Fed up with the health care system (Need to vent)

[ReneeP]

I am soooo tired of babysitting drs and nurses who are supposed to be caring for my children. They went to school to learn their jobs, yet I have to do half the work for them. Kacie had her second sinus surgery yesterday. Even from the registration, I had a bad feeling about it. We had an appt to pre-register her at the hospital Wednesday at 3:00. They called me the day before and asked that we come in early, around 2:15. My husband took her and was there by 2:15...well, I called him at 4:35 and he was still waiting to be seen. He had just asked how much longer and they said about another hour. Finally they did the registration and we were told to be at the hospital by 7:30 Friday morning for surgery.

Thursday I got a call saying that we had been moved up on the list and to be at the hospital by 6:30 instead of 7:30. Great, not a problem. We got there on time and it was 10:30 before they even took her back to the prep room. 4 freaking hours...and the child wasn't allowed to have anything to eat or drink. Okay, well, that was fine...I didn't say a single word. I was calm and rational. I didn't want to make a scene before they took her back knowing they were responsible for her care. Finally they take her into surgery....

A couple of hours later, they come and get me to go see her in recovery. I asked if my husband can go too and they say no...only one parent. That pissed me off a little but I went on. When I saw her I saw that she had these string things hanging out of her nose. She didn't have those after the last surgery so I didn't know what they were. I asked the nurse and she told me that the dr had put stictches in her nose because he did much more extensive work this time. Well, finally she woke up from the anesthesia (at least partially) and they allowed us to move to another room where my husband could join us. Then I asked the nurse when the dr was going to talk to us and she said he had already talked to my husband and left. Now I was really pissed and I couldn't hold back any longer. I asked my husband if he said anything about the stitches and how long they needed to be in...also about when to continue the nasal washes...the dr didn't mention either. So, the nurse tells me that the stitches have to stay in until we see the dr next Wednesday. And not to start nasal washes until then. I demanded that she get the dr on the phone for me. She did so and I asked him how things went and stuff...he said everything was good. I asked why she needed stitches this time and he said she didn't have stitches. I asked what that was in her nose and he said packing. He said the recovery room nurse was supposed to remove the packing before she woke up. I also asked when to continue nasal washes and he said right away.

Well, by this time Kacie is wide awake when we finally get the nurse to come in and remove the packing that the nurse had thought was stitches. She screamed bloody murder. I asked to speak to the director of nursing. She finally came in and basically defended the nurses saying that the dr didn't leave orders like he should have. She showed me the chart and there were no orders written. I said fine...but if they don't have orders they should call the dr for them rather than making them up.

Am I over reacting here? If I had listened to the nurse, I would have thought she had stitches and that packing would have been in her nose for 6 days. Also, that would have been 6 days with no nasal washes. Kacie has an appt on Tuesday to see the CF dr and I can just imagine what she would have thought of me taking her in with her "stitches" in her nose... At one point I flipped out and told the dr on the phone that I would never walk back into that hospital. (Kacie's first surgery had been at an out patient surgery center)... The director of nursing as well as four other nurses were all standing around watching me and I knew I was going to lose it. I turned to the director of nursing, with tears running down my face and I grabbed her hands in mine and I looked her in the eyes and said "Listen, this may not be your problem, but I need you to sit down with me and just listen to what I have to say"... We sat down and I told her everything I was feeling. How it's so hard not to be able to trust people to care for your child...how if I am not constantly following them around, I don't know what might happen. I basically spilled my guts. I felt much better after that.

Finally they were ready to release her. I got her dressed, picked her up and immediately she began to vomit all over me...lol... I mean ALL OVER ME! I was drowned in old blood she had swallowed during surgery. It was terrible. So the nurse gave me a hospital gown to wear and said she'd push me in a wheel chair to the car so people would think I was a patient.... So we leave the hospital, me in a gown, holding Kacie who was completely dressed but had this huge bandage on her face, in a wheelchair through the parking lot...lmao.... What a way to end the day.

I am so sorry for this being so long...I feel better having vented even if no one reads it...lol.

 

[debs2girls]

Renee, I am so sorry for everything that happened at Kacie's surgery on Friday...I can understand exactly how you feel....and that poor baby too....how did she/you sleep last night? good I hope...how are you all doing today?
Keep us posted on how everything is going, ok?
Debbie

 

[anonymous]

I am soooooo sorry to hear this!!!

I am a student studying to be an RN and I really appreciate these stories cuz I feel it will make me a better nurse.

I know first hand that it can be super frustrating and I sympathize with you.

Hope the next few days are much better.

DietRootbeer from Canada

 

[naomiangel]

My son Adam, who passed away in 2001, was put in a similar situation when he was to get a new port.
this was a fragile young man who need all the nourishment and rest he could get.
By the time they were through with him, he was a mess - totally stressed.
I wrote a letter to the Dr. who placed the port and he replied to me and said nothing like that would ever happen again to Adam.
They began planning the port on a Friday and that didn't happen. He was npo and all and stressed. Then they said they would try over the weekend. He had to wait for any emergency - which I understood. Nothing flew over the weekend and it was Monday by the time they did it.
He was a mess and I felt just like you do. It's good to vent and get it out.
Sometimes you just have to remind "them" we are human beings and not just a "procedure"
You did experience a lot of messed up information.
That is really unforgiveable as far as I am concerned.

