I hate hospitals

And the gross GI bug is....rotavirus!!!
Caelen is doing fine. Fluids were finally started at 8:00, even though we've been here since 12:15. He's watching Cars on tv and playing Gabba on his iPad. The ER got a bunch of bloodwork and I'm waiting on results. His X-ray looks good though, so yay for small victories. Now we're just waiting on the virus to pass.

But I'm exhausted. Like new mom of twins exhausted. The health roller coaster along with the sheer lack of sleep has worn me down. I wasn't prepared to be back in a hospital so soon. Note to self, always wash clothes immediately after hospital discharge, or risk get stuck with random pieces like sweatpants and short sleeved T-shirts in the winter.

Anyways, they've finally stopped messing with Caelen for the night, so bedtime for me.

Thanks for all of the messages. Sorry I don't respond to all of them, but I do read every one.

Love,
Katye

Back to the hospital we go

I'm pretty sure Caelen has Noro virus and has been battling it for a few days, but it's time to admit defeat and check into the hospital for IV fluids. We are going to children's in DC because its closer, and we just saw our DC cardiologist on Monday.

Pardon me for a minute.... Bleep, bleep, bleepity bleep!!!!

It hasn't even been a whole week since we got out. We must have picked up a few bugs in Philly. Crap.

I'll update later, but the plan is admit thru ER and stay atleast 1 night.

Home

I forgot to update on Friday, but we did get insurance approval and went home on Friday. Caelen did well yesterday, but appears to have picked up a bug of some kind, and last night was a long night of puking and coughing. We are hoping its short lived.

We see our local cardiologist tomorrow afternoon and will get checked over just to make sure that he's ok. I'll try and remember to update tomorrow or sometime this week.

Thanks again to everyone for your continued love, support and prayers.

Love,
Katye

Insurance update

So just how important is insurance anyway? Well, the 4 new meds Caelen needs break down like this:
TPA: $25,000 month
Dornase: $4,000 month
Hypertonic Saline: $3,000 month
Bosentan: $34,000 month
percussion vest : $18,000 purchase

Hopefully, once Caelen gets past this bout of plastic bronchitis he won't need the 3 nebulizer meds on a daily basis. But the bosentan will stay. By the way, he'll only be getting a half dose. The full dose would have been $67,000 per month! This is on top of the 15 other meds that Caelen takes on a daily basis. How ridiculous is that? I have a hard time believing that medicines actually cost this much. The drug companies must have huge markups, or they're charging for research. Either way, holy cow his meds are expensive.

Now you see why we need prior authorization to get these meds and go home. So we are hoping to get final sign off tomorrow and perhaps home on Friday. I'll know more tomorrow afternoon once the insurance company reviews the paperwork again, and the pharmacy gets a guarantee of payment. They don't want to be on the hook, can't say I blame them.

Until then, we're dodging germs and paying we stay healthy.

Love,
Katye

PS, thanks for letting me vent yesterday and all of the nice messages :)

Not looking good for tomorrow

Everything didn't get done with insurance today, which was a tall order to begin with. Too much to get approved, and not enough time to get supplies.

I need to have a pity party for myself for a moment as I'm laying here in bed freezing because I'm under a giant window. I just want to go home. I want my bed, my house, my fireplace, Caelen's plethora of toys and entertainment, the tv, the fridge and pantry, and germ free zone. I'm copying this from another friends blog because its true, but I feel like we're just dodging germs all over the place, and it's hard to entertain a 3 year old from a hospital room and keep him healthy.

I know that it's selfish to be complaining right now, especially about the little things when we've been so much worse, and there are so many sick kids here. But I guess I'm just exhausted and tired of life in the hospital. A small taste of freedom will do that to a person.

At the same time, I know that this is my life, so why am I frustrated? I really should just count my blessings that we're going home in a few days. But I'm going to allow myself this pity party for 1 tonight and refocus tomorrow.

Nite all,
Katye

Working on insurance

The wheels are in motion to get us out of here tomorrow. Phone calls are going back and forth trying to convince insurance to pay for the new crazy expensive drugs: tpa, dornase, bosentan and hydrotonic saline. As well as a chest percussion vest.

