A lot of things happen when I am not at the hospital and sometimes I get really great surprises when I get there. Last Friday I found Gary sitting in a chair, but not just any chair. He had been provided a motorized chair that he is able to operate by moving his head the technology is incredible to me. Saturday we checked out a pager and went outside with my brother Charlie. I guess he needs the pager just in case he decides to make a break for it, but we are pretty sure the battery would die before he got too close to downtown Neenah. The chair affords him some mobility but more importantly a little sense of control which I know he needs so badly. He can't scratch his own nose but he can choose to go visit a staff member or another patient on the unit, what a blessing that is.
I talked to a woman I know who had GBS 8 years ago and she said to me "you know, GBS means getting better slowly". And I do know that because no one will let you forget it, lest you would become discouraged about the slow progress. We choose to focus on the "getting better" part of GBS. Gary's recovery is progressive, building small sucessess one on top of another. Sunday Gary was not able to turn on the small toggle switch that powers up his chair, but yesterday he did. We are celebrating every little success. If sheer will and determination was all it took for Gary to get beyond his nerve damage and weakness he would skip out of rehabilitation tomorrow. Sadly, it is not so he presses on in faith and confidence that God has not left him nor forsaken him.
I struggle every year during this season. I am quite sure I was not really meant for Wisconsin winters and February is especially brutal for me. This year is no different and as badly as I do not want to sink into the darkness, I find myself there again. I read my devotional this evening after work and unruly dogs and garbage that needs to be taken out and yada yada. I am so sorry I waited because I am convinced that these words which I know were meant for me today would have reminded me of the place I really want to be on this journey, completely dependent on God. Jesus speaking..."You Need Me Every Moment....there are pitfalls you must be on guard against: self-pity, self-preoccupatuion, giving up. Your inadequacy presetns you with a continual choice-deep dependence on Me, or despair."
I wish I could say that I have not had bouts of self-pity and self-preoccuopation since Gary's illness began January 15, but that would not be true. I know that it is only in that deep dependence on God will I ever be able to continue to move forward and continue to climb this mountain that is before us.
We are so blessed and thankful for the crowd of people who are at the base of the mountain cheering us on in the form of prayers, kind and encouraging words and blessing us richly with gas cards and monetary gifts.
In sincere gratitude to God and those who He has used to bless us: I remain relentless after Him.
Monica
Wednesday, February 22, 2012
Monday, February 13, 2012
Rehab
Gary was transferred to the Neuro Rehab unit on Thursday 2/15. There is a new Sheriff in town on Rehab and it is not Gary! I should probably say there are new Sheriffs in town and they are the entire Rehab staff. He has a board on the wall in front of him where they list his schedule for the day which includes Physical Therapy, Occupational Therapy, Speech Therapy, Psycho Therapy (just kidding). I know he is tired just from reading what he will be doing during the day but this is the boot camp he needs to get him moving in the right direction. It is hard to see him looking so tired all the time but this is one of the goals we press on toward. He still has the trach and the feeding tube but don't think those will stay in too much after this week. I have had no confirmation on that from the Doctors but hey might as well be positive.
Friday night we ate dinner as a family in the rehab dining room thanks to Cathy Gast. We kind of took over the dining room, but all the other patients had already eaten so we didn't feel too guilty, but it was classic Mueller family day dining. Loud, obnoxious and filled with laughter and love. Friday night was the first time Gabe was able to see his Baboo since January 16th. I don't know what was harder to see, Gabe wondering what was going on with his Grandpa or Gary not being able to stretch out his arms to hold Gabe. We are not discouraged, because we know that it is simply a matter of time before that will happen. We are confident in God's promise that he has plans for Gary's life, plans to prosper him and to give him a hope and a future(Jeremiah 29:11). I love that all of God's promises are Yes and Amen (2 Corinthians 1:20). What an incredible foundation to stand on when it could feel like our world is crumbling.
Dear Reader, we have seen God's faithfulness over and over again throughout these last 4 weeks (yes it has been 1 month today), and I had the incredible blessing of being able to pray for one of Gary's ICU nurses who has the chronic form of GBS. She has relapses and was a patient on the same unit with Gary and then in Rehab. I spent several hours with her over the weekend. It is hard to describe, I know God is moving in her life and he let me come along. AMAZING!!!!
