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Watching, Waiting, Being Strong

Caregivers need help finding answers

It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.”  I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago.

That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it was less likely to cause infections.  Well, he got one anyway.  He saw his urologist who confirmed the diagnosis and gave him antibiotics.  It didn’t help.  The urologist took a culture the next visit and kept Lynn on the same antibiotic.  This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated.  The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture.  If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)

Unfortunately, getting the right diagnosis was too little too late.  By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal).  He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow.  They thought he might be having an exacerbation.  Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him.  Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia.  The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.

Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less.  As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided.  They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest.  The following story I wrote for the contest, describes how it was to wait those thirty minutes.

continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-watching-waiting-being-strong/

Managing Caregiver Chaos

For some reason, I have found that when I have a period of peace, quiet, and routine that I can expect a similar period of chaos to arrive in the near future.  Usually the chaos that comes is more than a little disruptive and what makes it chaos is that it comes from multiple directions all at once. For instance, my life is pretty busy with taking care of Lynn and working full time.  However, in the past month, my parents have moved in because my 82 year old Mom was diagnosed with ovarian cancer and needed help when she started chemotherapy;  my mother-in-law was admitted to the hospital for excessive bleeding after a colonoscopy; my father-in-law fell and is in the hospital to rule out any broken bones; my son-in-law was in a wreck and totaled his truck (fortunately no injury); one of my four employees resigned; we received notice of a routine government audit at work that is very time consuming (and of course fell under the duties of the person who resigned two weeks before the notice came in so now it falls to me to figure out what to do); another of my employees may be facing medical problems; Lynn’s assistant who stays with him when I have to go into work can’t help because her husband has been in the ICU and last but not least, it’s Thanksgiving with Christmas right behind.  Talk about chaos!!!
How do I deal with all this chaos?
As a caregiver, one of my “bags of tricks” is the ability to adapt and be flexible; plus I never throw anything away that might be used to “fix” something later.  With that principle in mind, I have a medical supply area and an equipment area of my house to help me address any mishaps to Lynn or to my family members.  Knowing that chemo has multiple side effects many of which result in extreme fatigue and weakness, I’ve set up Mom and Dad’s room with all my discarded support equipment from Lynn’s early days with MS that were geared toward preventing falls and conserving energy.  Also, rather than being her caregiver, I direct Mom’s care and let Dad do the actual hands-on as much as possible.  That practice frees up my time for Lynn and allows Dad to continue to care for Mom.
Most of Lynn’s Mom and Step-Father concerns are taken care of by his sister; however, one of our main concerns for them is if they fall and can’t get help.  His Step-Dad is legally blind now and his Mom has a neurological condition that results in very limited strength so if he falls, she can’t help and if she falls, he would have difficulty determining how to help her as well.  Therefore, we have bought them emergency alert buttons to wear so they will have access to help when no one is around.  By knowing they can get help, Lynn is not as anxious about their welfare or as frustrated in not being able to check on them.  If he’s less anxious, then his demands on me are less as well.
With work heating up and becoming more demanding, I’ll need to go into the office more often.  Therefore, I’m working on identifying other resources to stay with Lynn while I’m away.  Having Mom and Dad here is an unexpected help in that regard in that my brother and his wife are able to come help with Mom and Dad and have offered to stay with Lynn occasionally, as well, if I need to go into the office and Lynn’s assistant is still not available.
My best strategy for dealing with chaos though is “don’t sweat the small stuff.”  I do just enough cooking and cleaning to meet essential needs.  I don’t push myself to attend events that aren’t essential or take on projects that deplete my energy level.  I am giving myself permission to stop work at a decent hour and using paid leave to make up work hours so I can get sufficient sleep to have the energy needed to keep going every day.
Continue reading at: http://multiplesclerosis.net/living-with-ms/managing-caregiver-chaos/
 

The Caregiver's Prayer by Kelly Combs

The following Caregiver‘s Prayer appeared in a local church’s newsletter recently.  Lynn’s aunt shared it with me and I contacted Kelly, the author, to see if I could share it with you.  She graciously agreed. I have included her bio below as well as the introduction to the prayer and the prayer, itself. I hope it blesses you as it did me.
Kelly Combs wrote this poem for her father, who has been a dedicated caregiver to many, and is currently caring for his wife who has Alzheimer’s. Kelly writes a devotional blog at www.chattykelly.com.

