anyone hear from theresa

[nikyergen]

Theresa,
Stay on top of the nurses with Nicole's pain management. It takes forever, or so it seems, if those pain meds aren't kept come to get it under control again. We only had one nurse that we had a problem with that. I just got assertive with her and kind of told her which way the bear was going to go. The rest of them were great and very prompt with pain meds.

I sure wish you would of had some other parents around you. That seems to really help, and the staff that are used to dealing with children and their pain/fears.

We did have one nurse we called the Seargent. She told Crystal that she was going to walk whether she wanted to or not. You should of seen that kid get around the ward. I think she almost ran, to just get the Seargent off her back. We only had her once, but I really think it got Crystal really working hard at getting well enough to go home.

I am sure you are looking forward to going home. Being home without the nurses is a scary thought, but not that bad. It was kind of a relief to not have someone come in the room every two hours and wake my sleeping child.

Love and prayers to all of you.

'til later,
Nikki

[jc3]

hi theresa
glad to hear nikki is coming along. We also had richard as our nurse. He was great, we loved him. When we were there, there were no other kids on the floor so they gave us a private room, which was so great and the view was awesome. The sleep chair wasn't as bad as i thought it would be. I think i was so tired sometimes it didn't matter what i slept in. I dreaded when p/t would come and make her walk. She would scream! She didn't want to do it and really gave them a hard time. I would have to leave the room until they got her up, because when i was there she would scream louder. The whole floor must have heard her.
Jennifer

[susannajon]

Hi Theresa,

There were a bunch of kids in the unit when I was there, I guess because it was Spring Break, and people schedule procedures around that time.

We had this one night nurse "Nettie" who we had a major problem with. I talked to some to other moms and we had all had run-ins with her, so we ended up filing a formal grievance with the nurse supervisor, and I asked that she not be allowed back in my daughter's room, and someone else took over her care from then on. All the other nurses were fantastic.

The thing with pain, once it gets out of control, it takes forever, usually hours, to ramp back down again. If you see her moaning or starting to get uncomfortable, tell the nurses right away. Don't let her get to the point where she's frantic. Even if they tell you she can't get any more meds, insist on speaking to pain management, because there's always something that can be done.

Hang in there, and try to get some sleep. My thoughts and prayers are with you.

Susanna

[nikyergen]

Theresa,
When Crystal was taken off the morphine pump, they tried oral meds every four hours. Didn't take long before they figured out that wasn't going to work. This is an example at what was done for Crystal. at 8am they would give her morphine (oral) then at 10am codiene (oral), at 12noon morphine, and so on and so forth. If they are making her sick to her stomach they can give her phenigrin (sp) in her IV to releave that. So, don't let them tell you that they can't do anything. They can.

Don't be affraid to get assertive with the nurses. She is your child and you have to deal with it, not them. They can walk out of the room when they don't want to deal with it.

Keeping lots of prayers for you guys.

'til later,
Nikki

[jc3]

susanna
i had a big problem with "nettie" as well and richard was really mad about the whole thing. This is what happened. Nettie was our night nurse and when richard left for the night he told us no one is to press nicole's pump, not me, nor any nurses, only nicole when she needs it. Well he leaves, nettie comes on duty and i am laying in the chairbed next to nicole and she comes in to check nicole and at the time nicole was resting comfortably and i see her press the button. I should have said something, but didn't. My husband says i have a big mouth when it comes to him, but not in those kind of situations. Anyway, i didn't sleep all night worried that she was going to do that again. I hid the button under nicoles covers. I was worried that she would be pressing it for nicole all night so nicole would sleep and not bother her. I was worried that nicole would get overmedicated, since that was the first night they were trying to get her on oral meds and wean her from the pump. Anyway, Richard comes back the next day and i told him. He was really mad. I told him not to say anything to her just in case we had her again, but before he left he did, which i didn't know until i went to go ask Netti for something and she was very nasty! She had a major attitude to me and it was very noticable that he had said something. I gave it to her right back and then she said that "she IS allowed to press the pump. I told her then that i was told it was only for nicole to press and i did not want her to touch it. I was very nasty to her and then she got nice and everything was fine. I can't believe other people have had problems with her.
Jennifer

