Archive for October, 2007

barely 10/30/07

we have a surgical followup appointment today. And we have a marianjoy rehabilitation evaluation appointment Nov 7 next week. i assume today will be uneventful as they check how wounds are healing. and my hope for next week is that they will see great potential for mike and admit him as inpatient for the usual month or so. my hope is not that rehab will “fix” mike in any way (that is a long-term , babystep proposition still), but i do hope it will motivate, invigorate, encourage him to pour his whole heart into getting better. it is hard to interpret him as i sit on the sidelines of his life. what i perceive is listlessness. i see him sometimes talking aloud, anunciating, then falling back to a garbled whisper. i bully and push and demand his efforts and i don’t see consistent gain. he is pain free and my life is easier because of it but mike doesn’t share much aloud about how it makes a difference with him. to be honest, it is almost as frustrating to me as when he was in pain. i want him to do more, to be more grateful, to praise God. and i have a hard time being patient or compassionate when i feel so sure he could try harder, especially now that he is virtually pain-free. but the truth is i have no real proof he is not doing his best, only my best guess. so my prayer today is not as much for these physical gains that i have been grasping after but for an emotional and relational connection between mike and i. i feel distant and annoyed with him and can offer little gracious encouragement when i am coming at him with perpetual judgement. as i thought again today about what options i have to kick his butt into action i realized i was not truly surrendering his attitude and my disappointment with him to God. i want mike to do things my way but how different to ask God to change ME to best serve us both, not to change mike. truly, i don’t feel like i should have to change at all but that’s usually my best clue that i am all in the wrong and desperately in need of God’s transforming grace. so, against my best judgement, i guess i can ask you to ask God to change me, to give me more gentleness, more grace, more love, all that i lack, to share with mike. and that God would have charge of mike’s heart and drive as well. amen, michelle

October 30, 2007 at 12:30 am 8 comments

10/21/07 11:15 pm

we had some temporary complications getting mike’s original trach type put back in after they had to switch it out during surgery. that didn’t get done until friday evening so we couldn’t get discharged until friday night. but the last 2 mornings mike has awoken calm and quiet (instead of screaming & crying out in pain) for the first time in approximately a year barring when he has been sick and unconscious. so we are already praising God for what ultimately is a miracle in mike’s daily life. his muscles are more relaxed–i can move his limbs a lot more easily. and he can be in his wheelchair without any discomfort. i think he is adjusting still from a physically stressful week. he has some headaches and is a bit whispery which drives me nuts. but he is pretty much pain-free. next i will try to book another evaluation with marianjoy rehab hospital to see what new goals we can strive for in rehab. we are a bit worn out with the details of this past week but the truth is it is hard to be more eloquent when the reality is too good for words. mike is pain-free. i wasn’t sure that would ever be true again in his lifetime. praise God from whom ALL blessings flow, michelle

October 21, 2007 at 11:19 pm 13 comments

10/18/07

Mike’s surgery went well today. He will remain in the hospital overnight and be discharged tomorrow morning (10/19). A follow-up meeting with the surgeon will occur within 2 weeks, until which time a low dose of Baclofen will be administered by the pump. Thereafter, the dosage will likely be increased over a period of adjustment and monitoring. If all goes well, it is hoped that aggressive physical therapy coupled with the ITB (Baclofen) therapy can offer Mike an incredible opportunity for a leap forward in his recovery.

Rarely (if ever) has Mike’s recovery been marked by single, identifiable occasions which carry so much exciting possibility. And while this “occasion” marks only a beginning — and carries only possibilities — I can’t help but imagine and hope that we are reaching a time where an incredible amount of prayer has a single place to “land.”

October 19, 2007 at 12:03 am 7 comments

10/9/07 11:45 pm

i got confirmation just this evening that mike is scheduled for surgery to insert his baclofen pump on thursday, october 18. they said it will be an ovenight stay at allexian in elk grove village. then he will be home with a month of dose adjustments to follow. we are both eager. other news… everything i have heard about the golf outing for the mike zegarski foundation on September 30 proclaims it was an enormous enjoyable success. and mike got to go to church with us this past sunday for the first time since march 2006. he was as comfortable as he gets through the service and lit up with a smile when the pastor singled him out, teasing him for being lax on attending lately. one debilitating frustration lately–mike is intent on getting things to ingest and i am begging him to focus on exercising his tongue from side to side or back and forth to improve his control of substances in his mouth. he is angry he can’t do the exercises and be rewarded with something to drink within the same day. he has a long way to go before it would be safe to give him anything to ingest. my patience with his irrational requests is wearing thin and i want him to simply stop begging and start working. i have asked him to see where a month of hard work gets him–maybe he would even pass a swallow test if he commits to practicing wholeheartedly. he finds a month of work beyond reasonable and i find such a short range perspective from him unreasonable. so our conversations are strained but thank God we do still enjoy our episodes of 24 together. in need of patience and grace, michelle

