Inpatient Rehab, Skilled Nursing & Back to the Hospital
July 14, 2015 from Immanuel
Thank you for your continued prayers for Mike and the Francis family. God opened the way to the Brooks Center in Daytona Beach and Mike was successfully moved there on Friday, July 10. Since then there have been various assessments performed and many wonderful people are helping with Mike’s recovery. The daily therapy schedule is rigorous and intentional so that maximum healing will be achieved. Mike is now able to eat real food, which he really enjoys, so the feeding tube should be removed soon.
Your prayers are invaluable and a continued source of encouragement for Maria and the family. Please keep the following items in your prayers:
- For Mike (and Maria too) to be able to sleep and awaken physically refreshed each day, ready to tackle each day’s special challenges.
- For wisdom for the medical staff as they evaluate and treat Mike’s medical condition.
- That the therapy Mike receives would result in great progress.
- For the family, that they can be a blessing and encouragement to his caregivers.
- For Maddie that she would find housing in New York City before August 1 (right place, right people, right price).
“Oh, taste and see that the Lord is good! Blessed is the man who takes refuge in him! Oh, fear the Lord, you his saints, for those who fear him have no lack!” Psalm 34:8-9
July 19, 2015 from Maria, replying to a friend
Thank you so much. This has been the hardest week since the first one. Mike has been very, very agitated and combative, something they say goes with level 4 of the Ranchos scale (http://waiting.com/rancholosamigos.html or see elsewhere on google), last night lying in bed and screaming on and off until 2 am. An unflappable church friend is coming tomorrow afternoon if it’s going OK enough, but we’ll see how it goes.
You’re right about mixed emotions with Maddie leaving [moving to New York] and Lydia soon after. People in the church have gathered around to help Maddie, and Lydia is pitching in like a pro. On top of this, we had issues with two cars and an air conditioner in the last few days, so we are spread pretty thin. The Lord has supplied our needs one by one, but we are tired.
July 23, 2015 from Maria to the inner ring
Beloved prayer warriors,
Today is the 60th day of this journey, and it hasn’t been an easy one. Mike has been particularly agitated and combative today (see more below), pulling out his feeding tube, among other shenanigans. Overall, we continue to see God at work in and through Mike’s situation, so we know you are praying and our Father is answering. For this we are more grateful than words can say. This update contains a few more specifies than what has been widely shared at Immanuel.
We have been at the Brooks Center for Inpatient Rehabilitation for almost two weeks, and aside from the first days after the Mike’s incident, these have been the hardest. On the one hand, the fact that Mike has survived and come this far is nothing short of miraculous. On the other hand, we are confronted with the reality of how far he has yet to go, with no assurance of where or when the journey to recovery will end. An anoxic brain injury such as his is more severe than, for example, a traumatic brain injury that impacts only a specific region. Though we see small progress daily, his assessments remain at “Total Dependent” on all things physical, and Mike is considered a level 4 (“Agitated-Confused”) on the Rancho Scale of Cognitive Function (this link is helpful: http://waiting.com/rancholosamigos.html). The agitation interferes with therapy, so Mike’s progress is not what the insurance company wants to see, according to the case manager. She told me this morning that the next step down in residential treatment, Neuro Restorative in Avalon Park, is not covered by Blue Cross, and Mike’s behavior is too volatile at this time for a nursing home.
And so we remind ourselves yet again that all our days were ordained before there was even one, that our God will supply all of our needs according to His riches in glory in Christ Jesus, that we are worth more than the birds of the air that our Father feeds, that He has not and will not leave or forsake us, that God is working all things together for good for us, that He did not spare His own Son and will also freely give us all things, and that goodness and mercy are following us today and every day.
