I Don't Know If I Can Do This - taking over Spencers medical care

Kirstenmumof3 wrote: I just don't know! The nurses at the hospital want to train me on how to give Spencer his chemo and how to insert the encefalon into his arm. The encefalon has two parts, one is the needle and the other is a catheter. Anyway I would have to inject the needle into the fatty part of his arm and the pull it out leaving the catheter inside. They also want to train me how to flush his central line. The orders haven't come from Toronto yet, so it's just the nurses here in Thunder Bay. There are only 2 outpatient nurses that are qualified to give chemo. Spencers chemo is injected into the catheter and it burns as it is going in. The nurses are saying it would save us a lot of time and we would only need to come to the hospital twice a week for blood work. H*LL why don't they have me doing that as well?

I'm sorry, but are parents not to supposed to be the safe person! Isn't there someone that the child is supposed to trust and know that they won't hurt them. I'm already fighting with him to take his antibiotics! I don't know if I can do this!

I'm really going to have to think long and hard about this, I'm really torn and I don't know what I'm going to do if the Doctors in Toronto think I should be doing all of this!

mckayleesmom replied: Can your husband or another family member possibly do it?

kimberley replied: i don't blame you one bit for not wanting to do it. i agree you should be his safe place to go. if it were me, i'd ask for some alternative.. maybe a home care nurse or something.

MommyToAshley replied: I think I would feel the exact same way. I don't think I would have the heart to do it. Have you talked to the nurses and told them how you feel. A home care nurse sounds like a good alternative... good idea Kimberley.

mom2my2cuties replied: Kirsten - if you don't feel like you can do it...then DON'T! Tell them NO! You have that right. They can not deny Spencer proper treatment, and if you aren't comfortable giving him that treatment then they will need to have a home nurse or do it themselves.

Kirstenmumof3 replied:
DH won't do it. He has said he hasn't been around Spencer enough to know how to care for his lines.

The homecare nurses are not trained for this and are not allowed to do this. A nurse has to be certified to be able to give chemo.

cameragirl21 replied: Kirsten, just fyi, they can't force you to do it. They may think you should but if for whatever the reason you don't feel comfortable or don't feel you can do it then you don't have to and they can't make you.
I suspect this may be an insurance issue--if you do it then they don't have to pay the medical staff to do it. Idk how insurance works in Canada but if you lived here i'd be sure that this was the reason--that insurance just doesn't want to pay the medical staff to do it and if they're not being paid then suddenly the medical staff doesn't want to do it.
if you don't feel you can do it then put your foot down and explain why you can't and won't do it and that you'd prefer to take the time to take Spencer to the doctor (or wherever it's done) instead and don't let them try to sway you. You have more rights and leeway then any medical staff lets on, i know this firsthand.

booey2 replied: definitely as for an alternative. You already have enough to deal with , you don't deed him not wanting to come to you for comfort. He needs him mom to just be his mom.

Terri

kimberley replied: Jennifer, it has nothing to do with insurance.. our health care is covered whether she gives the needle or the nurse does. no difference. it is a matter of convenience so they don't have to go into the hospital everyday and wait for a nurse.

Kirsten, do they not have RN's who do home visits that CAN give the chemo? i cannot imagine taking on giving chemo on top of everything else you deal with. i hope the TO docs tell them how ridiculous that idea is.

mom2my2cuties replied: I think you need to just say NO! I am not doing that even if that means standing up to the docs in TO- as his mom, I have enough to handle, and like Terri said - he needs to know that you can comfort him, not be part of the team that causes pain. (Even if that pain helps him get better)

Kirstenmumof3 replied:
As far as I know the RN's that come to do the home visits are not certified to give chemo.

This was a big issue when Spencer was admitted on Thursday. They had to have the outpatient nurse come and give him his morning dose and then they had to call in one of the RN's that is certified to do it.

cameragirl21 replied: ok, this might be a dumb question but i don't understand--if a nurse is not trained to do it then how are they expecting you to do it?
and if they expect to train you to do it then why can't they train a nurse to do it?!
doesn't make any sense to me....

