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One day at a time


MaryJo

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Dan is still in the hospital. They just can't get his ulcerative colitis under control. They started him on Remicade infusion on Wednesday. He will have three infusions in six weeks then he'll go on maintenance which is an infusion every 6 to 8 weeks. If this doesn't help control the UC the next step is bowel resection surgery.

 

He was doing so well on Friday. We transferred out of bed and on and off the toilet and he did great. He was weak, but we did it and we both felt good about it. I went home so happy. He stayed up and in the wheelchair for two hours. The nurse said he even went for a ride around the floor.

 

Saturday he was tired but we transferred to the wheelchair and he was up about 45 minutes. I figured he was just worn out from Friday. He called me in the evening and told me the doc was just in and that his blood work is looking good, hemoglobin, potassium, magnesium, all numbers were good and he will probably be discharged on Monday. Yea rah!! Happy he's coming home, but knowing that my work is just starting up again.

 

Sunday his brother and sil came for a visit. He was so very tired. Brother Mike helped me transfer him to the wheelchair and we went for a very short ride. We transferred to the toilet, but when it came time to get off, he couldn't help me at all. Mike helped me get him off the toilet and back into bed.

 

He begged me not to make him go to a nursing home. If he can't help me get him up off the toilet there's no way that I can take care of him at home by myself. It just kills me when he begs like that, makes me feel horrible. I've explained to him that he has to be able to physically help me with transfers and he says he understands, but I still feel horrible. He would hardly even talk to me when I left last night.

 

I have looked at several local rehab centers and found a couple that are rated very high by Medicare. The first one is 20 miles away, the second one is 12 miles away. I know this is what I have to do, but I just feel so sad. I feel sad that I can't take care of Dan at home and I'm feeling very sad that this whole stroke thing has happened to us. I keep telling myself that the rehab center will help him and he won't be there too long, but then I worry what if he doesn't come home again?

 

There, I said it...what if he doesn't come home again? I have to put this horrible thought aside and live one day at a time.

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MJ,

 

Our middle son is on the Remicade every 6-8 weeks for IBS and it seems to be the only thing helping. I pray it will help Dan also and he will be able to come back home soon.

 

Sarah

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MaryJo: as you have advised me so often, we take it one step at a time. What Dan is going through is exhausting in itself without the stroke. His fluid and electrolyte balances are all off and that is what runs the body! You know, in your heart, that once the medication starts to help, you have all that "off" time to get back physically.

 

Keep reinforcing "Rehab" to Dan, not Nursing Home. Remind him he needs to buff up a bit and then home it will be.

 

I cry when Bruce is waiting at the door, with his jacket, ready for Jen to take him to the pool, and she walks up the ramp with a face on and I have to go to work. One of these days, I am just going to say, "Go Home!" Their wants are so few and simple. He's not mad at you. He is afraid and weak and not able to cope just now.

Lie down next to him, give him cuddles and tell him you love him. Explain that this will give you both more time together the stronger he is. You know I am praying for you both every day. Debbie

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MJ, I had that same problem getting on/off the toilet when I first came home in the chair. Before leaving the hospital I fell off the commode a couple times. But when my wife helped me I never fell. I don't know about nursing home personnel.

 

He just has to get stronger but it takes time! At least he is transferring OK! My prayers for a faster recovery is being prayed daily!

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