Tag Archives: medical

Information Management for the Tired Mommy

Medical appointments are a challenge in many regards.  For one reason, every appointment begins with the whole list of questions or forms.  Even when the office already has several folders worth of Riley’s information, I get to go over every event and medication again.  Unfortunately, I do not have instant recall of each medication, dates of surgeries over a lifetime or diagnostic procedures and scans last completed.

Life of Riley

March 28, 2011

This expression certainly has a very different significance in my family than it’s intended meaning.

Riley and Mom

The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday.  It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life.  I also remind myself that this is a niche blog not a reference book by a professional…. and I may very well be the only one reading it.  Well – maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction.  But hey, we all have dysfunction.   Perhaps I will simply not add any more concerns to the day and just make some “notes to self” for more information later.

Our Life

It feels like we are drowning again.  John and I have been on catch up ever since the trauma of Riley’s birth and the challenging life it left in its wake.

John did an amazing job as The Bootstrap Boogie volunteer photographer last Saturday evening.  Our computer is now filled with revelers in our barn and on the mechanical bull.  We expect to discover some of the shots in the Naples News this week.  Now we may need to redefine “tired” when it comes to John.

There has been plenty of stress and not the least of it being health.  Riley had a long challenging weekend – no one needs those details.  Not long ago John suffered a bad ear infection which we treated with antibiotics.  We thought it was taken care of… We also kept him from his passion during the healing process and he has not been diving in over two months.  Sunday evening his one and only filling fell out which was very strange.  Monday morning, while waiting for a flat repair he decided to walk over to the dentist…. missing work all the while.  He then discovered the infection and spread throughout his sinuses and was destroying his teeth as well.  He has now had a root canal and will be having a crown, another round of medication, and we hope that no other teeth meet the same fate.

In the meantime, I am struggling with the demands of taking Riley so frequently to meet with medical specialists.  Monday was the Pulmonologist.  It took the entire morning and as you can expect that was all driving and waiting.  Tomorrow is the Opthalmologist, but I find I must cancel.  I cannot manage it right now.  It’s all about tracking and covering every one’s butt.  But, it’s at the expense of Riley’s energy, my time and energy, the wear and tear on the jeep and of course the incredible cost of gasoline.  Do these sound like legitimate excuses.  Likely not.  But at some point we should get to live our lives rather than shuttling around to doctor’s offices.

Not feeling so special today… Stacie

Appointments and Illness

There is so much I have planned for this blog and so much I want to say… However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it’s controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I’ve done it and I don’t like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley’s parents – yep, that’s John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today – in fact, I am unsure when I care to get into this.  For now, let’s leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not – it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not…

The special needs community frequently uses the phrase “a bullet is a bullet.”  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, “Wow, she’s easy to work with!”  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors – oh, I know I’ve talked about tremors here and there in this blog – I better tag them because they’re important.  When we weren’t under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us… illness is truly horrible and this wasn’t even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.
This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today…
A post on respite for families – it’s a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title – Mother’s from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren’t too many typo’s and such, because this is a blog and I’m moving on with my day.

We are all special… I think… though I complain and want to compare bullets with you… by Stacie Wiesenbaugh

Raising RSV Awareness

Riley and I had the pleasure of being interviewed yesterday by Stacey Deffenbaugh!  Stacey anchors NBC-2 News at Noon and The Healthcast report at 5:30pm.  She also contributes court stories from state and federal court.
We discussed raising awareness of Respiratory syncytial (sin-SISH-uhl) virus, or RSV.
Ms. Deffenbaugh and her cameraman, John, were a pleasure to have in our home and share Riley’s story as well as his cause of protecting vulnerable children against respiratory illness.  Fortunately, Ms. Deffenbaugh was incredibly patient with my random thought pattern and our slightly chaotic lifestyle.  This experience certainly shows me that I need to polish my speaking skills and reign in my focus.  I suspect however that she will have no problem working around us as she prepares to get the word out.
RSV
 
Respiratorysyncytial virus (RSV) infection, is a common, easily spread virus that almost all children catch at least once by the time they turn 2.
RSV disease usually causes moderate-to-severe cold symptoms.  However, for some babies, complications from RSV disease can lead to serious lung infection.
Babies at most risk for developing severe RSV disease are premature babies – those born before 36 weeks gestation.
Premature babies have underdeveloped lungs and fewer of the vital antibodies needed to stave off infections, so they are not so well-equipped to fight RSV as full-term babies.  Other risk factors for RSV include: low-birth weight (under 5.5 pounds), certain lung and heart diseases, and situational risk factors such as attending day care, having preschool or school-age siblings, or exposure to tobacco smoke.
It is recommended that you call your baby’s doctor if your baby has any of these problems:
Coughing or wheezing that doesn’t stop
Fast wheezing or gasping for breath
Spread out nostrils and/or caved in chest when trying to breathe
A bluish color around the mouth or fingernails
A fever (in infants under 3 months of age, a fever greater than 100.4 degrees rectal)
Prevention
    • Cover coughs and sneezes
    • Wash hands frequently and correctly with soap and water for 15–20 seconds
    • Avoid sharing their cups with others
    • Refrain from kissing others 

The Donation by Donna Lee

As promised in Prayers Received and Accepted, Donna is sharing the details of harvesting her stem cells for her brother.