Kirstenmumof3 replied:
Yeah it doesn't make sense to me either! In Toronto when Spencer was going through his chemo he had 2 nurses, one that did only his chemo and one that did everything else. Then the unit was short staffed because half of the nurses took a course on how to give chemo and then go there certification.

cameragirl21 replied: idk, Kirsten, no offense but i am not impressed with Spencer's team of doctors at all from what you're telling me. And btw, if these are those Israeli docs you were telling me about sometime back then i apologize on their behalf, not that it does you any good but i just can't help it.
idk, i think you really should complain, this is ridiculous--first they miss an eye infection, then they give him an illegal dose and now they want you to play chemo nurse?!
are they out of their minds?!
not to sound crude but idk how you're not lashing out and going for their n*** by now, i'd be livid enough to...i'd really better not say what i'd do b/c i can really be nasty but i'm sure you get the idea.
stand your ground.
you know what else, i just had a thought, a morbid one but maybe there is some sense to it--could it be that the hospital staff has screwed up with Spencer's care so much that they're trying to put it on you so that if you screw up it's on you and not them?
i know it sounds awful but i'm beginning to really not trust them from all you've said about them.
idk though if these docs at thunder bay are different than the docs in toronto and that maybe i'm blaming the wrong people for screwing up.
either way, if you don't want to do it they can't make you, plain and simple. they cannot legally deny Spencer medical care.

CantWait replied: Kirsten, I totally agree with you. You're there to give comfort to Spencer, not play doctor. This is entirely up to you, but if you feel comfortable with going to the hospital then I'd do that. Sounds like the hospital staff is making excuses and handing off care for lack of proper staffing. I think a formal complaint needs to be placed against the hospital.

redchief replied: Our insurance PPO's do this to people here all the time. They force sick people into home care and make the family members take care of those things.

As to the question of how is someone who isn't a nurse supposed to be able to do these things, it's like this, it isn't that it's hard to do. The problem is that the nurses haven't been trained in the appropriate maintenance procedures for the C-line and the appropriate dosages of the chemo. The training doesn't take long and isn't particularly complex, it's just that, apparently, not too many in Kirsten's home area are certified to do those things yet (I'm thinking the C-line maintenance is the biggest problem, as sub-Q chemo isn't very complicated so long as dosages are already set).

THAT being said, I agree that Kirsten should be Spencer's safe place and that alternate methods would be more appropriate.

jacobsmama replied: I'm so sorry that they are asking you to do this but I agree that there needs to be some type of alternative. And don't rack your brain and add more stress on how to do it tell them to figure it out. You don't HAVE to do it and since you don't want to, and I don't blame you then say no to them...Hugs!

coasterqueen replied:
ITA! I'm not sure I could do it. I know there are mothers out there that have had to do this and did, but really isn't that why medical professionals go to school, to take care of people. You shouldn't have to do that Kirsten, you should be able to concentrate on supporting and caring for him mentally as well as yourself. I think these doctors are forgetting just what you all have had to endure.

Kirstenmumof3 replied: Thanks everyone! I haven't heard back from the nurse in Toronto yet, but when I do I will mention everything that the nurse from Thunder Bay wants me to start doing. And I'm going to flat out tell her NO, I'm just not comfortable doing this.

mummy2girls replied:
Good for you! Besides that dont you have to be certified to do all that kind of stuff? I was tauight to do irrigations on Jordan when he was sent home for that brief time and that was scarey in itself.. I could never imagine doign something like that because like you said the child needs to have a safe person he can go to in all of this mess he is goign through!

Hillbilly Housewife replied: Oh Kirsten. As if you need this on top of everything else.

I know from when I started my nursing course last year that more and more, in Canada anyways, doctors and hospitals are encouraging participation on behalf of the patients and/or families of the patients in administering treatment options.

But that's what they are...options. You'r enot forced to do it... nor should you if you don't feel comfortable. Like Jen said... maybe they're pushing the issue because of their past screw ups... however it still shouldn't be in your hands... not because you're not able to do it... because I'm sure you would be if you needed to... but because it's not your responsibility.

I don't know about you... but the thought of hurting my child, even if it's their best interest, isn't something I ever want to have to deal with.

Hugs all around!

Crystalina replied: I may be the odd man out here but if it were my child I would do it without problem. Especially if my child were Spencers age. Now a baby or a toddler it would be questionable. This is me only speaking for me if I were in your shoes and I want you to know that I in no way think that your descision is wrong. If it were my child though I would want to keep her out of the hospital enviroment as much as possible. If that would mean giving her chemo and causing pain then so be it. I would sit with her and and comfort her every single second and do whatever I could to make the experience as best as it could be (for chemo). I've never dealt with it myself but Ive heard it is very painful and makes you very sick so really how pleasant can you make it right? I would do what I had to and even if it meant me giving it to her I'd do it if it would keep her out of the hospital. I would want my child to go through something like that in their own surroundings and it may not ease it much but it would have to be better then a hospital. If I could be trained to do something like that and take it home and deal with it there I would jump on it.