More than ever, our family needs your prayers for these concerns (and more):
- Provision of insurance coverage for a longer-than-normal stay here at Brooks and/or another neuro-specialized residential option
- Strength and ability for Mike to engage in and benefit from therapy and make significant progress
- Healing/recovery of Mike’s brain (progress on the Ranchos scales), especially to move beyond this stage of great agitation and confusion
- Thanksgiving for the wonderful therapists and medical staff here at Brooks, for their skills, wisdom, and care for Mike. May the Lord guide them, supply all their needs, and give them joy as they serve Mike. Those who work with Mike most often include Amber (OT), Mike and Matt (PT), Shavonne (speech), Ginny (cognition), nurses and CNAs Nicole, Walter, Greg, Richard, Abby, Beverly, Allison, Charlene, Maria, Rebecca, as well as Dr. Perez and Dr. Geiss.
- Wisdom for the doctors: aside from his heart and his brain injury, Mike is being treated for smaller medical issues, and they are constantly adjusting his many, many medications.
- Madeline as she makes final preparations to move on August 1 to New York to be part of the City Campus team for Reformed University Fellowship. She still needs housing (though has temporary accommodations), and this is a big move that Mike had planned to accompany her on. This is a particularly bittersweet moment for our family.
- Mike and all of us affected by his situation: to run with endurance the race set before us, fixing our eyes on Jesus, and not growing weary or fainthearted.
Grateful for your company and encouragement as we walk this journey by grace,
Maria
August 1, 2015 at 11:04 p.m. from Maria
“Even to pray is an act of hope.”
So says a pencilled note in my Bible next to Psalm 22:19 from when Mike preached on this psalm—But you, O LORD, do not be far off! O you my help, come quickly to my aid.
Thank you for your ongoing prayers on Mike’s behalf, especially in response to the last email. Here at Brooks Rehab, Mike had a slightly better week in terms of agitation and participation in therapy. He moved from “Total Dependent” to “Maximal Assistance” in eating, his first score upgrade on the “Functional Independence Measure” board. They have continued to make adjustments to Mike’s medications and address other medical issues, all of which have mostly impaired Mike’s ability to engage in therapy. They expect that our insurance will allow him to remain here until August 14 (a total of 5 weeks, though Mike could surely benefit from at least 5 months here), thereafter moving to a nursing facility that will include therapy on a smaller scale.
This morning we said a teary goodbye to our New-York-bound Madeline. Many of you have prayed and given lavishly. I stand in awe at the goodness of God to orchestrate so many details in His plan to use Maddie to bring the gospel to students in New York. Thank you for the part that you have played!
I also want to give a big round of applause to the family of God. As the weeks roll on and we have car trouble and household needs and miss Mike’s wise counsel for hard decisions, the people of God have stepped up in big and small ways, many of which are unseen by me. Thank you, one and all, for the tangible and intangible help and encouragement that come our way. The biggest help of all is your prayers.
Please continue to pray—as an act of hope, a sacrifice of praise, and a witness before the hosts of heaven.
- Lord, do not be far off from Maddie and come quickly to her aid, especially during her first days in New York.
- Lord, do not be far off from Mike and come quickly to his aid to help him walk this week and be productive with his therapy, to calm the agitation and confusion, and to heal his brain. He hasn’t walked for more than two weeks.
- Lord, do not be far off from Mike’s doctors, therapists, and nurses and come quickly to their aid as they make choices each day that would advance his recovery.
- Lord, do not be far off and come quickly to our aid as we seek to find the next care facility for Mike after Brooks. Please be at work in the hearts of all who make decisions regarding insurance and length of stay to provide what Mike needs.
- Lord, do not be far off from us and come quickly to our aid to help Lydia, Luke, and me with caring for Mike and fulfilling other responsibilities (such as Lydia’s internship and photography commitments and my work at Stetson).
Between the difficult days we’ve had, the less-than-expected progress, and the Brooks neuropsychologist’s uncertain outlook for Mike’s future, it is sometimes hard to remain hopeful. It was wonderful to find that scribbly note in my Bible and be reminded, “Even to pray is an act of hope.” After all, Paul tells us that hope that is seen is not hope, but if we hope for what we do not see, we wait for it with patience. I am learning that the best way to hope is to remind myself of what is unseen but most real, the character of our mighty God as He works for us, keeps all His promises, and listens to the cries of His children. Besides Psalm 22:19, I invite you to join me in praying Psalm 138:8 for Mike, our family, Immanuel, and all who are impacted by this event: The Lord will fulfill His purpose for me; Your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.
