Type A Momma » Blog Archive » I HATE the 6th floor

Ok, so not only am I having a hard time making all these new adjustments receiving this “different” kind of care, but I have NO IDEA who to listen too. Our nephrologist keeps telling us we can go “HOME”, which to us means our home … apparently to him it means the Ronald McDonald house. Ummm …. NOT THE SAME THING, at all. So we ask our nurse, but she hasn’t heard anything, so she asks the dialysis nurse but she can only ramble on about how we have to have 2 weeks of training but that can’t start until “the patient” has been discharged and that ALL of our many medical needs will have to be ordered and sent to our home before we can actually GO HOME. Then I found out that we have a new social worker on our new floor, so I tracked her down but she hadn’t heard anything about Andrew being discharged, so she’s going to talk to the dialysis CHARGE NURSE and our nephrologist to see what’s going on but ” the closer we get to the weekend the less likely it is we’ll be released” … AH, HELLO IT’S F*ING MONDAY ?!?

So right now Josh and I are left to fend for ourselves … What I think is going to happen is that WHEN Andrew is released from the hospital we’ll get to bring him back to the Ronald McDonald house with us for the 2 weeks of training we’ll receive. At this point we’ll take whatever option gets us out of the hospital . These 12 hour shifts are taking their toll on us. We’re so BEYOND tired we can barley function. Not to mention Josh and I see each other for all of about 15 minutes a day, which consists of us filling each other in on what happened on our shift and what doctors have said and then one of us settles in and the other drags himself back to the Ronald McDonald house to sleep.

Speaking of which, sleep is what I should be doing but we have to move out tomorrow for 2 days. I don’t know what genius came up with this rule but after 28 days of staying here at the Ronald McDonald house you MUST move out for 2 days. So tonight I’m doing our laundry, washing the bed linens , packing, and cleaning the bathroom, just so we can move into the Ramada for 2 days before HOPEFULLY returning back here. And just for anybody interested , it’s all based on availability so there is a chance they won’t have a room for us.

Andrew is doing well. This afternoon they increased is dialysis to 100cc’s which is what we need it to be in order to use the home dialysis machine. BUT, it’s leaking from his PD CATH and I don’t think that’s a good thing. My guess is that his body is so small it can’t retain that much fluid for that amount of time so it’s leaking out from where ever it can. And a few times today his dialysis output was greater than the input which means he wasn’t peeing as much … ( I’m not completely sure what that means on the larger scale of things, but the nurse wasn’t happy about it ).

Anyhow, that’s about it for tonight. I must finish my chores so I can finally sleep …

8 Comments so far

Again, WOW. Coming home to the Ronald McDonald House isn’t ideal, but, as you said, it IS better than being in the hospital. And what the hell? That 28 day rule is INSANE.

Everyone is asking me about you! Take care of yourself.

Uggh. I hate hospitals. The Ronald McDonald house just means you’re that much closer to taking your beautiful baby to his real home. I’m continuing to pray for little Andrew and I’m really gonna pray for you guys to get some much needed shut-eye!

Hang in there honey!!! This is going to be the most frustrating point because for some reason Doctors and nurses never give you an exact date of when you’ll be going home until the day you actually go home. We got a lot of maybe in 4 days, maybe in 3 days, maybe tomorrow, maybe a week. No one could ever really commit to an actual day. And then all of a sudden they called and said “How would you like to take your baby home today” Hang in there, it’ll happen!

I’m still thinking about you and Andrew Hannah and lighting candles. Hang in there. I know it has to be frustrating. Hopefully soon it will be “Hey you can take him home today” Whether that’s the Ronald McDonald house or home home at least it’s out of the hospital

This all sounds so confusing! Doctors and hosptials are so hard to deal with. I hate that they moved him into a room. I don’t know how they expect an infant to be able to be on there own… especially without any kind of security. That just drives me crazy!

I know more than anything you just want to get home with that handsome baby boy of yours so that is what will be on my prayer list.

I’m sorry you guys are going through this. The good news is that this won’t last forever… Not that, that helps you right now, but with time this will just become another chapter in your book of life (it will feel like a very long chapter, I’m sure). But in a year or so in the long run, it will be so worth it when you are running around with Andrew and all is well!

We love you guys! Oh and by the way… I’m almost 3cm now. I’ll be 34 weeks this Friday. Yikes!

xoxoxo
Jen

Just thought I’d pop in to check on your little guy and let you know there are still many of us out here thinking of you.

Hi Hannah,
I was Googling and came across your blog and read it all last night. I’m 25 years old, and my hubby and I already have 2 healthy children. I am 16 weeks pregnant with #3 and found out last week that he has LUTO. I go tomorrow to have the urine taken from the baby and the other testing done. If all looks well, I will probably get the shunting done next week in Tampa.They also told me he has 2 club feet which is see can be another challenge associated with LUTO, but is very fixable in a short period of time from what I read. When does your show air? I would love to watch!
Thanks,
Jenn

Your Home!!!! Now Andrew can come over and mow my lawn!

I love you guys

Grandpa

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