Big Mike's had quite a week.
Yesterday we picked up his custom leg compression socks/wraps and wow, what a difference. He was measured for wraps for both legs and thank God for insurance. WAY out of our ballpark. It consists of a nylon sock that makes Spanx look like soaking wet toilet paper. That goes on his foot up and over his skin graft, and then a wrap with Velcro fasteners that fits from the ankle up. When he had his emergency surgery on 8/1/12, all the lymph glands from the knee down were removed and there is nothing to push the fluid in his body back up the leg and into the remaining lymph system in the groin and abdomen. From day one he's had ace wraps and Coban on his leg, every single day since 8/1/12. By my calculations last night, he's had over 950 ace wraps and about 850 rolls of Coban used. Coban--amazing stuff. I believe you could wrap the space shuttle in Coban and it would hold together through fire and re-entry. It's a self-sticking wrap that kept the ace wraps from loosening and falling off. This will be a HUGE relief financially because since he was discharged from Wound Care on 10/10/13 we have been buying it all ourselves and I'm tapped out. But, you do what you have to do.
These wraps will profoundly change his life. Although I did my best, there was never enough even consistency with the ace wraps. It took two every time and either one was perfect and the other too tight or one was too loose--swelling in the leg can be VERY painful as the skin grafts begin stretching and now he will have even compression all over the entire lower left leg. He has been taking showers every other day or at worst, every two days. Now, he can shower every single day, and he will gain some independence from me having to unwrap all the layers for him in order to take a shower. Now he can simply undo the Velcro straps, slide off the sock and jump in the shower. We will still cover the skin graft with some sort of product to protect the graft itself from being rubbed (we have already dealt with one hole being rubbed through the skin graft and that was a special hell in itself and I had to scramble to make sure it stayed clear of contaminants and didn't get infected. Dr. Van Der Hayden, the doctor that did the skin graft surgery, is NOT someone I'd want to piss off by ruining her work or endanger his life by opening him up to potential new infection).
The wraps were torquing his knee and making walking excruciating. He's flat footed and the wraps were causing foot pain in the arch and wrecking his one good knee. Now, everything is even, consistent, and comfortable.
AND, this leads into the second blessing of the week.
Mike's new doctor has referred him to the Bariatric Surgery Unit of Salem Hospital. It goes without saying that if you're off your feet for four years, diabetic (type 1), and dealing with physical injury, you put on weight. A lot of weight. For nearly two years all he's heard is STAY OFF YOUR FEET. That kills the boyish figure.
We were scheduled to attend a once a month introductory meeting this last Wednesday but he came down with bronchitis and we passed until next month. The meeting is mandatory and he'll be weighed and given a packet of paperwork to fill out. They have strict weight guidelines that he must meet before he can have the surgery. This is good. Left to his own devices, the man is admittedly lazy. Having these requirements will motivate him to meet their guidelines. He's jumping ahead of the game by getting weighed in a day or so on his own at the hospital and seeing how much work is ahead of him to accomplish the expectations of the hospital before the next monthly meeting in July.
August 1 will be two years since our lives slammed into flesh eating bacteria, or I should say flesh eating bacteria slammed into our lives. We have lived transparently about how this journey affected each of us. It has been brutal, painful, agonizingly long at times, and blessed with victories at other times. Many days there were more questions than answers. Many days I just cupped my hands and raised them up over my head and said to God, "Here. You take it all. I can't do this right now." Our faith is what has kept us from just jumping ship and running. Knowing that eternity awaits us, that's what keeps us going.
