We get to go home...yeah???

Tube feeding machine

I was confused by my own thoughts.  For the last six weeks all I could think about was going home, but now I was scared at the thought of leaving the hospital.  This feeding tube thing was absolutely foreign to me.  Could I really do this at home on my own?  What if I ran into a problem?  At the hospital there were nurses there to help when something went wrong.  Besides, I didn't have one of those handy little buttons at home.  You know the one you push, and a nurse comes over the intercom and asks you what you need.  I didn't have one of those at home.  What if I needed the nurse's help? 

I guess I should have known that Christopher was not the first person to need tube feeding.  The hospital had already made arrangements for us to meet with a nutritionist who would monitor Christopher's calories, growth, and weight.  They had also set us up with a medical supply company which would provide us with tube feeding supplies, trouble shooting services, and outpatient care.

Our insurance company had assigned a case manager to help us transition.  She was very helpful, and I soon found that she was a valuable resource person.  I could call her with questions and problems.  She was a font of information. She also let us know about special products and "tube tips" to make life easier with tube feeding.  She helped us get in- home respite care as well.  We had a nurse who came to our home to help care for Christopher, so that I could run errands or spend time with my other children.


The nurses at the hospital worked hard to prepare us as well.  They continued to work with me on learning to care and manage the tube.  They helped me learn to trouble shoot when there was a problem with the feeding pump.  When the pump started to "beep" indicating something was wrong, the nurses had me figure out what was wrong, fix it, and re-start the pump.  I got plenty of practice putting in the NG tube to vent his stomach.  They had me do it every time until we were discharged, so that I would become more comfortable with doing it.

The nutritionist and a representative from the medical supply company came to the hospital to meet with us.  They went over Christopher's caloric needs with me and established the number of hours a day that Christopher would need to be "hooked up", as well as, the flow rate.  They thoroughly went over the feeding pump machine with me explaining operating procedures and troubleshooting strategies.  I was also given phone numbers of contact people at the medical supply company that I could call to order supplies or ask questions.

It was explained to me that as soon as we arrived home a nurse would be there to meet us in order to register Christopher for outpatient care.  She would help get the tube feedings going and answer any questions we might have.

Christopher with Auntie

It was all very well orchestrated.  They had prepared me as best they could.  I had been trained and supplied with everything I was going to need, so why was I still feeling so scared?  After 42 days in the hospital I should have been jumping for joy, but instead I was nervous and apprehensive.  Was I really ready for this?

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More tomorrow...