Spring is Here!!

I can’t believe spring is here and I have not posted in so many months. Things with Stephanie have changed dramatically. She has yet to leave the hospital, we are in our 6th month here. I will try to keep this as short as I can but as mentioned so much has changed.

Stephanie still has no motility meaning her stomach does not work at all right now. Anything she does put into her mouth will stay in her stomach causing distention and severe pain. Stephanie has a gt G Tube which drains her stomach 24/7 to keep even stomach bile draining rather than just sitting in her stomach. Because we have to keep her stomach from disending she is unable to eat solid foods. She is very restricted to soft, smooth light food that can easily drain through her G Tube without blocking it. Initially this was extremely difficult for Stephanie she missed eating, the social aspect of eating and as she would say “I need something to crunch”. We have came up with the “chew and spit” solution so Stephanie can actually now enjoy and savor foods. It works just as it sounds. The doctors here were very impressed at her ability to do this as it does take so much will power on Stephanie’s part. She is the one who can make this conscious decision based on how her stomach will feel if she does eat the food. Needless to say we have had few problems.

Stephanie is getting her nutrients through her PICC line. She gets TPN and Lipids each day. They are like IV fluids. She also get feds through a GJ tube which feeds her directly into her intestines where she is able to absorb the nutrients essential to grow. She has grown well and gained4 kilos in the past 6 months. Feeding her in this fashion is how we will have to leave the hospital. It will require training and close attention, monitoring and a major life style change but it is certainly achievable. Stephanie will have three different feeding machines at home every night to help her maintain her nutrients and keep hydrated. (she is unable to absorb even a drink of water).
We are trying to work it out so she has at least 4-6 hours of off time each day. She will have her drainage bag open during that time but no feeding machines.

Despite the new feeding methods Stephanie still has frequent bouts of severe pain. We have had tests, blood work, scopes and even a surgery since we have been here trying to figure out why this is all happening and still it is a mystery. Our new theory is her bowels are not working well enough to handle the feeds. We have lowered her feeds and increased her TPN to see if this makes a difference. Only time will really tell.

We hope to leave the hospital some time in the near future. We will maintain Stephanie at home under very close supervision by our many teams. Stephanie will have a full time nurse to help her get through the everyday meds, tubes and challenges she will face living outside of the hospital.

All in all life in hospital has been ok. Stephanie has left a lasting impression with many of the volunteers, nurses, doctors…She is a gal with a lot of determination and spunk. Stephanie is my hero!

Thank you all for your help and support I will try to keep this page updated as often as I can.

Denise