The Caregiver’s Prayer

By: Kelly Combs

Being a caregiver is hard. Whether it is your aging parents, a sick spouse, or another chronically ill person, the weight can be overwhelming, even as it is done in love.  We can’t do it alone, but when we partner with God, His strength can sustain us. I hope this prayer blesses those of you at Fairmount who may be caregiving, or know someone who is a caregiver. Please feel free to share it.
Dear God,
I’m feeling overwhelmed. I don’t know what to do. I’m tired Lord, the work is hard, and so I come to You.
My role here isn’t easy, but it’s one I wouldn’t trade. I know I’m following Your will, but my strength’s begun to fade.
You said Your yoke is easy, and that Your burden’s light.
I need to rest my soul in You, and lean on You tonight.
I pray for peaceful, restful sleep; to wake fully restored.
I hope that’s not too much to ask of You, my precious Lord.
I pray that You renew my strength because in You I hope; Then I will soar, and not be faint, and You will help me cope.
You modeled loving-kindness, teaching us to be like You.
That gives me the strength to care. I know it’s what You’d do.
So I will keep care giving, on the bad days, and the good.
I’ll love the way You love me, treating others as I should.
Please bless the one for whom I care and hold us in Your hands. Together, with You, we will make a strong cord of 3 strands.
And when I get to heaven, and stand before Your Son,
He’ll call me faithful servant and say to me, “Well done.”
– Amen

Supporting Lynn in his Work

One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs.  I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address.  Therefore, I find that in addition to my own job, I often am assisting him with his.  Recently, though that has gotten better.
My daughter has decided to be a stay-at-home mom.  That’s great news and I’m pleased that she wants to do that.  I think it’s the best possible world when Mom can stay home with the children.  That being said, in this economy, it also frightens me that she and her husband will not be able to make ends meet.  I pray for them often that they will find a way to be successful in what they have chosen.  While it’s nice for them, I’ve also discovered it’s going to be nice for me. 
Currently, Lynn’s son comes on Mondays and Fridays for a few hours to help him work out and he’s occasionally been helping him, as well, with typing.  On Thursday’s Suzie comes for a few hours and helps him with his marketing and typing.  Now Sarah will also be available a few hours a day on the days he does not have anyone else coming.  That means that he will now have a secretary, so to speak, five days a week who can help him with his manuscripts, internet research, marketing, and email responses. Isn’t that great? It really takes a burden off me to have this available.
There are still some things though that I do for him that he doesn’t want others to do.  For example, Harper Voyager is accepting unsolicited manuscripts during the first two weeks in October.  What an opportunity for Lynn!  As a new author it’s very difficult to get published because many publishing houses will not accept unsolicited manuscripts.  They want them to come through an agent but an agent is difficult to get if you have not been published.  That’s why you hear of more people being self-published these days.  Lynn’s first novel, Rising Tide, was published by Tate Publishing and they were great but Harper Voyager specializes in fantasy/Sci-Fi/supernatural fiction which is his genre.  If they selected his manuscript for publication, they would already have a built-in audience to market the book to.  (all prayer support on that front would be appreciated)
When he learned of this opportunity, he immediately dusted off the manuscript for this second book.  Though his second book had been written, it had been a while since he had looked at it.  When this opportunity came up, he, of course, wanted to take advantage of it, so he began tweaking the manuscript.  Though he writes the books, I edit them, so this adventure was a project for both of us.  Last weekend I stayed up nightly till 3 a.m. editing the book (that’s why I had no blog last week).  We submitted it on Tuesday and I must say, it’s a good book.  He’s done an awesome job with it.  Originally, I thought it was a little weak in some areas but now it’s action packed and flows well. I really hope they choose it as one of their selections because it really is good.  
Though he’s the writer and the books he creates are his projects, I’m blessed to be able to be part of it.  God opened a door for him when he became disabled to allow him a new career.  It’s certainly not an easy career but it’s one that he can do from home when he has the energy to do it and now He has provided Lynn (and me) with the resources to help him participate in his career choice on a regular basis.  It’s so important for someone with MS who is totally disabled to feel productive and useful and to have a job to get up for each day as well as goals to pursue. I think that without that drive to produce, the person is more likely to decline in his/her health and abilities.  God gave us work because we need to feel productive and I am so glad that Lynn has found his new career and has a job to do. 
So keep your fingers crossed that his manuscript for Eden’s Wake is selected for publication.  We might not know for two-three months.  We were told if no news by three months, it was not chosen so we could learn the status by default.  If you like adventure fantasy, take a look at Rising Tide.  It’s a very good read and even was selected as a finalist in the National Indie Excellence Book Award for 2012.  Keep your fingers crossed for us!