I am trying to think of the places Gary and I have spent Valentines Day over the 30+ years we have been together and frankly not one is popping into my head. I am quite sure I will always remember the Valentines Day we will spend together on the Neuro Rehab floor at Theda Clark Hospital tomorrow night. There will be no steaks or dinner music, but I look forward to spending the evening with him. Hope he can stay awake!
Treasure your time with your loved ones tomorrow and everyday, the reality is we are not promised another breath. When you are breathing in and out, make each breath filled with love.
"Because of God's great love, we are not consumed". Lamentations 3:21
Relentless After Him,
Monica
Friday night we ate dinner as a family in the rehab dining room thanks to Cathy Gast. We kind of took over the dining room, but all the other patients had already eaten so we didn't feel too guilty, but it was classic Mueller family day dining. Loud, obnoxious and filled with laughter and love. Friday night was the first time Gabe was able to see his Baboo since January 16th. I don't know what was harder to see, Gabe wondering what was going on with his Grandpa or Gary not being able to stretch out his arms to hold Gabe. We are not discouraged, because we know that it is simply a matter of time before that will happen. We are confident in God's promise that he has plans for Gary's life, plans to prosper him and to give him a hope and a future(Jeremiah 29:11). I love that all of God's promises are Yes and Amen (2 Corinthians 1:20). What an incredible foundation to stand on when it could feel like our world is crumbling.
Dear Reader, we have seen God's faithfulness over and over again throughout these last 4 weeks (yes it has been 1 month today), and I had the incredible blessing of being able to pray for one of Gary's ICU nurses who has the chronic form of GBS. She has relapses and was a patient on the same unit with Gary and then in Rehab. I spent several hours with her over the weekend. It is hard to describe, I know God is moving in her life and he let me come along. AMAZING!!!!
I am trying to think of the places Gary and I have spent Valentines Day over the 30+ years we have been together and frankly not one is popping into my head. I am quite sure I will always remember the Valentines Day we will spend together on the Neuro Rehab floor at Theda Clark Hospital tomorrow night. There will be no steaks or dinner music, but I look forward to spending the evening with him. Hope he can stay awake!
Treasure your time with your loved ones tomorrow and everyday, the reality is we are not promised another breath. When you are breathing in and out, make each breath filled with love.
"Because of God's great love, we are not consumed". Lamentations 3:21
Relentless After Him,
Monica
Tuesday, February 7, 2012
IMU
Gary has been moved from ICU to IMU, Intensive Medical Unit, 2nd floor, room 266 and I do not have to pick up a phone,announce myself and ask for admittance to the unit. Probably doesn't sound like a big deal, but every time I walked out of ICU, even if just to get a cup of coffee I had to stand outside and ask for re admittance, I gotta tell you I was a little tired of this litany...pick up the phone...on the other end "ICU this is (whoever was answering the phone, many names)...me-"Hi this is Monica Mueller, my husband is in room 250, would you please ask his nurse if I am able to come back" other end- (heavy sigh) "let me ask"-waiting on the other end listening to piped in music-"ok come on in". Seriously the same thing 10 times a day for 21 days, that equals 210 times. I am over it.
Yesterday when I arrived at the hospital after work I found Gary in room 266 sitting up in bed eating something that I cannot honestly say I would ever see him eat, much less with a huge smile on his face...pureed chicken. He is not able to feed himself and quite frankly I imagine this to be an extremely difficult exercise for him it is a picture of what surrender looks like. Laid bare to what other people can and will do for you. I cannot help but think about this is what God wants from us in surrender to him. Completely trusting that He wants the absolute best for us, if we would only submit to his plan for our lives.
The nursing staff on this unit is as loving and caring as everyone we met in ICU and I had great peace when I had to leave there today, unable to return until Friday morning because of work.
He continues to need quite a few respiratory treatments through the day and the size of the trach tube was reduced today, moving him one step closer to actually having the trach removed.
He is very weak and I am asking for prayers specific to his strength returning as a result of repairing neurological systems. Anyone who has ever shook Gary's hand knows that he had a ridiculously strong grip, I know he is looking forward to the ability to shake hands again even with a normal grip!
