Wednesday, July 17, 2019

Healthcare Worries

A Condition. A Diagnosis. A Pre-existing Condition.

We all have a pre-existing condition, most just do not know it yet. This point was made in a recent article I read, in regards to the current political healthcare battle.

The last week has been consumed with Brayden’s waiver and insurance.

I have been collecting charts, data, letters, forms, notes from phone calls and meetings.

Trying to understand the waiver/insurance deciding to cut Brayden’s nursing AND attendant hours. Saying that he did not meet their requirements.

It has been the SAME forms completed, his care coordinator, the nursing agency and his doctor sign off on, for many years. The form gives points for medical conditions, tally those points to show how many hours he qualifies for…he has always qualified for 16+ per day. Somehow a doctor and review (does anyone really read all of Brayden’s paperwork) says he only gets 10.

Here is the BIG problem.

Brayden costs too much. Brayden is a liability. No one wants to take responsibility for Brayden and those like him.

We are seeing this with insurance/waiver, the school system, programs that work with special needs kids and basically everything else. To all of these, Brayden costs too much, he is a liability and no one wants responsibility for such a high cost, medically fragile child. 

In Brayden’s lifetime, it has not seen great improvements, it is worse.

What is someone’s contribution to society? Are they are drain/stress on society? What is a person’s value? Who gets to decide this?

And this is not just about medically complex children. Healthcare has an impact on everyone. I am going to get a bit political here. And I will put it out there, I consider myself on the conservative side of things, and certainly do NOT vote that way all the time. I try to do my research and assess. Healthcare has been a deciding factor for me, I do not think any party has a great plan for Healthcare.

As many know, the Republican and Democrats on the Federal and on the State level have been arguing Healthcare reform for many years. Obamacare, ACA, was doomed to fail because there was no real way to pay for it (the medical community and insurance companies found it to be too costly). But I will tell you a lot of it had good intentions. It required coverage for pre-existing conditions, removed lifetime caps, included treatment for mental health and chronic diseases. It also expanded Medicaid, which is Brayden’s secondary insurance. Yes, there were many troubles with Obamacare. But I really do not see the Republicans plan, as much better, some trying to leave decisions in the hands of the insurance companies or the state to decide. Insurance companies could charge more for pre-existing conditions or possibly be denied. States could decide if insurance companies could have that power. Also the potential Republican plan is looking to make large cuts to Medicaid programs, this is a hot button issue. I think many see Medicaid as supporting those is poverty or unemployed or leaches to the system. Medicaid is so much more than that and includes those in every walk of life.  Brayden’s waiver/Medicaid program has been a vital part of his care and health. He is on a program through Virginia that gives him access to Medicaid as a secondary insurance.

With all of the current troubles we are having with Brayden’s insurance and waiver, I am fearful.  Fearful that the world is quantifying what some is worth; laws and insurance get to make that decision. Who qualifies for treatment, medical attention, etc.?

Would people hesitate to get preventative care or screening? Would they get dropped for testing positive for the BRCA gene? Or have large insurance payments (that most could not afford) for family history of cardiac problems? Prenatal testing that could show defects or medical issues. Would people not get testing? Would people consider aborting because they could not get or afford insurance for a child that is yet to be born? Would insurance companies require DNA testing, family medical history, health screening to qualify for a plan?

Perhaps I am a little burned by all of this.  Even in our home owner’s insurance. We had a house fire. It cost the insurance company. They covered everything with no real problem. BUT we were dropped from that insurance the moment our renewal time came. Now we are considered “undesirable” candidates. We have few options (expensive) and have to wait a period of 5 years, without incident, to return to being a good candidate.

And guess what? Health insurance is heading that direction.

Brayden and our family is undesirable to health insurance companies and programs.

As I said in the beginning of this blog: We all have a pre-existing condition, most just do not know it yet.