 

[anonymous]

Renee,

I am so sorry for what you and your daughter had to go through. That sounds awful. Thank God your daugher does have an advocate for her like you. I think you were absolutely right to want to speak directly with the doctor. The doctor need to speak with BOTH parents as you are her caregivers and need to know exactly what occurred. I know that when I have a stressful day and have doctors telling so much info I have a hard time absorbing it and when my husband is there with me, I am always surprised at what I thought I heard and what my husband heard. Sometimes, I just miss stuff because I so conserned with my daughter.

And no you are not overreacting. Sometimes nurses think stuff is no big deal but she's your daughter.

When my daughter was in the hospital last time, I felt like I too had to be present every minute and make sure she got the care she needed. The residents who are pretty clueless about Cf want to prescribe drugs that she shouldn't be on . They stuck her for a piccline like 5 times when i told them they get one try(She was only 2 1/2 at the time) So on and so on. They kept her NPO for more thatn 12 hours for a procedure and she was screaming and crying to drink and was looking dehydrated by the time they took her. Basically, I ended up almost flipping out as well demanding to speak to the nurse manager and administator on call and did not hold back at my displeasure of our care. I even had them call me at home because I voiced my concerns so clearly.

Plus, I do understand what a hectic life being in the medical profession is because I was an RN myself for 9 years prior to haveing my daughter. Most of the time they are short-staffed and most of the seasoned nurses are burnt out. That's why I spoke with administration. They NEED to know what's going on.

Rebecca(Mom to Sammy 7 no CF and Maggie 3 with CF)

 

[breezeesmommie]

Renee

I am sorry for all that you went through. Good for you standing up and saying hey this isn't right get the Doctor on the phone. My 3 year old is in the hospital has been there for a week now and I know that the nurses think I am the parent from hell, I look at it from this point. I am my daughter's VOICE, the only one she has and I will call any nurses on any screw ups or anything I do not understand or I feel is wrong b/c I make sure that I have a copy of the Doctors orders, this stems from nurses holding back pain meds b/c they said the Doctor did not order it and well the Doctor has already gone home.

Any parent that has a child in the hospital stand up and be their VOICE. Do not be passive and do not accept an answer that you feel is wrong, you may be wrong but you may not be and it's your child not theirs.

Good luck Renee
Sue<img src="i/expressions/heart.gif" border="0">

 

[ReneeP]

Thank you all so much for your responses. It makes me feel better to know there are people who understand what this is like. Sometimes I feel like no one in the world cares or understands. It's so frustrating. Most of the drs and nurses I run into don't know anything about CF. One of the operating room nurses yesterday asked me if Kacie had any health problems. I said yes, she has Cystic Fibrosis. She looks at me with this confused look on her face and asked "does it do anything to her?" I know it's not her fault she doesn't know but it still makes me want to scream sometimes. I just want people to understand.

Kacie is doing fine this morning. She slept all night and she made it through a nasal wash this morning. She is ready to go out and play but I'm making her stay in today. I don't want her to be running around to much yet. She is quite a trooper. She rarely ever complains. I am glad at least it's just one of the girls who has these problems. My older doesn't have any sinus problems.

Yesterday while I was at the hospital I was also dealing with another problem for my sister and I'm sure that was part of why I got so stressed out. She is handicapped from a surgery related stroke she had when she was 24 (she's now 37). It left her both physically and mentally disabled so she is unable to do much for herself. Due to this new medicare part D thing she is all confused and somehow she has fallen into a black hole somewhere and seems to have no prescription coverage now. She can't get her prescriptions filled and after yesterday was going to be completely out of seizure medication. I spent hours in the waiting room on the phone with medicare, Amerihealth, Humana, her neurologist and her pharmacy trying to find a way to get her medication filled. I would be on hold for 45 minutes or so when a nurse would come in and I'd hang up then have to call back and start all over. It was frustrating to say the least. I wanted to only have to worry about my daughter and I was having to take care of everything else too. (I love my sister and wanted to help her, don't get me wrong, but we have several brothers who could try to help but don't)... My husband was very resentful that I was having to do all that while at the hospital with our daughter. But I knew if I didn't do it no one would and she'd be having seizures. I finally found a program which is going to provide her with a 14 day supply to give us time to get it all worked out so I'll try next week to get the prescription thing worked out for her. So I am sure that had me already stressed out and only added to the problems that were occuring at the hospital.

Oh, and to top it off, we are in the process of buying a house and were supposed to meet the realtor to just sign a paper real quick while on the way home. We met him in the parking lot of a grocery store with me wearing a hospital gown, and Kacie passed out in the back seat of the van... I couldn't get out of the van with a hospital gown on so the realtor got in the van with us and we had our little meeting and signed the papers.... It was a day I won't soon forget!

