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We adopted a very medically complex preschooler from foster care that had spent their entire life in a hospital, either in a medical crib or wheel chair. We had custody of child for 1 year until finalized, during that year we poured ourselves into our child & childs medical, I have been physically attached to child 24/7 for 2 years now. Our child overcame everything caseworker & Drs said would never happen. We were told child would never be off ventilator, never swallow or eat, never talk, never walk, our child overcame all!
After a year, our child had an unexpected health issue come up & had surgery to correct, but due to the issue childs never been able to walk again & we are starting to transition child back into wheel chair, it is very sad for our family that a medical issue has taken that ability away from our child, after everything we went through to help our child walk.
We have searched out resources, but its very difficult to find help because our child has a TRACH & anyone caring for child has to be trach trained. Our child also gets plugs during the day & I have to suction & do emergency trach changes & ambu bag resuscitation to get my child to start breathing again. Every time our child goes to see a Dr or hospital our child completely regresses back & we have to start all over with everything our child has learned. There have been times our child has plugged up every dsay for a week, & every other day for a month after visiting the hospital. Our child goes fast, changes colors, blue, gray, closes eyes & I have to ambu bag our child to get child back, I cant express what that does to watch your child go thru that, what it puts our whole family thru.
Nursing.. We get little sleep due to suctioning our childs trach during the night so oxygen doesn't drop. We tried overnight nurses but they all came smelling of cigarette smoke & most didn't know how to monitor oxygen stats or change pulse ox probe. We went thru 2 different agencies in our area, both sent smokers, we dont smoke or allow smoking in our home & our child was new off of a vent & not allowed around smoke, neither could find overnight nurses that didnt smoke! The first agency would not even give us a new nurse, they begged us to continue using the one that smelled of cigarette smoke. We switched agencies, they sent us a smoker, then sent us another nurse sick with the flu, the second nurse didn't even have her physical and tb test results turned in to the agency!
We have used care.com, we hired a woman to stay in our childs room overnight to suction her 3x's a week so we could get a nights sleep, she quit after 2 weeks because it was too much for her...
Respite Care.. We have been unable to find anyone trust worthy to do respite care for us, no one with trach training. We found one family that claims they do respite & adoption, they had over 10 special needs children & teens in their home. We spoke with them about respite, they agreed, but were very pushy about wanting our child immediately, & painting & redecorating a room for our child, made us very uncomfortable...
It is easy for people to say we knew what we were getting into, but when the adoption finalized all of the support disappeared. I was hit with some unexpected health issues & depression, to the point that I thought it might be in the best interest of child to place child up for adoption as I feared I would not be able to care for childs health. I spoke with caseworker, in hopes of finding support of some sort, instead caseworker threatened to open a case on us for neglect & threatened to take our healthy biological child also into care. The only neglect that took place was that of us parents placing our children's health & well being before our own! We did NOT go thru with placing our child up for adoption, we could not take the pain of never seeing our child again. Close family & friends told us we would never find anyone to care for our child the way we have.
Caseworker did know a large amount of what our family was going thru, even after adoption finalized we remained in contact weekly, caseworker had become family, or so I thought. Also caseworker was considering adopting our child before we came into the picture, so I thought caseworker might want to adopt or work with us with respite care.
I felt betrayed by caseworker after everything we had been thru, how dare anyone accuse us of neglect, when it has been the complete opposite! If we had support & sleep, I don't think we would have had any of these issues come up. I felt like everyone turned their backs on us when we needed them the most!
This has NOTHING to do with finances, the support we lost was not financial. I want to clarify we are NOT placing our child up for adoption. I feel there should be more support for adoptive families, especially with special needs children... I am just wondering how many other families have gone thru this. Are there any families on CM?
*Someone asked for me to repost instead of keep editing!
**I dare any of you to search out resources and care for a medically complex child with a trach! Try having a medically complex child attached to you 24/7 for 2 years straight and see how well you feel, try it with your healthy child, I'm sure it will still take a toll on you and your marriage!
***I am looking for families that have been in similar situations...
Asked by Anonymous at 11:56 AM on Nov. 7, 2012 in Adoption
Answer by Mrs_Prissy at 12:06 PM on Nov. 7, 2012
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Answer by Dardenella at 1:09 PM on Nov. 7, 2012
Answer by LostSoul88 at 1:11 PM on Nov. 7, 2012
Here is your responses to yesterday's question
Answer by DJDNY at 12:20 PM on Nov. 7, 2012