***Disclaimer, I gave a VERY basic outline and my personal highlights/thoughts of ACA and the Republican plans that have been in the works. They are still working on all of it, so wording gets changed. There is a lot of push and pull from both sides of the isle. It is happening on your state level, how they will use funds. And happening on the federal level. I want everyone to understand how important Healthcare is, something can and will happen to your family.  Looks at both sides of the Healthcare arguments, through the lens of what if this happened to me, to my loved ones.

And side note, if you have watched Man in the High Castle - discussions around Healthcare worry me to the level of Thomas Smith, Obergruppenfuhrer Smith's son, with a pre-existing condition.

Monday, June 24, 2019

Current Trauma Stress Disorder

I have read, and read, articles about Post Traumatic Stress Disorder (PTSD) in parents/caregivers of medically complex children.
I have never liked identifying with PTSD, for many reasons. One being the “post” part of it.
Truth be told, there is no real post trauma; there is a post, current and pre of trauma, all coexisting in our daily life.

I tend to not be very forthcoming with how difficult things have been for 12 years with Brayden. For one, I do not want pity or to make others uncomfortable when we talk about Brayden. I also have no need or desire to dwell on the bad because we still have him with us; we have things do today; we have two other children to keep us going with “normal” activities; we have jobs to do; and we still like to and want to have fun (which is why Jeremy and I learned to find humor in just about anything).

But the trauma that has happened…
  • First the non-diagnosis, then an overload of brain malformation information uncovered, but never any diagnosis. 
  • Putting your baby through more tests, scans and blood work, than I can even remember.
  • Being told your child, will not be able to do much of anything. No walking, no talking, not even able to see.
  • Seizures, years and years of seizures. Seizures started as a newborn. Seizures that could last 9+ hours, breathing trouble, clusters, heavy medications that can cause more breathing troubles, ER, transports from local hospital to major hospital.
  • Not being able to eat.  The trauma of having a child who cannot drink or eat on their own. The frantic state of trying and trying, and finally surrendering to the surgery for a feeding tube. Multiple attempts with feeding tube, to a G-J tube and then to a g-tube and a j-tube.
  • The feeding tube pops out, the first few times this comes out…holy moly panic. There is a giant hole in his body. 
  • Vomiting the uncontrollable vomiting/retching. Bloody vomit, vomit all over him, his bed, the car.  Sometimes bloody, sometimes burning his skin so badly that we had to use burn cream. 
  • Having an ileostomy. He cannot even poop on his own. He poops in to a bag. Part of his small intestine is outside his body. (and for a little humor, the smell of that poop is trauma) 
  • Broken bones, busted tubes, infections, etc. 
  • Emergency room visits. 
  • The procedures or surgeries, oh the surgeries. Nothing simple or easy.
  • The recovery from surgeries, often harder on him than the actual surgery.
  • Jeremy calling me from the hospital to come quickly, since Brayden was not doing well. Or me calling Jeremy to tell him the same.
  • Hospital stays, need I say more. 
  • Having to make major medical/life changing decisions, over and over. Or the decision to not do anything. 
  • Seeing your child hooked up to more things than you even knew could be possible. 
  • Machines to keep your child going and then brought into our home. Suction, oxygen, pulse ox, feeding pump, Bipap, etc. 
  • Seeing your child in pain or unresponsive.  That is torture. 
  • Children dying. Friends that you have walked this medically complex journey with, losing their child.
  • Having a hospice team show up in hospital room, when you did not request. 
  • Having those first hospice meetings and paperwork. Deciding how you want to your child to die, if/when you have to make those decisions. 
  • Talking to our other boys about Brayden's health and the seriousness of it.
  • Being unable to help your child. TORTURE.
And this is just the list off of the top of my head.