On Tuesday, the 16th, 9 am, aftergiving myself a final shot of Nuepogen, I was hooked up to the machine which draws the blood from my left arm, collects my stem cells, transferring them toa bag, and replaces my blood back to my body (heated) through my right arm.  I expected it to be like giving a blood donation but soon discovered that it was a little more trying then that. 

I was all set up on my lounge chair,legs up, head back, laptop on my knees, books by my side and snacks.


I thought this would be a 6 hour leisurely process, including movies, books and food; my body reacted otherwise. Because calcium is being drawn from your blood, you start to shiver, shake and tingle.  It was a very strange sensation, which meansyou need to suck on some tums and be hooked up to calcium. After awhile, that tingling sensation turns into numbness, exhaustion and apathy.  You feel as if your soul has been drained ou tof you.  As a matter of fact, you feeljust plain lousy.  However, when I wastold that the bag is filled, the target has been reached and you are being unhooked, I knew I would have done it again.

Throughout the process I held hematite stones in each one of my hands, with the intent of transferring them to my brother’s hands on the day of his infusion.  I kept repeating to myself that this is going work, that I am giving good, healthy healing cells to my brother.  At the end of the experience, I broke down in tears of relief: 1) because of the realization of how much the people around me are suffering, and 2) knowing that this bag of gold will soon give my brother new bone marrow, good health and well-being.

Yesterday, the 16th, my sleeping brother received the stem cells. The hematite stones were placed next to his right and left hands. After 2 hours, when the process was done, I removed the stones to put in the sun lit window, which practically burned a whole through my palms. That blew my mind!!!

My brother, Brad, is feeling reasonably well and now it is a matter of keeping him comfortable, in good spirits and positive so that he will absorb the new cells.  Prayer, meditation, laughs and love are thedaily requirements.  Taking each day as it comes is another.  I am looking forward to seeing what today brings. Shabbat Shalom, Salam, Peace.

B’ahava
Nameste, 
DONNA LEE


Events:
Sign up/recruit now for the U.S. Disabled Sailing Championship -Sept. 22-25 at Larchmont Yacht Club, NY . It will be a wonderful regatta and are just waiting for the sailors to register.  There is a novice fleet too, so if you know any rookies, please encourage them.
Linking: 

Smart and Trendy Moms

Prayers Received and Accepted by Donna Lee

I am not a religious person but have become a true believer.

Every since I got the phone call from my brother, Brad, requesting that I swab my inner cheeks and send the DNA kit back to the Bone Marrow Transplant Center, at Presbyterian Cornell Hospital, I knew my prayers would be received and accepted. I knew I was a perfect match and that I would donate Bone Marrow to my brother, who is one year older than I, 55 years of age.
He has been ill for many years, starting with lymphoma,and now a rare type of leukemia, called Myelogenous.
I received the news, while visiting in Israel, that I am a PERFECT match. I jumped out of my seat and started to dance the hora,thanking God, mother earth, the universe and all my friends who prayed for us.Terry taught me how to read the psalms, Sandy came to temple with me, Julie accompanied me to the Wailing Wall, in Jerusalem, where I put a note in for Brad and placed my hands on the stone, feeling the vibrations. It was time  to come back to the USA. With a phone call the ticket was changed and I am here. My brother’s white and red blood cells and platelets have risen, after receiving many infusions and is home with his family for a few days. I will start to receive “booster” shots, which will turn my super duper bone marrow into even a more enhanced product, leading us to the donation,which takes place next week, which my brother will receive the following day.   
The harvesting begins. My job is a breeze and I will tell you all about it in my next message. My brother has a very long and rough road, but he has many angels walking with him now. thanks EVERYONE.   B’ahava and Nameste.
DONNA LEE

Appointment Summer

It does seem as if life with Riley is all about schedules and appointments.  The production of planning, getting through the next activity and arriving at the right place and time, in the reasonable mindset, wear us out.  I find myself procrastinating with each line on my list for the day and admittedly some of the lines are left unmarked.

