August 1st update
9:30 a.m. Bennett had a good night. They stopped the anti-nausea med last night. He ate some jello. He stayed up until 11 p.m. so he was awake for 7 1/2 hours. Bennett is ready to be home. We have set a goal and know that he is going to have to start eating/drinking, no fevers, and hopefully be able to handle the pain of the mouth sores without morphine. We want to talk to the nurse practitioner and see what steps we need to follow to get to our goal of being home.
3:30 p.m. The nurse practitioner came in this morning and said we can go home. We had mixed feelings about this. It seems to be an extreme difference. The only thing that is better about Bennett is no fever. He has slept all morning. We had to to make a tough decision and out way the pro and cons of coming home. They just took him off the morphine at 12:30 and started oxcycontine by mouth. So far Bennett said he can handle the pain but hasn’t ate or drank. We got a roommate that is 8 months old at noon and this helped us make the decision to go home. He is sick enough to be in the hospital and we can stay if we want too but we are hoping with being in his own bed and in his own room, he can be happier. It’s really just a waiting game for the mouth/throat sores to heal so he can eat/drink. So we either wait in the hospital or wait at home. He will be on TPN (fat/nutrients) fluids each night. His createnine level is still at 1.; they are concerned that its a little higher than what it needs to be so we will have to get a test on Friday to check it. We are waiting for discharged papers, TPN fluids, and his oral meds. It probably will be late before we are home. Things have moved pretty quick so we are not sure what our emotions are of leaving the hospital.
10:00 p.m. We made it home around 7:30 tonight. We just so happen was discharged from the hospital the same time that the St Louis traffic picks up. Bennett feels pretty good considering. He tried a chocolate malt on the way home and drank a few sips. He tried noodles for dinner and ate a couple of bites. He is doing a good job trying. Home health came and hooked him up to the TPN fluids and I will have to disconnect him in the morning. He has pain medicines, constipation medicine, magic wash, thrush medicine, 6mp chemo pill to take each day besides the TPN fluids. The blood culture came back negative, an answered prayer. It was unexpected that the Dr’s said we could go home today when we just asked of what he needed to do to go home. I wanted a plan and thought it would be couple of days not hours. Bennett is happy to be away from the hospital. Your prayers are appreciated as he has a ways to go.
“Trust in the Lord and do good; dwell in the land and enjoy safe pasture.” Psalm 37:3
A lot of people have been praying for you and waiting to hear that you are better today! Glad you had a good night. I hope you are able to come home soon!! We are very proud of YOu Bennett!!
Sure good to see you get to go home. It will be much more comfortable in your own place I am sure. I hope your appetite improves.
Hope you make it home safe. Zach, Jake & Holly will say a special prayer for a good night for your family.
Bennett, Cindy & Family,
Wow you sure have had a rough week, I sure hope things improve for you very fast. Bennett you have been a real trooper, I know none of this is easy and you have handled it so very well. Cindy I can only imagine how exhausted you are from this week. Please know I am around all the time and if I can do anything at all please don’t hesitate to let me know. Our prayers are always with you and your family. Bennett sure hope those sores get better soon for you and you get to eat some real food. Much love to you Bennett you sure are one tough young man. Wishing all of you brighter days ahead!
Love always,
Roger, Tami & Abbie
WELCOME HOME!!! Glad you got to come home. Hope food tastes better soon. We love you
Cindy & Bennett,
I have been praying fervently for things to get better quickly. I hope being at home will help. Cindy, did you get my text? If there’s anything we can do to help, please let us know.
Trudee