 

[anonymous]

Renee,

I can't believe how many things you are juggling at once. It sounds like too much for one person. You deserve a moment to yourself and nice big glass of wine(if you drink)

Rebecca(Mom to Sammy no CF and Maggie 3 with CF)

 

[JazzysMom]

Yet U are still going strong, Renee! I am proud of you! Hugs/Kisses/Luv/Stregth!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Emily65Roses]

It's REALLY sad that we have to keep such a close eye on doctors and nurses when they're paid 6 digit salaries to do what they do. They should be able to keep track of this crap without you calling up the doctor to double-check. I'm not a nurse, so I don't know how hard it is... BUT THAT'S WHAT THEY GO TO SCHOOL FOR!!!!!! Hello!

Anyway, as sad as it is (and it is extremely pitiful), you will always need to do this type of thing. And once Kacie gets old enough, she'll learn to do it for herself. When I was still too young to speak up, my mom was always asking questions, checking on stuff, etc. Now that I'm old enough, I do it. I ask what EVERYTHING they want to do to me / give me / make me take is for. What it does, why I'm taking it. I don't ever do anything anymore without some explanation. And if I think something is wrong, I say so. Just like you did. Mike has learned how to do it too. If he doesn't understand something they're doing to me, he asks whatever is on his mind. I'm glad he doesn't hold back his questions either. It's an important thing to learn when someone like a CFer is important to you.

I'm so very glad that you can do that already. It takes a lot of parents years and years to learn how to do that, and it's very important with a chronically ill child to learn how to speak up. Like I said, I am not condoning it, because it's pathetic and ridiculous, but you'll have to do this for her until she can do it for herself, and then she'll have to do it forever.

So I'm happy that you already can. Keep it up. That's the best advice I've got. Keep speaking up, never assume they're right just because they're doctors and nurses. Question everything, especially when you think something isn't right. Kacie's lucky to have you that you already figured out that you need to speak up often.

 

[littledebbie]

As frustrating as this is, i'm with Emily. It never changes and Kacie will have to learn to do it too. For the most part if someone was to meet me or my Mother they would probably describe us as rather easy going and laid back, but when I'm doing any kind of tune up I am questioning every order that seems out of the ordinary, every drug, dosage, time etc. And whle I try to be respectful at all times, sometimes I think to myself...what would my mom do? And then I get off my laid back butt and become the squeaky wheel. No one else cares as much about Kacie as you do, and one day Kacie will proably think to herslef "what would my Mom do?" and then she'll very respectfully (of course) demand to be treated like the beatiful person she is, not patient number blah blah blah.

We love you CF Mommy's <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

Besides the obvious of being the advocate for the immediate care, the more U ???, the more U learn, the more it will help in the future. Especially if there is any neg or pos reaction to meds. If something works better than another. If there are secrets in taking blood that will make it easier for everyone. So u are doing it for the immediate concerns as well as the future & down the line for her to take over. I was my own advocate very early on since we live so far from my CF center. When I went into the hospital I would be alone for days & often encountered things I had to speak up on. Of course back then kids werent suppose to have an opinion & sadly because the hospital I go to is a catholic hospital & years ago many of the medical staff were priests in training (sorry dont know the politically correct term), you werent suppose to ??? them. Well I did & there were many times they had to contact my mother who was 3 hours away for her to tell them to respect my wishes. To this day the long term people remember me being a "lovely, but stubborn, stick to my guns" child. LOL! I am the same way as an adult!

 

[anonymous]

When DS was born he ended up in the NICU for 4 weeks, was home for a day and ended up in the local hospital for two weeks 'cuz of an infection. The nurses drove me nuts. DS was only 4 weeks old and in a private room all by himself. Nurses station was down the hall. So I stayed nights in a bed in his room. Instructions were to feed ds every 4 hours 'cuz he'd lost so much weight. Plus he was on ivs and they had to run it thru his head and the wouldn't answer the alarms when the IV was done.

I was a nervous wreck, I was exhausted, sometimes the nurses would wake me up to tell me they were just too busy to feed ds. I'd wander down to the nurses station and they'd be reading or chatting. They wouldn't give DS his enzymes with his bottle sometimes. One night they put another woman in DS's room -- her baby had jaundice and needed to be under the bili lights. The nurse told me I could sleep in the family lounge if I wanted or just go home -- this poor woman wasn't getting any sleep 'cuz her 3 day old had jaundice and DS was too noisy. I was furious. Slept in a chair in DS' room all night long and made sure to make LOTS of noise.

DH finally switched places with me and didn't have any of the attitude that I was getting. If anything they went out of their way to make life easier for him.

 

[anonymous]

I am sorry you endured this. We have to stand up for our kids or no one else will. Medical staff have to be watched and checked up on or our kids can really be hurt.

 

[binder642]

Listening to you guys about health care I can understand. I am coming from this new experience from both ends. I am a nurse and my son has currently been diagnosed with CF. I can't tell you how frustrated I have been waiting for people to answer my questions. I have to wait for one Dr to call the next to see who wants to do what. During this time I have to go to work and try and be a good nurse. I am finding it very draining right now, but from reading all of this and finding out first hand how frustrating it is right now I hope that I can become a better nurse....I cant seem to even get the Dr to call me back right now, let alone give me an answer as to how to proceed. I pray that it gets easier as time wears on....