There Go the Apples!

The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.”  When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards?  Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day.  There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time.  There also has to be an emotional balance.  We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair.  We’ve known for some time now that the motor was sounding as if it was going to go out at any time.  When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version.  It has three speeds, the legs elevate, and the chair tilts, among other things.  He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions.  When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more.  Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response!  Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life. 
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore.  He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours.  By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable.  His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears.  There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.”  When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions.  At times he gets angry and frustrated but that blows over.  What is worse is the sadness and worry in his eyes.  He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time.  I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call.  The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored.  We both prayed for God to help us during those hours of waiting for the repair man…and he did.  We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem.  Using humor, seems to lighten the load so we try that out when we can.  Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart.  Try to keep a balance.  When the focus shifts to the front, then try to lighten the back and get back the balance.  It helps to make the waiting time go much faster.

The Blessings of Children

Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

We can finally drive the van!

 

After paying the owner the sales price of the van on Nov. 18, we finally have tags and can drive it as of December 3.  This entire experience has been one of frustration and endurance from the beginning but it’s over now, and we have the freedom provided by a wheelchair van. 
Today, after breakfast, I got Lynn dressed, put him in his powerchair, and he drove himself out the door and into the passenger side of the van.  After figuring out how to use the straps to secure the wheelchair to the floor, we were on our way and for the first time in over two years, Lynn actually went into a store and bought something for himself.  What freedom that is!  I no longer have to be his eyes and ears at the hardware store and won’t have to experience the frustration of figuring out what size nail he needs or what type.  He can actually talk nails to the sales person himself and get what he wants.  No more guessing by me and returning it a few times before I get it right.  Yeah!!!
I have to admit however, that I am still considering filing a formal complaint against the lending company.  It’s not that I want them to be in trouble, it’s that they do not have a process for addressing the needs of the disabled. All I want is for them to create a process that they will follow going forward to quickly be able to determine the value of conversion vans or other special needs equipment.  They really should have that in place and I would like reassurance that they will.  I plan to contact the President or someone there to ask them to create such a process and let me have a copy so that I know this won’t happen to anyone else.  I had rather they do that than report them to the Dept. of Justice for an Americans with Disabilities violation.  (I hope I will follow through with what I want to do and won’t become too distracted and forget.) 
So anyway, we have the van and we now have a comfortable and reliable way to get Lynn to destinations.  We have two doctor’s appointments this week and should be able to make both without any trouble.  The one Friday is the important one–it’s where we’ll hopefully get some blood work done to find out if his anemia is improving or getting worse.  Keep the prayers going that it’s getting better.  He still feels really bad but we had to change his blood pressure medicine too this week so it may be the adjustment to that.  Have you noticed that MS patients don’t adjust to change very well?  Any change in medications or routine just knocks the wind right out of them for days…at least it does to Lynn. 
I hope all is well with you and your family. Thanks for your prayers….they really worked….we have our van and we can drive it.  Amen.

MS or something else?