Then the trauma in even the little day to day things.
  • DNR sign in your child’s room. A daily reminder. 
  • Fighting with insurance companies. This exhausting. I have screamed and cried over insurance phone calls too many times.  And it is only getting harder every year. How do I prove my child is worth it?! 
  • Actually having a conversation with our insurance company, they basically ask how close Brayden was to dying…I snap and tell them to never ask that question because they were in the process of approving his services. 
  • Fighting for medication or equipment.  I cannot even begin to explain the insane process and battle that happens with our primary insurance and then to his secondary insurance. It is frustrating and the process seems to constantly change. 
  • The feeding pump beeps, then beeps and then beeps again. Troubleshooting that thing. 
  • Getting the mail. I get anxiety even just getting the mail. Bills that insurance messed up, denial of services, more paperwork, etc. I make a pile and try to deal with it all once a month.
  • The paperwork and meetings. We have paperwork and meetings for: waiver, county, agency, nursing agency, hospice, insurance, secondary insurance, school, IEPs, etc. 
  • Daily hospice phone calls.  The calls itself are brief and easy.  But we get hospice phone calls every day. And home visits, for over a year now.
  • Finding help for Brayden. We live in fear of losing a nurse, finding a nurse, losing respite, finding respite. 
  • Trusting someone to be in our home, take care of our child AND all of his complex medical needs.
  • Trying to even leave the house with Brayden.
  • Making sure home or leaving home is accessible for wheelchair and his needs.
  • Going on vacation…ha, that is a special kind of stress.
  • Not knowing what I will find each morning. I cannot explain where my head is, each and every morning. Will I walk in to find him in a seizure, covered in vomit, not breathing, tubing wrapped up, things leaking, unresponsive, temperature is 90 degrees?? I have seen it all.
  • The basics of me even taking a shower. Someone else needs to be home. Or Brayden must have on his BiPap when I hop into the shower. When he was little, I would bring a bouncy seat in to the bathroom. I am paranoid.
  • Brayden going to school. All the work to make that happen.  The first few years, I followed the bus many times. I sat at a nearby coffee shop, just to be close to the school.
  • The green bag that goes everywhere Brayden goes. The medical bag has all of the “just in case” items. Seizure rescue med, ambu bag, extra tubes, etc. Also carrying around an oxygen tank, where he goes. Because we have had to use those items.
  • A daily, constant demise of Brayden’s health. A very slow demise with each year that passes.
  • Our family is constantly split. One of us with Brayden, the others out or Brayden at home with nurse. There are very few things we have done all together.
  • Living in a constant state of waiting for the other shoe to drop. Because it does drop. All. The. Time.

Here's the thing, we have been doing this for so long, we almost don't know what is would be like to not have this level of constant stress. It is in our face, every moment of the day and night. But we still have Brayden. Today is he content and comfortable.  We have Carter and Luke to keep us busy with other things. Jeremy and I have each other.  And most importantly, we have our faith.

Sunday, April 14, 2019

Back to Blogging

Brayden is still around. Still struggling with his health but doing ok.

I have not been blogging for over a year. Partly because I have not had the emotional capacity to do so. But mostly because I have been locked out and unable to recover it.

Finally logged back in this morning and hopefully will be back to blogging soon!

Wednesday, March 21, 2018

Brayden resting at home

Brayden loves to be home.

He is still adjusting his days and nights. Angry-sleepy around 5:00 p.m. and awake around 3:30 a.m.

He is doing better controlling his own body temp without much assistance.

He still looks yellow.  This is probably a result of his high bilirubin.

When Brayden was discharged his labs looked slightly better. His bilirubin was still high (actually got higher while in the ICU).  His other liver numbers did get better (but Brayden's liver numbers have not been good for years due to all of the meds his has been on).

Actually most of his labs from the CBC to Chem 7 and more, are all off but his time in the ICU helped...leaving the hospital with almost all numbers trending in the right direction.

Honestly, we just do not know if some unknown virus is just running its course or this is the new state of things for his body.

But overall Brayden seems more comfortable and less "sick" behavior.

Brayden will be visiting his GI doctor next week, as well as having some repeat labs.

His neurologist, GI doctor and pediatrician have been in constant contact. We started with the Palliative Care (PANDA) Program.  Through this program, additional nursing is sent to the home and any additional support we would need.  

Wednesday, March 14, 2018

Brayden in ICU

Brayden is in the PICU at Children’s National. 

Currently treating him as hypothermic and sepsis. Struggling with his body temperature, he has been around 90 degrees in the last 24 hours. He has been incredibly lethargic, scary lethargic.

