United Brachial Plexus Network, Inc.

I just have to add my 2 cents to the PCA pump discussion...Francine said that we know how painful surgery is, so why would we want our kids to feel that pain?...The way things were explained to me, by either Dr. Shenaq or Nath, was that kids pain pathways are not complete until atleast the age of 3. That is why we watch in wonder as our kids spring back from surgery, when we would be laid out for weeks. Juliana walked the afternoon of modquad, I probably would have walked the afternoon of the 3rd week after modquad!!!!Maia is a very sensitive child, so your experiences will probably not be the same, unless you are noticing a lot of the same things that Francine has written about...The one thing I would do (and will do in April)-differently regarding pain meds, is ask for the first couple of pain meds to be inserted into the IV. The only minor problem Juliana has is throwing up on the first day. She ends up with very little pain meds when she barfs it all up 5 minutes later. That might be a compromise you ask the staff for if you want a PCA and they don't want to give it. BTW, they don't advertise it, but I recommend some kind of stool softener-Colace or Peri-Colace or apple juice or something. All those pain meds are constipating. Anyway, we do project our fears onto the kids...but we do better if we just watch how they react.
Hope it helps-claudia

Yes - claudia - you are making some good points - Maia IS a very sensitive child and she didn't get a full night sleep until two nights ago - 9 weeks into this. And at mod quad - age 19 months she was completely filled with pain. And she never bounces back fast from a surgery.

I am hoping that my message about the pump will give parents who have children with low thresholds of pain an alternative to their children's suffering.

But the thing I found about the pump is that she was medicated with much less medication and for much less a time and had great results. It just sounds like a winning idea to me. Maia only had one tylenol the first day home and didn't have another tylenol until we took the splint off. So you see what I mean about results?

I really differ about pain and the age thing though. Maia was in pain for the fist 7 months of her life - relieved through primary. Everyone that knew her saw the complete change in her.

I feel better calling it high tolerance or low tolerance but not that it doesn't exist. Didn't they do a study an infant pain in the last few years and found that infants did in fact have pain and started doing things like circumcision with numbing cream now?

-francine

Well, I guess we'll "agree to disagree" on this one. I don't think there is one answer for every child and while I think the PCA pump might be a perfect solution for some children, I don't feel it would've been the idea solution for our child. JMO.
"The one thing I will comment on is the PCA pump and personally I think that every child should get this."

I think it's great if you have a positive experience (or even a negative experience) to share it with others so that they know about it and can learn from it and decide if it's something that would be good for them. I don't think though that just b/c something is right for one child that every child should do this.

Also, about this risks, it's great to know that there's a safety feature that prevents pushing the button too often. However, that doesn't mean that a child can't be given more meds than they need (same goes with oral meds too). For example, many parents might be nervous and press the button more often than they should, perhaps at the first sign of discomfort. The parents might see how well the child is doing with the meds so they might keep pressing the button every 20 minutes even if it's not still needed at that point (I'm not saying that was the case with anyone in particular, just that it's a possibility for some parents). What if the child presses the button simply b/c it's a button and looks like a fun thing to press? Is that possible? Can they reach the button? Hopefully not and hopefully that's not an issue. Another thing is that some parents might just want their children to sleep the whole day of surgery and might press the button too often simply to help their child sleep. While many parents would probably make good judgment calls, I just don't think that this control should necessarily be placed into the hands of every parent.

