Hospice: Not what you think it means!

 

 
 

HOSPICE:  Not what you think it means!

For over two years now, we have been living with the reality that our sweet, precious little boy will not live long enough to get his second set of teeth; double digit birthday cakes; or even kindergarten pictures.  In late Spring we will celebrate his fourth birthday and everyday the realization that he is declining is slapping us in the face.  You see, when the diagnosis of Leukodystrophy is given to the family, since all the family is affected, you reset your priorities. Comfort, smiles, laughter and downright silliness are the things that we pack in the day.  We know more about medications and comfort measures, than first year med students.  There is an unspoken routine that is followed by everyone involved in his care.  The complexity of Stephen's care is not unique for other Leukodystrophy families, but we are one of the exclusive club that watches milestones slip away and in their place come feeding tubes, communication systems, constant monitoring of respiratory and digestive systems, as well as the normal daily care of a toddler who depends on someone for everything.  Anyone can wonder how we manage and that is the purpose of this article.  I would like to point out that NO ONE could be on this journey alone.  Without intelligent, compassionate support, Stephen would have already earned his Angel wings.  That intelligent, compassionate support for our family is Hospice of South Texas. 

Hospice of South Texas has been taking care of our whole family since last fall.  The day that my daughter concluded that school was too energy draining for Stephen, was the day that she enrolled him in the Hospice of South Texas program.  We had believed that a person had to have only a short time to live, in order to receive services, but we were wrong.  The law has changed to include pediatric patients without any time constraints.  (Even though I had been trained as a volunteer years ago, this fact was something I wasn't familiar with, because after all, who wants to think of pediatric hospice services? )

Admittedly, in the beginning we cried a lot, because the mortality of the disease is quite breath-taking.  We were also a bit overwhelmed with all the "new" people in our lives.  It was difficult to keep everyone's names straight, and jokes were made about certain people, like, "Oh, yeah, that's the nurse we like," when in fact, we absolutely adored all the nurses.  All the nurses are unique in their own ways, with a very important factor that ran through each caregiver; each one kept our family's best interest in the forefront of their hearts.  We have always wanted Stephen to have as much comfort and laughter that is possible. 

Some situations have called for house calls from the doctor and medication was adjusted.  These were very scary times, because the little guy seemed to be so miserable and slipping away in leaps and bounds.  No heroic measures were done, just a tweak of medication, more respiratory activity (nebulizer and chest repercussions) brought back happy days for Stephen.

Since Hospice of South Texas has been in our lives, other life events have added stressors to our already complex situation and our support staff have stepped up to the new challenges laid before us.  My Heart (daughter) and her husband wanted to have a baby in their marriage, and everything was wonderful during the pregnancy.  We found out that there would be another little boy in the household and we breathed a sigh of relief, since "we know how to handle boys."  Everything went along as planned until the actual day of delivery.  When my precious, brave daughter was in labor upstairs in the hospital, I was downstairs getting a biopsy of a tumor in my breast.  Before our new little guy was home from the hospital, I received the diagnosis of breast cancer. 

Breast cancer, which has been attacked through surgery, chemo and medication, will not define me, but let me tell you, it has surely knocked the wind out of my ole sails.  In this part of the journey our Hospice support staff have gathered even tighter around us to make sure that we get what we need to have quality of life.  Food has been brought, rides to the doctors have been given, hugs have been shared, shoulders to cry on have been offered, jokes have been exchanged and the many burdens have been shouldered by our friends at Hospice of South Texas.  Rocking new babies, holding Stephen, picking him up and entertaining him are "chores" that I have learned to share with these marvelous people, because when I am not able, these boys deserve to have their needs attended to with the love and devotion, that is the hallmark of Hospice of South Texas. 

No Way Could I Balance Without Help

Since I started this journey with the Grandlove and his Leukodystrophy, I have learned that it's okay to lean on others when the my world gets a little shaky.  My mom raised me to be independent, but let me tell you, without others I would have literally crashed many times.  I don't always need a hand, but when I do, I can reach down and one will be there to steady me and mine.   What is even more incredible is that sometimes I don't even know that I am on shaky territory as soon as those in my life realize that I need a bit of assistance.  No one can take away my fears, sadness or anger, but they can make sure that those feelings do not become the focus of my life.  Keeping me in balance can be a very tiring responsibility. so I am thankful that that duty is shared by many.  My family, friends, hospice workers, and facebook friends all supply me with the stability that Leukodystrophy tries to shake loose.  Thank you for all the care and support I receive.  Without you all, this would be an impossible journey, especially on the unicycle that all Leukodystrophy families ride.