I have seen a profound change in Alison. She's had to carry a much larger burden than many children her age carry. Having a sick parent is TOUGH. She asks questions only a child could ask. "Why doesn't dad have a job like other dads and go to work?" "Why does dad have to always be at the hospital?" Why. Some days she's just broken down in tears and I haven't had answers. Her most basic needs have been met, but now that Mike's doing better, it's time for Alison now. Her clothes have worn out and she needs new ones. She's larger than many girls nearly 10 years old. Five foot four and wearing women's clothes and shoes now. Puberty is pounding on the door. Take all of the last four years and mix it with puberty and my sparkling little glass of champagne is suddenly a bottle of Mad Dog 20/20. There is no magic pill or wave of the wand. It's a lesson for Ali that life isn't always a sitcom where every crisis is solved in 22 minutes with a fabulously dressed and coiffed family. Real life isn't a Disney show. Real life means you hear "no" a lot and you either act like a turd, which gets you nothing, or you handle it graciously and know mom will try her hardest to make things happen when she can.
Admittedly, this has all taken a toll on me, too. I'm tired. If my tolerance for bullshit was minimal before, it has headed into negative territory now. I have learned to navigate my way through hospital rules and doctors offices. I've learned to advocate for someone that is incapable of advocating for himself. I have learned to graciously know when to shut up and when to fire off a verbal missile that gets things moving. Walk softly and carry a big stick has become my mantra. The world tunes out a noisy bitch. The world moves when the quiet suddenly raise up the big stick. I hate seeing the man I love suffer so much, but I have learned to focus on making him comfortable and mentally at peace, rather than wringing my hands and worrying about how we will make it. His greatest compliment to me EVER is that he considers me the epitome of the Proverbs 31 woman. I won't agree or disagree but that's high praise from a man that had basically no use for women before this. God, without fail, has ALWAYS provided when I saw nothing. A couple of times our church has come alongside us and taken the wheel when the truck needed work. No words, just stepped in and did what needed to be done. Miracle makers. We are officially joining our church tomorrow. We will stand before the congregation at the prayer service and commit to stand with the church that committed to stand with us and has, many times. I have been able to encourage other women taking care of their husbands. If God used this to show other women, "You are stronger than you know, you can help the man you love," then it's all been worth it. If one person seeks Mike and sees the Kingdom, then it's all been worth it.
Yesterday we picked up his custom leg compression socks/wraps and wow, what a difference. He was measured for wraps for both legs and thank God for insurance. WAY out of our ballpark. It consists of a nylon sock that makes Spanx look like soaking wet toilet paper. That goes on his foot up and over his skin graft, and then a wrap with Velcro fasteners that fits from the ankle up. When he had his emergency surgery on 8/1/12, all the lymph glands from the knee down were removed and there is nothing to push the fluid in his body back up the leg and into the remaining lymph system in the groin and abdomen. From day one he's had ace wraps and Coban on his leg, every single day since 8/1/12. By my calculations last night, he's had over 950 ace wraps and about 850 rolls of Coban used. Coban--amazing stuff. I believe you could wrap the space shuttle in Coban and it would hold together through fire and re-entry. It's a self-sticking wrap that kept the ace wraps from loosening and falling off. This will be a HUGE relief financially because since he was discharged from Wound Care on 10/10/13 we have been buying it all ourselves and I'm tapped out. But, you do what you have to do.
These wraps will profoundly change his life. Although I did my best, there was never enough even consistency with the ace wraps. It took two every time and either one was perfect and the other too tight or one was too loose--swelling in the leg can be VERY painful as the skin grafts begin stretching and now he will have even compression all over the entire lower left leg. He has been taking showers every other day or at worst, every two days. Now, he can shower every single day, and he will gain some independence from me having to unwrap all the layers for him in order to take a shower. Now he can simply undo the Velcro straps, slide off the sock and jump in the shower. We will still cover the skin graft with some sort of product to protect the graft itself from being rubbed (we have already dealt with one hole being rubbed through the skin graft and that was a special hell in itself and I had to scramble to make sure it stayed clear of contaminants and didn't get infected. Dr. Van Der Hayden, the doctor that did the skin graft surgery, is NOT someone I'd want to piss off by ruining her work or endanger his life by opening him up to potential new infection).