It all seem to start last week.  Brayden started retching (very violent retching). But it was not happening consistently…until last Wednesday morning. The retching was out of control and bloody. Brayden’s body temperature was very low.

We headed to his pediatrician (who has been in contact with Brayden’s specialists at Children’s).  Brayden’s temp was reading around 90 degrees.  We did lots of things to warm him.  And needed blood work, which was an impossible task but they finally got it.  Brayden also had a chest x-ray, while there he proceeded to retch and retch lots of brown, old, blood.

Nothing significant came from the blood work.

We headed home and put Brayden on a bit of a gut rest.  Also needed to deal with the increase of seizures, most likely from his GI and temperature troubles. No food via j-tube. Only Pedialyte and water.  Then over the next few days we worked back to his normal food, at a slower rate.

He had been acting a bit under the weather over the weekend but nothing to terrible.

Then the last couple of days Brayden seem to go in to hibernation. Really low body temp, deep asleep (almost unresponsive). And looking yellow.

We could not get his temperature up.  So we headed to the Children's ER this morning.

The ER doctors looked for obvious signs of infection but nothing found quite yet.  And made every attempt to warm him. Lots and lots of fluids (given hot through his IV).  Again, lots and lots of fluids via IV. A warming blanket and light. Not much increase in his temp.  He has been around 91 degrees all day. Did an ultrasound of his gall bladder and liver. Chest x-ray was done as well.

Brayden’s neurologist, and team, stopped by the ER.  As well as Brayden’s GI doctor.  Always so grateful to see their familiar faces and have them talk with the ER doctors.
All seemed to agree we needed to find a reason for his troubles.

Brayden was moved to the PICU last this afternoon. Working on his temperature, more labs and ultrasound or CT of his abdomen.

As of this evening, Brayden has perked up a bit.  Temp increasing as well. Small steps in the right direction.

We know his body is tired and we do not know how much more his body can handle.  Pray that we find that best mode of treatment and plan moving forward.

Friday, February 16, 2018

Insurance has all the POWER

Insurance has been compromising the health of Brayden. 

Brayden’s secondary insurance went through a major over haul (throughout VA).  I attended meetings, phone calls, talked with other parents and reviewed all paperwork.  I made the best, educated, decision that I could make.  The transition to the new secondary insurance has not been a smooth one.

Our primary insurance changed.  Jeremy started his own business two and half years ago.  We needed to sign up for individual/family plan.  The ONLY plans available to us were those on Obamacare/ACA/healthcare.gov.  Brayden’s existence/life is considered a PRE-EXISTING condition.  We are not eligible for most health insurance plans because of Brayden.  The ONLY good thing to come out the ACA was being eligible for health insurance regardless of a pre-existing condition.

Getting a little political here… The ACA was good in theory.  But there was no plan to pay for it.  Thus insurance companies, hospitals, doctors, etc. were not paid enough, in a timely manner, etc.  The result – many insurance companies, hospitals, doctors have dropped, no longer participate in ACA programs.  Starting in 2018 only two insurance plans were available to our family (again because Brayden is a pre-existing condition).  Cigna Connect and Kaiser.  Neither one great choices for anyone with chronic health troubles.  A side-note: any prior administration, as well as the current administration, have no great plan for healthcare.

Now imagine changing, arranging all of Brayden’s doctors, medications and medical supplies.  That is around 100 items (I know because I have been on the phone with the insurance companies going over it all).  Below is a list of some of his DME supplies.

Just in the last 24 hours, I have spent approx. 7 hours on the phone. 

Our new primary insurance denies just about everything and asks for approval, review and/or prior authorization.  We have needed to find a company that would provide all of Brayden’s medical equipment:  Feeding tube supplies and Nutrition, Ostomy, Oxygen, and Suction.  This should have been happening the beginning of the year.  It is now February 16 and the company that our insurance company assigned to us has not delivered one thing.  If one thing on the list is something they question, the entire thing seems been held up, without much explanation or reason.

