Bringing Baby Home with a Trache

[MyLuvAidyJosh]

I would like some suggestions in bringing my baby home. I was informed by my neonatologist that I can bring my son home providing I learn the care at the hospital and I feel comfortable and confident to take care of him home but she would like for me to let him go to a transitional place because they have the hands on treatment there for him and I will learn more at the facility. My problem is that if I am entitled to home care and I am learning the skills now since the procedure was on 7/29 and 8/5 made it a week after the procedure why do I haver to decide now. The day nurse staff are giving me a rough time and are making me feel very uncomfortable with caring for him there which I did my first suctioning on 8/5 and gave him a bath last night. I want my son home and I have a lot of support from my family that lives in my house. Why make the decision now? I want him home and I am very willing in learning the proper care to take care of him and the learning will continue when he gets home with the nurse I will be getting. What was done for your child/baby to come home with a trache? Am I wrong for wanting him to come home? I don't have this issues with the evening nurse staff who have been very helpful to me in understanding why the trache was inmportant before I decided to go along with the procedure, who have been very understanding of my needs and answers my questions and explained things to me much better. And the end result is that no one knows when the trache will be changed since it's determined by the ENT specialist. Please advise.

[kadiera]

It might be helpful to set up a meeting with your son's doctors, the hospital social worker, and so on, and come up with a plan. It's not likely that you can "just go home" - nursing has to be organized, supplies delivered, the insurance has to be worked out....

Maybe your hospital doesn't send trach kids home very often, and they're hoping to send you to the transitional place so they don't have to figure it all out?

When it was finally decided that Alexander was well enough to come home, there was about a 6 week period needed to line everything up (he's vent dependent, so it was complicated). We had to be able to suction, change trachs, have CPR (again) - basically, they had to be confident that we could do anything they did for him in the hospital. Granted, he'd been there long enough that we were well versed in his care several months before he came home, but even so, they had a checklist, and the nurses were checking off that we had been educated.

[lynn]

Is there a trach RT at your hosp? that is who did all of our training on suctioning/tie changes/trach changes/cpr-- he had to sign off on everything before we were able to be discharged. (two people had to be certified- myself and DH but it could have been anyone who would help w/care)You will find that alot of the home care nurses do not have alot of knowledge on trach care, and you will be training them on what needs to be done. Our son had his trach placed for a week (7days)before ENT changed it for the first time. we were not allowed to do any trach care until this first change was done. But the day after that change, we were taught how to do all of the care/changes ourselves- and had our RT sign off for discharge within a week. (still stayed inpatient for another 2 mos- but that is a diff story.:() I would be pushing ent to decide when they were going to do the first change, and find out who will train you in the trach care- perhaps there is no one in charge of this in your hosp and that is why they want to send you to transition care- we never made it to the transition facility because we had a vent, and they would onlhy take one vent kid at a time- but with alot of pushing we got all the training we needed by the hospital. Good luck, hope you can get some answers, and get the teaching you need to bring your son home.

[llwilliams8]

We were sent from the NICU at a Chidlren's hospital to a training hospital for trachs for our daughter before we came home. I think this was the best thing we could of ever done. Our daughter though is on a vent 24/7 so we had to learn about transporting her and take vent classes. I felt so confident by the time we left that I ended up being thankful for being not rushing home so soon. We were done training in 2 weeks but the nursing and DME set up took over a month so we were in our training hospital for about 6 weeks. We are 6 hours away from all of our daughter's drs so having the extensive training we crucial for us.

[bryantem]

We did our trach training at the NICU. We were each required to suction her at least 8 times, change her ties and do cares a number of times and change out the trach 3 times each. RT were the ones who taught us how to care for the trach. I have learned that most nurses are not familiar nor comfortable with taking care of kids with trachs. Even now, if she is admitted or in the hospital for a procedure, I find myself caring for her trach needs more than the nurses. They don't want to touch it with a 10 foot pole. I would talk to the Drs and find out exactly what the hospital's policy is on training on the trach. If there is an issue with anything, I have found the hospital's social worker to be a great resource for dealing with issues. I know here, they will sometimes send a child with a trach and vent to a facility until they can get the settings and everything correct. I have also experienced that having a trach does not nessesarily guarantee home nursing care. We went home with what I thought to be home care, but ended up being a visiting nurse that came once a day to weigh her. It was pretty overwhelming for the first few weeks.

