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Tuesday, September 28, 2010


I just don't even know where to start today. Benjamin had an ok night last night, but threw up quite a bit during the night. So his nursed bumped his feeds back to 12mls/hr. Then this morning they shut them off completely because Benjamin has an appointment at 4:00 to have the central line put in. That then got bumped to 1:00pm and then the whole thing got cancelled again. We are now working with social work and the patient advocate because of this. We finally got an appointment tomorrow morning at 9:00am...1 full week after his hand incident. That 1 full week of poor nutrition. Benjamin is recieving 15mls every 3 hours and he should be recieving 72mls every 3 hours to grow properly. If I would have done that to him at home CAS would have taken him from me and I would have been arrested. Some how its ok for them to do it at the hospital. Besides being terribly hungry, Benjamin had a pretty good day. He seems to get to 10mls an hour and then its too much. So I think his bowel is working just fast enough to keep the 10mls moving, but anything past that its to slow. So that's something he'll slowly have to work through. I knew this would be a process for him and I'm ok with that, but going through this process at Vic. is the worst decision I have ever made. We were given the choice to wait a few weeks for OR time at St. Joes, but its very hard to get there and we of coarse want Benjamin home sooner then later, so thats why we decided to move.. I will regret that forever. We need lots of prayers still. That his central line will go through tomorrow with out any issues...that he will tolerate more feeds, and that he will just grow and be healthy.

3 comments:

ordinary girl said...

I'm sorry to hear that there have been so many bumps in the road since moving over to Vic. Avery looks so happy!! She looks like a very proud big sister!! I am praying for Benjamin every day. i hope that he'll be home soon. ((hugs))

jules said...

shan i will be praying even more for you now, i didn't realize things were soo bad at vic.. that is crazy,
love u

Unknown said...

Shannon, you made an informed decision to move your son to somewhere that you thought would be in his best interest. Don't ever blame yourself for that. You are the best mama in the world and Benjamin is one lucky little boy to have such loving parents who are involved in every step of his care. I know it's hard and you are exhausted but have faith in your ability to make decisions...trust yourself.

Sorry, it looks like this is from Jarrod (his Google account) but it's Jen.

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