Someone asked why the dr. does not use a PCA pump? Well, I can't speak for any particular dr., but I know that in general they often don't want to use them in a child under 4-5 yrs old. The way it was explained to me was that PC = Patient Controlled. It can be extended to mean Parent Controlled, but the intent is for the patient to control the pain meds b/c they know best what they need. Well, for children under 4 or 5, it is sometimes hard for them to tell you exactly what's going on in terms of pain. For example, pain might be due to: the scarey experience of waking up after surgery, not being in his/her own bed, having tubes and wires all over them, hearing the beeping sounds in the recovery room, not being able to move his/her arm, dry mouth, etc. etc. I once shared an ex. with someone that Nicole told me that something hurt one time and when I questioned her and got to the bottom of it, it wasn't actually something painful at all. I can't remember what specific thing it was, but it was comparable to perhaps having a pant cuff rolled up more on one side than the other or having her shirt untucked and wanting it tucked in, etc. It was more an issue that something wasn't quite right. Does that make sense? Might sound crazy and might sound like something that wouldn't cause a child to cry, but it certainly can -- at least my child. I know that one thing that really disturbed Nicole this time was that the green cherry scented mask was the wrong color. She was very disturbed that it was green and not red. When she saw the mask on the counter in her room, she got very upset. Was she in pain at that point? No, but she cried like she was. My point is just that there are a number of reasons, in addition to pain, that children cry after surgery, esp. when they're at the age where they're too young too communicate what's wrong.

Also, FYI, I was informed that every child gets narcotics in the O.R., so it's not like they haven't already been given pain meds if anyone is worried about that. Just thought I'd mention it.

Here's another thought. Perhaps one reason (not saying it's the only reason, but perhaps one of the reasons) why the PCA pump might be effective for some people is that having it might make the parents feel less stressed about how their child is going. Then, if the parents are more relaxed, the child will see this and in turn be more relaxed. Again , this is just a thought.

I think Claudia made some really good points. If we ever have to have more surgery, I'm going to keep in mind having pain meds inserted into the IV at least during the daytime (maybe not at night though b/c I was told it has to be done every 2 hrs and I wouldn't want to disturb Nicole that much) b/c Nicole usually vomits win the first 24 hours post-op. Also, the head of pain mgmnt at TCH said that she sometimes recommends loritab elixir (sp?) rather than Tylenol with codeine if there's a history of vomiting. We've never tried it yet, but I guess it usu. stays down better than the Tyl. w/cod. It would be something to discuss with the surgeon though since that's the dr. who writes the scripts for the pain meds.

I'll also keep the colace in mind for the constipation. Pear juice works well with Nicole so I brought some this time (they don't carry it at the hospital). Gerber makes some nice small plastic bottles now that are great for bringing on trips.

I don't know about the pain pathways or pain tolerance in children, but I have to think that it's not just an issue of high or low tolerance. I say this b/c I hear stories about some babies who were in pain for months until they had primary surgery. I'm sure that Nicole was not in constant pain for 10 months and just had a high tolerance to it. I would've known if she was in pain for that length of time and would've certainly done something about it. I can't imagine that she just didn't cry b/c she had a high tolerance to pain at that point. How does a baby have high tolerance to pain anyway? Is that even possible for a baby or is it something that develops over time? I'm not asking that to be sarcastic, I truly don't understand. I guess it just seems odd to me for a baby to have that high of tolerance over another. It seems more logical to me that the nature of some injuries is that they cause the child to have constant pain, whereas some injuries do not cause that level of pain. I have no idea of facts here, just sharing my opinions. How does anyone really know for sure anyway what babies feel?

Oh well, those are my thoughts for today...

-Tina )

Tina that was Katie that the "it hurt" thing was about. And you were right, she complained of her sock hurting when it got bunched up. So each parent does have to evaluate--but it is nice to know about it if that is the way one feels is best for their child.

Back to the pain--Katie has been complaining of her elbow hurting. I wasn't sure about it until she kept telling me her knee hurt the other day and I checked it--sure enough she had fallen and skinned it up a bit. So she has the words and the feelings down now...and to me that helps a great deal in some ways. While I wish I never had to hear those words at least if I were to use the PCA I could use her actions and words to help me judge when to give her a "push" of the button. But then again, that is pretty much what we do with the orals...we just watch her for signs that we recognize.

While I don't know if every child needs the PCA at least each child's parent be aware of it and have the opportunity to use it if that is what they know their child needs.

about pain and Maia - I know the look in her eye and her face turns pale white as a ghost. I've seen it so many times over the three years that Lou and I are both confident that this is her pain look.