Brayden food is Elecare Jr.  A powder (like you would make baby formula).  Not available at the stores.  The formula has been on hold with the insurance company.  Every time I call, I get a different answer as to why.  He has been on this formula for many years.  Lots of documentation and prescriptions supporting that he needs Elecare Jr.  Brayden only gets food via j-tube and there are few options that can work for feedings in to a j-tube (tube in to his small intestine). 

Brayden's ostomy supplies have been a mystery.  The insurance company assigned us to the equipment company.  Doctor sent over scripts for it all.  We wait and hear nothing.  I talk to who knows how many people.  And just yesterday I speak to a supervisor who told me they do not even have ostomy supplies and we need to find another company.  Um, this info would have been helpful weeks ago.

As for all the other supplies.  Last night, we actually got a phone call from the equipment company after 9:00 p.m. saying they were not able to deliver Brayden’s oxygen supplies tomorrow.  I asked when they would…they had no idea.  As I have been typing this, I received an automated call (from an Ohio number) that a delivery will be coming today.  It did not say from where or for what...but something should be coming today.

Some person sitting at a computer, as ALL the power over Brayden’s medical care.

The medical equipment company is a broken system all on its own.  Apria’s call center has no patient care.  They sure can transfer you and put you on hold and give you some BS answers as to why your son is not receiving supplies the he needs to LIVE.
Part of his tube, clogged with beads
And now Brayden’s secondary insurance.  Denying mediations and some supplies.  One medication we have been fighting for 3 months.  They do not like anything the doctor's office has been sending to them.  It is not enough for approval.  The solution for was Brayden to try the over the counter medication.  Which has been a disaster.  Again, Brayden gets things through a feeding tube, has no motility in his stomach and needs a very tiny bit of concentrated medication (since he cannot handle much).  The OTC med breaks down into small beads.  These beads clog everything.  And causing problems that should not even exist for Brayden.  We are still fighting with them about approval.  Brayden’s case manager (for this secondary insurance) has been fighting for Brayden to get the proper med.  Brayden’s pediatrician has spent too much time on the phone and with paperwork, fighting for him to get it.  And Brayden’s nursing company has been advocating for it too.  And still…some one sitting at a computer can over power all of them with insurance codes and approvals/denials.

Another medication, that we previously were able to fill last month, is now being denied by his secondary insurance.  Their response to Brayden’s doctor??  “Has Brayden tried other alternatives to this medication?”  Um, why would he try different ones if this has been working (for 8 yrs., by the way)?  It is a common medication, used by many.  This morning the insurance company told me that he needs to try the dissolvable tablet (as opposed to the liquid).  Again, Brayden’s gets this med into his j-tube. We are not “trying” other alternatives.

The insurance companies are literally compromising Brayden’s health and life.

As we fight through all of this we have been paying for some things out-of-pocket (for some things that have been covered for 10 yrs).  And we have been given supplies from other families (who have reached into their back up supplies to help us out) and used most of our back up supplies.

Nov 2017, all of Brayden’s needs were being met.  No troubles with insurance.  Things he needed were always ready, keeping him healthy and alive.

Starting in December 2017, every week has brought new challenges with insurance.  I have cursed more in the last few weeks than I have in my life (and I am not one who curses on the regular so my choice of words and how to put them together may have been a bit more comical sounding).  I have cried more about insurance troubles and frustrations, than I have cried in probably a few years.

I feel like Brayden’s medical team (who is AMAZING) and I have no control over meeting Brayden’s needs.

And if you know me, not having control, does not suit me well.  Yesterday, I needed control over something so I cleaned and purged many items from the garage.

Lord, help us.  I am exhausted. I am so tired of being stressed, especially over stuff that I should not be stressed about.

Tuesday, August 15, 2017

the Brothers

This blog is all about Brayden.  But what about his older brothers, Carter and Luke? 
How is it to be Carter and Luke?
My heart has been heavy for them lately.  In their short lives, they have seen and heard, had front row seats to very serious and traumatic events.

