hello just wanted to introduce myself

[arielle]

my name is arielle and my boys both have a trach, they will be two years old on the first of july. they are ex 26 week preemies and have come very far. for the past two years they have mainly been in the hospital. i attempted to take them home a few times but they never stood more than a week at home without going back to the hospital and back on the vent. they both use oxygen and are finally home, today makes two weeks. its extremely stressful and nursing is horrible. i really want to go to school and i need a good day nurse for this to be possible. the nurse i have now seems to suffer from short term memory loss because she has not retained one bit of information that i have taught her. plus she says she works on a vent unit in the hospital yet she had no idea what a nebulizer treatment was. i just find it so sad and scary that we have to be trained before we take a children home< and i have two trached children and the nursing agency seems to think its okay to send someone with pretty much no experience. sorry im just very frustrated and i know this is probably one of the best places to come for support

[bryantem]

Hmm, your name looks familiar. I think I met you on another website awhile back. My name is Beth and my former trached baby was just decannulated in April. She is a former 28 weeker who will be 2 in October. She was trached for tracheomalacia, which is still there, just not severe enough to need the trach.

[jamie]

Arielle I am so sorry you have trouble with your nurses. My son is older and we have no nurse, but we do have a vent and I had to learn it all myself too. It does get easier, but I see your circumstances are much harder so I really hope you get good nurses soon.

[landzsmum]

Hi Arielle,
I know exactly how you feel and I only have one trached twin. Your profile lists new york. Are you in the city? We came home with a horrible nursing agency but have since switched to one with experienced nurses. Feel free to pm me.
Jamie is right, it does get easier. But I know how scary and stressful those first few weeks/months are at home.
-Andrea

[ericnrosesmom]

Hi, I'm Jen. My son Eric was trached due to frequent aspiration pneumonia and chronic lung problems. He was decanned this past April at age 3 1/2. Do you only have one nurse for both boys? One of our nurses had another casw where there trached, vented twins, and each had their own nurse. Not sure but I think it was agency policy.

[RylanDakota]

Hi, I'm Stephanie. I also have one trached twin. We just came home Tuesday and have had 2 call outs all ready out of the our 9 shifts. I am quite upset about it and our nurses are horrible and have no idea whats going on.

[Alethia]

Hi I'm Kate and I have a son with a trach and vent who is nearly 6 years old. We live in the UK so the system is very different. His carers are all provided by our children's hospital, and they are all specifically hired and trained to work with children with trachies and vents. I still have to show them how I prefer certain things to be done, and Angus' individual quirks, but their knowledge base is sound and they get re-trained and checked annually. On the whole I am very pleased with the service we get and consider us very fortunate to have a National Health Service.

[alizesmom]

Welcome Arielle. Nursing can often be the bane of our lives. You do have the right to tell your agency that the current nurse is not working out and ask for a replacement. You can also look into other agencies if you wish. As time goes on you will find yourself more comfortable with the equipment, the care and even the nursing. I hope you will be able to attain your goal of going to school in the near future. Karen

[twintotwin]

Hi Arielle- You're going to need to use more than one agency for your needs. I use 3 agencies to cover the hours I need for my boys.
I certainly don't want to be a bubble burster- but I'm not sure you'll be able to go to school anytime soon...unless you have an absolute reliable family member or 2 that will be there around the clock.
I haven't been able to do anything "extra-curricular" for 7.5 years so far...

Hang in there, it gets easier. But certainly not easy!

[Jordansmommy]

Hang in there...we have gone through many nurses...eventually you will find the right one to care for your twins! Just because they are nurses doesnt mean they know what they should! Its pretty said when us the parents have to show the nurses how to do things you would assume they should know how to do! We had a nurse who had her BSN which is above an RN and she had NO idea how to turn on the oxygen tank! Its pretty ridiculous! Just keep searching for nurses go through different agencies...if you dont like someone right off the bat dont hire them! Its overwhelming but go with your gut and if you have to go through 500 nurses until you find the right one then do it! The right one will come along! My son is one and we just found a really good reliable day and night nurse so keep your chin up and keep looking! Good luck and I wish you and your twins the best!

[rosi's mom]

Hi! I have a trached surviving twin. It was really hard finding good nurses at first. But once we got them we didn't let them go. Keep searching. Don't keep a nurse who can't do the job. Ask the agency for someone else. You shouldn't have to keep reminding them how to do their job.
Since you are in NY, if you aren't in the city and might possibly be in the area between Buffalo and Rochester or south of there pm me if you want. I have two really good nurses who are losing their jobs in August. (The trach is coming out.) I know it's a two month wait, but they are really good and I hate to see them go without jobs. Of course, we do things differently and I don't know if your county has family directed nursing, but most of the counties in our area do. Most people don't know about it. I know a couple other nurses in the area who do part time work who are very good too. They have worked with Rosi for a year. She has a trach still, but has been off the vent and oxygen for awhile now, but they know how to deal with that stuff and do the breathing treatments since Rosi gets them regularly. Our nurses are really good at doing her therapies and everything.