The wraps were torquing his knee and making walking excruciating. He's flat footed and the wraps were causing foot pain in the arch and wrecking his one good knee. Now, everything is even, consistent, and comfortable.
AND, this leads into the second blessing of the week.
Mike's new doctor has referred him to the Bariatric Surgery Unit of Salem Hospital. It goes without saying that if you're off your feet for four years, diabetic (type 1), and dealing with physical injury, you put on weight. A lot of weight. For nearly two years all he's heard is STAY OFF YOUR FEET. That kills the boyish figure.
We were scheduled to attend a once a month introductory meeting this last Wednesday but he came down with bronchitis and we passed until next month. The meeting is mandatory and he'll be weighed and given a packet of paperwork to fill out. They have strict weight guidelines that he must meet before he can have the surgery. This is good. Left to his own devices, the man is admittedly lazy. Having these requirements will motivate him to meet their guidelines. He's jumping ahead of the game by getting weighed in a day or so on his own at the hospital and seeing how much work is ahead of him to accomplish the expectations of the hospital before the next monthly meeting in July.
August 1 will be two years since our lives slammed into flesh eating bacteria, or I should say flesh eating bacteria slammed into our lives. We have lived transparently about how this journey affected each of us. It has been brutal, painful, agonizingly long at times, and blessed with victories at other times. Many days there were more questions than answers. Many days I just cupped my hands and raised them up over my head and said to God, "Here. You take it all. I can't do this right now." Our faith is what has kept us from just jumping ship and running. Knowing that eternity awaits us, that's what keeps us going.
I have seen a profound change in Alison. She's had to carry a much larger burden than many children her age carry. Having a sick parent is TOUGH. She asks questions only a child could ask. "Why doesn't dad have a job like other dads and go to work?" "Why does dad have to always be at the hospital?" Why. Some days she's just broken down in tears and I haven't had answers. Her most basic needs have been met, but now that Mike's doing better, it's time for Alison now. Her clothes have worn out and she needs new ones. She's larger than many girls nearly 10 years old. Five foot four and wearing women's clothes and shoes now. Puberty is pounding on the door. Take all of the last four years and mix it with puberty and my sparkling little glass of champagne is suddenly a bottle of Mad Dog 20/20. There is no magic pill or wave of the wand. It's a lesson for Ali that life isn't always a sitcom where every crisis is solved in 22 minutes with a fabulously dressed and coiffed family. Real life isn't a Disney show. Real life means you hear "no" a lot and you either act like a turd, which gets you nothing, or you handle it graciously and know mom will try her hardest to make things happen when she can.
Admittedly, this has all taken a toll on me, too. I'm tired. If my tolerance for bullshit was minimal before, it has headed into negative territory now. I have learned to navigate my way through hospital rules and doctors offices. I've learned to advocate for someone that is incapable of advocating for himself. I have learned to graciously know when to shut up and when to fire off a verbal missile that gets things moving. Walk softly and carry a big stick has become my mantra. The world tunes out a noisy bitch. The world moves when the quiet suddenly raise up the big stick. I hate seeing the man I love suffer so much, but I have learned to focus on making him comfortable and mentally at peace, rather than wringing my hands and worrying about how we will make it. His greatest compliment to me EVER is that he considers me the epitome of the Proverbs 31 woman. I won't agree or disagree but that's high praise from a man that had basically no use for women before this. God, without fail, has ALWAYS provided when I saw nothing. A couple of times our church has come alongside us and taken the wheel when the truck needed work. No words, just stepped in and did what needed to be done. Miracle makers. We are officially joining our church tomorrow. We will stand before the congregation at the prayer service and commit to stand with the church that committed to stand with us and has, many times. I have been able to encourage other women taking care of their husbands. If God used this to show other women, "You are stronger than you know, you can help the man you love," then it's all been worth it. If one person seeks Mike and sees the Kingdom, then it's all been worth it.
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