As Brayden’s big brothers, they had to quickly learn that life is not about them.  They have seen their brother in very dire situations, ICU, hospitals, tests, etc. 

They know how to operate the feeding pump, pulse ox, and Brayden’s other machines. They know how to handle Brayden’s seizures, poor breathing, projectile vomit (even with blood), hold gauze over open holes in Brayden’s body when tube comes out…all have become somewhat of a disturbing norm to them but nonetheless it can add chaos to a day.

Their life always has a level in instability.  Many years they have watched their parents rush off to the hospital or spend days with doctors, not quite knowing where they would end up, whether at a neighbors or in the ambulance with their brother.  Not knowing when anyone would be home and learning to be self sufficient.

Even when not rushing to hospital, there is always a chance for instability within the house.  A simple example, I was loading Brayden so I could take the boys to practice.  But as I was loading, Brayden’s feeding tube popped out…which delays leaving and possibly making them late for practice.  Many nights they cannot be loud, have friends over, etc. because Brayden needs to a quiet environment.  When Brayden does come out with us, we always have an exit plan or a plan in case things go sideways with him.

Plans constantly change, vacations not taken, events not attended/adjusted but we still try to find fun for them and keep their routine as best as possible.
The boys handle people constantly in and out of our house who are part of Brayden’s care (some of which have been good and some have not).

Brayden’s needs trumps all others.  Fair or not.  Every bit of their life, has to go through the filter of Brayden.  We try to not make it seem like that is not the case but there is just no way around it.

They have seen (most often than I care to even admit) their parents completely depleted, exhausted and checked out because of dealing with the heaviness of Brayden’s medical events and needs.  They have seen fear and sadness in our eyes and in our countenance.

They know the seriousness of life as we have had discussions with them about Brayden’s health status. 10 years they have been a part of their brother’s roller coaster.  And now, as we enter a new phase of Brayden’s care in the palliative path.
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Then in the last couple of years Carter and Luke have seen and heard too much beyond just Brayden’s needs.  Things that will mark their childhood and how they see life and death. Just how many hard conversations have we had with them?!

Jeremy’s mother.  Carter and Luke realizing that their dad found his mother and we had to rush to the ER to help in some way.  Then Jeremy spent the next several (many) months rushing to find her, talk to her and to check on her.  Leaving Jeremy and his siblings in a constant state of concern and worry. Carter and Luke have seen their father physically collapse from those events.  Not even two years ago, Jeremy got the phone call that his mother died.  Carter and Luke were standing right next to him as he heard the words from his father.  Jeremy rushed off to his parent’s home.  Carter and Luke knew immediately what the call was about because of the months leading up to that day.   They found out the dramatic, awful details of the past several months (not by our choice, we tried to soften the details).  The loving grandmother that they saw many times in a week, was gone and even the previous months, she was just not herself.  Depression and suicide is now part of our family story and words they know all too well.  Since then, every holiday, birthday and event are now different since their grandmother was the center of the Jenkins activities.  The ripple of effects are constantly around.

Our house fire and rental house.  Being displaced for several months, the chaos and troubles that it brought.  And if I went into any detail about it, you just would not believe it…if anything could go wrong with the process and the rental it did.  It was awful.  A home should provide safety and comfort was just not happening.

Carter and Luke watched as other families have lost their child or loved ones, been to services and seen those moments.  People that had been a part of their lives.

This summer the boys and I planned to have a day with my brother and his family.  We planned to meet at the zoo.  As we packed the car that morning, I got a message that their 3 week old baby was up all night and they were taking him to the ER; seemingly nothing to concerning but wanted to have him checked.  The boys and I decided to still head to the zoo, thinking we could pick up the baby’s older brother and/or still see them either for lunch or at their home after they saw the doctors.  About an hour later, as we were driving to DC, I got a phone call.  It was my mom, screaming and sobbing that baby James had died, without cause or explanation.  I had to pull the car over on the highway, sat and sobbed with my mom, my boys sitting in absolute silence…they have heard that kind of phone call before.  I attempted to gather thoughts, get back on the road and figure out the next steps.  The following days were hard.  Carter and Luke saw their normally fun-loving, funny, joke-cracking Uncle Matt and Aunt Betsy broken in a way that is indescribable.  