A Special GPS is Needed for this Journey



As the weeks of this pregnancy pass, I try to wrap my head around the fact that this child is healthy and will NOT suffer as my Grandlove has.  He will meet and KEEP all of his milestones.  He will run circles around me, while babbling toddler words and capturing my heart and soul.  When he has the regular childhood bumps and spills, my heart won't stop and my breathing will continue its regular pace.  Doctors' appointments will be few and far in between and only for the "regular" little people stuff.  Clothes will be outgrown; shoes' soles will be worn out; toes will poke out of ends of socks from running around barefoot outside; food will be thrown from the highchair or painted on chubby cheeks with curious fingers; t-shirts will become so soiled from the multitude of staining items, that even using them as dust rags isn't an option; toys will find tender feet, because they are left out after a play date; crust less peanut butter sandwiches will be eaten on a daily basis; T-ball games will be attended, in spite of the hot weather; report cards will be displayed proudly on the fridge, along with drawings; and stinky boy smells will become daily perfume that will bring a smile to my reluctant soul.  When I think of how different this little person will be, I honestly can't even begin to grasp the reality that will be mine in just a few months.  Hang on with me and we will see what lessons this new journey teaches me.

GRANDLOVES aren't for Wimps

This picture of my sweet, precious, Grandlove and his future brother (with his mom, of course) was provided by a very wonderful person.  Jamie took many hours and many photos during this sunny day to capture the best of all of us.  She does this for families with children who are fighting for every day of their lives.  That few hours was filled with laughter, no medication, no tears and for that we are forever grateful.  Thank you, JME Portraits of Cypress, Texas.  You and your family are part of ours, now.

 

 

I wanted to use this picture for my blog, because this blog is about our future, one with a little boy who will be unlike his big brother, my Grandlove.  The past few years I have adjusted how I "grandmother" to the point that thinking about a grandson, who is different from the Grandlove, scares the beejeeus out of me. 

 

I know how to do feeding tubes; around the clock medication; pediatric hospital stays; botox injections for spasticity; physical therapy, occupational therapy; speech therapy, wheelchairs; specialized car seats; AFOs; wrist splints; communication switches; IEPs; ARDs; and Hospice of South Texas.  Each item listed has become ingrained in my everyday "brain" and has become second nature to me.  It's nothing to deal with a runaway feeding tube (unaware that it's unhooked) or juggling the appointments that fill my calendar.  The trade off is that our daily routine has given me a false sense that I can handle a three year old.  Only when we are out and about and I see other little guys running about causing normal little boy chaos that I realize that I don't know how to grandmother that type of boy.  How do I answer all the "Why?" questions that little boys gleefully throw back at adults?  How do I keep a little boy safe, while he explores all the places in his world that aren't meant for little boys, but little fingers always find?  How do I keep up with the energy of a little boy who only has two speeds, fast and asleep? 

 

 Don't misunderstand, I pray everyday that our new addition will be able to do all the things that little boys are suppose to do, and right on schedule and keep on doing everything "perfect" throughout his whole life.  His big brother is the sweetest, most precious little guy in our life, so we are hoping that the sweetness will be a brotherly trait.  If by a slim chance I ever need them, I've already been practicing my lines to this little rascal, once he finds his own voice and spirit.  IF he ever decides to try to talk "smart" to me, I will simply remind him, "Your big brother NEVER talked back to me."  In fact that line can work for many situations of being naughty. 

 

 

Just in case all that doesn't work out, I have already called dibs on my Grandlove.  He fits just fine in my heart and on my shoulder.

Our Angels Here on Earth: Hospice workers

There was a day, a couple of months ago, when a very difficult decision was made concerning my Grandlove.  My Heart had researched what services could be provided for her little boy by our local non-profit Hospice.  Meeting with the pediatric nurse and discussing the monster, Leukodystrophy, brought out many feelings that we put aside during our day-to-day activities.  To keep his days as stress-free as possible, we try to provide a positive environment, thus we don't address "what he used to do" and "what he won't be able to do" very often.  It's not that we don't realize that our time with this sweet, little boy is very limited; it's just that we don't want to focus on the sadness.  Our nurse listened with her heart and gave us her strength to get through that meeting.

 

During that initial intake meeting, his school called that he was sick.  So not only was my Heart starting Hospice for her son, but she decided that school was just too much for his energy level.  We finished the meeting with the wonderful nurse and then picked up our little guy from the school.  Grieving happened in the day; grief for not being able to have the "normal" experience of school and grief for the fact that Hospice was necessary in his little life.  That hit me very hard and I didn't know how I would handle Hospice coming by to provide services to Grandlove and us.

 

Well, my misgivings were very quickly dissolved when the first visit occurred.  In the door two wonderful souls came wrapped in the bodies of two nurses that would provide relief to this tired family.  Medication has always been a major "headache" for us because of the complexity of the prescriptions.  No more would we have to stand in the lines, wait for the compounding, keep track of the interactions or any other unlimited stressors we have endured.  Hospice nurses call in the prescriptions and the pharmacy delivers the medicine to the front door.  Sounds like a minor thing, but anything that could take a burden away from us was a welcomed relief. 

