Tuesday, November 17, 2009

Home, James!

Update from Keith:
Some of you may not have heard the good news so let me pass this along. James gets to come home next week! Things have been very stable over the last month and most of the time has been spent letting James heal and finding the appropriate level of feeds that he can tolerate along with the optimal level of TPN he needs to be on. It will be several months still until James is able to have the surgery to reconnect his small intestines, and we have been hoping he wouldn't have to spend that whole time in the NICU. Due to issues with his Hickman catheter (like it falling out every few days!) they were not able to re-feed him through the distal (lower) portion of his small intestine so that allowed him to get to a stable point in terms of his feedings a little faster than everyone anticipated. The down side to this is that he is not able to get very much nutrition through his feedings and instead has to rely very heavily on the IV nutrition (TPN.) There are dangers with being on TPN long term (mainly to the liver) but it is being monitored and at this point the dangers are still low. (To get an idea of how he little he gets, he only gets 3cc an hour. If I understood the conversions correctly it is about 30cc per ounce, and I think the normal range for a baby at 2-3 months is between 24 - 30 ounces, so he is basically getting about 1/30th of what normal baby would get.)

The positive part of all of this is that James gets to come home on either Monday or Tuesday of next week! Lisa and I have been getting trained on everything we will need to do to care for him once he is home. One of the things that they have been working on at the hospital is slowly increasing the times that James can be completely unhooked from all of his equipment (feeding tube and TPN.) Yesterday he moved up to 3 hours and all of his levels were very good. The ideal goal would be to get him to a point were he can be off of everything for 6 hours, although it may end up being set up as two separate 3 hour periods during the day.

Lisa will be spending the night at the hospital one night this week to do a "dry run" before he comes home, just to make sure we are familiar with everything. Then on the day James comes home we'll have a Home Health Care worker come out to the house to train us on all the equipment for home use. It'll be a steep learning curve, but we're sure James will thrive here at home and we can't wait to get to know him more each day.

Thanks for all of your prayers and support! Now on to the next phase of our journey. :-)


Heather Elizabeth said...

We are committed you the 4 of you. I am praying for a smooth transition for all of you, including Maddie.

Anonymous said...

My thoughts and prayers remain with your family as you bring little James home. I know the love in your household will help to nourish his spirit! Once things become more stable and routine, we will get together. Lots of love to you and yours!

Barbara Cooney

Katy said...

YAY! What a Happy Thanksgiving!