Handling daytime child care for newborn cancer patient

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP again - quitting our jobs is not an option and paying for a nanny is definitely where we are leaning. We make enough and have saved enough that we can handle the cost of a nanny for a year though it will be financially painful. Much less painful than pausing a career and potentially having trouble re-starting.

Home health could be an option - we have an LPN overnight that insurance pays for. However I don't think a nurse is really what we need because 90% of the baby's care is normal baby care stuff and we really want that part to be done right - just that feeding is very different and the caregiver needs to be conscious and comfortable with keeping her g tube and central line clean, monitoring the pulse ox machine, and using the CPAP mask.

Finally, the prognosis for the baby is very positive - once chemo is complete she is expected to be likely to develop normally. So we are really only looking at needing something for a year. This isn't a tragic terminal cancer situation (or at least it is not expected to be - obviously anything could happen to any of us!).

Sound like we should be offering $35-40 which seems like its getting pretty high since the LPN through the agency would be $45 and I'm sure the agency takes a significant chunk of that.

Looking at what you need (tube feeding, CPAP, etc. in addition to infant care and exercise/movement) one option may be to find a pediatric CNA. They do a lot of these types of tasks in care settings and also in settings like camps/day camps for disabled children.

Plus CNAs at Children's Hospitals and group care settings are WAY underpaid so this is a much better gig.

[Anonymous]

Nanny should be fine provided you find the right person... I mean you don’t have a nursing degree do you? But they’d have to be meticulous and loving

[Anonymous]

Look for a special needs nanny. Go through an agency (call every agency that serves your area!) and ask to see profiles solely for nannies experienced with infants, g-tube feeds, and keeping chemo lines clean. Nanny must either be experienced with pulse of and cpap or confident and willing to learn.

It’s highly likely that whoever you find will be a cna or nurse. But because they’re labeling themself as a nanny, their focus is going to be on interacting with the child, playing, and having fun, rather than treating it like a solely medical situation.

I have all the respect in the world for nurses. But most wouldn’t want to be stuck in the house with a baby al day. You need a nanny, someone who wants that type of job, but who has specialized experience.

[Anonymous]

I cannot imagine leaving my child who has cancer with anyone but mysrlf.!

[Anonymous]

Anonymous wrote:I cannot imagine leaving my child who has cancer with anyone but mysrlf.!

And good for you that you don’t have to.

[Anonymous]

Get a newborn care specialist. Seriously. Last year I cared for a very premature baby who had a gtube, I have had babies on apnea monitors etc.

[Anonymous]

Anonymous wrote:Thanks PP - any suggestions on how to find these folks? Care dot com and our neighborhood list serve obviously, anything else? Are there nursing bulletin boards or lists we should post on?

Care.com was the worst. One caregiver sent her bf to pick up my tween DD from an activity. She had never seen the man before and refused to go, but still!

[Anonymous]

OP here, we ended up finding a recent college grad on care dot com who has a history of working with kids with special needs and is planning to go to med school. She's getting ready to study for MCATs which will be a good way to use the downtime while the baby naps. So far is working even better than we expected. Her interest in and knowledge of medicine is very helpful for her to understand all the complexity of the cancer treatment and how it affects everything else in the baby's life (which it does, and is super complicated) and communicate well with us and the many docs and other practitioners involved. We're paying $30 an hour (legally with taxes and workers comp etc) with a $6k bonus at the end of the year when baby should be done with chemo and we should be moving on with our lives. Just wanted to post a follow up in case other parents in our situation are searching for something similar.

[Anonymous]

So glad you found good care and bay is going well.

[Anonymous]

Anonymous wrote:Get a newborn care specialist. Seriously. Last year I cared for a very premature baby who had a gtube, I have had babies on apnea monitors etc.

But most NCS won’t stay for 1-2 years, and that’s ultimately what OP needs.

[Anonymous]

Anonymous wrote:OP here, we ended up finding a recent college grad on care dot com who has a history of working with kids with special needs and is planning to go to med school. She's getting ready to study for MCATs which will be a good way to use the downtime while the baby naps. So far is working even better than we expected. Her interest in and knowledge of medicine is very helpful for her to understand all the complexity of the cancer treatment and how it affects everything else in the baby's life (which it does, and is super complicated) and communicate well with us and the many docs and other practitioners involved. We're paying $30 an hour (legally with taxes and workers comp etc) with a $6k bonus at the end of the year when baby should be done with chemo and we should be moving on with our lives. Just wanted to post a follow up in case other parents in our situation are searching for something similar.

Sounds perfect for the medical side. Are you planning on group care or home care after chemo and MCATs are done?

[Anonymous]

Find an LPN who looking to make some cash.

[Anonymous]

This is one of the most interesting threads I have read on DCUM. I hope the OP follows thru with some updates as it can really help future families in similar situations.

[Anonymous]

Anonymous wrote:I cannot imagine leaving my child who has cancer with anyone but mysrlf.!

As the parent of a child with a life threatening medical issue, I have done all sort of things that I couldn’t have imagined doing because they are best for my child and his siblings. I am very glad that you have not faced those choices.


OP, I was going to suggest something like what you found, a recent college grad who is eager to learn. I have found that the young adults in our family have been the fastest to pick up the technology.

Good luck, I will be keeping your little one in my thoughts.

[Anonymous]

Anonymous wrote:I cannot imagine leaving my child who has cancer with anyone but mysrlf.!

then count your blessings, and be supportive of the OP who is going through a very hard time.