About the child pressing the button - first of all it has an internal - digital lock - can't do more drugs than prescribed - and the parent can also keep the button away from the child. We did not give Maia the button. We pressed it ourselves.

We kept her medicated over the first few hours and then she barely got anything - so as I said before - she actually got less medication this time then last time and did so much better with the way it was administered.

The one thing that happened after the mod quad is that Maia was really doing poorly and we had to wait and wait and wait for pain meds, then when she finally got them, they didn't last long - because she was way too far gone. By keeping her stabilized this time - it made a drastic change in how she handled it.

I respect everyone's wishes to do as they please - but I also want to encourage parents who know that their kids have higher pain levels or pain tolerance - whichever words you choose to use - that there are options out there so that their children don't have to suffer so much.

Not pushing anyone into getting it - just informing people about it.

peace,
francine

Hi. Just want to comment again. Not every child
gets narcotics in the OR.
It depends on the doctor.
When my son had surgery, the doctor just gave him motrin. It was not helping his pain at all. He was very sore, and we had to ask for a narcotic, Tylenol 3
to help him. It just took the edge off. My other son had surgery, with a different doctor, and he gave the
narcotic right away. What a difference it made, and
all depends on your doctor. Please check before, with your doctor before any surgery's.

Peace again

Hi, DebbieJean. Thanks for posting this info. I was going by what the head of the pain mgt dept told me, so it's very interesting to read about your son's experience. She did tell me that the surgeons, who write the orders, all have their own protocol. Anyway, thanks for the info. and I'll be sure to discuss this with the surgeon if there's ever a "next time." It's good to be educated. There are so many little things like this that are so important, but I wouldn't know w/o this board and the community here. Take care. -Tina

This was a really good discussion on this topic.
That is why this is a cool place to learn too.
Take Care, Eveyone.
DebbieJean
P.S. Thanks Tina

Yes this is an interesting discussion.

We look for answers here on this message board because part of us says that we can't completely trust the medical field because of how our children were injured in the first place. Yet we can't really look to each other for medical advice because first of all, we're not doctors and second of all, each child is so different from one another and so are the injuries.

I want to share something that Tina wrote to me in an email... Tina wrote her post not to negate what I was saying but because so many people look to me for information - and if they read about the PCA pump and how excited I am about it that they might just do it because I said it was so great and not because their child really needed it. When I read that I gasped because I didn't realize that until Tina pointed it out to me.

Really - only a parent knows how their children handle pain and only they know how their children are doing after surgery. Many children do so very well with the surgeries and they come out of anesthesia and they are walking around. I saw kids in recovery room walking around. And yet I know of many kids who really go down with the pain.

The lesson from all of this, I believe, is that we need to keep on our toes and be assertive and always stay our children's advocates... whether it be to STOP something from happening or MAKE something - as parents we have choices to make.

We need to always keep our eyes and ears open - watch our children - and do what we feel best for them. But it's good that when we learn something new - especially about something not talked about before - that we share it here so that it's another piece we can use if it is necessary. ...Just another piece that we can further investigate for our children.

The more we know the better we can advocate for our children.

peace,
francine

Tina was right Fran, most of us do look for your advice first. Especially when we are new. However, I think you have pointed out many times that each child is different and as the parent one must make decisions based on their child. Just keep repeating it. While we can inform as "been there, done that" we always need to point out that this is (thanks for this Tina, I love it) "just my opnion for today" or our experience. And along that line I have to point out that when Katie had the caps all the nurses felt she needed happy juice and so did Dr. Nath. Wrong--the anesthesia crew said no way with her weight and age, that it would put her down way too far. And even if a parent feels their kid might need or they might like the PCA pump it is still going to be up the pain crew in the end.

So I agree excellent discussion, excellent results. That is what we are all doing here. Yeah! we worked something out really big as a "bpi family".