My husband and I adopted a little girl with Spina Bifida 2 years ago. It has been a very stressful 2 years! How do you Mom's deal with the stress??? Our daughter spent her first 4 years in a hospital, due to her health and being a foster child... She was on a ventilator, never talked, never swallowed or ate by mouth, never walked. We were told she never would do any of these things. Since having her, she was weaned off of her vent, swallows, eats some by mouth, walks with a walker and talks, a lot!
I have so much stress dealing with her medical supply companies, her speciallists and caring for her every day, urine cathing her and g tube feeding her. On top of every day care, every time she goes back to the hospital for care, she completely regresses back, and we have to start all over again with everything. She CONSTANTLY grinds her teeth, CONSTANTLY, nothing we can do because she still has baby teeth! She also gets plugs in her trach often, requiring emergency trach change and ambu bag to get her back, she goes fast. We also have had issues with having her trach removed, the hospital messed up the last attempt! This past regression has been the worse so far...
We also have another child that is 8 years old, whom I feel is neglected because I spend so much time on the phone with specialists and caring for our daughter...
We had in home overnight nursing in the beginning, but 2 nurses smoked and one came to work with the flu, we had them for a 3 month span, only working 2 weeks between all 3!
I hired a college student to stay overnight to suction our daughters trach when needed so we can get a full nights sleep, but she up and quit with out notice.
The 2 years we have had our daughter, she has been attached 24/7 to me, my husband and I are the only ones trained for her her trach plugs, and I don't think anyone else could handle it, I just can't seem to get any help! I have health issues coming up that I know is due to all of the stress in my life, high blood pressure on top of others.... I don't have any help or anywhere to turn to, I don't know how much longer I can continue this way and what to do to get help with my daughter... How do you Mom's do it???