These past 13 days have been so long..........Poor Steve has memorized the dining room service menu and is completely disenchanted with eating. We were so excited to be released today, but the process took us hours. We had college friends visiting from Boise and they left around noon and probably beat us home!! True fact, as Lynsey would say!!
Steve is hooked up to his own portable pain pump. And the stupid thing proceeded to beep almost the entire way home. Every time Steve would move slightly, it would beep (as annoying as a baby, who won't stop crying!). The beeping stops the pain meds from flowing into Steve, so very serious, until the problem is solved.
We think we have the problem at least solved for the evening. Tomorrow someone from Mercy Home Health will come to our house and try to problem solve with us how to adjust his movements without stopping the flow of his pain meds.
The lymphoma has affected his ability to move his right leg. He has almost no control of movement. So that is very disturbing for Steve, because he was used to getting around with his walker, but his right leg is almost dead weight and he has to almost drag it around. And then you add the edema that is still in his legs from the large amounts of chemo and liquids, it makes it very difficult for him to get around.
Plus the Surgical staff lost his slippers. We purchased "boat sized slippers" for his large feet (size 11)due to the edema in his feet from the first round of chemo and he wore them into the surgical room to have the permanent epidural pain line inserted and the surgical staff never returned his supersized boat slippers. So he no longer has his standby "larger than life--almost shoe boxes" slippers. So we had to cut the backs off of his regular size slippers to try to give him something to wear home from the hospital.
The nursing staff told me "don't worry, just go out and buy Steve another pair of slippers". Have you ever tried to purchase slippers at any time other than Christmas? They aren't around in the stores except during the holiday time.
We were tired, we were angry, we wanted to go home, and he has nothing to wear on his "larger than life--needing boat sized slipper feet". We looked pretty pathetic........until the nurse took out her scissors and said "let's just cut up your regular slippers"
We made it home, beeping all the way and Steve trying to keep on his slippers which kept falling off his feet. We had to laugh, because if we couldn't laugh, we'd probably head for a nearby ditch.
Angels of mercy have been in our home cleaning, working on our bathroom, and we were so thrilled to see the ramp by the back door. That worked so well with getting Steve and his wheelchair into the house. Thank you Micah!!
Steve is still so overwhelmed with gratitude to everyone who has participated in working on our house while he's been in the hospital. He realizes that he can't do the repairs and the items that need to be done, so thank you to all of you for truly being angels of mercy to us. Thank you Micah for putting up the beadboard behind my stove and for doing the top coat of concrete by the back door. I know that you spent many hours at our house when you could have been doing something fun with your wife and children. Patti Ann surely raised a super son!!
Thank you Barb Moore for helping Patti Ann with the painting, it looks great!
Thank you Bob & Sue for buying the vanity, the vanity top, the medicine cabinet and the flooring, it really looks great. We can hardly wait to see it all put together.
And not living out of boxes!!
This has been a tough time at the hospital. Steve is getting more tired and with his leg causing him so much difficulty lifting it in and out of bed, we are realizing how much the lymphoma is affecting every aspect of his daily life.
We don't have another chemo date scheduled. Dr. Nichols wants Steve to get another CT-Scan and after he sees how the lymphoma has reacted to the latest round of chemo, we'll know whether we'll proceed with another round or we'll possibly do radiation on his hip/pelvic area.
We are still looking for a beach house over Easter vacation, if all goes well and Steve's health is good. We are being encouraged to have some quality family/friend time away from the grind of being in the hospital. Dr. Nichols and the social workers are all encouraging us that we need to be making memories during this time.
Of course trying to find a large beach house during Spring Break shouldn't be too difficult, right?? Ha!!
We are trusting that the Lord has that detail worked out, because we are so overwhelmed with trying to get through each day, I don't have the emotional energy to call up real estate companies looking for a beach home. Plus the cost scares me to death, to even think about. We truly wanted to be able to go to the beach and have family members drop by as they are able to spend some time with Steve in a relaxed setting.
We were so blessed by having our good friends, Jay Rais and Ellis Walker, (old (not that old!)college friends from Boise), spend some time with us. It was so fun to reminense and laugh about the good "old days" and realize that even though the years have separated us, we still have the same connection and love, that bound us together in the 70's. Lynsey got a kick out of hearing some of the old stories, that have only improved with each telling!!
As you can tell, we are pretty exhausted. But I wanted to let all of you know that we have returned home. And it sure feels good..........we missed seeing Faith and all the new tricks she's learning and how many more ways she's getting into things. Poor Amanda, nothing deters Faith and she sure keeps Amanda hopping!! Faith will turn 1 on March 25!! Hard to believe!!
good night and God bless,
mj
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