Numbers

I started this post a week ago and never finished it...

Cause I'm a bit of a nerd, I thought I'd do a numbers post.

We were in the hospital for 5 months and 14 days (or 167 days).

Each time we went we had to wash our hands for 3 minutes. That means we've spent at least about 8 -1/2 hours washing our hands (and that's just based on once a day).

I went to the Pharmacy upon check out and his total cost of medication for the month is: $1641.77 (fortunately we didn't have to pay for all of that!).

Home

Seth is finally home! If I'm being totally honest, earlier today I have to say I didn't feel that excited. I think the wind was sucked out of the sails with the news about him failing the hearing test three times. Emotionally that set me back a bit. That, and I think just being nervous had something to do with it. But now that he's home and in his little crib and seeing the boys interact with him, I'm REALLY glad he's home.

Getting him home was one of those everything-goes-wrong kind of days too. We got some cupcakes for the nursing staff and as we were heading for the door, I checked the cupcakes and noticed that the smaller box they put on top of the larger box had broken the cellophane top

and crushed a half dozen

cupcakes (at $4 each, that's a pricey crush.) So we lost those six. Then, we got to the hospital, and I realized that I had left the oxygen tank at home--you know, the one he needed to get from the hospital to the house!! So Janice and I went into the hospital, and as we're heading in to wash our hands, I accidentally hit the power button on his apnea monitor. And it wasn't monitoring anything. So it set off the alarm. And that thing is LOUD!!!! And I didn't know how to turn it off. So I had a bunch of nurses running out to see what was wrong and why this excruciatingly loud siren was going off. Lovely.

So Janice went in and fed Seth while I went home to get the tank. I got back to the hospital and realized I forgot the key to turn on the tank. Luckily as I was getting off the elevator I ran into one of the RTs and asked him if he had one. We went down to the basement and he helped me turn on the tank. And to round out the day, most of the oxygen had leaked out because they had given us a bad regulator. Lovely. We ended up having to borrow a large tank from the hospital so we could make it home.

Once we finally got home we started getting things all set up and I went to plug in the g-tube machine and realized that the hospital had kept the cord. So I called them and sure enough they had it. So at 1 am, I went BACK to the hospital to get the cord (and return the tank). And I thought I was done with the 1 am hospital visits!! Sheesh!

And now it's 4:15 am, we have two feeds under our belt, and we have to get back up in about 45 minutes for the next one. All the sudden this is making the 1 hour hospital visits look like a cake walk. But so it goes. At least our little miracle baby is home and hopefully tomorrow we can start the process of getting back into a normal routine.

By the way, there's way more I could've written tonight, but this was already long enough. I'll write more in the next few days.

Friday

It looks like Seth will be coming home on Friday. I spent a couple of hours at the hospital learning the new machines, feeding equipment, etc.

That's the update.

Seriously?!

All the surgeries have gone well and Seth seems to have recovered from everything. He had his hearing checked and failed it four different times. I have nothing else to say right now in fear that it'll come out callous or profane.

Seriously!

Another Day, Another Surgery

Another day, another surgery. Well, at least not today. It's sad when we have surgeries that are "clean up surgeries" from other surgeries.

Tomorrow they are taking out the broviac. That's a surgery in and of itself. While its relatively simple, they do have to take him down to the OR and put him under. But the good news (I suppose) is that they're going to do the circumcision at the same time. So he'll probably be one of the few babies that is actually OUT during that not-so-pleasant procedure.

I went and visited tonight. He's doing well. I got there when they were changing his clothes, bed, and some of the sensors. So it was nice to see his cute little body. I've included pics from tonight's visit.

Also, here's a link to a video I just put up. Spencer is obsessed with sharks. So I played the Jaws trailer for him so he could see a shark and he got hooked on the music. Now he SINGS the Jaws theme. And I taught Lex to play it on the keyboard. So here's the 6-year old playing JAWS with the 2 year-old singing along. Personally I find it hilarious.

