Dumb questions

[alizesmom]

First an explanation. I'm stuck in the hospital with a nonverbal 3 yr old. DH is at home with the sick 5yr old and I'm bored enough to ask dumb questions.
1. Do you find that no matter what you say, medical personnel have to find out for themselves. For example: don't suction her mouth since it will freak her out. I leave the room, they suction.
2. Why does pride prevent people from understanding their skill isn't enough?
My children are hard sticks for pediatric IV teams and pediatric anesthesiologists yet if I have to take them emergently to the local ED, I have to argue with first the ambulance then every nurse in the ED that I don't want them to try. If I lose the arguement they eventually ruin every possible vein before my kids get to the peds hospital 2 hours away. Then they end up with PICC lines.
3. Why doesn't doctor A talk to doctor B?
4. You know yourself or your child best. Why won't they listen to your warnings? I predicted for 12 hours that my daughters trach would plug. It's something I can't change alone. No one would help because they wanted to wait for the trach person. Results-she plugged and oxygen levels dropped to 11% of normal so of course she was blue and limp, I grabbed the nearest employee (and still don't know if I grabbed the housekeeper) and told her that she was helping me change the trach and talked her through assisting me. After the change, some articial breathing (with an ambu bag) and lots of oxygen my daughter is fine.
As you can tell I'm not a real happy camper right now. Karen

 

[mechurchlady]

your questions are not dumb but are valid. My aunt had a doctor for many years and he never diagnosed her with diabetes even though she was a textbook case. The local hospital was jackhammering when mom arrived and she was out of control diabetes and double pneumonia. A very cognant woman gone insane. They were going to send her home because she had a major meltdown. They even tried to sign a paper to get her released.

Your stories are not new or unique and actually too many of us have gone through the same thing. I send you hugs and prayers. Not dumb questions but questions that should not have to be asked because if people did what they should do then we would not have to ask questions.

 

[LauraVV]

2. Why does pride prevent people from understanding their skill isn't enough?
My children are hard sticks for pediatric IV teams and pediatric anesthesiologists yet if I have to take them emergently to the local ED, I have to argue with first the ambulance then every nurse in the ED that I don't want them to try.
4. You know yourself or your child best. Why won't they listen to your warnings? I predicted for 12 hours that my daughters trach would plug. It's something I can't change alone. No one would help because they wanted to wait for the trach person.

Karen, I don't think your questions are dumb but maybe I can help with some answers. It's not pride that requires ED nurses and emergency personnel to attempt sticks. ED nurses and ambulance personnel tend to be some of the best stickers. Protocol says you have to try before calling someone else. They may be required to attempt a stick. I know at our hospital we had to try at least twice before we called anyone else.

If your child isn't plugged it just wouldn't be considered an emergent need. Floor nurses just don't have trach training. That's something a respiratory therapist would do.

I have a couple of questions. First, if your child needs regular IVs and is a tough stick then have you and your primary provider considered a central line/port? Secondly, can you learn to change the trach on your own? I worked as a trach/vent nurse in the home and, before they'd let kids go home their parents needed to be able to change them by themselves in case of an emergency. I can tell you when I worked on a floor I'd never touched a trach.

My son is an easy stick. But...if he tells you his IV feels funny you'd better change it. Even if it flushes well. His IVs always infiltrate about every 24 hours. I tell the nurses and physicians this as soon as he's admitted. I alway tell hospital personnel this as soon as we get to the floor.

Good luck! If you ever find out why physicians don't speak to each other please let me know!

 

[lovespoohbear]

Karen just realize DOCTORS and NURSE are STUPID at times. example(kinda like yours) i have md and was in respiratory failure in 06. they did every test in the book until they figured it out. on the cat scan my gray matter was white and white was gray. my dad and doctor had to tell them thats normal for me. then every time a nurse came to do a blood gas they would do it the way they were taught. HELLO when i say go straight down and you'll get it first time it works, but NO they wanna go at a 45* angle and have to poke me 10 times and dig before they do what i say and get it the first time. Just know i know what you mean and keep being the advocate for your little one.

 

[alizesmom]

Karen, I don't think your questions are dumb but maybe I can help with some answers. It's not pride that requires ED nurses and emergency personnel to attempt sticks. ED nurses and ambulance personnel tend to be some of the best stickers. Protocol says you have to try before calling someone else. They may be required to attempt a stick. I know at our hospital we had to try at least twice before we called anyone else.

If your child isn't plugged it just wouldn't be considered an emergent need. Floor nurses just don't have trach training. That's something a respiratory therapist would do.

I have a couple of questions. First, if your child needs regular IVs and is a tough stick then have you and your primary provider considered a central line/port? Secondly, can you learn to change the trach on your own? I worked as a trach/vent nurse in the home and, before they'd let kids go home their parents needed to be able to change them by themselves in case of an emergency. I can tell you when I worked on a floor I'd never touched a trach.

My son is an easy stick. But...if he tells you his IV feels funny you'd better change it. Even if it flushes well. His IVs always infiltrate about every 24 hours. I tell the nurses and physicians this as soon as he's admitted. I alway tell hospital personnel this as soon as we get to the floor.

Good luck! If you ever find out why physicians don't speak to each other please let me know!