[alizesmom]

As much as you want your little guy home, take it one step at a time. As mentioned before get set up with lessons, get the social worker involved to make sure you have everything at home you need. Ask the staff to let you do as much care as possible and do it 24/7 if possible (with time off for sleep of course). Good luck. Karen

[Baby1107]

Maybe I am the lone maverick, but we did hands on stuff in the hospital and then we went home fairly quickly. We had NO nursing care set up (not covered by Ins), but they did set up the machines & HHC supplies before we left.

However, my mother was rooming in with Austin every day and I was there after work every day and on the weekends to do his care. We both took CPR and were required to do 3 solo trach changes each before we could leave. So it looked something like this: Trach surgery Friday, 1st Trach change 5 days later on Wed AM done by the ENT, moved to step down RT unit on Wed PM, G-tube Surgery on Friday, Home the following Wed. -- two surgeries, recovery and discharge in 12 days.

It can be done IF you are confident and COMPLETELY trained. I found the RT floor nurses wanted to DRAG it out, but I convinced them that I was not waiting 6 weeks (3 solo changes each - one week apart), that was ridiculous. So we did the changes 1-2 days in a row and then they saw we meant business.

All that being said my brother had a trach for many years so both my mom & I were not new to Trachs and I think this may have helped us. They commented A LOT about how other parents were afraid to suction or do tie changes or ANYTHING related to the Trach care.

If you mean business just show them how confident and WILLING you are to learn. Don't rush yourself, because it is difficult when you get home & you won't have anyone to ask questions of. Take advantage of them now and ASK ASK ASK away.

You can do it Mama!!!

[Eric]

I understand your desire for your baby to come home but a transitional place may not be bad prior to your child eventually coming home. (By any chance would this place be Blythedale Children's Hospital in Valhalla?)

You may be fustrated that the NICU is pressuring you to decide but if you do choose to go to a transitional place a bed may not be immediately available and you may have to wait on a waiting list thus the urgency to start the process as soon as possible. Also from my personal experience the NICU isn't always the best place to learn for various reasons such as nurses with limited experience with trachs, if the NICU is really busy, etc.

You may be entitled to home care but please keep in mind that there will be occassions that your nurse may not show up for a shift for various reasons. Also do not assume that the nurse you will get will be very familiar with trachs. On occassions I had to teach the nurse that was assigned for my son on trach care.

Some may disagree with me but I feel that the home should not be a place where you learn to take care of a child with a trach. The parents/family should be familiar and comfortable about not only basic trach care but also on how potential emergencies should be handled prior to a child coming home.

[Madeline and Molly's Mom]

We're still toying with the idea of sending our Maddy to a transitional place, but I think as she is still vent dependent, it may be the best decision for us anyway... Id rather be too prepared int his case than rush it and have something happen. Just my two cents.

[bryantem]

I agree about home not being the best place to learn how to manage a trach. Even with a lot of training, I was still very nervous bringing Addisyn home, and for the first time, she was our baby and our responsibility. While I was at the hospital, I did everything that they would let me do. I did suctioning, trach changes, tie changes, trach care. The nurses and the RT's would allow me to do it on my own and they would back me up with any help I needed. Granted, you are always going to be learning and figuring out new things, but when your little one gets home, you are the repsonsible party and often have to train your nurses.

[Andiesurprise]

Home is definately an adjustment. It does take a lot of work and scheduleling to keep a trach child at home and healthy. We were extremely comfortable taking care of Andie in the hospital we had 16 1/2 months to get "good" at it. I did all of Andie's care while I was there. We made sure that the nurses and RTS knew we wanted their assistance for learning but then we wanted to do things as much our way as possible so that it would be a routine for home. We handled all of the trach changes and ties everyday. I really feel it is important that the nurses and RTS know that this is your child and you are responsible to make sure you are capable of handling the crazy situations that are thrown at you at home alone. You need help and experience to make that happen. But it will become second nature and the children continue to gain strength. I agree that you should feel very confident before you go home. We were promised a nurse who had lots of trach care. When she got here she had never used a bagger or suctioned before. So everyone has there own ideas. Good luck!