Okay---he is getting there! Slowly but surely he is making improvements.
Friday he went down to IR for another sedation to move the tube into his stomach and small intestine. He did well with the sedation, a few issues with oxygen---but nothing major.
Friday night the doctors started the feeds into his small intestine. This is very different for Zachary. He has been "tube fed" through his stomach for over a year, but never directly into his intestine. THey started the feeds at full strength nutren at 30 ml an hour---30 calories an hour for 24 hours= 720 calories!!! NOT ENOUGH TO GET OF THE TPN--THROUGH THE IV (CENTRAL LINE) Zach needs to have 1200 calories a day to maintain and grow, but 1400 would be the ideal situation. Friday night he tolerated the feeds, but they went right through him not letting his body absorb what he needed. So, they went back to 1/2 nutren and 1/2 pedi light to get his body back into the routine of being used.
As of Saturday he was at 3/4 strength and absorbing probably 50% of the feed. Again, this is only about 350 calories. In order to make sure he keeps getting the nutrients that he needs he is still using his central line for hydration and TPN (total nutrition)! They will not take out the central line until his feeds are at least over 1,000 calories a day. Since Zachary doesn't really like to eat by mouth his food that he will eat by mouth with be "bonus calories" they are not counting that as his guaranteed daily calories. Which is the right thing to do since he will eat nothing one day, and 150 calories the next. So, please don't ask us or encourge us to feed him more---he is getting what he needs through is feeds. His oral eating is just to keep those muscles going!!!!
Sunday, he is still on 3/4 strength and doing well. They have switched his seizure medication from IV to tube meds. He is also only on Methadone and Adivant--the adivant is almost completely weened down. The methadone will take a few weeks to get out of his system. This is something that we can do at home slowly. In addition, the central line is still in and staying strong. He can't go home with the central line in, but they can put a PIC line in and we can do the TPN at home if the feeds won't meet the requirements through his tube. That is a waiting game---we will wait and see what his body says!
He is in much better spirits! He is actually walking with his walker, but is very weak and sore. He is flirting with all the nurses and telling them "BEEPING" when his machines start to make noises. When all of these things are happening to Zachary, he is still smiling. I really think that is what keeps Adam and I going---is to realize that we can keep up this routine for him--he is going through all this and he is happy.
I have to say this is getting old, tiring, and frustrating! What else can we do?? Thank you again for all the kind support in various ways!
Friday he went down to IR for another sedation to move the tube into his stomach and small intestine. He did well with the sedation, a few issues with oxygen---but nothing major.
Friday night the doctors started the feeds into his small intestine. This is very different for Zachary. He has been "tube fed" through his stomach for over a year, but never directly into his intestine. THey started the feeds at full strength nutren at 30 ml an hour---30 calories an hour for 24 hours= 720 calories!!! NOT ENOUGH TO GET OF THE TPN--THROUGH THE IV (CENTRAL LINE) Zach needs to have 1200 calories a day to maintain and grow, but 1400 would be the ideal situation. Friday night he tolerated the feeds, but they went right through him not letting his body absorb what he needed. So, they went back to 1/2 nutren and 1/2 pedi light to get his body back into the routine of being used.
As of Saturday he was at 3/4 strength and absorbing probably 50% of the feed. Again, this is only about 350 calories. In order to make sure he keeps getting the nutrients that he needs he is still using his central line for hydration and TPN (total nutrition)! They will not take out the central line until his feeds are at least over 1,000 calories a day. Since Zachary doesn't really like to eat by mouth his food that he will eat by mouth with be "bonus calories" they are not counting that as his guaranteed daily calories. Which is the right thing to do since he will eat nothing one day, and 150 calories the next. So, please don't ask us or encourge us to feed him more---he is getting what he needs through is feeds. His oral eating is just to keep those muscles going!!!!
Sunday, he is still on 3/4 strength and doing well. They have switched his seizure medication from IV to tube meds. He is also only on Methadone and Adivant--the adivant is almost completely weened down. The methadone will take a few weeks to get out of his system. This is something that we can do at home slowly. In addition, the central line is still in and staying strong. He can't go home with the central line in, but they can put a PIC line in and we can do the TPN at home if the feeds won't meet the requirements through his tube. That is a waiting game---we will wait and see what his body says!
He is in much better spirits! He is actually walking with his walker, but is very weak and sore. He is flirting with all the nurses and telling them "BEEPING" when his machines start to make noises. When all of these things are happening to Zachary, he is still smiling. I really think that is what keeps Adam and I going---is to realize that we can keep up this routine for him--he is going through all this and he is happy.
I have to say this is getting old, tiring, and frustrating! What else can we do?? Thank you again for all the kind support in various ways!
No comments:
Post a Comment