Every time Lynn goes through a spell of feeling bad, I wonder, “Is this MS or something else?”  MS is so sneaky.  It affects so many components of the body and mimics so many other things that it’s not always easy to tell.
Like now.  Something is wrong with Lynn. He associates it with when he got his flu shot at the end of October and it’s true that taking a vaccine often does trigger a reaction in MS patients.  As their body attempts to make antibodies against whatever is being introduced, the autoimmune response is often triggered and the body feels the effects of the war.  But it usually doesn’t last this long….
If you recall,  a few blogs back I mentioned his hemoglobin report came back low.  I have been hoping that the result was a mistake. I’m still hoping that but over the last week, he’s getting more and more fatigued.  By 3-4 p.m. he’s exhausted and feeling really rotten.  The only thing that has been giving him any relief is a hot shower so he’s had a hot shower every night this week. I talked to his doctor today about re-ordering the lab work and maybe adding a few other tests.  She wants him to come in first so she can assess him herself.
I understand her perspective but we still don’t have a title or tags for our van so I can’t take him to the doctor yet.  Yes, I could put him in my car but he’s so difficult to get in and out, I don’t want to do that if I can wait.  So, he has an appointment for next Friday.  I’m hoping the title we’re waiting to get from the former owner’s bank will come in this week and maybe I can get the appointment moved up.  I know Lynn is really feeling bad and that he is also concerned about what’s going on because he’s anxious to go to the doctor too and he NEVER wants to voluntarily go to the doctor.
So we wait to find out what’s next.  The doctor mentioned maybe sending him to a hematologist (blood doctor) for an assessment.  Might as well, we haven’t seen one of those yet.  He has a pulmonologist, a neurologist, a cardiologist, endocrinologist, urologist, physiologists, and dermatologist.  Pretty soon he will have a specialist for every body part.  What his primary care doctor (not an -ologist but an internist) thinks is that something is affecting the production of red blood cells in his bone marrow.  That’s rather worrisome for me because having a medical background myself, I think first of cancer.  Sure hope there’s no chemotherapy on the horizon.  His PCP thinks maybe it’s one of his medications causing a problem so if she repeats the lab work and there is still no improvement in the hemoglobin, I guess we try that next.  Let’s hope it will be a simple fix.
So what do we hope for?  If it’s MS pain and discomfort, chances are there is no treatment.  If it’s anemia due to bone marrow being impacted by something, then maybe there is a treatment.  Hopefully he just needs iron shots or something.  So if you’re the praying kind, pray we get that title in tomorrow so I can get tags on the van and be able to take him to the doctor to find out what’s going on.  Until we can get there, we are in a holding pattern and that’s pretty stressful.  Then pray the new lab work will reveal that nothing is wrong and that maybe there is something he can take to feel better. 
Thanks.  We appreciate the prayers and support.

Thanksgiving

This image shows a Intensive Care Unit.

Last year on this date, Lynn was in the intensive care unit of the Medical College of Virginia Hospitals (MCV). 
By today’s date, he had been in the hospital since November 6 and would remain in the hospital another two weeks. During that time I stayed with him 24-hours a day.  I slept in a reclining chair at his side and was up every few hours helping to make him comfortable.  He does not remember much of that time and what he does remember is clouded by the hallucinations he was having so at times he cannot be sure what was real and what was not; but I remember every bit of it.
I remember having my step-son stay with him while I went to work to teach a class 1/2 day on Nov. 5 and coming back to find he had not eaten anything all day and had drunk very little.  I remember being up with him most of that night and deciding at 4 a.m. that he needed to go to the hospital because he was feeling so bad, calling my son-in-law to help me get him into the car, and then driving the hour to the hospital.  I remember the kindness of staff who brought me coffee and a snack during the day; the visit by my daughter to bring me lunch and then her return to find out what I would need from home when the decision was  made to admit him.  He had stopped eating or drinking due to a urinary track infection that he could not get rid of due to a mistake in reading the urine culture and the wrong antibiotic being prescribed. 
He had become so debilitated that he just could not bring himself to eat so they put in a nasogastric tube to feed him thinking it might be an MS exacerbation.  During a tube feeding, he coughed violently and coughed up the tube causing some of the feeding to go into his lung.  As the week progressed, he began to sleep more and more.  The day before he was to be discharged, he slept all day and could barely be awakened.  His temperature would not register and his blood pressure was dropping.  It was discovered that his temperature had dropped to 95 degrees rectally; just barely at the level to sustain life.  He was sent to the ICU for the first time and put on a heating blanket for hours.  Pneumonia was discovered and he started “third spacing;”  (that means all his body fluids were seeping into the skin and out of his blood vessels.)  He looked like the Phlysberry dough boy.  They took 1000 cc off his lung and the diuretics took out about 3000 cc in fluid through his kidneys.  He was very sick. 
During this admission he was in the ICU three separate times before going home.  I wasn’t entirely sure he would make it home, but he did.  Thinking back to those days, I’m so thankful for all those people at the hospital who brought me food, stayed with him while I went to get a meal away from the room, found me a place to shower, brought me clean clothes and supplies, checked on me to see what I needed, took care of things for me at home, and prayed for us every day.  I could not have made it through that time without them.
I am also thankful for the friendships I made with the nursing and medical staff; the excellent care he received, and the diligence of the health care professionals in determining what he needed to get better. I am very grateful to my church especially who came to my house and decorated it for me for Christmas so we would come home to Christmas at our home without the work involved. We were and are so blessed.
That was Lynn’s first admission last year, ever.  He had two more during the year; each time he was in the ICU for part of the time.  Once he almost went on a ventilator which they felt he might not come off again.  We were so fortunate to have the best healthcare workers anywhere caring for him and pulling him through and many, many people praying for us.
This week is Thanksgiving and we have much to be thankful for.  It has been a very challenging and rewarding year.  It’s been full of fear, faith, hope, and joy and much more.  I hope the coming year won’t be a repeat but I know that if it is, I’m not alone and for that I’m truly blessed.
Have a safe and healthy Thanksgiving.
Donna