You will make the descision that is best for you.

cameragirl21 replied: Crystal, while i understand what you are saying and fully respect your stance on the issue, i don't think any of us can honestly know what we would do if we were in Kirsten's position. I've spoken to you in private, via PM and you know about my situation and dilemma and everyone is eager to tell me what they would do but what it's made me realize is that only i can decide what i can and will do b/c only i am in this position. until you're in the situation there really is no way to know for sure what you would or could do.
if you could do it yourself then that is great but in Kirsten's position i don't think i could do it either, it's very hard to determine how we would ultimately feel if we were placed in that situation.

Crystalina replied: I thought I made it clear that I was not taking a personal jab at Kirsten. She knows what she can deal with and handle and what she can't. If she cannot do it then I think she made the right choice. She can't take him home and realize there that she can't do it. That would not be safe.

Either way, I didn't think my post came across as my choice was better then hers but if that's the way you took it then I'm sorry.

BTW, I also said that it depended on my childs age. If I had a baby or a toddler I would definatly not do it because they are still in the bonding stage and I would not want to be "the bad guy." I think that an older child would understand more about what had to be done.

kimberley replied: let's try not to make things personal. i think Kirsten is looking for support, not debates and that is what we are all trying to offer in our own ways.

holley79 replied: Kirsten hun I jsut saw this post. I'm sorry you are having to deal with this. I would just flat out tell them "No". They can't deny Spencer his treatment and you have not been "properly trained" to give Chemo. What's the difference in having a home nurse that isn't "certified" and you giving it to him. You aren't certified either. You also are not in the right frame of mind to give him that treatment. Tell them NO hun. You both have been through enough and you don't need this added.

Kirstenmumof3 replied: I just have to say that you have all rasied some very interesting points. With talking to the nurse in Toronto and really thinking hard about this, NO this isn't something that I could do. Like I said in a previous post, what if Spencer were to fight me on this? He has a habit of doing this and I'm sorry the bribs are getting bigger and bigger everytime (we use a point system). I know it's not something that we should be encouraging, but it's the only way to get him to take his medications.

I honestly never knew how I would have felt on this subject, but I know that this is not something that I would be able to do.

Thank You everyone for respecting each others opinions!

holley79 replied: Kiristen, what was the nurse (in Toronto) take on them asking you to give them Chemo?

cameragirl21 replied: Sorry, Crystal, if i hurt your feelings or if i made you feel like i thought you were taking a jab at Kirsten b/c that is not what i meant at all, i was just saying that we could not possibly know what we would do in Kirsten's place.
hopefully Kirsten's wishes will be respected and she can find a suitable way to get Spencer his chemo.

Crystalina replied:
I agree but I also want to say that if for some reason my first post is in any way offensive or unsensitive then just please delete it for everyone's sake.

Kirstenmumof3 replied:
She told me that a lot of parents administer chemo to there children at home and that a lot of parents do the flushing of the pic and central lines. She also said it was up to the persons comfort level as to whether or not they wanted to do this.

Kirstenmumof3 replied:
I absolutely do not think your post came accross as insensitive or uncaring. I think you were saying what you would do in this situation.

holley79 replied:
Ok so it is pretty common then. I still wouldn't want to do it either though. I hope they get things straightened out. I have heard abotu the C line and Pic being flushed by family member but never the chemo. Is there anyone in your close area that maybe nurses, who is a friend, you trust that may be willing to do it for you?

Kirstenmumof3 replied:
I don't really know anyone that would do this. My cousin is a nurse, but lives in Winnipeg. I really don't know anyone else and DH is not comfortable at all with us doing his chemo. So at least we're on the same page. Spencer has 2 more days of chemo and then he is off for a week. Then the cycle starts again for 3 weeks. I think that sine the home care nurses are not qualified to do this, then I will just keep going to the hospital.

Kaitlin'smom replied: hon in your susitation NO WAY would I. If he fights just taking pills I can only imigine what might happen if you were to do this for you. If your not comfortable then thats your answer.

gr33n3y3z replied: If I HAD to do it I could if there is no reason to do other then saving a trip heck NO not a good enough reason for me to do it.

My Boss had to give his own Chemo 2x a week for 6 months and he told me all about it.