 

Relief from the craziness of local pharmacies that don't "get" what is needed for our little guy, is a very appreciated gift from Hospice.

 

We discussed all of our medical decisions with the Hospice workers (nurses, doctor and social workers) to make sure that the preventative procedures we wanted, could be done.  What a relief to know that things like flu shots, physical therapy, speech therapy, occupational therapy and botox injections could be administered, because we are all in the fight for quality life for our little one.  Amazingly, when the Grandlove gets hit hard by respiratory situations, the nurse comes out, no matter what time they are called.  No more ER visits; no more exposure to everything in hospital waiting rooms; no more having to "teach" medical personnel about Leukodystrophy; and no more questioning the care that was given at the ER. 

 

Freedom from worry, is a wonderful gift that we have received from Hospice.

 

During the visits from the nurses, volunteers, social worker, and doctor we find that these people are focused on the whole family's needs.  We laugh much more than we cry, because of Hospice.  They are here for us for anything that we need to make the Grandlove's life richer, more comfortable and as pain-free as possible.  I don't know about all Hospice situations, but I tell you Hospice of South Texas workers have taken so much stress from our lives.  No they can't cure our sweet boy, but they can do so many wonderful things in our lives.  If they could take our heartache away, I know they would, but since that is impossible, then they have joined us on our journey. 

 

Hospice has joined with us and we will never be alone, no matter how scary this whole process can get.  Our Angels, our Hospice workers wrap up our breaking hearts with their wings and let us know that they are with us. 

Mark of Christ

This was a pic from Grandlove's time to receive the mark of Christ.  He was still walking and babbling, in fact I had to run after him through the halls.  I came across this pic and realized that what we knew about the future for us would fit on the head of the pin.  This was before words such as:  genetic testing, Leukodystrophy, swallow studies, feeding tube surgery, botox injections, physical therapy, funeral plans and quality of life were part of our daily conversations/concerns.  Oh, to turn back the clock and be free of the information that wraps around our hearts and makes it difficult to breathe some days.

Leukodystrophy: Humble Enough to Ask for Help

Well, things have been going along pretty well.  Botox shots have helped my Grandlove with his spasticity in his legs.  His physical therapists have seen improvements and we are so glad that he didn't have major pain after the injections.  The injections should last at least three to four months and since he did so well, we probably will go that route again.  His body weight was enough that the doctor was able to use two full cylinders of botox (one in each leg) and we think that between the botox and his oral meds, that is why we have seen good results.  We were just so thankful that he didn't have any negative reactions to the meds or procedure, that we felt encouraged.

Since my daughter is taking care of my Grandlove full-time, the household income has really taken a huge hit.  If she would get a job, respite care wouldn't be available during her working hours and who would take care of such an involved little guy?  Not only that, but each day, each hour is so valued because of his condition.  When she was working, her heart was torn each time she went to work in the morning and after her lunch-time spent with him at home.  It's not that she doesn't want to work, it's just that she is limited in her options.  His therapies take up three mornings a week and once school starts (he'll be going for three hours in the morning), his therapies will be spread out throughout the afternoons.  We understand that he will never regain his mobility, but the therapies are to help him maintain the limited amount of function that he is clinging to, now.  Speech therapy is teaching him to use buttons to make choices, so that his expressive language can be unlocked.  How frustrated he gets when we don't understand what he wants/needs! 

When we travel with him, my daughter's little car cannot hold his wheelchair, suction machine, nebulizer, feeding supplies and other ordinary toddler needs.  I realize that the economy is not good right now, but right now is when we need a little help.  There is a fundraiser going on for my Grandlove, so that his mom can get a larger, affordable vehicle.  We have been fortunate enough to be chosen by Wooly Babes for an auction in September, but the site for the fundraiser has already been set up and any publications/donations/support would be so appreciated by us all.  My readers already realize how much my Grandlove means to me.  My readers have traveled on this journey from before the diagnosis, until now and so they understand what stress Leukodystrophy brings to a family.  There is no cure for what is stealing away my sweet, little boy, but there is hope of painless days and restful nights.  We do all we can to make sure that he receives what he needs to enhance his life.  Thank you in advance for considering:  "LOTSA OF LOVE FOR STEPHEN".  (There is a page on facebook with more information about my little Grandlove and how you can help/donate.) 

Wooly Babes - Waldorf Dolls for a Cause posted in September's Auction Doll: Stephen ~ September 14-17, 2012

Wooly Babes - Waldorf Dolls for a Cause 2:45pm Jul 4 Invite EVERYONE! Ask people to share, and spread the word on support groups, Craig's list etc. :) Let's get the BEST turnout possible! - Alana-Hermsen Wooly-Babes Please carry this message to your blog/facebook/address book of wherever you can.  I thank you for your help, because many of you have said whatever you can do to help, just let you know and I am asking for this help.  Sincerely, B. (TruthFerret on here and Soupsandwich Messedup on Facebook.)