I Think I Would Know my Son

Kirstenmumof3 wrote: I'm so friggin' angry right now! Spencer has been very agitated today, very moody, not himself at all. I asked him what time he wanted his bath and he started to cry. Yesterday he kept telling me his hands were asleep and he would violently shake them to wake them up. The Child Life Specialist came in and was playing with him. They were playing with these magnetic sticks and little metal balls. Spencer was getting extremely frustrated. I told the nurses that it was probably because of the morphine infussion and the bolus of morphine that he was given this morning. But the nurses are trying to tell me that he's probably scared because he has mouth sores and he remembers the pain that he was in last time, that it was probably because he was getting bored, being in isolation and they told me that morphine doesn't cause the symptoms that Spencer is having. Well I did some research and everything that Spencer is experiencing is a side effect of morphine.

Here are some side effects of Morphine (I've put a star beside the ones that Spencer has been experiencing):

*anxiety
involuntary movement of the eyebal
blurred vision / double vision
constipation "pinpoint" pupils
*chills
*depressed or irritable mood
*itching
cramps
*dizziness
rash
*diarrhea
*drowsiness
rigid muscles
*inability to urinate
*exaggerated sense of well-being
seizure
dreams
*light - headedness
swelling due to fluid retention
*dry mouth
nausea
*tingling or pins and needles
facial flushing
sedation
tremor
fainting / faintness
sweating
*uncoordinated muscle movements
floating feeling
*vomiting
*weakness
hallucinations
*agitation
abdominal pain
*headache
allergic reaction
*abnormal thinking
high/low blood pressure
appetite loss
accidental injury
hives
apprehension
*memory loss insomnia

Okay that's a lot of side effects to be experiencing. I guess I have to weigh out the pro's and con's of this drug. The mouth sores are very painful and it does seem to be helping. But why lie to me? Oh I'm so angry!

booey2 replied: Kirsten I am so sorry they are not listening to you. I know there is nothing I can really do except let you know we will send up more positive thoughts and prayers for you, Spencer and your entire family. Also will say some wake up and listen prayers for those whose care Spencer is under.

DansMom replied: It infuriates me when doctors or nurses make statements that I know are wrong. They are supposed to be the experts. Is there any way they can lower the dose?

hugs

Jamison'smama replied: Wow, it has to be so frustrating not to be listened to when it is your own child. You have been going through this long enough to know your son and his reactions to things.

cameragirl21 replied: Kirsten, i'm so sorry you and Spencer are experiencing all this frustration.
i will tell you based on my experience working with docs that they will NEVER admit if they made a mistake or did something that caused problems, they're afraid of liability, being sued, and being seen as anything less than a god with a telescope.
i'd print up those symptoms and shove them in the faces of the docs and nurses who lied to you and tell them that you're smarter than they thought and that next time you'd appreciate if they'd just tell you the truth and that it's very scary for you and your son not to know what's going on and not to get honest answers.
they'll think twice next time.

Calimama replied: I'm sorry they are so unwilling to listen. YOU'RE his mother and no one has those instinct's like you do.

A&A'smommy replied: OMG that is terrible those nurses !!! I'm sorry honey

Kirstenmumof3 replied: Thanks everyone! I emailed my DH and he supports me, but also reminded me that the nurses may not know the side effects for every medication and that it would be the doctor and pharmacist that would be most familiar with this medication. I talked to Spencers nurse and she said she would look further into it.

~Roo'sMama~ replied:
Yeah I'm sure they don't know everything about it, but it was still wrong of them to write you off like that. I'm glad the nurse said she would look into it further - I would probably print that list and show it to them and ask what can be done i.e. a lower dose or maybe a different drug. Hang in there Kirsten you're doing a great job.

michmom replied: ((Hugs)) poor Spencer. I am sorry you are having to deal with all of this.

Hillbilly Housewife replied: Kirsten...when I was in my nursing class, they told me that one of the most important things to do was to LISTEN TO THE PATIENT AND HIS/HER FAMILY.

If you know in yourself that Spencer is having these troubles because of the drug... then ask HIM if he would rather have the mouth sores, or if he would rather have those other side effects? Talk to him about maybe talking with his doctor to see if there's another drug he could take to ease the pain... like, for instance...methadone... i know it's usually for heroin addicts going in withdrawal and such, but it is sometimes used for pain relief. My grandfather took it, among a crap load of other drugs.

What about Paverol? It's like liquid codeine.... at the very least if it doesn't help much with the pain (but it should) it would relieve his diahrea...

My grandfather also took Hydromorphone, which is derived from Morphine, but the side effects are virtually non-existent. It's more commonly called Dilaudid. We used it a lot at the old age home where I worked last year.

Speak to his doctor, and bring that list with you. Get an information chart from a Pharmacist. One of my good friends is a pharmacist, he graduated last year. He told me, when I started my meds, that it's a common misconception that doctors and nurses know dosages and side effects... a lot of them do, of course, and those who care enough do their research... but the truth of the matter is that they see so MANY cases of this and that... that they don't have the capacity to retain all that... and so they stick to a few selected types...and go with those, it's just easier to remember that way.

Get an information chart from a pharmacist, rather than just a print-off from the 'net... and go from there. I hope that helped... and I hope Spencer can find relief from his sores soon.

redchief replied: Having been in the patient care business for many years, and just reading what Rocky said, I can tell you, many times I've wanted to personally throttle some nurses for simply not listening to what I or the patient is telling them. You can actually see them turn off and it really burns me. I'm sorry you're going through all of this, Kirsten. I'm glad you're keeping your spunk up though.

gr33n3y3z replied: I'm sorry they are not listening to you
morphine is one nasty drug cant they give him another drug for pain? there are so many out there with less side effects and do just as good for pain.
for you and Spencer

luvmykids replied: I'm sorry you're having to battle them again I hope they figure out another med or lower dose or something

sparkys2boys replied: I can't ass alot for then what the others have said other then I am so sorry that you are going through this again with them. Stick to your guns and make yourself heard to them.

jcc64 replied: First of all, I'm really sorry Spencer is so uncomfortable right now. It must be wrenching for you to watch him struggle. Is there a pain management specialist you could speak with? There are so many different kinds of meds- everybody's physiology is unique- if the morphine is causing so many problems, there has to be something else he could try.
I'm sorry about the nurses' insensitivity. Stand your ground, Kirstin- to them, it's a job, to you, it's everything.