Just over a month later, Jeremy had a surprise for my 40th birthday.  He had all the boys situated for about 24 hours, so he and I could get away for a night.  As we were settling in to our hotel, my parents were in the car with Luke, heading to Carter’s basketball tournament.  My father got a phone call.  His father passed away.  Luke heard it all.  Luke’s healthy Great-Grandpa-at-the-Beach, had just seen his doctor a few days before and got a clean bill of health.  Luke riding with his Papa and Mimi as they had to turn the car around.  Jeremy and I left my birthday get away and headed to get Carter from his basketball.  Carter seeing us arrive, he obviously knew something was not right.  After his game, we explained to him what was happening.  We headed home so we could pack up and head to be with family. 
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In all of this, we have constantly talked to the boys about God’s plan.  The promise of heaven. It is hard to have those conversations with them.  Because, even as adults, it is hard to understand these events, let alone help your children understand.  Sometimes we just do not know how they are taking it all in.  Oh how much I want to protect their hearts, want their faith to grow and not be crushed by the seeing the hardest parts of living in such a broken world.

As we make decisions for Carter and Luke, moving forward, trying to help find the best path for them, I ask that you pray for them and for us.  So much of our efforts have been in different directions over the years. The more people that look out for them, pray for them, love them and mentor them, the better, especially as we enter the teen years. 

Thankfully Carter and Luke have been handling all of it quite well.  It seems as though their hearts have been protected in some way but there are times that they just want to be care-free kids.

And please pray for our family and friends that are grieving the loss of their children and loved ones.

Trauma and grief changes everything.

Proverbs 3:5 Trust in the Lord with all your heart and lean not on your own understanding.

Wednesday, August 9, 2017

Brayden's Health Update

Before getting into any details, I just have to say that Brayden is doing well (at least his version of doing well).

Brayden's spring time, left us in a scary and overwhelming position of having discussions and attempting to make decisions that no parent ever wants to address when it comes to the care and medical care of your child.  Yes, all of it was a long time coming but I did my best to push it away as long as possible.

Currently, Brayden's not-breathing/not-responding episodes have been few and far between.  Really going on about 6 weeks of no major episodes.

We still check his pulse ox regularly (take it with us too), haul around oxygen tanks (because I never want to be stuck with out a working one again).

Brayden did make it to ESY (summer school) some...not as often as I would like...and he was not home as often as he would like.

Thankfully, Brayden has been relatively stable for the summer.  We needed him to be.

And here is the cruel irony of this summer:

Brayden had a pretty bad bill of health.
Brayden's cousin, James, a three week old baby, totally healthy.
Brayden's great-grandpa, William Johnson, even though he was 94, had just seen his doctor and declared totally healthy (the man had only ever been in the hospital once in his entire life).

Brayden, whom we had been in discussion about DNRs, medical treatments or lack thereof, had a healthy summer, without any troubles.
James passed away, without cause or explanation, at the emergency room in a matter of moments.
Great-Grandpa, passed away at his beach home, seemingly in his sleep.

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God called James and Great-Grandpa.  Why?  I just do not think we will know those answers on this side of heaven.

One day, we will see.  One day, the arc of our stories will all make perfect sense.  One day, we will trace the lines of our scars and find them to have fallen in the most pleasant of places, to see in them our great inheritance.  One day, we won't need to hope, nor will we need to be healed because we will be face-to-face with the source of both, the source of everything. Jesus.
And in the glory of His face, the darkest suffering and loss we have endured will face like shadows of daybreak.  Until then, the moments of releasing our lives into the hands of a God we cannot see are the closest to wholeness we will come on this side of eternity. This is our truest healing - the healing of our souls - and it sustains us when we wake up tomorrow to an unknown but hopeful new day.
- Hope Heal by Katherine & Jay Wolf

Monday, June 12, 2017

The Real behind the Facebook Posts

Over on Facebook, I tend to post the fun, light bits happening throughout the week.  Never quite seems to be the place to share the hard stuff, unless I post a link to this blog.