We Have Our Van!

Finally after two long weeks of going back and forth and back and forth with the loan  agent, we got approved for the full van loan. As the person who sold us the van said, “I’ve bought houses in less time than it’s taking to get this loan approved!”  If the seller and I had not continuously pushed things to move along and offered assistance, I might still be waiting on the van. I finally called a dealer and pleaded that they send the retail value for a conversion kit to the loan officer and it finally went through.  Then they even agreed that the van value was more than what was being asked!  Go figure.
I can’t say enough nice things about the seller though.  What an angel.  He was so incredibly patient and helpful throughout this entire process.  I feel like I made a new friend.  He was such a man of integrity and honor.  It seems rare to find someone like that when you’re buying something as expensive as a car.  We were truly blessed and once again, we see God’s hand in making our prayers come true.
We got the van Thursday night.  I walked around being oriented to it by the seller in the dark with a flashlight.  Would you believe I had never driven it in all this time? In fact, all I have done so far is move it around the yard. I have insurance on it but still need to go to DMV tomorrow to get the title and tags straight. I can’t wait till I can open the door and just have Lynn drive inside.  How exciting that’s going to be!
When you can’t travel safely either due to your vehicle or due to being able to get in/out of your vehicle, your world becomes very small.  Currently the only time Lynn leaves the house was to go to the doctor.  I’m hoping now he will also be able to return to church.  He won’t be able to use his power wheelchair there because the elevator to the sanctuary is too small for it but when he’s feeling well, I may be able to transfer him to a transport chair so he can once again attend.  That would be awesome.
We were also blessed today with the delivery of the patient lift we ordered.  It is so much easier to use the hoyer lift we had.  The rep from Adaptive Solutions in Lynchburg brought it to our house today, assembled it and showed us how to use it.  He was very nice and you could tell he really wanted to provide helpful solutions to his customers.  He was full of information about resources and things to check out that might be helpful.  The Maximove he brought us is so easy to manuever and I can even put the sling on Lynn while he’s in his wheelchair and remove it without any help.  I don’t know why insurance companies can’t see that to have a safe way to move patients around is so much smarter!
We have had a very busy day today.  First Lynn’s physical therapist was here. I ran to the grocery store while they were busy.  Immediately after I got back, the Adaptive Solutions rep was here.  Then the home health company came and picked up the other lift.  Meanwhile a rep for the Hayek ventilator came by to see how that was going, Lynn’s son came to exercise him, and finally our chiropractor came to adjust us both!  Whew, I’m tired just thinking of it all.  I was going to go to DMV after the chiropractor left but Lynn was just too tired for me to leave him home alone long enough to go.  I’ll go in the morning when he’s fresher.  By the way, between all these visits and then immediately afterward till about 10 pm tonight, I worked my regular job. Busy life….
So…we close this week with many blessings and much thanksgiving over God meeting our needs and carrying us through the tough times.  Once again we managed to adapt to life’s curve balls and hit a home run.  We are truly a blessed couple…

Answer to Prayer

 

I have often mentioned in my posts that God takes care of us and that our church is an ongoing support group for us.  I want to share with you how I know prayers are answered.

 If you follow my blog you know that several weeks ago I wrote a blog about how much I needed a conversion van.  Lifting Lynn in and out of our Impala is extremely difficult and there have been many times that I only managed to move him safely with God’s help through prayer.  I had received a lot of encouragement to look into purchasing a van.  As you know, there are really no resources for getting a handicap accessible vehicle.  There are some scholarships or discounts but the cost of converting a van is very expensive. Therefore, those discounts only go so far in helping. 

We knew we could not afford a new vehicle that we converted ourselves. The cost of a new car plus the $15-$25,000 just to adapt it was too much.  Therefore, we went to our church to ask if anyone in the congregation knew of anyone who was selling one.  We wanted someone reliable that someone we trusted also trusted.

 

Someone did.  Someone I didn’t even know personally from our congretation who had read my email request but she took the time to make contact and let us know about her neighbor.  The van was listed on Craig’s List and it was very reasonably priced for a conversion van.  It was also in very good condition.  The owner has been so accommodating, bringing us the car to check out, getting it inspected and brakes changed, keeping us informed and answering every question we had.  I feel very comfortable with him and the vehicle.  If anything goes wrong with it after we buy it, I feel certain he would not have known it was a possibility.

 

After I sent out the request for help, I just knew in my heart God would send us something… and he did, in only about a week.  By this time next week, we should have a vehicle that I can take Lynn out in without the trauma to me or him.

 

I feel very blessed today and very hopeful.  I often write about the challenges in our lives but I wanted to share a triumph this time.  This was truly an answer to prayer.

Hayek Ventilator

An example of an external ventilator.

In late May 2011, Lynn became very sleepy.  He was so tired he could hardly stay out of bed.  I listened to his lungs, and they sounded very noisy in some areas and almost no movement in others.  His home health nurse thought we should go to the ED, and finally, even he agreed.  We went in on Friday, and he entered the Neuroscience ICU immediately.  On Saturday, his blood gases were so bad that had his gases not improved within a particular 30 minute period, they were going to intubate him and put him on a ventilator.  They warned me that if that happened, he might not be able to come off because his lungs had gotten very weak.


That was the first time that I actually got scared about the possibility that Lynn might die.  I was alone at the hospital, but I had lots of support there. I had many friends among the staff members and knew they were all doing their best.  We had one excellent Respiratory Therapist that was keeping watch on him, so I knew he was in good hands.  However, I couldn’t trust that those hands were enough, so I sent out a call for prayer to several people.  When I got back messages they were praying, Lynn started to wake up, and he started making progress toward getting better.


Lynn hated the mask he had to keep on to help him breathe, but if he took it off, his oxygen levels became too low. God was again looking out for us because the Respiratory Therapist knew about a new device that she had seen used successfully for cystic fibrosis kids and ALS patients.  It was called a Hayek ventilator.  It works on the iron lung principle, but it’s very lightweight, and the patient can move around with it if needed.  She helped get it for him, and he found it to be very comfortable and an effective way to support his breathing without a mask!


Now that his lungs are better, he uses the Hayek only at night in place of BiPAP. (Bipap is like Cpap – continuous positive pressure, but it also delivers intermittent breaths).  I put the Hayek over his chest when he goes to bed, strap it on, so there are no air leaks and turn on the machine that pumps the air in and out.  As the force of pressure pushes down and releases on the chest, breathes are drawn into and out of the lung (inhalation and exhalation). The only thing uncomfortable is that it makes him feel cold (but he has hypothyroidism as well, so he’s susceptible to cold.)

 

If your MS patient has any respiratory issues or even sleep apnea that doesn’t respond to CPAP or Bipap, check this out.  Go to www.Unitedhayek.com  It made a difference for Lynn.

Wondering where this road will go

Ever make plans for the future that didn’t quite turn out as you had hoped?  Yeah, who hasn’t.  That’s how MS affects my life.  We make plans and then he has a new struggle to deal with and the plans we had, take a back seat.


This is a second marriage for Lynn and me.  When we got married, I had two children and he had one whom he had with him intermittently.  He had a log cabin with two bedrooms; I had a house with three and a foundation for a fourth.  Therefore, we moved into my house.  Lynn is a carpenter by trade and had built his log cabin. Therefore, we decided to buy land and build our own home, literally.  Lynn designed the house, sent the plans to a timber frame company who took the plans and created shop drawings. We bought the timbers, he then took those plans, and in his spare time after work, he cut the timbers for the tongue & groove assembly. On weekends, he put in a foundation for the basement which took two years for him to do on his own.  By the end of the two years, the fatigue from the MS made it difficult for him to tolerate working more than an hour.  If it was hot, he couldn’t work at all.  After finishing the foundation, he began to put stone on the columns that would be the porch.  I had to mix the cement, bring him the stones and help him hold them in place at times.  Gradually, he could not do even that.  So now we have land with a finished basement and a few columns with the stone in place.  He hasn’t felt like working on it in over two years.  Plans change…