[arielle]

wow thank you for all your responses. im glad to meet all of you and im so impressed to see there are a bunch of other mothers who understand what its like. it can be so lonely. its very hard because its only me and my husband who are trained. no one is my family is reliable or willing to learn. we might have possible decans next spring if the boys make it through the winter without the getting desperately sick as they usually do. they were living in a nursing home and in January there was an outbreak of a virus and both my boys spent 8 weeks paralyzed, sedated, and on an oscillator. i almost lost both of them, but they are back to normal and kicking butt! i thought i was the only one with trached twins..im so glad to see another mommy with two> its so demanding. these kids take every waking moment of my day. i know i probably wont go to school its looking more and more bleak. im in the process of changing agencies. so we will see what happenes. thank you all for your replies ..im so happy i found this site!!

[JWorthington]

Hi Arielle and welcome. we live in the uk too and have always had trained staff provided by the National Health Service, the training for them is pretty thorough and I have never had any concerns about leaving Sam with them. sorry you're having such an awful time of it at the moment, but things do get easier with time. glad you found us for support x

[maleeksmom]

Hi there

Just wanted to offer some words of encouragement! My son was trached at 6 weeks and is now almost 2. He was born in Japan and, because of medical issues etc., we are still living here (I am actually Canadian). For us, the first months were the hardest but I can really tell you that it does get better and so much easier. We have never had nursing care so when my son first came home from hospital at 2.5 months old I basically didn't even have time to get to the bathroon most of the time because of the constant suction. Now he is playing away while I type this so things are really really different!!

We have faced a LOT of cultural and language barriers and have worked out a system where my husband and I both work 3.5 days a week. I am still managing to learn Japanese and sign language but it definitely has taken a lot of patience and time for things to settle down and become a lot more manageable. Just take it easy at first-you have a lot on your plate-and know that as things get easier you will slowly be able to integrate some of your goals. It might not happen as quickly as you would like but it will all come together!!

One thing I have learned going through all of this in a very different culture and using another language is that if you keep an open mind, stay flexible and just don't give up trying to get what you need and want (good nursing care etc.) that things will get easier!!

take care and remember the things you are learning now everyday are worth 10 years in any university!!!

[Livi's_mama]

Welcome.

See my siggy for info on me. :) :)

[madelyn and rynns mom]

Welcome to the boards! I am the mom of one trached twin as well. Former 26 weekers, both of whom have numerous medical issues. I have been doing this for almost 9 years now and I can honestly say that it doesn't get easier, but it DOES get to be a routine. After a while, it becomes your normal, and then it seems much easier! :)


Kris:)

[Kamilah's Mommy]

Welcome! I know what you mean about not having reliable nurses. I have nurses that had seemed great until we had an actual emergency, they were a huge disappointment.
Me too, I've been wanting to go back to school but with a trached baby and not trusting our nurses 100% to take care of her, I don't think I'll be able to go back anytime soon either. It frustrates me because I'm only FOUR classes away from getting my degree! Oh well.
Anyways, welcome again...

[Ainsley's Mom]

I'm sorry to hear that it's been such a struggle to get your boys home and now that they're home and you'd like to be celebrating you are instead struggling to find qualified nurses. It shouldn't be like that should it?! :hug:

[Madeline and Molly's Mom]

she had NO idea how to turn on the oxygen tank! Its pretty ridiculous!

We had the same thing happen to us! It's great to meet you Arielle. I have twins, one with nasal cannula and continuous GJ feeds... the other trached and continuous GJ feeds (who just came home today after 17 months in the hospital!) I hope we can be a good resource for each other as goodness knows, no one in my circle of friends or family could understand what we're going through!

We've had nursing for about 3 weeks (finally got some for the non-trached daughter) and we've had many no-shows, cancellations, quitters, me firing people... and now we've decided to work with a number of difference agencies to hopefully avoid the craziness.

My husband spoke with the director of CCM (the service that administers nursing hours here in MA) and she said "oh, the nursing should be the easiest part." Clearly she has never had a kid who's needed nursing. :)

Best of luck and PM me any time!

[Baby1107]

As someone mentioned nursing can be the bane of our existence. While I am so thankful for what we DO have, it is a huge drain for me to juggle it all. Boy oh boy the stories I could tell you. Recently I had to fire and report a nurse that gave a med overdose -- what a PITA! So I feel you!

Oh and welcome.

[Caty]

Welcome! I hope things smooth out for you all soon. :hug: