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