nursing questions

[Ben&Erin]

we were not allowed to be discharged unless we had home nursing set up. Talk to your social worker at the hospital. It can be very tiring without nursing care. Good Luck!!

[christyw]

Same as Ben&Erin, we had to have nursing before we could discharge. In fact, the agency had to have us covered 24/7 before discharge, but while they claimed to have that amount of coverage for us, they did not. Which, I'm glad they went ahead and said they did because I wanted Gaithy HOME! (we had 24 hrs for about 4-5 days a week which was nice) We did have a ventilator too...that may change things at home concerning the insurance coverage, etc... Still, the vent really makes it no harder/easier per se, and with or without a vent you will really benefit from some nursing hours in the beginning at least. We were able to have secondary Medicaid for Gaithy that picked up after our insurance paid. If ins. didn't want to pay for the nursing, all they had to do was send a denial letter to the agency and then that gave the agency the legal ability to file fully with Medicaid. Medicaid covers our nursing fully, as well as meds, doctors appointments, etc... And in Arkansas there is a "Medicaid" program called Tefra to cover families whose income levels exceed Medicaid limits.

Also, you should be given trach change training before discharge. It seems to me that it would be negligent for a hospital to send you home without FULL training. We met with a specialty nurse from ENT for training. We practiced on a doll with a trach and then we each did a change on gaithy in the weeks before discharge. We were also able to invite family members in for training. (the rule was at least two people had to be trained on trach and vent, but I have since taken one of my nurses up to the children's hospital and had her trained by ENT also, just to give her more formalized training - because I never let her change the trach, but I wanted her to know how for sure.)

Good luck! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

christy

[nicksmom]

Us too, we could not be discharged until we had 24/7 coverage for the first week. Â*We also had to go through 6 trach changes between my husband and myself before discharge. Â*We went through 6 wks. of training and an independent day where we had to have Nicholas by ourselves in the hospital for a 12hr. period with out nurses. Â*We had to take him off the floor and do all of his care (med, bathing, feeding and trach change). Â*I would have your nurses or resp. therapist help you with all of your questions before you leave. Â*

I would also talk to the social workers and see if something can be arranged. Â*Although the nurses can be a hassile it is a huge relief the first week you are home to know you have someone to turn to.

Please ask us all the questions you have. Â*Everyone here is always willing to help in any way.

Good luck
Carrie

[cariaad]

Insist on learning to change the trach comfortably and get infant CPR training. If you have a vent or O2 know how to ise them as well. We did 2 days of rooming in at the hospital to make sure we were comfortable with ALL care before Alli came home. We had no home nursing, just a twice weekly 1 hour visit to check her lungs and get any further questions answered. After reading so much about the bad nurses out there, Im really glad we came home and coped on our own...Deb

[Michael's mom]

Did you know that your discharge doctor is liable in the event that you are not trained and your doctor discharges you and due to your ignorance of how to take care of your child, your child ends up mentally retarded, further disabled, or dead?? Remind the doctors and nurses of this and start writing down their names in their presence. Further, you must see the hospital social worker and insist they help you to get some nursing. You can and will make life threatening mistakes. I do it and have done it and miraculously my son has survived, but the feelings of guilt and frustration and anger can be overwhelming after the episode is finished. Do your child a favor and speak up - rather SHOUT out for help or you may regret your decision later. Good luck! Susan

[Laurie]

Ditto ditto ditto on needing nursing care and training. Even with nurses present, the nurses will need your help (or even directions from you) in an emergency. You need to be as good as the nurse or better at assisting your child with emergency suctioning, trach changes, CPR, etc. And don't worry, you can do it. I was scared stiff and thought I would never be able to handle this medical stuff and I could and did. If I can, so can you.