Laura, I do change trachs all of the time at home but "hospital policy" forbids me from doing it here. I also can't do it alone because my daughter doesn't understand and fights the procedure. If they had listened to me, my daughter would not have plugged. If I had not been in the room and known immediately what the problem was, she could have died. You see I hit the bell and told them I needed to change the trach NOW, no one came. I do understand hospital policy (retired nurse) but there are times that intelligence must overrule policy. This applies to the IV issue as well since my kids have such badly scarred vessels, the ambulance/ED staff just don't believe what I tell them until they try and find out first hand by which time the damage is done. As to central line/ports both kids have other issues that would make a permanent indwelling line too risky at this time. I guess my frustration would be akin to your son telling them the IV wasn't right and them insisting on using the same line because it still flushes. I do appreciate your thoughts and just wanted to respond to them. I hope my information clarified my circumstances.

 

[LauraVV]

.... but there are times that intelligence must overrule policy.

Ah....but you're expecting common sense. What gave you the idea that that applies? (OK, I might be slightly sarcastic.) Because I used to work in a hospital I would never leave anyone I love in the hospital alone. A husband's friend was in the hospital around Christmas. He had problems breathing in the middle of the night and hit the nurse call light. An aide came in but he didn't see the nurse for hours. When he finally saw a nurse his sats were in the 60s. The next day a nurse told him that he should always remember to call for help when he's having problems. I told my friend to have her husband call 911 if that happened again.

I would ask your physician to write an order that your child's trach be changed when you ask (in addition to any other standing orders). If you're not getting a response you do have the right to page your physician. If the attending physician gets called by a parent (especially if he's not at the hospital) I'm sure that your concerns will be addressed in a timely manner in the future.

It's taken 1.5 hours to get an IV in my daughter. Thankfully, she doesn't need them very often anymore.

I hope you guys get home quickly.

 

[daneenm]

Gosh, so sorry you are having such a trying time. We just spent time at our local hospital in December with our son (7) for a very severe case of stomach bug and high fever. It is frustrating to have to be such an advocate for your child every second they are there. We are not facing the same challenges you are, but our son does have Type 1 Diabetes and if I am not very specific the right things are not done.

This visit, the admitting doctor indicated an ADA diet for him. First of all we never asked for that nor would we have. A child with Type 1 eats a normal diet and is controlled by insulin. Even though I could have brought in any kind of food I pleased and fed it to him, no one could change the order coming from the kitchen until they reached the doctor. Can you imagine a child on an ADA diet, as if it weren't hard enough to get him to eat with the stomach bug!

Contrary to your experience, i have found that the ER folks are much better sticks than the Peds nurses. We have had several hospital stays and each time we went through the ER, the process was pretty straightforward. Going straight to peds has been torturous. My son has very hard veins and the last visit took *7* sticks to start the IV and then it blew 5 hours later and had to be restarted.

All this to say I can completely empathize with you. I firmly believe it is our litigious society that has made the rules so restrictive.

Hang in there and I hope you are home soon!
Daneen

 

[alizesmom]

Contrary to your experience, i have found that the ER folks are much better sticks than the Peds nurses. We have had several hospital stays and each time we went through the ER, the process was pretty straightforward. Going straight to peds has been torturous. My son has very hard veins and the last visit took *7* sticks to start the IV and then it blew 5 hours later and had to be restarted.Daneen

The ED I am referring to is not a children's hospital. It is my local hospital and we go there only if it isn't safe to drive 2hours to the Children's Hospital ourselves. You see the local hospital is totally unable to care for my caliber of kids other than stabilize and transport. The ED doesn't even carry the equipment needed to stabilize my kids. I have to bring everything but meds with me. I know it's a no win situation and I only leave my children for bathroom breaks, food runs to the cafeteria (I eat in the room) and the occassional (heavenly) shower. Karen

All of you are wonderful for supporting me and letting me know I'm not alone in this. Thanks.

 

[Val]

I have a confession to make. I am a psychologist by training, although after many years I have returned to basic research. I always thought that I "understood" parents, although I realized how LITTLE I knew and how much I underestimated the knowledge base of parents when I had kids of my own. Then I realized how far off base I STILL was when my own DD10 was born and we discovered her hearing loss. As a professor who now teaches basic science to clinicians, I also try and get my (very) young and (very) naive students to understand that if you want the nitty-gritty on a kid, ask the PARENTS! Of course, there are some "helicopter" parents, but they are in the VAST minority. Oh, how many hours of frustration I would have saved if I had ONLY listened to parents!!!

Guess God played a pretty good joke on me..making me sit on the OTHER side of the IEP table and navigate the medical system with my own child! Nothing like looking at that group and having them stare you down to make you feel as small as a Whoville citizen on Horton's clover! Maybe that's why we parents need to stick together- if we shout loud enough that stupid Dr. Kangeroo will finally hear us!

 

[Camster0307]

Karen - First of all - Hope your daughter is doing better.

Listening to your story in THE reason why I never leave my child alone when she's in the hospital. She, too, is non-vebal and NO ONE knows her better than me!

I'm surprised the hospital has a policy that you can't change the trach. What would they do if you did? As far as "sticking" your daughter: we have the same issue. Been told my daughter has "rolling" veins. I warn anyone that comes near her -she's a difficult stick; they get ONE shot - they miss, I'm demanding someone else. I've always found that the nurses who work in the NICU are pretty good since they're used to sticking preemies - that's who I insist they get.

Hang in there!

 

[ireland_nicole]

Honey, we get it I hope you get home soon
Nicole

 

[alizesmom]

We are going home!!! Thanks guys. Karen

 

[daneenm]

We are going home!!!

Most excellent news!

--Daneen

 

[I Love Pluto]

Patients and their families do not have brains while in the hospital. Any doctor or nurse can tell you that.

I am so happy that you're home with your daughter. I hope she's feeling a lot better!

 

[Piper]

So glad you're going home! P & P for your family