Safely in the Father’s hands,
Maria for the whole family
August 8, 2015 from Maria
Greetings from the 9th floor of Halifax!
Since my last email, Mike has walked every day with the physical therapists (plus a few renegade steps at night), and Maddie has found housing in New York as of September 1. So far her transition has gone well, including front row seats for Seth Meyer and a City Campus staff meeting in Tim Keller’s office. Mike’s agitation and medication adjustments have been somewhat less this week, and his participation in therapy is improving. This is all progress in the right direction, and we thank God for these merciful provisions and answers to prayer.
Looking ahead, a quick stop yesterday at one of the available options for skilled nursing left me pretty concerned. I can’t imagine Mike independent enough in a week or two to move to a nursing home, and I’ve been told he would likely be sedated both for his safety and to not disturb other residents, which is the kiss of death for brain recovery. We have seen the Lord answer prayer and provide for our needs every single one of our 76 days thus far, and since nothing is too difficult for God, please join me in praying for (1) astounding progress for Mike, (2) extra time here at Brooks, and (3) wisdom and timing for the next transition. Would you also ask our Father (4) to make a way for me to move home to be with Luke by the time Lydia goes back to GWU (8/22) and (5) for me to begin working more?
I love how the theme of the Lord’s deliverance from trouble runs throughout Psalm 34, even as it calls us to praise the Lord continually. It’s good to remember that our job is to magnify the Lord (praise makes Him bigger in our perceptions) and His job is to rescue us. He uses His people, among other means, to accomplish this … all of you, your prayers, and many other helps. Thank you!
Still grateful for your partnership on this journey,
Maria for the family
August 15, 2015 from Maria
Sisters, brothers, friends–
Oh, how I wish I could say that the 12th week of #mikemarathon held great strides forward, but frankly, it has been another challenging week. Meds have changed again, agitation and combativeness are up, and I was told on Thursday that since Mike has not made any measurable progress in therapy, he will be discharged this Wednesday, August 19. The case manager is inquiring with Majestic Oaks (John Knox Village) and Good Samaritan Florida Lutheran to see if they will take Mike for sub-acute inpatient rehab.
We are not the first to be faced with a seemingly impossible situation. One of my favorite chapters of the Bible is 2 Chronicles 20, Jehoshaphat’s prayer and God’s response to a seemingly hopeless situation. In short, Jehoshaphat prays, “O Lord, God of our fathers, are you not God in heaven? You rule over all the kingdoms of the nations. In your hand are power and might, so that none is able to withstand you. … O our God, will you not execute judgment on them? For we are powerless against this great horde that is coming against us. We do not know what to do, but our eyes are on you.” God replies, “Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God’s. … You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the Lord on your behalf, O Judah and Jerusalem.’ Do not be afraid and do not be dismayed. Tomorrow go out against them, and the Lord will be with you.”
Indeed, we do not know what to do, so we too need to fix our eyes on the Lord. We are powerless to change Mike’s brain’s response to medication, or the pace or extent of his recovery, or to dictate insurance policies, but we are the children of a God who does all that and much more, including hear our cries. We need not be afraid or dismayed; the Lord will also be with us when we go out against adversity.