He is very grateful for the prayers of the faithful knows well that the promise of God that "fervent, effectual prayers of a righteous man avails much".James 5:16
I woke up the other morning and decided I know what the definition of exhaustion is. It is waking up and wondering when you can go back to bed. I am there. Yesterday I walked into my office and work and just began to cry, my poor co-workers. I could not figure out why I was crying because we had such good news the night before. I just looked at them and said "I'm so sorry, I am just exhausted".
This morning I opened my devotional to Feb 7 (can that even be right???) and this is what I read "Come to me for rest and refreshment. The journey has been too much for you, and you are bone weary, do not be ashamed of your exhaustion." I cannot on any level imagine how anyone can deny the Sovereignty of God!!!! Somewhere in time, God anointed Sarah Young to write this days devotional for me...for this day.
Adonai.... Oh how he loves us!!!!
If you want to read the rest of this you need to buy "Jesus Calling" by Sarah Young.
In relentless pursuit of Him,
Monica
Yesterday when I arrived at the hospital after work I found Gary in room 266 sitting up in bed eating something that I cannot honestly say I would ever see him eat, much less with a huge smile on his face...pureed chicken. He is not able to feed himself and quite frankly I imagine this to be an extremely difficult exercise for him it is a picture of what surrender looks like. Laid bare to what other people can and will do for you. I cannot help but think about this is what God wants from us in surrender to him. Completely trusting that He wants the absolute best for us, if we would only submit to his plan for our lives.
The nursing staff on this unit is as loving and caring as everyone we met in ICU and I had great peace when I had to leave there today, unable to return until Friday morning because of work.
He continues to need quite a few respiratory treatments through the day and the size of the trach tube was reduced today, moving him one step closer to actually having the trach removed.
He is very weak and I am asking for prayers specific to his strength returning as a result of repairing neurological systems. Anyone who has ever shook Gary's hand knows that he had a ridiculously strong grip, I know he is looking forward to the ability to shake hands again even with a normal grip!
He is very grateful for the prayers of the faithful knows well that the promise of God that "fervent, effectual prayers of a righteous man avails much".James 5:16
I woke up the other morning and decided I know what the definition of exhaustion is. It is waking up and wondering when you can go back to bed. I am there. Yesterday I walked into my office and work and just began to cry, my poor co-workers. I could not figure out why I was crying because we had such good news the night before. I just looked at them and said "I'm so sorry, I am just exhausted".
This morning I opened my devotional to Feb 7 (can that even be right???) and this is what I read "Come to me for rest and refreshment. The journey has been too much for you, and you are bone weary, do not be ashamed of your exhaustion." I cannot on any level imagine how anyone can deny the Sovereignty of God!!!! Somewhere in time, God anointed Sarah Young to write this days devotional for me...for this day.
Adonai.... Oh how he loves us!!!!
If you want to read the rest of this you need to buy "Jesus Calling" by Sarah Young.
In relentless pursuit of Him,
Monica
Sunday, February 5, 2012
Progress!!!
Every day I go to the hospital I feel like I did every report card period when I was in Catholic school. In those days, they actually handed us the report card and trusted that they would end up in the hands of our parents. Four times a year, panic would rise up in me, did I do well or should I really have studied as some people suggested would be a good idea. Outside the room are essentially flags, each color meaning something to the staff. The green one says "vent weaning" on it and that is the flag I have been looking for to be indicated outside room 250. I know that if they were beginning to wean Gary off the the vent, the possibilty of him having to be transferred to a vent facility in Milwaukee was less likely. And even though the staff has not flown the green "vent weaning" sign, that is exactly what has happened (yay for good report cards). It has been a process since Friday, but slowly Gary has remained off the ventilator and when I last saw him this afternoon he had not received any ventilation for about 32 hours, receiving only moisturized oxygen through the trach tube. Yesterday they gave him a "passey muir" valve they are able to plug the trach tube with which allows him to speak. It is a little more difficult to breathe with it in so he needs to be pretty well rested to use it.
