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Discussion Starter · #1 ·
Tomorrow morning Dakota's getting a PICC line so she can be started on TPN. This has been briefly mentioned as a last resort but I really didn't think we were there yet. Apparently everyone else disagrees and feels it's a rather urgent matter. I feel totally lost. We've never done anything like this at home and I have no clue what to expect or even what questions to ask when the GI comes tomorrow to talk with me in more detail. I have visions of high billiruben levels, line infections, liver failure, and that lovely yellow tint. I know that's extremely stereotypical so please mamas tell me that's not always how things turn out! I have no clue if she'll be getting g-tube feeds at all at first but her gut has been largely deemed a failure at this point and in need of rest. She's having significant weakness, lethargy and now bradycardia as a result of malnutrition. All i've been told is that she'll start off on TPN 24hr/day and we'll try to work towards 20hr/day. How does it work leaving the house with all of that stuff? How do I dress her? Please give me what you've got and help calm me down.
 

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Oh Emily, I'm so sorry.
:

Do you know Susan, Karuna's mom? She's on here, p2p, and caringbridge. Karuna has been on TPN for a while now, from what I remember. I know she could give you a lot of great info on it.
 

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My little Cael was on TPN for 5 months. He was just on it at night though. It is not that bad so I will do my best to calm you down.

You have to mix up the bags and learn to flush and set up the line daily but it is easy. The PICC line is in the arm and it extends so that you can hook it up through a sleeve. You will get this lovely little black pouch to carry it all in so it is easy to leave the house. You will have a home health agency giving you the bags, training you on the line, and probably a nurse coming to check her and get liver function labs at least weekly. You will feel like a environmental nightmare because of all the plastic crap that comes with TPN and a PICC line - expect this but don't be too hard on yourself for it. Some of it really is probably needed to make sure there are no infections.

Cael never got an infection, never had any problems with his liver and never turned yellow.

My three year old would help us make it up as it does take some time. He would get so excited and would help every night. We made a game out of it most of the time. I actually miss that part of it.

As for clothes, my son basically wore snap one piece pajamas all the time. I would guess that you would want long sleeves that are loose fitting.

And when TPN was the last option for my son, I totally freaked out. I never expected it and felt blindsided by it. I was convinced that he would be on it forever, but it was just temporary. I don't think TPN can be a long term solution but it is a life saver for many kids.
 

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We've never done TPN, but we did have a PICC line for abx infusions last summer. It was very scary to me, I put it off as long as I could, but we had to do it. Putting the line is was hell, but everyone I've talked to said that was unusual, it shouldn't have been difficult to do. We ended up in the cardiac cath lab under heavy heavy sedation to finally get the line in, after they tried in the procedure room for hours with and without light sedation. Ugh...that day was terrible.

Once the line was in, though, it was very easy to handle. He never seemed to care about it, it never bothered him. The external line was long enough that we didn't have to undress him for infusions, and we would just roll it up under some coban wrap when we weren't using it. He only had one infusion a day and it took 27 minutes of actual infusion time, so for us it was very easy. The first few times it took just as long to set it all up, but after a few days we could do set up in less than 10 minutes. After about a week I could do it in public even...we did infusions at restaurants, Ian's soccer game, in the car, in the stroller, during his therapy...

We didn't have a carrying pack or anything since he only had one infusion a day, but I made up a gallon sized Zip Loc bag with the necessities and the pump fit in there, too. One thing I learned quickly was to never go anywhere without bringing along heparin and saline, he had a lot of backflow in his line, so we often had to flush it. I also had extra tape and extra hand sanitizer at all times, you never know when you might need it.

We never had line trouble, no infections, but we discovered that he has a latex allergy because he reacted to some of the tape. We also discovered that he couldn't wear the red coban wrap, for some reason that gave him a rash. The home health agency was really good at bringing us more of anything we needed, and the visiting nurse came whenever I had a problem. We did replace his external line twice because of kinks in the line or because of tape issues (skin rawness). We used saran wrap for bath time and kept baths to a minimum.

That's all I got...we've never done TPN so I can't answer from that perspective.

 

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Thinking about you this morning. I hope it goes smoothly.
 

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We've had PICC lines several times at home, it'll be fine. You can still live like you do now, just have to be careful about germes so she doesn't get an infection. We've never had infections or any other problems with the PICC lines though.
 

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I know it's a little different, but when I worked in peds step-down I had TONS of toddlers/preschoolers who were on 24 hr TPN. You do have to take infection precautions, but we had these kids roaming the halls, in the playroom, totally doing everything ambulatory everyone else did. Prepping TPN is a chore, but once you get used to it it's not too bad. I am sure she'll be fine. We are heading into the hospital this week and will come home with a PIC or a PICC, too, so if I learn any additional tips while we're there, I will let you know.
 

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Discussion Starter · #9 ·
Everything went relatively well. They decided she wasn't a candidate for conscious sedation (they had been hoping to use versed and ketamine) so they instead had to take her to the OR, use gas and an oral airway. The anesthesiologist was a little nervous about not intubating but I really wanted them to avoid that if at all possible. She had a big desat during the procedure that caused them to have to stop and help her out but otherwise she did fine and has a beautiful PICC in her left arm.

They ordered her TPN stat and it was up here within a few minutes of returning to our room. I'm feeling slightly better about everything. The GI came and talked to me for a bit and while this is going to be a "long term" thing, I know it's the right step. Hopefully we'll see her heart looking better, energy increasing and get to go home soon.
 

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Good to hear it went so well.
Hope you get to go home soon!

(Did you not get my pm btw? Some time ago now.)
 

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Quote:

Originally Posted by Lkg4dmcrc View Post
My little Cael was on TPN for 5 months. He was just on it at night though. It is not that bad so I will do my best to calm you down.

You have to mix up the bags and learn to flush and set up the line daily but it is easy. The PICC line is in the arm and it extends so that you can hook it up through a sleeve. You will get this lovely little black pouch to carry it all in so it is easy to leave the house. You will have a home health agency giving you the bags, training you on the line, and probably a nurse coming to check her and get liver function labs at least weekly. You will feel like a environmental nightmare because of all the plastic crap that comes with TPN and a PICC line - expect this but don't be too hard on yourself for it. Some of it really is probably needed to make sure there are no infections.

Cael never got an infection, never had any problems with his liver and never turned yellow.

My three year old would help us make it up as it does take some time. He would get so excited and would help every night. We made a game out of it most of the time. I actually miss that part of it.

As for clothes, my son basically wore snap one piece pajamas all the time. I would guess that you would want long sleeves that are loose fitting.

And when TPN was the last option for my son, I totally freaked out. I never expected it and felt blindsided by it. I was convinced that he would be on it forever, but it was just temporary. I don't think TPN can be a long term solution but it is a life saver for many kids.
Hey, how've you been? How's Cael doing? You're on the Oct 07 board at Preg.org, right? COOL!
 
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