Not an hour goes by that I am not reminded of the great cloud of witnesses who are journeying with us. You encourage and sustain us in so many ways, and I will never have sufficient words for my gratitude. Thank you again for all of your prayers, including these:
- That we would all fix our gaze on Jesus, the author and perfecter of our faith, and that we would not give in to the temptation to be afraid or dismayed
- For Mike, that his behavior would stabilize, that the right combination of meds could be found, and that the fruit of the Holy Spirit who still indwells him would be evident (love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control)
- For time and place of Mike’s next move, for the right facility to accept him, for ease of transition
- For progress with therapy (walking independently, transfer from bed to wheelchair, eating, grooming, following instructions, etc): whether in acute or sub-acute rehab, this is the criteria the insurance company looks at when deciding to continue paying (there is no cap on inpatient rehab, but there is no coverage at all for long term care)
- For the back-to-school transition for all of us: Lydia during her last week at home; Luke as he gears up for a new set of classes; Maddie as she starts to meet City Campus students; and me as work at Stetson requires more of my attention
- For coordination of an expanded circle of helpers to sit with Mike, for them to have wisdom and joy in their time with Mike
- Great thanksgiving for the Lord’s mercies to supply all our needs, moment by moment, most of all that Christ’s sacrifice for us has met our ultimate need for peace with God
May the Lord bless and keep you, make his face to shine on you and be gracious to you, lift up his countenance upon you, and give you peace,
Maria for the family
August 18, 2015 from Maria to Immanuel leadership
I got word this afternoon that plans are going forward to move Mike tomorrow (!) to Florida Lutheran. I stopped by on my way to Stetson, and Lyle Wadsworth [Mike’s GP] happened to be there discussing Mike’s case. He very kindly came to see Mike this afternoon and met with Dr. Geis, the main rehab doctor here. They agreed that Mike could make the move.
HOWEVER, I am every bit as concerned now as I was when I visited the other facility. They don’t have hospital beds with rails and alarms, and they were planning to put him in a room with another man. I have no idea how they expect him to be safe. I also don’t think they have any experience with the Life Vest external defibrillator. When I asked if someone would be in earshot, since it regularly false alarms and someone needs to be able to turn it off within 15 seconds, she looked a bit worried. I talked to the nurses here tonight, and they were concerned enough about Mike’s safety to call the case manager at home. I texted Lyle about the bed situation. They probably don’t have much experience with brain injuries, especially one like Mike’s, and this worries me as well.
OK, so I kind of went on and on there … could you please pray that necessary arrangements could be made and that I would have wisdom and words to use to help make this new situation work? We are only authorized for 10 days, so if there’s no forward progress, it will be the end of what insurance pays for.
As an aside, though we will be back in the neighborhood and have a lighter therapy schedule, we need some time to adjust before receiving IPC visitors, in case people ask. I am thrilled about being back in DeLand!
Once again I look ahead at a situation that is too difficult for me, but not too difficult for the Lord. Would you join me in asking the Lord to provide all that Mike needs to continue to recover?
Thanks, family–
Maria
August 23, 2015 from Maria to a nurse/administrator friend after the move to skilled nursing
Dear Libby,
I am doubtful about insurance continuing to pay much beyond this week and wonder if you can help me think through how we would know how much care we need to hire and how to go about doing that. I am envisioning a hospital bed in the living room for Mike. How to work out a shower is a bit of a puzzle, but he’s only been getting those weekly. It’s the physical part of changing him or getting him up when he chooses to be dead weight that seem the most challenging. Oh, and the real nurse stuff, like dressings on the super-pubic catheter and its care and maintenance. I’m pretty familiar with his meds and usually it’s me who feed them to Mike anyway. I also handle the grooming and clothes changes (need help with pants).
I could envision something like 8:30-8:30 CNA-level help, but am eager to know what you think.
Thanks a million for all your care, support, and prayers,
Maria
August 24, 2015 from Maria
Beloved prayer warriors,
Today marks 14 weeks since Mike went out on a bike ride that has changed all of our lives. We have seen the Lord provide above and beyond all we could ask or imagine on every one of these 91 days, and all of you and each of your prayers are part of this amazingly gracious provision. Thank you.
We appreciate your prayers for us as we moved from Brooks to skilled nursing/sub-acute rehab and as Lydia moved back to Washington DC. Teary farewells, new places and routines … all have me thinking about home. To be honest, this week I have cried the most about just wanting to go home. Mike would surely counsel me to talk to myself instead of listening to myself, and so I have been thinking about how God is my refuge and strength and how we dwell in the shelter of the Almighty regardless of the color of the walls we see. At the same time, I remember that our God is Immanuel, God with us, that His Spirit makes His home in His people, in me and in Mike and in our children, and that the Lord’s angels encamp around us. Some day soon I hope to have a conversation with Mike about how this works, we living in God and He living in us, and I’m sure he will remind me that it’s all there in the Gospel, that this co-habitation (marriage, really, but that’s another topic) only occurs because the Word became flesh and dwelled among us and took our sins in exchange for His righteousness. And together we will look forward to our heavenly home. Come quickly, Lord Jesus.