During the past two years we have been dealing with his change in mobility.  Two years ago he was able to walk with a rollator. Now he uses a powerchair and has limited use of his right side.  In the mornings he can feed himself.  By night he can’t do that.  On his “bad” days, I feed him every meal and do everything for him including scratching any itch, helping him unclench his curled up fingers from spasms, helping him change positions…just about everything.  So instead of building a house, we have focused on adapting this one.


Has your loved one gotten a powerchair yet?  They are wonderful but not always the easiest thing to get into and out of tight spaces.  When Lynn first got his, he wanted to see how fast it would go so he would get at one end of the hall and “run” to the other end.  Sometimes he would try to make the turn into the bedroom door.  Not such a good idea.  We eventually had to take down the door  because he hit it so many times, it was coming off its hinges.  We also had to put up metal plates over areas in our walls where the metal foot plates of the chair would hit the walls and cut into the sheet rock.  We currently have a rather large hole in the wall where the handles behind the chair cut into the sheet rock when he turns into the bedroom.  Where before I used to care about my house looking neat; now I just care that it’s functional.  What’s important changes…


When Lynn first got his wheelchair, he was embarrassed to be seen in it.  He was dealing with the loss of his image as a man and a provider.  He did not want to be seen as weak or have people feel sorry for him so he would tend to avoid people.  Me, as I mentioned before, I’m a realist.  If he needs a wheelchair, he needs a wheelchair and I don’t care what people think.  The wheelchair made our lives easier and that’s all that mattered to me but I had to be sensitive to how he felt. That got frustrating because I wanted him to still go to church with me and I felt he was letting his pride get in the way of living his life.  So I would have to remind myself that this was his life and his way of coping.  I needed to let him adjust the way he needed to–gradually, a little at a time. So for much longer than we should have, we used a rollator as a wheelchair so that he could tell himself he was not wheelchair dependent yet.  He finally made the transition to the wheelchair when circumstances made it necessary for us to use one for a while on a trip and he saw how comfortable it was.  Adjustments take time….


We are at a point now where we are trying to decide whether to finish that house we started.  We have prayed a lot about it, especially Lynn.  He was talking to God one day and asked Him to let him know what he should do.  Out of the blue, he got a call from someone asking if we wanted to sell that land.  So you think, is that the answer, to sell the land?  We don’t think so.  The person who called wasn’t really interested in buying; he was a builder and wanted to finish it.  He wasn’t the one to do that because he had never built a timber frame house before but it got us thinking that we needed to make a decision.  I contacted a friend whose husband build’s timber frames. He was great!  We felt very comfortable with him and feel like he’s the one to build it.  Lynn can be the general contractor since he knows how to do that so he can feel that he’s still in control of finishing the house.  We have many friends who are tradesmen; so he’s contacting people for bids.  We are still deciding what to do–need to make sure we can afford it since this house might not sell well–but it’s giving him a project and a purpose which has been missing for a while.  So again,  plans change or do they just roll around again?


I have my fears about building the new house.  I’m the only one working…what if I get sick and can’t work?  What if we start building and he get’s sicker and can’t finish it?  Should we save the money so I can hire someone to help me provide his care?  Do we adapt this house more (we’re talking major bucks to make the changes we will need) or just fix up this house to sell and adjust the floor plan of the timber frame?  Either way is not cheap.  If we move, we will be further away from my daughter and her husband but closer to our two sons and my job.  My daughter is ready to start a family and I want to be near our grandchildren.  Will moving further away make that more difficult to do?  So many questions.  Most of my fears I try to keep to myself but sometimes they get overwhelming.  I’m the caregiver.  I have to look out for both of us and our future.  I want the new house but he’s been in the hospital three times already this year; is it a good idea to build a new home? So many questions and so few certainties.  So I leave this blog with the request for prayers from you that God will show me what to do…to make it clear what our decision should be about the house(s)… will provide a way for whatever that decision may be and help me to find peace in the decision.