Riley’s schedule is packed as Summer ends very soon as Lee County returns to school on August 8.  The boys and I have spent a lot of time traveling and hanging out in waiting rooms.  These events wear my patience thin with the various people we encounter.  It takes a great amount of energy simply to show up somewhere with Riley that finding us easily disrespected vexes me (See April Fools in a Doctors Office or My Fragile Child).
The neurologist clinic appointment had been canceled on us and rescheduled to a later date and time without consultation. I had asked for a time change if possible to an earlier hour and was told Riley could be seen at 8:20 am.  We arrived with moments to spare and watched three ambulatory patients arrive after us and leave before we were called. I questioned the nurse on one of her pass through’s to make sure she was aware Riley was available, she assured me she did.  At 9:20 am we were finally called back for the same nurse to take our stats. Unhappily, I paused at the scheduling desk reminding the woman behind the computer of our allotted time.  Only then did she notice, but did not care, that we had been booked at 8:20 at the same time as another patient.  My voice raised and our Neurologist rescued her by dispensing with our stats and seeing Riley immediately.  The doctor has no fault in this and I immediately felt guilty for complaining.  Dr. O has been nothing but kind,considerate and gentle with us.  However,this treatment by office staff has become all too common everywhere we go.  Do some see a child in a wheelchair and feelthat child’s time is somehow of less value… he will not complain, he does not have a playdate planned and mom is simply a state at home mom with no value to society.
The week continues with lots of un-returned phone calls and planning to finally schedule a Neurosurgery appointment for this coming Monday.  A CT and shunt series at a radiology office.  The dreaded Ophthalmology has been delayed until Fall.  All of it adding to the stress of going through these motions to keep all parties placated in the oversight of Riley’s care.
Wednesday found us at the dental school,for both boys for teeth cleaning.  The school has been a wonderful way to care for Riley’s needs.  The young dentists are undeterred by the special needs challenge and interested in his health as opposed to some of the long-term professionals we have tried in the past.  Hopefully no one is offended by my summing them up so disinterested in Riley, I spent my early years of work in my fathers’Oral and Maxillofacial Surgery Office and learned the importance of respecting the patient through observing my Dad over the years.   I maintain a “cheat sheet” of important information which I have shared with every medical office Riley enters. There are no secrets to Riley’s condition.   Upon being called back for our appointment, a previously unknown Sergeant had a copy of Riley’s cheat sheet up on the screen for review.  “Any changes to his condition?,” she demanded. “No, pretty much the same,” was my answer.  Then I added, “he seized on Sunday.”  This met with a reprimand that they must know everything right up front and she began to argue with me.  We had only just begun the conversation.  Here she was with full-disclosure right in front of her and she wants to yell at me.  She started to go down the road that he could not even be seen that day having had a recent seizure.  I was taken aback.  Perhaps special needs do not have the right to full care, it is simply too risky for medical professionals to work with them?  Maybe she does not comprehend special needs or the explanation of “seizure disorder” that I had put directly in front of her. Before the confrontation escalated, a familiar face appeared, Dr. M, Riley’s first dentist in that office before she graduated.  She had returned to be one of the leads in the office and she was a very welcome and reassuring presence.  The Sergeants’ concerns were left behind and Riley received his x-rays and cleaning which he tolerated beautifully.
Some of my frustration with all these appointments is due simply to navigating everyone we encounter.  So frequently, people block our path, quickening their step to be ahead of us or allowing children to stare to the point of causing us discomfort. There are individuals who cross our path with consideration.  Those of you who do this, I notice and I remember  and appreciate your gesture no matter how humble.  I remember the tall and handsome twenty-something Asian man tripping over his own feet when Ronan reached the door of McDonald’s off Daniels before him.  He could not help, but the intention is enough for me.  I remember the sixty-something gentleman passing by during the wheelchair unloading at NDIC asking how he could assist, this is a procedure that is difficult to explain,but the desire to help warmed my heart. Those small moments are few and far between, but they stay with me.
Robert, Burt, Heidi and Pick A Spot bring Riley around to pose for the camera.
Ronan waits patiently.  Note: both boys have added to their tie dye collection.
Thursday brought us back to Naples Equestrian Challenge for Riley’s lesson.  Currently, there are plenty of volunteers,likely this is thanks to the high-schooler’s fitting in their community service hours over the summer which gave me the chance to snap some shots of Riley aboard Pick A Spot.

 Taking a moment from the barn, volunteers rest in the sliver of shade. July 28, 2011 4:30 pm.
Better gonow and do some more planning.
Anyone else out there have appointment stories to share? I thank you for stopping by.
We are all special… by Stacie Wiesenbaugh

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from “ReRe,” John’s mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye…. no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds… those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don’t currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.’s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us…. mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special… by Stacie Wiesenbaugh

Reliving Zachary’s moment: By Rebekah Aldridge, Guest Post

In 9 years of being a mother of a special needs son, Ithink I have heard most everything you can imagine.  From insults to injury and blessings to prayers.  So it kind of comes without saying that you develop a thicker skin than most.  Otherwise you would certainly be offended far too often than you would like.  
Zachary enjoys yachting with his mom with Freedom Waters Foundation, above.

