question 'bout trach and home nurse???

Terri - posted on 08/16/2009

My granddaughter dose not have the trach yet (thank god) which is something my daughter has been tyring her hardest to prevent, but she dose have the nursing. If it was not for the nursing i don't know how my daughter would have gotten by they have helped so much with the oldest granddaughter. It gives her the time to spend with her 2 other daughters and now with a son on the way it gonna be crazier then what it already is.

Karan - posted on 08/09/2009

Hi Stephanie, I'm glad your daughter is soing fine. My daughter didn't get her trach until she was 4 1/2 years old. She has been severly disabled since birth. Her trach scareed me to death. I was so scared to bring her home. But it's not to bad once I did it. I had a case worker from the hospital set up things to bring her home. They found the nursing agency for me. I only have a nurse so I can go to work. I didn't want someone in my home all the time. As far as anything special to do when you come home is have everything at arms reach. My daughters room is set up like her room in the hospital. You just want everything ready for an emergency just in case you need it. But I put her supplies in fun containers so it doesn't look so much like a hospital. Good luck!

Wendy - posted on 08/08/2009

hello i am a home care peds nurse. i have 10 yrs. with this specialty, its doubt full you will get a 24 hr nurse but you need to get a perscription from your pediatrician the social services should have had things set up before your baby came home. they could still help you. if you need further assistance call your local services for mentally and phisically handicapped. it is also quite an adjustment to have strangers in your home, make sure you remain the boss,if you dont like the nurse thats there its your right to say so they work for you and the parent ALWAYS has the last word.

Kimberly - posted on 08/07/2009

Also having nursing is very weird because you have strangers in your home all the time but once you start getting some that stick around you get comfortable. One of my day nurses has been with my son since he first came home and makes me feel comfortable enough to get out of the house to do things I need to do and go to school.

Kimberly - posted on 08/07/2009

I strongly encourage you to learn as much as you can about taking care of the trach and what to do in case of emergency situations. My son has a trach and has had it for about 2.5 years now, since he was born basically. I have home health nurses that have come to my house and freeze up when the trach came out. A lot of them don't realize he needs to be suctioned because his secretions don't sound loud all the time. There are a lot of things as a mom that you can pick up on about your child that they don't and as you realize those things communicate to them what it is so some of the nurses that come more often will know. This allows them to learn and know how your child is. I hope this helps.

Tanisha - posted on 08/04/2009

didnt care for nursing. My husband and I and a select few family members cared for him. He's doing well it has been a long scary journey. God willing we have many more years!!!

Tanisha - posted on 08/04/2009

My son received a trach at 11 days old he had it for 6 1/2 years. He was sick with a staph and mrsa alot. It got to the point he could only take bactrim when he got sick. He is doing much better know that its gone. Keep it clean dont reuse suction cathiters change out trach once a week. Push for your insurence to get all supplies you need for her. You dont want her to reuse even if you sanitize with half water and peroxiode or vinager it's safer to put a fresh one in. mira is scary. it makes sucrctions think and mucasy. remember you have to be the sqeecky wheel! Someone once told me that! no ones going to advacate like you so do neverything you can and dont stop at one doctor find the right one for her.

Dawn - posted on 08/03/2009

hi, my baby came home this april with a trach,and a vent,he was in the hospital for 13 months,it was a little overwhelming at first because i had to learn so much so fast but do as much care as you can while you are still a the hospital because the nurses will call off ,one of my midnight nurses called off the second week we were home,make sure you have a few family members trained as well for back up,im not nervous any more it's second nature

Stephanie - posted on 08/03/2009

Thank you guys so much, Im still very much nervous, but also very much ecxited to have my daughter home after 15mths in the hospital. Maybe im just so used to the hospital staff, i wish i could take a few of them home with me:)

Marne - posted on 08/01/2009

Hi, I've dealt with this from the other endmany moons ago, now, I was a home care nurse. I didn't do many pediatric cases but I can tell you that I took most of my cues from my families. Some families knew I needed to be there but really didn't want me 'intruding' in thier lives. I would care for my patient and then stay out of the way as much as possible in those cases. Others really needed support and input and I was ready and willing to give it in those cases. I have several good friends that I made when doing this work but have never expected that of my clients. A welcome and then going on with your life the way you always do, asking for help when you need it would be the best way to handle things. They are there to assist with the more technical aspects of your daughters care and you shouldn't feel that they are monitoring what you are doing. As for the trach, keep it clean and dry and try to make sure she doesn't pull at it. You're nurse should make sure you are completely comfortable with how to care for it. Ask. She/he will show you how :-) good luck and enjoy having your little one home!

Yolanda - posted on 07/31/2009

Alex was in an automobile accident and has spinal cord injury as a result. He has had his trach and has been ventilator dependent since the age of 6, he will be 12 next week. Before Alex could come home, my husband and I had to take care of him for 48hrs staight. To prove we were able to take care of him. I am glad they made us do that because that way I could see and tell the nurse THAT IS NOT HOW YOU DO IT.
I'm not traying to scare you but the fact of the matter is that nurses don't know everything but if you know how to take care of your child you can tell if they know what they are doing. I will keep baby Chloe in my prayers

Brooke - posted on 07/31/2009

Mostly with the trach...KEEP CLEAN! You DONT want a trach infection. Although with it being open you're always going to have bacteria.

I had hand sanatizer near my daughters bed...in every bathroom and near every sink.

We also used gloves, even for the simple things like suctioning...

NURSES- I had nurses 18hrs a day..It's a little strange having someone in your house all the time...but, you'll need the rest and help. We did have a lot of call offs, but if a nurse calls off a lot just call the company and tell them you want someone else.

If they dont call off, then they more than likely can't find someone to cover that shift.

You'll probably feel as though you're not doing anything...because they do a lot...but dont feel that way...it's hard work

You CAN'T watch them 24/7, but really make sure you KNOW what they're doing...i kept a binder and wrote notes about how the day was from every shift...so instead of me having to read all there paperwork...i'd look in the notebook and see waht they wrote.The only problem i had with nurses....I had a nurse put the wrong trach in during a trach change. Novalee needed a NEO. trach and the nurse put a PED. trach in.

I've also had a nurse give my daughter to much medication.

I ONLY found that out, because of the notebook we wrote it...the nurse wrote when she gave her medication and how many times she suctioned her...and when i seen she suctioned her a lot i look at her medication level and found out she was overdosed...

People make mistakes, but this is your childs life...Your fighting for it...so be strict...

Stephanie - posted on 07/31/2009

Thank You, Yolanda. Im just so nervous. I take care of her when Im there, like feeding, changing, but I always have her nurses as my back ups when I needed it. How old is your child? How long have they had the trach? Chloe is 14mths old she has Pulmonary Hypertention.

Yolanda - posted on 07/30/2009

Well,as far as the trach is concerned just make sure you keep it clean around the stoma. learn how to suction suction your baby before you leave the hospital if that is what your baby requires. I would learn as much as I can regarding my babys needs while I in the hospital because even though thay tell you you are going to get 24 hr nursing, there is always that one day the nurse calls in and the agency might not have a replacement. Now as far as having a stranger in your house, Is something you have to get use to. It is incovinient but at the same time if they are a good nurse they could be a life savor.