The other question looming on the horizon is where would he go when he is able to leave ICU. Seeing as how Milwaukee is mostly out of the picture, he has made great strides in his breathing, Rehab was the big question on my mind. Theda Clark has a Rehab unit, but unless he was completely off the vent and able to participate 3 hours per day in his own rehab, this was not an option and I was given resources to attempt to find a facility that would take our insurance. In my heart I want Gary to stay at Theda Clark, at least for now. So that has been kind of the thing that the staff has not wanted to commit to.
Today the Rehab Doctor came to visit him and talked to the nurses (who are really championing his cause), she looked at me and said "bring in clothes and shoes for him, he will need to be dressed everyday on the Rehab Unit.
Oh How He Loves Us!!!!!
Not exactly sure when that will be, but it he should be out of ICU soon., it has been 3 long weeks .The staff has been outstanding and loving and it will be hard to build relationships with the new staff we will meet, but I believe God's love, faithfulness and goodness was demonstrated to so many people we came in contact with these last 3 weeks, and I know it will continue. Cary, a very sweet and dedicated ICU nurse who has been Gary's primary care nurse so often during his stay told me once she returns from vacation she intends to go find him wherever he is.
Thank you all for pounding heaven for Gary's recovery, we are unable to adequately describe just how thankful we are. And we are thankful for all the faithful friends who are willing to share this difficult time by visiting and trying to direct our attention elsewhere even for a little while. Thank You Bretta for being able to read lips so well!
As Always,
Relentless After Him
The other question looming on the horizon is where would he go when he is able to leave ICU. Seeing as how Milwaukee is mostly out of the picture, he has made great strides in his breathing, Rehab was the big question on my mind. Theda Clark has a Rehab unit, but unless he was completely off the vent and able to participate 3 hours per day in his own rehab, this was not an option and I was given resources to attempt to find a facility that would take our insurance. In my heart I want Gary to stay at Theda Clark, at least for now. So that has been kind of the thing that the staff has not wanted to commit to.
Today the Rehab Doctor came to visit him and talked to the nurses (who are really championing his cause), she looked at me and said "bring in clothes and shoes for him, he will need to be dressed everyday on the Rehab Unit.
Oh How He Loves Us!!!!!
Not exactly sure when that will be, but it he should be out of ICU soon., it has been 3 long weeks .The staff has been outstanding and loving and it will be hard to build relationships with the new staff we will meet, but I believe God's love, faithfulness and goodness was demonstrated to so many people we came in contact with these last 3 weeks, and I know it will continue. Cary, a very sweet and dedicated ICU nurse who has been Gary's primary care nurse so often during his stay told me once she returns from vacation she intends to go find him wherever he is.
Thank you all for pounding heaven for Gary's recovery, we are unable to adequately describe just how thankful we are. And we are thankful for all the faithful friends who are willing to share this difficult time by visiting and trying to direct our attention elsewhere even for a little while. Thank You Bretta for being able to read lips so well!
As Always,
Relentless After Him
Wednesday, February 1, 2012
Need to Breathe
I have to admit the first time someone mentioned that Gary would need a tracheostomy I just imagined that as some kind of "sentence" but it has been sweet relief for Gary, even though he still is unable to speak. I had no idea how difficult reading lips was and we are finding out that so many sounds are formed in a very similar fashion. We joked about the fact that it is difficult enough to do this lip reading thing but then when one of the lips is concealed by a big, unruly mustache it makes it nearly impossible! Anyone who knows how Gary feels about his facial hair will be surprised when I tell you he asked me to trim his mustache. Me? " I don't know nothin' about trimmin' no facial hair". Ever the consummate coward I asked Dana (one of our daughters)to do it and she actually did a very good job. One more item for the resume' Dana.
We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Have I mentioned yet that I have kind of a love hate relationship with the neurologists (plural,we are on the 3rd one). I love that they are brilliant and taking wonderful care of Gary, I hate that I cannot really connect with them on any kind of human level. Tuesday the neurologist of the week informed me that if Gary did not start making strides in breathing on his own he would be transferred to a "vent facility" in Milwaukee. Yikes that was compassionate. I understand that Gary is not in critical condition but he didn't even offer to buy me a cup of coffee to help the medicine go down.(Mac, seriously think about pediatrics).