In the meantime, we continue to pray and to be grateful to all of you who are helping us in this way. In particular,
- Thanksgiving for the many, many people who are caring for us along the way: besides the prayer warriors (you!), the family of God and friends who supply countless practical needs, and the medical and therapy staff in the four facilities in which we’ve lived.
- Planning for the future: our attorney friends have arranged for me to see a lawyer specializing in disability, estate planning, and elder law on Wednesday morning. Please pray for my preparation (the assembly of an astounding number of documents), the actual meeting, the elders who will accompany me and the plans being made.
- Mike’s continued progress: over the weekend, he joined in singing and used a few names, which is real cognitive progress. However, the work with new therapists in the areas of functional mobility has not been spectacular, and I am doubtful that insurance will continue to pay much longer. Please pray for plans for the future on this front as well. It may come as no surprise that I want to bring Mike home.
- Back to school adjustments for Lydia at George Washington, Luke at Daytona State, me at Stetson, and Maddie as an RUF intern with City Campus. Students are arriving at the Manhattan campuses that she and the team serve. May we all be salt and light as we show the love of Christ in both new and established relationships.
- For Mike’s full and complete recovery.
Because of His great faithfulness,
Maria for the whole family
August 26, 2015 from Maria to friends, “Quick update post attorney meeting”
Thanks for your prayers today. After almost three hours with the attorney, our heads were about to pop. Stewart Timmerman and John Warren gave our family a huge gift of cheerfully giving so much time and wisdom to accompany me. I am equally grateful to Deren for staying with Mike. We learned about:
- Guardianship: a significant and expensive legal process with little practical benefit for our current situation;
- Medicaid (need-based): since it covers little for home health, which is what we want for Mike versus a nursing home or assisted living, this also doesn’t seem worth the significant legal maneuvering and expense to obtain;
- SSI disability (not need-based): will apply through Nation law firm;
- Other things like estate planning and establishing a trust and/or foundation: will pursue as needed through Lowndes, where we have existing relationships since Mike once worked there.
For the very near term, our plan is to keep Mike where we currently are for as long as insurance will pay and to start to lay the groundwork for him to move home when our coverage runs out. There is no cap on inpatient rehab, and we continue to pray that Mike will make great gains cognitively in order for the therapies to be most effective–indeed, for a full and complete recovery.
Once again, I will lay my head on the pillow tonight with a heart full of gratitude for the generous care of our heavenly Father.
With thanksgiving for all of you and your care for us,
Maria
August 27, 2015 at 9:11 p.m. from Maria to the nurse friend who often stayed with Mike while Maria worked
Needing prayer. Worst day of all. UTI [urinary tract infection] has MERSA in urine. Please pray for the antibiotic to take effect rapidly. Delirium meant seeing people, and I was a strange man who needed to be killed for most of the day, even with a lot of sedatives given. Staff’s attitude is to leave us alone. No telling how much MERSA I’m exposed to. Please pray that I will stay well.
Not sure how to plan for you and Glen tomorrow. Let’s see how night goes.
August 28, 2015 at 11:52 p.m. from Maria
Dear fellow travelers,
Tonight we lay our heads down at yet another address, as Mike was admitted to the hospital today for a urinary tract infection that has grown beyond the scope of the nursing home to treat (MERSA in the urine). As I type, they have just finished giving a third type of antibiotic, this time intravenously, and are about to come with the evening meds that will introduce still another one or two to help address the delirium and agitation that have accompanied this UTI. We continue to be grateful for all those in the medical profession who care so well for Mike.