Bullied

They bullied us into a g-tube--whether it was the correct decision or not, I feel like we were manipulated and bullied into it. It went in yesterday. Surgery went fine. Baby seems like he's in pain. Tube looks absolutely disgusting.

On my way to visit now. More updates later.

Soap Opera Drama

My Minions!!!



I'm really annoyed at the hospital right now. Seth has been doing relatively well with his feedings and the orders were changed to basically an all-you-can-eat buffet in a half hour. He needs to be up to 72 cc's in 30 minutes to avoid the g-tube. So Janice and I really started to make an effort to be at as many feedings as possible to make sure he's eating as much as he can.

So Friday night I was there for the 8:30 feeding. We had a nurse we don't normally have. She's really nice though and we do like her. She fed Seth and I had my timer going. At 27 minutes she stopped and deemed Seth to be too tired to continue. Bull! He had taken 24 cc's. She asked if I wanted to hold him and I said, yeah, I want to hold him cause I'm gonna finish the feeding. He's not done yet. So I fed him for what ended up being the last minute and a half by the time he was transitioned. He ate another 8 cc's in that just-under-two minutes. Honestly, I was TICKED!! He had just eaten an additional 30% more than she had fed him!!!

So I left shortly after that and stewed on it for the next couple of hours. Realizing that the staff wasn't giving it 100%, I went back at 11:30 for his next feeding. I walked in and the conversation went something like this:

ALEX: Is this his 11:30 bottle?
NURSE: Yes.
ALEX: Good, cause I'm feeding him.

I sat down and started to feed him and the conversation continued:

NURSE: I sense there's something wrong.

ALEX: Yeah, there's something wrong. We've had a gun put to our heads that he has to eat 72 cc's in 30 minutes or he goes under the knife--and you're not feeding him for the full thirty.

NURSE: I fed him for thirty minutes.

ALEX: NO YOU DIDN'T! I TIMED IT AND I CAN TELL YOU TO THE EXACT SECOND WHEN YOU STOPPED. HE HAD 3 MINUTES LEFT AND ATE ANOTHER 30% MORE WHEN I TOOK OVER FOR THAT LAST TWO MINUTES!

NURSE: Well, if you want another nurse for the rest of the night, that's fine with me.

ALEX: No, we really like you, and think you're a great nurse. We just want him to eat for the full 30.

And she walked away. At that feeding, I fed him 51 cc's in EXACTLY 30 minutes.

Needless to say, I guess this sort of turned into the NICU soap opera story for the next 24+ hours or so. It seems like every doctor or nurse I talked to brought this up.

Oh yeah, I forgot to mention the part about them calling Janice on Friday afternoon and saying, "We've scheduled the scope test on Monday and we'll do the g-tube at the same time. But only if you're okay with it." I think what makes me the most mad about this is that they've scheduled it without asking. They just did it and then asked. Granted we have an out, but the approach was horribly tactless in my opinion.

AND the worst part is after I held the nurse's feet to the fire about feeding for a solid 30 minutes, they changed the order and said, "Well, now let's just feed him until he's done."

No time limit basically gives the nurses an out to say, "Oh, he's tired," letting them stop whenever they want. It seems like they just keep changing the parameters so that they win and Seth is forced into a g-tube.

Ultimately, a g-tube MAY be the best thing for him. But they should've given him more time. They didn't think he could get to the capacity he needed feeding only by mouth. We disagree, but they're not giving him a fair shake. They're forgetting that not only is he a miracle baby, he's half Samoan.

SO at this point, we've finally conceded. It obviously doesn't matter what we do. They're just going to keep changing the rules on us until they get their way. And the worst part is that they're doing the scope test on Monday, and it's just another couple of steps to insert the g-tube. So if he's ultimately going to need one, it doesn't make sense to wait and make Seth have two similar, separate procedures. So they win, I guess. I'm pissed about the way this whole situation has been handled. And if ANYTHING happens to Seth, there are a couple dozen lawyers on my office floor and I will OWN Torrance Memorial Hospital after I'm done suing the pants off of them.