But aside from all of this, Caelen is doing great. He's running around the CCU and getting plenty of time in the playroom. He's loving naked hall time at the end of the day too. He likes to run out of the room while I'm getting bath ready, which also happens to be the same time as shift change, giving him quite the audience. Hey, whatever it takes to keep him happy right now.

The only trouble we are having is blood draws. Caelen's blood is very thick and tough to get. Poor guy has been stuck every day. He will also need monthly blood draws for the new medication to check liver levels. Ugh. But whatever keeps us out of here.

I'll have a better idea tonight of whether we get out of here tomorrow or not. It's only insurance approval that's holding us up.

So, until tonight, hope everyone is having a great day.

Love,
Katye

Chillin at CHOP

Caelen is doing really well considering that he has plastic bronchitis. His lungs look terrible on X-ray, but they sound clear and his sats are good. His lungs are wet though, so he was given a 1 time dose of extra diuretic to help with that, then we'll go from there.

He's getting a lot of breathing treatments and chest pt, including using a vest that inflates and "beats" on his chest. It doesn't hurt, I promise. He'll be getting one for home too.

So the downside to a holiday weekend hospital visit is that insurance companies aren't open to approve his new meds for home use. They are crazy expensive. But at $2,000 per day just to be here, it's cheaper to go home. So on Tuesday the cases manager will be making calls to get our meds approved for home. And if she can get all of the approvals, we should be able to go home Wednesday.

In the meantime, it give the docs 3 days to watch Caelen. Overall, they are happy with how he looks. And he's playing, a lot. I'm trying to finish this from the playroom, but it's hard typing and chasing Caelen with the oxygen too. Lol. To no ones surprise, he found a wagon and we are taking turns cruising, although we're limited with where we can go now, and playing in the playroom.

So I guess that it's for now. I'll update again tomorrow. Thanks for all of the well wishes and prayers :)

Love,
Katye

Hi Ho, it's off to CHOP we go

Caelen has plastic bronchitis again, so we are heading back to CHOP for treatment. The plan is to start nebulizers and possibly a new med. The reason we can't just start the meds at home is because they need FDA approval and each one costs about $4,000 per month. So we have to go the hospital route first, then hopefully insurance approval next week and home.

Just another day in the life of Caelen and HLHS, lol. I'll update more once we get settled and have a clear plan.

On a side note, why in the hell is the bay bridge backed up? Are that many people going to the eastern shore for the holiday weekend? Ugh.

Love,
Katye

Damn you plastic bronchitis

Caelen still has pneumonia, but you'd never know it by watching him run around the house. He's had it for almost a month now and it seems to be getting better. But he keeps coughing up these mucus plugs, which are kind of gross. I've called CHOP on separate occasions and shared the pictures I took of the gross things. Both times the Dr's (who we've never met) felt that the mucus didn't look infected and it's nothing serious. However, the Dr from Friday suggested we call our main cardiologist today to discuss.

Dr Rychik, our Dr, called me tonight after reviewing the image and said its plastic bronchitis again. Caelen is coughing up casts!!! I'm so bummed. I've mentioned this each time I've talked to a Dr and even brought one with me to the ER last week. No one was concerned. Actually, I'm kinda pissed. Would it have changed anything if the docs had diagnosed it earlier, like 2 weeks ago? Probably not, but I would have known what to keep an eye out for.

The plan for now is to keep a log to document how often he's coughing these casts up. If it becomes daily, or his breathing worsens, then we need to readmit to CHOP for several days for treatment.

Ugh, why in the hell is this back? This is what led to the fontan takedown. So it shouldn't still happen. But I guess once you get it, it can reappear at any time. Perhaps the pneumonia stirred it up?

The good news is that Caelen's sats are good and his breathing is fine and he doesn't have a fever. He's happy and playing well too. So I guess I'll just be watching him even more like a hawk. But I fear that CHOP is in our future.

On that note, time for Caelen to get ready for bed. Please keep him in your prayers that the plastic bronchitis doesn't get worse.

Love,
Katye