October 9, 2007 at 11:53 pm 19 comments

10/4/07 2:30 pm

Mike greeted me this morning with a thank you when I walked into the room. I asked “what for?” and he said “for being you”. It was another jolt in a week that felt like a roller coaster of ups and downs too fast to process. Our kids were overtired and obnoxious at a family party Sunday night frustrating me with strong dislike for them and the need to instill compassion and obedience, those qualities that are so easy to quickly pummel into them, right? Monday I got the call that we could bring mike in by 7 am Tuesday for that baclofen trial we had been waiting for. Waking early, preparing mike, getting settled in the car, looking for parking, wheeling him & the feeding pump through the parking lots, getting lost in our 6th new hospital in which to master the layout, enduring the slow admitting process before finally reaching a room & bed for the day exhausted us before we even accomplished anything. Mike’s cries drew every nurse on the floor to our doorway as 4 people transported him from wheelchair to bed. I reassured them that he would ultimately be fine, this level of pain & frustration was nothing new on a hard day.

I will confess my other shame of the day. Every hospital asks if you would like a chaplain to visit during your stay. We have felt so loved and supported by the body of Christ at every turn in our own personal day to day community I simply decline the extra help from a stranger. Later on we were visited by this guy and I assumed he was a hospital provided Christian encourager. (isn’t that a ridiculous job title I just made up?) I was too worn to notice, care, speak, respond. He gave us a prayer and I simply didn’t engage hardly at all. Poor mike just gets off the hook letting me carry all conversation all day. Then when I started paying better attention to what the guy was saying I find out he IS from our church in Naperville and I am a complete idiot not recognizing or thanking him for driving all the way out to this 40 minutes away hospital to care for us. He graciously left us and I sat in my own guilt. How convicting to be caught being so dismissive, uncommunicative. People think nice things about me for no good reason and now the secret’s out—I am a jerk. I am rude. Mike got sick of my obsessing and said he would beat me up later so I could stop now.

The drug stuck into mike’s spine didn’t magically make his limbs move but the physical therapist did say that she didn’t feel the muscles fighting against her efforts as she maneuvered his extremities. Mike said he didn’t feel any pain but he doesn’t usually feel pain all the time so we will have to see the impact once he gets the pump and the medicine on a daily basis. I was unsure at first whether it had worked because his tendons and ligaments still hold his limbs captive and stiff. It was a slow sick feeling that began to creep into my gut as I watched her try to stretch his tight limbs. But I could see some looseness in certain tiny ways—his wrists had greater range, his weaker eye was able to open wider. She gave the green light for him to get the pump with the assessment that it could help along with intense therapy. We had to wait until the drug had worn off before we could leave & all hospital discharges go slow. Our hospital visit lasted 11 hours. It ended with good news but we were too numb, overwhelmed or tired to care much. And Wednesday was a mess of fights between us as we disagreed on how mike needed to approach his exercises. We both get angry and resort to inappropriate responses that shame me. So that brings me back to the welcome I got this morning from mike. He was on the edge of tears as we just felt the week’s weight catch up to us. Sometimes our gratitude is oddly enough as overwhelming as the struggles. It is wearying to be so thankful for so much. I think I do feel spent partly from just remembering that our marriage is a blessing, that mean words can be covered by grace, that we never deserved someone’s prayer but they will drive far and get snubbed just to offer it up. I opened 3 days worth of mail today and found the receipt of a $2000 anonymous deposit made to our account. Where do you put all that thanks? I am left with only the identity of our Redeemer who loves infuriating children, vulgar spouses, and cranky situations simply because He is So Worthy. So He is the only one I have to praise, glorify and ultimately rest in.
This is a whole lot of rambling messiness to share. People say they like honesty. Hopefully God can make sense of my senselessness. Amen & grace & thanks, michelle

October 4, 2007 at 2:27 pm 14 comments

10/3/07 Test Passed !

Mike underwent a trial of administration of Baclofen to his spinal cord yesterday, and it was concluded that he would benefit from the placement of a permanent pump to administer a constant dose of the drug. No word, as yet, on when the surgical implantation will occur, after which the determination of the precise dosage best suited to Mike will require about a month of trials and close monitoring. Of course, physical therapy will need to resume as well, in order for the effectiveness of the pump to be fully seen. So, the test result was certainly positive in that Mike appears to be good candidate for “Intrathecal Baclofen Therapy” (ITB Therapy), but we have been cautioned against expecting too much too soon. Nonetheless, it is great to see Mike cleared to receive the pump, and the possibilities are exciting. More details when we have them. Thanks for watching over and and praying over this situation.

October 3, 2007 at 7:41 pm 6 comments

10/1/07 Baclofen Preliminary Testing Tomorrow !

Just got word that Mike will undergo an 8-hour test tomorrow to determine the effectiveness of the administration of Baclofen (hope I’m spelling that correctly) to his spinal cord through a spinal tap. If everything goes well, then a pump designed to administer the drug on a constant basis will be surgically implanted some time thereafter.

As you may recall, the Baclofen should relieve Mike of the muscular spasticity that has plagued him for some time, and has impeded his physical therapy. This kind of drug therapy has been 86% successful in cases of traumatic brin injury, so please be in prayer that this will work for Mike. We will update as soon as we have the results.

Thanks.

October 1, 2007 at 2:57 pm 6 comments


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