Well, I got Ben to eat more today. Four spoons this morning plus half his milk. lunch kind of got screwed up with the bags changing. Finally got them to stop leaking today. It took me two trys but got it so far. I took over changing the bags and dressing changes today. I didn't ask them, I just did it and they didn't say a word about me not doing it. Now the only things the nurses are doing is the medication. I was watched by the nurses and Ben still had to have the dilaudid push IV both times. He is really a mess around one of the bags. I hate to put the glue back on there but it has to so the stuff won't make it worse. The incision is healing really well. No fistulas there. Only one spot that has new tissue that is really sensitive and that is where the bags leak on too.
He ate 3 spoons at dinner plus some peach juice. So all in all it was better than yesterday. He is really weak now tho. Only got up once today and went down to the trailer area. I washed and braided his hair. The air mattress is helping his back a little but not his migraine. He did not have the strength to walk this evening. He kept trying but couldn't get out of bed so I told him to rest and we would try it again tomorrow. He is also running 99.9 tonight which is up from this morning. I keep thinking of the saying "feed a cold, starve a fever" but I was just getting him to eat. What a quandry. He is also having nose bleeds now. One good thing tho is the bags are working good and his intestines are starting to work right. the stuff coming out looks like baby $%&* yellow and the same consistancy.
The Case worker is still trying to get him home. She has come up with another idea that she is working on. I really hope it works. If it does, sounds like the first few days are going to have to be at home to get things all set up. then we can see what happens.
Well not much more to report. He was sleeping when I left so I am going to get some also. You all have a good night. We Love You All. Love Ben and Illa
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8 comments:
you are amazing Aunty. I don't know how you do it. love you and say hi to uncle. You are my hero and how you take care of uncle. thank you for teaching me how to be a great wife. oxxo
I think someone has tried to call a couple of times. We haven't been able to get to the phone in time. Then Ben hasn't been really able to talk. He sends his love to everyone and hopes they understand when he doesn't answer the phone. It is just a job to be able to get me to hear and understand what he is trying to say at times. It is really hard for him to talk and trying now makes his head hurt worse. He wants you to know that he is not ignoring you, he would love to talk to you but is just unable to right now. He sends his love back to all.
I have my days. I am not perfect and don't pretend to be. I can't stand to see anyone or anything suffer and if I can help ease that I would give my all. I have always been one to put others first above my own needs. I learned that as a child and there are times that I wish I could put myself first. I never dreamed that I would see the day that Ben would not be the strong one. I can't tell you or teach you how to be a good wife. I am just a person stumbling along. That is an on the job training class. You take each day as it comes and do the best you can but also have to remember you count too. You have a good man that loves you very much. I guess it comes down to what you are willing to sacrifice and give up. I would give my life for Ben if it would help. When he suffers, I suffer. I don't pray for a cure or healing anymore. I pray for his suffering to end and let him be at peace. I just hope that what I am able to do for him will give him some peace and ease his suffering.
I love you too!!
dear Illa, know my heart is with you, also understand what you are going through with the staff, I've been there and on it. I swear their good hat harm not healing, as I've had to get on cases myself. I'd swear they've not been to school at times, I've had to correct issues myself and end up doing the nursing or show them how. The are good at doing more damagecthen good at times, grrrrrr. Also doctors too. Thank God for the team I worked with in Portland, for the clients were some mulit. Issues. I worked with heads of dept. Also with those that did ground breaking surgeries, it was something else, now they've left their fields, as life has changed so. I am still in contact with them, hang in their and know that I'm glad Ben, does not suffer from muti issues as I worked with, I know how hard it can be. Love Lili
I hope that Ben is able to eat more and gain the strength to walk. Sounds like the plumbing is starting to work.
Jim
Illa, I don't think I've heard a better, concise description of the the process of being a good mate. Successful relationships are hard; they not only take tenacity and perseverance, but like you demonstrate, a love that sacrifices for the other. And just like our Lord, a sacrifice that is bestowed on someone, who for one reason or another, cannot reciprocate.
It's such a joy when the second (and 3rd) gens start getting it: In a culture where young people are so messed up and hedonistic, they need to see this kind of love. The great thing about this part of your story, is you don't have to "perfect" to show this kind of commitment, just the resolve to do what's right. God bless you.
Called both phones today mom. Love you both. Keep feeding dad, I think he's at the point where starving the fever is a bad idea... even with him eating, it's getting starved anyway.
I've got lots of green tomato, zucchini, beef soup laid up. I'm hoping that when dad gets home that even if we need to mush the veggie chunks or just have him drink the broth. Will be making pasta sauce for you too.
Kids send their love, especially Athena. She may have tried to call you yesterday (she was apparently home sick). So let dad know she says hi and she loves him.
My brain has decided to go offline a bit... Do we have any gas for the tractor in all these canisters? I don't want to put in the wrong stuff... and if no unleaded where did you hide the empties?
Ben didn't want the cereal this morning. He did want some eggs so I gave him 4 bites of my scrambled eggs. Have since decided "bad idea" this soon. have to go back to the cereal. Told him he would have to just eat that for the next couple of weeks since it is easier on the intestines and get them used to pushing stuff thru. He didn't eat anything more today as he wasn't up to it. Running a low grade temp again tonight. I think he might be getting sinusitis. Really hope it is only the weather change. I got a good complement fron the wound care team today. They came in to look at my job with the dressing and the bags. Didn't have to change the dressing for 24 hours and then had to change the bag tonight at 8. At least they lasted longer than the ones put on by the other nurses. The wound care team wants me to do an in-service on the colostomy bags which I think is really funny. They also want to put me on their team. The Case Manager wants to hire me which I think is also funny. They know I can't do it but it is nice to hear that they are pleased and sure that I am capable to do things right when at home. I also got a complement from his nurse tonight who is an old ER nurse. She was surprised that I didn't get all squeamish when taking the bag off and that I took my time and didn't yank it. I was surprised also because this was the first time that Ben didn't require a Dilaudid push before hand. He is out of it tonight again. I think the cancer has really spread and fast. I am sure now that it is in his back in the spine just by the way he is acting. Sometimes I wonder if he will ever get to go home. It is like one step forward and two back.
He is resting quietly for now so and headed for bed myself. I am totally exhausted. Thank God that I called Cindy and told her I would not be there for work this weekend. I hate to do that but I am needed here more, for now anyway.
No Teresa, we usually siphon the gas from one of the vehicles. There should be gas cans around. Be my luck that they have blown away as they are plastic. Hope there is room in the freezer for the soup stuff. I am sure there is a lot there that you could throw out that is old now. The animals would be really happy if you did.
Talk to you all tomorrow. Love from Ben and Illa.
Illa, you are in my heart. I'm sorry I haven't written you lately, but I think of you all the time. I spoke with Ben tonight and he sounds so great. Life is sure hard sometimes. I keep you close to me in my prayers.
hugs.
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