[nicoles mom]

My Husband Went Home Today. They Are Pushing Nicole To Move The Kid Is Moaning In Pain Off And On. She Went For A Standing Xray Today.dr. Boachie Came In And Said Maybe Tomorrow. [tues] Gtg

[nikyergen]

Theresa,
I hope Nikki gets up and moving soon. I am sure she will feel better once she gets confident walking. Has she started walking much yet? Don't let them worry her about having a bowel movement. The doctor finally got in the middle of the nurses and told them to leave Crystal alone. He was very confident that once she got home in her own surroundings that wouldn't be a problem. Guess what, he was soooo very correct. Are they able to keep her pain under control? I just can't tell you how much better Crystal did once we got her in the van to come home. It was all the difference in the world to know she was going home. She done nothing but go up hill since then. I felt like we were stuck on dead center at the hospital.

My prayers are with you.

'til later,
Nikki

[susannajon]

Hi Theresa,

I hope you're getting ready to go home today. It sounds like you're right on schedule with Nicole and she's doing great!

Hi Jennifer,

I am sorry you had to endure Nettie too. We had a lot of family support, and my husband and I took turns spending the night in the hospital room, and my step-mom also took one night to give both of us a break. One night when my husband had "night duty", my daughter was having trouble with pain control. She was up all night moaning and crying, and Nettie never escalated the situation to the pain management team. When I got there the next morning, both of them had not slept a wink, and my daughter was exhausted and miserable. I raised holy hell, and Nettie was apparently reprimanded for not paging pain management to come and help my daughter.

The next night, my step-mom spent the night in the hospital room, and Nettie was again our nurse. She was apparently angry about me making a fuss, and she took it out on my daughter. She was nasty, and did little passive aggressive things to my daughter all night long. She turned her and was unnecessarilly rough with her, yanking on her arm and moving her chest tube roughly. Every time she came in to do vitals, she would march in basically yelling and turn on all the big overhead lights. My daughter's pain pump ran out of medication, and it took her 50 minutes to respond, even with the alarm blaring and after being paged multiple times. When she finally showed up, she accused my stepmother of messing with my daughter's IV, which was totally ridiculous, as I know she would never touch the medical equipment. Another nurse finally heard the commotion and came in and rescued my daughter.

We kept a journal while we were in the hospital, so we had a detailed record of exactly what had gone on, with times and details. We used the journal as documentation to file the complaint, which was very helpful. I should say that every other nurse we had was absolutely top notch, some of the best care I've ever experienced, and overall the hospital was excellent. It just takes one bad apple to color your experience, though.

Susanna

[lorrie]

Hi Theresa
Sounds like you two are having a bit of a rough ride. Hope things improve soon.
Thoughts and prayers coming your way

Lorrie

[nicoles mom]

Hi Eveyone
Nicole Is Home We Came Home Tue Night Just To Busy To Post. Lura So Glad Alex Surgery Went Well AND YOUR HOME. I Will Post Later When I Get The Time.
Theresa

[Lura]

Theresa,

Alex is doing so well, I am praying that Nicole is settling in well now that she is home. Feels good to be home, huh? I am still pretty tired, as Alex gets up around 2 a.m. each night and wants to snuggle to get back to sleep. He's been off pain meds for 3 or 4 days (I've lost track). I think he has some pain, but he just hates the meds, so what's a mom to do?

To all mom's whose children feel great in a short amount of time, I just heard of a girl here who had surgery in January, was feeling so good, and then had a rod come loose? I hear she now is in a cast. I will try to verify this for more accurate information. I guess the key is to really give them time to heal.

Welcome home Theresa and Nicole!! Rest, rest, rest!!!!!