Please pray:
- Still more for healing—for this UTI as well as for Mike’s brain injury
- For our transition back to the nursing home, where Mike is not the typical little-old-lady patient
- For a rich blessing on all those who care for Mike, those who volunteer to sit with him as well as the medical professionals
- For next steps both with legal and financial planning and with logistics to be able to bring Mike home
- For the Francis family and the Immanuel family, that we would walk faithfully as we continue to find our “new normal” and face the challenges of a new school/church year.
This week Anne Lamott reminded me of a WWII story that you may have heard:
After the end of WWII, in the refugee camps for orphans and dislocated kids, of course the children couldn’t sleep! But the grown-ups discovered that after you fed them, if you gave them each a piece of bread just to hold, they would drift off. It was holding bread. There was more to eat if they were still hungry. This was bread to hold, to remind them and connect them to the great truth–that morning would come, that there were grown-ups who cared and were watching over them, that there would be more food when they awoke… We are each other’s holding bread.
I love this. I thought of the many ways that the Lord has supplied holding bread for comfort every one of these 96 nights, especially through people, near and far, known and unknown, seen and unseen, who do and pray and give. YOU are our holding bread. As I go to sleep tonight, my holding bread is the memory of people who got us through today’s transition, cooked and delivered the food I ate this week, loved my children, helped with the legal issues, covered extra bases at work, texted and (e)mailed encouragements, and on and on. It’s only a small step from there to think about the true bread of life and coming to Him that we might not hunger or thirst, because in Christ our greatest needs are met.
There’s so much more I’d like to say on the topic of bread, but it will wait for another time. In the meantime, thank you again. Your prayers sustain us.
Glad for tonight’s holding bread,
Maria for the family
August 29, 2015 from Maria, replying to a friend
You’re right about that – when I don’t know where or when we’re going, it makes me anxious. I have often thought how much easier all of this would have been with socialized medicine. Even now, they will increase Mike’s meds to be sure Mike behaves himself at the nursing home. I am not at all sure how this will go, and they threaten to not take him back after being violent with the staff (violence due to delirium, delirium due to UTI, UTI run amuck because meds not changed after MERSA identified … seems like there should be training and understanding, but I guess not). I’m doubtful that he can participate in therapy when he’s overmedicated, so I am feeling more and more like giving up and bringing him home. Hopefully he can make a bit more cognitive improvement first. I could go on and on … better if we could do it in person. Can you check with me in a week about visiting? Or maybe Jesus will come back first, in which case we’ll have all the time in the world to hang out!
September 4, 2015 from Deren Harper to Maria, “Moving Home”
Brothers & Sisters,
As most of you are aware, the next stop for Mike will be home. After prayer and discussing Mike’s care needs with Physicians (Lyle), nurses (Libby, Kathy and others), the Francis children and others, Maria has made a decision for Mike to come home. She is working with the case manager at Deland hospital to make arrangements for a hospital bed, other supply needs and having nursing care provided at the home. The ideal plan will be for Mike to remain at DeLand hospital until the needed infrastructure and nursing care are in place.
Although we are working without an exact time frame and I would imagine that the holiday weekend may have some impact, the move home will be soon. In the short term here is an attempt at identifying the needs and organizing them:
[A detailed list followed which included: Preparing Home: (John/Paul), Medical Supplies (Kathy/Libby), Home Supplies (Kari), Medical Care / Mikesitting (Kathy).]
September 5, 2015 from Maria to church friends
Hello, miracle workers (and if I’ve forgotten someone, please forward)!
I got home late last night and couldn’t believe the transformation. I was on the phone with Lydia when I pulled in and was able to show her via FaceTime. Wow, wow, wow. I think you’ve thought of everything. I went to bed again last night with a heart full of gratitude and hands full of holding bread.
Quick update: it’s most likely that we won’t move home until tomorrow, since the nursing assessment can’t happen until Monday. Kathie (Mike’s sister) and her family are headed here from the airport as I type. It’s just wonderful that their visit coincides with this milestone.
Thanks a million. My colleagues delivered the stuff from Florida Lutheran last night, so I know your amazing kindness is already been a witness to the watching world.