Parent of a new child with a new trach's home care questions

[gracia1]

Hello. I'm sorry if this is not an acceptable post. I did some searching on this subreddit and couldn't find any answers. The community's wiki post that seems like it may have covered these questions in the past is no longer available and/or is set to be visible by moderators only.

My son was born a couple of months ago and was in the NICU at his birth hospital for about a month. When he was discharged, he was sent home with oxygen and an NG tube for feeding. He was home and happy for about three weeks and then had an episode where he stopped breathing and needed CPR. My fiancée and I both took steps to be trained in CPR prior to coming home, thankfully, and we were able to get him to come back before the ambulance arrived. As a result of this episode, he was placed back in the NICU at another hospital and has remained there for a month so far with what could be at least another month or two to go. Last week, he had a trach inserted and is currently working through recovery and is sedated. We don't yet have an indication of whether he'll need to come home on a ventilator or not as well.

While the care that goes into taking care of a trach and potentially a ventilator is intimidating, it isn't overwhelming for my fiancée and me. What will be overwhelming though is trying to determine how to avoid uprooting our life due to financial troubles. Neither of us has enough of an income to support our family of four and keep our house on our own and finding a job that would provide enough income seems extremely unlikely. Originally, we thought that we may be able to utilize private duty nursing since it is covered by our private insurance and should be covered under Medicaid as well since our son qualifies as a "complex" case. Our expectation of what this would have looked like is that the private duty nursing coverage would allow for a nurse to come to our home to care for our son while my fiancée and I work from home. We would be present should an emergency happen, but the nurse would be there to enable us to focus on our work day and therefore keep our incomes and our house with them. After reviewing the policy documents, though, it sounds to me like private duty nursing is a temporary assistance that is provided to help transition to home life and that it is not intended to be anything but a short-term option. If this is the case, it puts us back into a position of not being able to afford our home.

Are there any other families who have gone through a similar situation? Are you willing to share your experience or any advice?

Thank you.

 

[ait]

@gracia1 Hi there! My son was born at 27 weeks and came home with a trach and a vent in July of 2022. We live in Illinois and have our insurance pay for 24/7 home health nursing (we have an excellent plan through blue cross blue shield) One of us works from home and the other at an office so we do have someone to help the nurse if there is an emergency

Every insurance policy is different but what worked for us was having the case manager at the hospital reach out to insurance and home health agencies in your area. They typically do this a month or so before discharge to get the ball rolling and find nurses for your child.

We decided to go with one home health agency who entered into an agreement with our insurance so the agency would get more money for nursing salaries. Our insurance reviews his case every 6 months and approve us for 24/7 again. My understanding is once he is more medically stable, those hours will be trimmed down and then Medicaid hours can fill the gaps but the nursing salary will fall.

Another resource is through our state, a program called DSCC who paid for a whole house generator.

I would recommend starting with the NICU case manager and social worker to ask how does this process work where you are and have them guide you through his process.

Feel free to DM me with any other questions. I typically lurk but can't resist to help another trach family out

 

[gracia1]

@ait Thank you for sharing! Our case manager stopped by last week and told us about how to handle Medicaid(or more specifically, not to do anything and just let her take care of it). That's reassuring to hear that nursing was able to help out so much in your scenario. We're your neighbor to the east and have BCBS of MI so that makes me hopeful that we may have a similar option available to us. I'll definitely chat more with the case manager to see if we can get some more info. We may just need to wait until we're getting closer to discharge.

 

[ait]

@gracia1 Hi neighbor! I agree with your case manager about Medicaid. You might get letters in the mail with ridiculous things like approval for 60 hour per week or whatever of home health nursing. Ignore those until you talk more with the case manager and the home health agency. They will help navigate insurance.
What you can do in the meantime is look at your BCBS plan to see what home health coverage it offers. A lot of them use a point system (more points = more hours) and a child coming home with a trach and a vent gets a lot of points. If the home health coverage isn't great, or non-existent on your current plan, see if you can switch to a plan with excellent home health coverage. Private insurance paying for home health means more money in the nurses pocket and it's much easier to recruit nurses.
Also for recruitment, if you're cool with it, the home health company can show pics of your cutie to prospective nurses so get some good pictures

I would also recommend seeing if your hospital has an outpatient complex care clinic. Ours dose, and basically a primary care doctor organizes all the subspecialists appointments for you. It makes life much easier.

Let me know if you have any other questions. Taking home a kiddo with a lot of health needs can be intimidating but knowing who to lean on and ask questions makes the world of a difference

 

[scourge]

@gracia1 I don’t have any advice, just sending you all love and hopefully my comment bumps your post for someone with actual advice can respond.

 

[tyronasmith]

@gracia1 As /@ait mentioned, the hospitals can be a huge help as you navigate this space. Their NICU care coordinator, case management, and also social workers can be a huge ally. You can also reach out to your insurance - but just know they are frequently assholes about this and don't let that dissuade you.

For our family, we had nursing provided through insurance and then also had supplemental Medicaid. I hope that can be a reality for you as well.

As an aside, my daughter was born very premature and trached/g-tub reliant. I commend you for your incredible CPR and saving of your child and your bravery going forward. If you ever need anything, please do not hesitate to message or chat - I am happy to talk through anything for this process. It can be daunting... but you got it!

 

[paperboat]

@gracia1 Hi! Parent of a trach baby! I’m in CO, so your state laws may be different but in our scenario, our home agency reviewed our son’s medical care and determined how many hours he qualified for private nursing. With a trach baby, he qualifies for 24/7 care and that is for the longterm or until he no longer needs a trach.

Medicaid will pay for private nursing as long as you need and as long as he qualifies for. Your insurance policy documents may state that you only get 60 or 180 days of private nursing care, but once those are filled up, then Medicare takes over.

Each state is different but I don’t think you need to worry about short term care. If your baby needs 24/7 private nursing and there are nurses available, you will get it. It’s literally cheaper for the state than having them in the hospital!

Also it’s different in every state but check to see if you can get paid to be your child’s caregiver. In CO, you can be paid to be a caregiver (I think I was offered a salary of $78k for the year). In our case, it actual made more financial sense for me to keep my job and hire a medical nanny for our twins, but I know a lot of parents who are using that program to be able to quit their jobs and take care of their kids full time!