Lura

[Mary Lou]

Lura,

A rod coming loose? Yikes! That's ever parent's nightmare. I agree with you, they need time to heal, but I'll tell you right now has been the hardest time of all for Jamie. She is 4 months post-op and still VERY limited on what she can and cannot do and she is going crazy now that the weather is getting nicer. She knows why she can't do much, but it doesn't make it any easier. Does anyone have any suggestions on things to do outside that don't require running, jumping, riding bikes, etc.? Thanks.

Mary Lou

[jc3]

hi marylou
there's not much else to do if you can't run, jump, ride a bike, etc. When the weather gets warmer swimming will be good. I know it's hard when they are not allowed to do anything that's when they want to do it. My daughter never rides her bike and now since she can't she wants to. Go figure. My daughter has been doing alot of walking since the weather is getting a little nicer. Her and her friends have been walking to the ice-cream store, dunkin donuts, etc. It is about a mile from our house, maybe a little more and i thought it would be too much for her and she said her back doesn't hurt at all when she is walking, which i was happy to hear. The other day they walked to friendly's and that is even farther and i was worried that her back would bother her and it didn't and that's good exercise.
Hearing Lura write about that person's rod coming loose is definitely my worst nightmare. I was a wreck the other day, nicole had to go to the orth and she had a longer appointment then usual and they said she needed to be premedicated for it and she said her gums were bleeding a little and i was nervous about that, because they say you can get an infection around the rods or something like that. A very scary thought! Just something else to worry about
Jennifer

[nicoles mom]

well i'm going to try to post nicole is still awake so she may call on me.
DR. BOACHE OFFICE CALLED US TODAY AND WE ARE GOING BACK TOMORROW TO BE FITTED FOR A BRACE. THIS WAS SUPPOSE TO BE DONE BEFORE WE WHEN HOME BUT SOMEONE MESSED UP. SO BACK TO THE CITY TOMMORROW. NICOLE HAS A LOT OF SHOULDER AND RIB PAIN AND STILL HASN'T GONE TO THE BATHROOM #2 SINCE WE HAVE BEEN HOME. SHE IS TAKING COLICE AND IS ON VICODEN FOR PAIN EVERY 4 HRS. I WASHED HER HAIR TODAY AND GAVE HER A BATH. THE NURSE WE HAD THE LAST TWO DAYS WOULD NOT WASH HER HAIR OR THE AID. THEY TOLD ME THAT I SHOULD DO THIS WHEN I GET HOME. HER BACK LOOKS GOOD DR.BOACHIE DID A GREAT JOB. I DIDN'T LIKE ALOT OF THE NURSES AT THE HOSIPTAL AND ALWAYS TOOK FOREVER TO COME WHEN NICOLE WAS SCREAMING IN PAIN. THIS PISSED ME OFF. THE NIGHT TIME WAS THE WORST. THE NURSES AND AIDS WERE NEVER AROUND. I WENT LOOKING FOR THEM AND MY AID WAS ASLEEP IN A ROOM . MY NURSE JIMMY WAS NO WHERE TO BE FOUND. I MADE NICOLE DRINK SOUR MILK FROM THE BREAKFAST TRAY AND THEN AGAIN AFTER I COMPLAINED WE GOT ANOTHER SOUR CONTAINER. HERE I GO WRITE BACK LATER GTG
THERESA

[nicoles mom]

One Night She Was Having A Lot Of Pain Screaming And The Morphine Was Making Her Crazy. She Pulled Her Iv Out And The Blood Was All Over Looked Like The The Pint She Got The Night Before Was Lost. My Nurse Stacy Tried Three Times To Get Anew Vein Then She Called Jimmy I Let Him Try Three Times Before I Starter Screaming To Get Someone Who Knew What They Were Doing. This Took About 45 Min And No Pain Meds She Of Course She Was In Alot Pain. I Did Have A Few Good Nurse Too. But I Was Very Upset About The Whole Hospital.
Theresa