We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Yesterday, he was off the vent, receiving only humidified oxygen for about 30 minutes. And he was off today a substantial portion of the day sat in the chair for a couple hours 2 times. This is a big day for someone with a severe case a GBS and he is pooped, really pray he will sleep well tonight.
Tuesday was a rough day, not to be redundant but the neurology staff does not really subscribe to "feel good" medicine. Truthfully, I don't need much, dangle a carrot in front of my nose. It doesn't have to be the giant Bugs Bunny variety of carrot, I will settle for a baby carrot, even those shaved down, less than a half of a bite carrot. I don't need much.
When I read that I realize that I don't even need a mini carrot from a neurologist to give me hope, I am in close communion with the giver of all hope, God.
I tell people all the time that I am not looking out much into the future or what that is going to look like, all I am doing is the "next thing". Truth is I probably say it 100 times a day. Today, in my devotional from Sarah Young, the first sentence is "Follow me one step at a time, that is all I require of you". These daily reminders that God has not blinked, we are still on his radar. The truth is, it is NEVER God who falters, it is me.
Last night before I went to sleep Kara (daughter by marriage) called after she and Christian visited with Gary. I know she could hear the exhaustion is my voice as I told her I just wanted to sleep. This morning she sent me this text: "Woke up in the middle of the night and felt compelled to pray for you. numbers 19:23 came to mind. A promise I have relied on for years...God is not man that He should lie, nor human that he should change His mind". And Bam folks there it is, the complete truth of how we can stand on God's promises to be faithful and present and for us and infinite other divine characteristics. EL ROI "The strong one who sees."
"Because of God's great love, we are not consumed" Lamentation 3:22
I Remain,
Relentless after Him
We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Have I mentioned yet that I have kind of a love hate relationship with the neurologists (plural,we are on the 3rd one). I love that they are brilliant and taking wonderful care of Gary, I hate that I cannot really connect with them on any kind of human level. Tuesday the neurologist of the week informed me that if Gary did not start making strides in breathing on his own he would be transferred to a "vent facility" in Milwaukee. Yikes that was compassionate. I understand that Gary is not in critical condition but he didn't even offer to buy me a cup of coffee to help the medicine go down.(Mac, seriously think about pediatrics).
We have asked specifically for prayer regarding Gary's breathing. They have done some breathing trials, turning the ventilator to a cpap function which requires him to initiate and continue the breaths, but the vent provides a "boost". Yesterday, he was off the vent, receiving only humidified oxygen for about 30 minutes. And he was off today a substantial portion of the day sat in the chair for a couple hours 2 times. This is a big day for someone with a severe case a GBS and he is pooped, really pray he will sleep well tonight.
Tuesday was a rough day, not to be redundant but the neurology staff does not really subscribe to "feel good" medicine. Truthfully, I don't need much, dangle a carrot in front of my nose. It doesn't have to be the giant Bugs Bunny variety of carrot, I will settle for a baby carrot, even those shaved down, less than a half of a bite carrot. I don't need much.
When I read that I realize that I don't even need a mini carrot from a neurologist to give me hope, I am in close communion with the giver of all hope, God.
I tell people all the time that I am not looking out much into the future or what that is going to look like, all I am doing is the "next thing". Truth is I probably say it 100 times a day. Today, in my devotional from Sarah Young, the first sentence is "Follow me one step at a time, that is all I require of you". These daily reminders that God has not blinked, we are still on his radar. The truth is, it is NEVER God who falters, it is me.
Last night before I went to sleep Kara (daughter by marriage) called after she and Christian visited with Gary. I know she could hear the exhaustion is my voice as I told her I just wanted to sleep. This morning she sent me this text: "Woke up in the middle of the night and felt compelled to pray for you. numbers 19:23 came to mind. A promise I have relied on for years...God is not man that He should lie, nor human that he should change His mind". And Bam folks there it is, the complete truth of how we can stand on God's promises to be faithful and present and for us and infinite other divine characteristics. EL ROI "The strong one who sees."
"Because of God's great love, we are not consumed" Lamentation 3:22
I Remain,
Relentless after Him
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