning to take his tube out soon anyway, it's particularly not concerning.)

The doctor decided that Robbie does need the NJ tube. This made me cry. Not because of the NJ tube, but it just seemed like one more thing he needs done to him. I can't really explain WHY it upset me so much, but it really was the straw that broke the camel's back today. I couldn't even talk about it without crying.

I had a good talk with L. She's the mom of Robbie's NICU girlfriend. We commiserated about stress, lack of control and such things. While I wouldn't wish this experience on anyone, I'm so grateful to have her around because not only does she get it, but she's in it with me. She looks as tired as I feel.

We talked about our amazing friends and how we both are so lucky but also feel like we don't have anything to give back to them. Her friends apparently sent a maid to their house the other day. And have arranged meals to be delivered to their house 3 days a week for the next 2 months.

I told her about my friend who keeps plying us with homecooked reheatable food and all the other amazing support we've received.

And then we felt sorry for ourselves some more.

Dr. C came in to say hi. Again. I'd actually run into him in the hallway on my way into the hospital. I tried to give him the "nice to see ya" nod that indicates he didn't need to stop and chat, but he beelined right for me and asked about my brain.

I gave him my little bit of info and then thanked him for being so kind to us. He said we were easy to be kind to and hugged me. Have I mentioned I have a crush on him? Seriously. He's like a romance novel hero or something. McDreamy doesn't have diddly on Dr. C.

Anyway, he came into the NICU later and asked how Robbie was. He'd asked me in the hallway but of course, I didn't know much yet. I told him about the NJ tube and he reassured me that he agreed it was a good option and that Robbie wouldn't be uncomfortable at all. It made me feel a little better. It's nice to hear the same information from more than one source. It MUST be true then, right?

After too little time in the NICU, I headed off to my MRI. It was fairly uneventful. I managed not to have a panic attack as they wheeled me into the tube. I ALMOST thought I might for just a second but I took some deep breaths, visualized a nice windy beach and it passed.

I asked about getting copies of the MRI to take to my neurologist on Monday and she said that the doctor should be able to get what she needs in the computer system.

A friend lives very, very close to the MRI imaging place so I stopped by her house on my way home. It felt weird.

It's weird to do anything that isn't home or hospital. It's only the 2nd time since Robbie was born that I'd done anything that closely resembled down time. The first was the first weekend I was home when the friends came by to take me to lunch and brought us gifts.

I kept feeling like I should be at the hospital. If I have time to talk to a friend, surely I could be with my son. But I knew they were likely taking him down for his NJ tube and I didn't want to be there for that.

The NJ tube is done down in radiology under live X-ray. I was certain I couldn't take the stress, so I was better off not being there.

I got home and found my house quite messy. I mention this only because David had the bright idea to invite his mom and brother to dinner tomorrow. I think this is a terrible idea, but I wasn't consulted. David said he was going to clean. When I got here, he had a headache. He'd cleaned the front bathroom but nothing else was touched.

I set about picking up the house and doing some light stuff, but I refuse to scrub. If they don't like something they see when they get here, they can clean it. Maybe that's bitchy, but that's how I feel.

After I picked up a bit, I called the hospital to check on Robbie.

The NJ tube is in. And apparently while he was down there, he managed to extubate. Not surprising considering they were messing with tubes in the area and the tube was way too small anyway. So they put a bigger tube in while they were at it.

His night nurse said he seems MUCH better tonight. His saturations are much more stable and he was sleeping very well. She thinks the new tube made a big difference. Hopefully the NJ tube will help as well. It's supposed to battle reflux which they think is adding to his unstable oxygen sats. He had a big spit up today and I guess that's actually what made them decide to go ahead and do it.

Keep your fingers crossed.

Tomorrow, my dog comes home. A friend of mine has had him since shortly after I had Robbie. I decided we've imposed enough. There is someone home enough to keep up with him now so he can come home.

Then we're going to the hospital. My MIL is meeting us there, then we're all coming back here for dinner.

There was some discussion of going shopping for a crib after dinner but I'm not sure I'm up for that. We'll see.

It was an emotionally taxing day. Not because of anything specific, but I just think it all caught up to me today. I figure there's a good breakdown coming soon.

Right now, my plan is to pump-n-dump (damned MRI contrast) and then sleep.



Amy said...

Big hugs. That is a lot ... I can understand it being really hard to take down time right now, but I'd *really* recommend you start scheduling it in. It's better for Robbie, too, if Mommy's looking out for her wellbeing. (I realize that's easy for me to say ... but it would take the edge of the stress and anxiety level.)
Aw I wish I could've been there for you when you went in for your MRI. The first few times it was really tough for me, too (and it's suddenly SO hard not to move when you know you're not supposed to!).

Mrs. Spit said...

Hey, give yourself some downtime.

One of my preemie books said to remember, you have the best educated, best paid babysitters in the entire universe. It would a much fairer world if Robbie was home with you, but while you can, take the downtime. You have been through a lot.

Baby Steps to Baby Shoes said...

Let people do for you now. It is their only way of feeling useful. And some day when things slow down and Robbie is at home as a smiling healthy little boy, you will pass it forward and do it for someone else. Giving is important, but if there was never anyone to receive, givers would never receive the blessing of being able to give.

Hugs and much love to all three of you.

Elizabeth said...

Each day you give more back than you realize. For each supportive friend you are an inspiration, an amazing person who has faced much and held on even when you been scared or tired or had way to much thrown at you at one time.

A bit of down time is good for you and you are under enough stress, don't feel bad for being just Trish for a few minute.

Oh and if your MIL has a heart, she will not care what your house looks like. If she has an issue with the level of clean - she doesn't deserve your scrubbing time anyway.

Hugs and prayers

Anonymous said...

Are you sure you need to dump? A lot of doctors say that you can't breastfeed with MRI contrast, but they're usually mistaken. Get your hands on a copy of Medications and Mother's Milk by Dr Hale! If you go to you can do the "search inside this book" for a quick check to see if your contrast is okay.

Trish said...

The radiologist on Tuesday said yes.
Then the tech on Thursday said the same thing.
I double checked with the lactation consultants at the hospital and they agreed.

It's really not a big deal at this point. I wasn't able to leave any fresh stuff for Robbie today but I have probably a 3 month supply in the freezer. Maybe 6. I HAVE A LOT. It's more annoying that I have to be trouble to pump every few hours for nothing than anything.
These things need to come with a pause button.