Anyway, every parent deals with their “wound”in a different way.  I have chosen to see my situation as an opportunity to be my best (even though most days I do not feel like that).  It has been 9 years since Zachary suffered severe abuse at the hands of his biological father which has left him with permanent brain damage and left paralysis. Even though my son is the victim of this abuse and I try not to be selfish about his situation, it has taken several years to try not to think about it.  Until Tuesday, I thought that this wound has long healed.  But I found out that not only is it still an open wound for me, but it is an ugly infected one that reared its ugly head this week.  This is not to express my opinion of Casey Anthony atall, I am not here to solicit your opinions either.  It is merely watching the outcome of her trial that has exposed my ugly, sore wound.  
See, I am from Orlando and my son was abused in Orlando. We spent 52 days in PICU and most of those days he was in a coma. It took nearly 3 years to put his father in jail for his crime (which to this day has never been admitted by him).  I faced many, many judgments from my family and friends by offering a plea deal as opposed to going througha trial.  It’s a very long and boring story that leads up to that point,but the short and sweet of it is that I offered (through the State Attorney’soffice) a 5 years sentence in exchange for a guilty plea.  MANY people disagreed with my decision and thought that I was letting him off the hook fartoo easy for this life sentence that he served to my son.  I have since settled myself with my decision and moved on.  
I did not know that it was still a very sore subject until Tuesday.  Because there was also such alack of physical evidence in my sons case, his father could have walked out of that court room, just as Casey Anthony soon will.  Again, I am not here to hear about her or others opinions about her but merely to share my wound process with you.  My reaction to the verdict was outrageous.  You would have thought that I was a member of little Caylee’s family.  I had to go clear my head, and after much deliberation with God, I realized why it affected me so much.  This was my own little precious wound that no one has ever been able to see.  Like a little secret I have been hiding from the world under this strong woman facade.  It is never my goal for people to feel sorry for me in any way, my son is truly a blessing and he is a miracle child.  He survived what most children do not and has overcome so much in9 years.  To get back on track, I thought these feelings were long behindme.  The reality of it is that they are not.  Since Tuesday, most of my family has called to say what a great decision I made 6 years ago. 
 “Good thing you chose to take the deal,” “I was against you offering the deal, but I have changed my mind after today”… and other such things.  Which I am grateful for! I have an amazing family, that has supported me and Zach through the most difficult of circumstances.  
My point to all of this is that even though I have developed this thick skin to most everything, there are still things that can send me to my knees in tears.  After all we have been through and the things I have seen and heard, you would think that nothing could faze me. So now I am working on picking myself back up and learning to deal with this new feeling that has sent me reeling.  My mother said it best today when we were at lunch, she said “You have a huge scar.  Even though your wound has healed there will always be a scar.  Nothing will ever change that.”  She is right, no matter what I do that scar is still there and I was completely blind-sided by what was festering underneath it until it was opened and exposed on Tuesday.  AllI can ask for is prayer, that maybe with more time my scar will fade.  I can tell you that 9 years later I still feel the sting of the day that changed our whole life.  I would never trade one day of the life I share with my son, he is just awesome.  But I would ask that if you read this and you see someone with a child that has difficulties or “looks funny,” try not to stare or say something ridiculous, because that person has probably suffered a great deal and a harsh word will not make them feel any better.  
I have developed a skill that I am not proud of since my sons accident and that skill is making people feel stupid while being super nice about it.  Today at Calistoga, a man (I assume that he must have been starving) cut in front of me and let the door slam in my face.  I had my 5 year old in one hand and my son in the other(by the way it is obvious that my son has disabilities, they are physical). Then he turned to watch the door shut in my face.  I could have run in there and yelled at him, and called him was he truly was but instead I simply smiled at him and said “Here let me hold the door for you, I am sure you must be starving” and I walked away.  I did not give him a chance to talk back to me, because in my opinion his comment, even if it was an apology, would not have mattered. 
People are rude and there is nothing you or I can do about it, but maybe by sharing my experiences and Stacie’s experiences people who read this blog could be less rude.  Yes these things really do happen, it sounds appalling but it’s true. Remember this, just because the child may not hear what you say under your breath, doesn’t mean I can’t.  Thanks for letting me sound off!

by Rebekah Aldridge  “Make the best decision you can with the information you have at the time.”

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