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Old 04-19-2008, 11:22 PM   #11
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Re: Any tips for hospital stays?

We've actually already got one with a port in the house. No worries there

The reason for not getting the port yet is simply a matter of beaucracy. This little one is technically still a fosterchild and ward of the state until they give us the okay to finalize his adoption (state law requires we have custody for 6 months but his birthfather is contesting the termination of parental rights so I expect we'll get the go ahead to finalize as soon as the appeal is rejected). Until he's legally ours and not a ward of the state, we're required to get judge's consent on anything which requires sedation, anesthesia or surgery. We're authorized to consent to everything else but not those. So, getting a port would require a new court order, as the doctor only got court permission for the PICC this time.

Now, that baby leg idea...I love that one! His brother has the flame baby legs. I bet I could convince him to let us borrow them. And, I bet I could distract this fellow from pulling at a PICC if he's wearing really cool flames on his arms! I LOVE that idea. Thank you SO much.

(We access a port a minimum of twice a week and will do so until the hemophiliac can be taught to do it himself. While we're perfectly capable of peripheral accessing him, the pain associated with mom holding the needles contributed to his reactive attachment disorder. So, we fought for a port a year ago to help address his attachment issues and to help him relax enough about his treatment to attain some emotional healing from his trauma and past. Of course, I couldn't find the LM-X on Wednesday and refused to stick a needle in his chest without it, even though he wanted me to try. So, I went with a hand stick instead. LOL.)

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Old 04-26-2008, 09:20 AM   #12
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Re: Any tips for hospital stays?

It sounds like you've got the port stuff more than covered! That bureaucracy stuff is so frustrating when all you want to do is what's best for your child.

Sorry for all the extra port info. I guess it never hurts to share education, right?

to you and your babies.
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Old 04-26-2008, 05:09 PM   #13
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Re: Any tips for hospital stays?

Don't sweat it. Oh! darn! Good thing I opened this thread, the child with a port needs infused and I forgot!

Beyond that, I got the last of the stuff for his activity bag today. Its not going to completely occupy him. But, he really shouldn't be in their play room if we can help it. Everytime he's been in the hospital previously, he's contracted a nosicomal infection (pardon my spelling I'm chasing 7 alone tonight, lol). We really do NOT want to allow them to take him in for a tune-up and have him get another infection while in there.

He goes in on Monday. They want him for 2 weeks. But, our childcare for the other 6 in the second week bailed on us. So, they get a week. At that point, either they've got to agree to finish the IV antibiotics at home, or they are going to have to put up with me camped out in the hospital room with 7 children. I intend to let Dh explain that one to them
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Old 04-26-2008, 09:10 PM   #14
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Re: Any tips for hospital stays?

Quote:
Originally Posted by TestifyToLove View Post
I'm a nurse by training and now only work *in* the home.

The doctor says he'll do IV meds at home in the future but wants it in the hospital this time. That said, we're scheduling Grandma for the second week because our intention is to argue for home IVs after all testing is done. We also intend to NOT utilize the playroom. This child does not wear masks well and just moved cross country a month ago. I don't intend to put him at risk for sick children's germs while we're there.

They will be doing a PICC line, that is the first procedure they will do. Which, is better than peripheral IVs but not as good as a port. Once upon a time, this child *had* a port...until a 28 day hospital stay resulted in them infecting him with staph sepsis and a septic fungal infection in the port, resulting in RAD and a transfer to the PICU.

We can't argue for a new port insertion for *this* hospital stay. But, we will be reinserting one in the future, since he will average IV antibiotics 2-3 times per year which will get more frequent as his condition deteriorates.

I'm not at all fond of a PICC by the way. That ensures that this particular child cannot be left out of sight of an adult for any period of time. Which means, if we need to step out for food, bathroom, etc, we have to have someone sit in the room physically while we are gone. But, they didn't offer a Port yet. And, I figured fighting for it so soon was premature still.

I'm not sure how to accomplish IV antibiotics on the PICC at home. But, we have a severe hemophiliac in the home, so we're accustomed to peripheral IV sticks ourselves. I think we can work it out. And, I suspect once the CF team gets comfortable with us and our skills, they will be more open to early discharge.

I need to write down that list of questions and considerations. Those are things I had NOT heard yet and had not yet considered. The only other one that was new to me was a friend mentioned that Children's hospitals don't provide a guest tray for parents. Had not made that connection, even though we've done a stay at a Children's hospital before.
This is a hard one Mama.... I personally have a love/hate relationship with my port. Love that I don't have to get my arms all stuck up anymore (I seriously like an addict before they did this). Hate the heperin that has to go in it all the time.

Just a PICC line ?? the reason they didn't offer this as an option was because the chemo made me immune suppressed and they were afraid of serious infection in the PICC line.

I mean you said he had a port infection problem so this now makes me wonder.....

Also I have a box of 60 masks if you would be in need of them!!
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Old 04-29-2008, 12:18 PM   #15
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Re: Any tips for hospital stays?

I just wanted to say I hope all goes well for you and your LO.

My youngest has had several surgeries and hospital stays in his 2 years. Most recently, he had surgery in February. We chose a specialist in Cincinnati, so it was just him and I away from home for 2 weeks which also presented some challenges.

I agree with the suggestion about Babylegs, they are great for the hospital. I am sorry that you will not be able to use the playroom, that was one of the biggest helps for myself and my son. But, still take advantage of all that Child Life Specialists and Guest Services has to offer. At the hospital we were at recently, they had an option for parents to buy meal cards for $5 and have the meal brought to the room. That was much cheaper than the cafeteria for lunch and dinner.

I also created and maintained a Care Page to pass the time and keep family and friends posted on how things were going. If the hospital offers it and you have a laptop, check it out. If you don't have a laptop, ask Guest Services if they have one you may borrow. CCH had some loaner ones available.
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Old 05-03-2008, 09:11 PM   #16
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Re: Any tips for hospital stays?

He's home!!

They sprung him a week early. He's on 2 IV antibiotics still, one daily and one every 6 hours. His PICC is still in place. We have to go to clinic this week. And, the resident completely messed up his scripts, so I have to call the doctor's office first thing Monday to get that fixed.

But, the Baby Legs worked like a charm. Everyone in the hospital was complimenting Dh on the ingenious idea. I told him I couldn't take the credit. Right now, his antibiotics are in a ball. Hook it up to the PICC line, open the clasp and he's getting meds. Even better, I tuck the ball and tubing into the Baby Leg and he's completely untethered. So, he was running laps at a soccer field all day today *while* getting his meds.
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