So it feels like it's becoming an us against them. We've been warned that this would happen and have been told by everyone to fight for him. So that's what we continue to do as best as we can. The one benefit of the g-tube is that he'll get out sooner. So we'll see what happens after tomorrow.

On a lighter note, Lex and Spencer are both OBSESSED with the backlot tour at Universal Studios. I couldn't be more proud!!

Like sands through the hourglass, so are the days of our lives.

What Superman See's At Dinner

Sorry it's been so long since I've posted. It seems like every time we visit, the update goes something like this:

"How's he doing?"

"Good."

"Any changes?"

"Not really. He's doing well, we've weened the oxygen a little bit and__________ (insert one other small update here)."

So every night we saw progress, but it seemed very gradual. He had a couple "big" moments going from the vapotherm to the nasal canula. But now that I look back at the last post to this one, he's really majorly improved. He's down to almost nothing on the oxygen and his saturation is great. Right now he's on a quarter of a liter which is almost nothing.

We hold him pretty much every night and the latest "big" thing we've been waiting for is a swallow study to see if there were any micro aspirations with his bottle feeding. That was done yesterday morning and it didn't show the formula going into his lungs. So that was good. HOWEVER, it was a bit of a battle yesterday. We spoke with them after the test was done and they said it didn't show any micro aspirations, but that didn't rule it out either because he ate such a small amount--15cc's. Within just a couple of hours after that, one of the doctors called and recommended that we put in a g-tube for feeding that would go though his tummy straight into his stomach. I'm not crazy about him having ANOTHER operation and so I recommended to the doctor, "Why don't you just stick a bottle in his mouth instead and see if he'll eat! Or am I missing something?"

His response was, "Yeah, that's a good idea. We'll try that first." So I went to the hospital that afternoon to speak with our normal doctor as this was all getting really weird, like they were trying to push us out. I could write a novel just on everything that went on yesterday. But the bottom line is they kept saying, "can't, won't, isn't, not strong enough, etc." and I kept reminding them to say, "MAY not get it, MAY not be strong enough, but at least give him a chance."

DON'T EFFING TELL ME CAN'T WHEN YOU HAVEN'T EVEN TRIED!!!!

That made me really mad!! And one lady in particular who acts like a total know-it-all and isn't even a doctor, kept butting in on my conversation with our doctor. I finally had to tell her to shut her trap and to stop talking over me and interjecting every time I went to say something. She's gonna get a piece of my mind when this is all done!!

So we've aggressively pushed for them to put him on a feeding schedule that will increase as he proves that he can tolerate more frequency and higher quantities. But it means that more visits to the hospital. It's not REQUIRED that we are there, but it just seems like if we don't go and stay on top of it, they won't be as vigilant as we'll be and thus they won't increase quantities and decrease the time between as quickly as they should. We do have one nurse, however, that is like a third parent to Seth. She's awesome! I wish we could just clone her and have her be his only nurse all the time. She's definitely as vigilant as we are--sometimes even more so!

I'm attaching the swalllow study. I've never seen an x-ray video. I guess this is what Superman see's when he goes out to eat with others.

Today, I was told that they are preparing his discharge papers. He's still probably a week and a half away from coming home--maybe a few days less, maybe a few more, but at least we can see the light at the end of the tunnel. And a good light--not that one that dead people see.

So there's the latest. And believe me, after all the conversations yesterday, this is the truncated version!

In a Crib

I just noticed that I haven't posted in a while. But pretty much no news is good news. Let's see, there's not really a whole lot to report. He's in a crib, he's up on the 5th floor after moving back and forth a couple of times and he's finally wearing clothes again. He's off his sedation and pain meds, so that's good. But really, he just looks good and seems to be doing better. He's still pretty fragile, so we have to be extremely careful when holding him. But I did get a smile out of him tonight. So that was nice to see.

I'll let the pictures tell the rest of the story.