This weekend, my Facebook posts felt inauthentic.  Because behind those photos of fun, Jeremy and I were tired and stressed.

Friday night post: Great concert with Great friends.
     Truth behind those photos, started Friday morning.  Jeremy and I were driving Brayden to DC for an appointment.  On the way, we got a phone call from the middle school.  Carter was sick and needed to go home.  I may have asked, "Well, how sick is he really?! Because we cannot come get him." Then there was scrabbling, trying to find someone to pick up Carter and drop him at home.
     We made it to Brayden's appointment, Carter made it home.  We meet with 10 different people going over Brayden's medical history for hours, in extraordinary detail.  Hard conversations. Then off to the lab for a massive amount of blood work (which means too many sticks for Brayden).  Absolutely exhausting.  I will go in to detail about this appointment in another post.
     We headed out of Children's, since it was a Friday afternoon in the summer, that means tourists everywhere (for the love people, please use the cross walks and follow the signs) and lots tourist and commuter traffic.  Finally made it home.  Checked on Carter, who was rocking a temp over 102 (oops, sorry I made him go to school but he did have a math exam).  Our Ms. Stephie arrived to take care of Brayden for the night and now Carter.  Jeremy and I changed clothes because lets be honest after being in the hospital all day, you feel slimy.  Headed out the door for more traffic.  Ended up being an hour late to meet our friends.  On the way, Jeremy and I thought this night out could be a really good idea or a really bad idea after the day we had.  Thankfully the time out was wonderful but, boy the next morning we felt rather old and tired.

Sunday post: Basketball Camp for Carter and Luke.
     The day started early with Jeremy and Luke heading in one direction to a basketball tournament.  Brayden and I were taking Carter to a basketball tournament in another direction, since Carter was feeling much better.  I continually underestimate how much effort and time it takes to get Brayden out the door. I go to scoop Brayden out of bed so we can leave...but Brayden has soaked his diaper, chux, clothes and bed.  Our on time departure was not happening.  And if you know Carter at all, then you know he likes things to be just so.  Being late is not something that goes over well with him.
     The car was also packed with Carter and Luke's bags and gear for basketball camp since we would not have time to go home. Being gone all day, means I had to pack everything for Brayden as well (feeding pump, oxygen tank, meds, emergency bag with all the "just-in-case" things).
    Carter's team won.  Jeremy and Luke arrived at Carter's game.  Carter was still in the tournament and now he was going to be late to camp (did I mention how much he loves being late).  Brayden and I, headed out with Luke to take him to camp.  In a span of just a few hours, we were in VA to West VA to MD for camp.  Brayden was not having it, fussing started and was not stopping.  We arrived to camp, Brayden not having that either.  I was trying to check in Luke.  Luke was so excited to find his friends that his listening skills were failing.  Trying to get him to check himself in because there was not much space to maneuver Brayden's wheelchair around.  Asking Luke about getting his room key, he had no idea.  Asking Luke about paperwork needed or dorm location or other check-in items, he had no idea.  And Brayden is fussing the entire times so I could not concentrate well either.
     The campus for basketball camp has beautiful old stone buildings, which means accessibility can be questionable.  We spent about 30 minutes, going in and out of buildings, trying to find the elevator because we got many different "helpful" directions for others.  Finally made it to Luke's room (after being in 3 wrong locations)...over 90 degrees outside and Brayden still fussing.
     Carter being late to camp, I checked him in and thought it was a good idea to get his room set up so he could just head to the gym when he arrived.  Brayden did not like this idea.  But by the time Brayden and I made it back in the car, Brayden actually like the idea of being in the car and away from the basketball camp chaos.  Carter finally arrived with Jeremy, we handed him the camp stuff and he was on his way. 
     Brayden and I followed Jeremy's truck home.  Brayden was letting it be known, that he was not pleased with his Sunday.  And the only way we know how to calm him in the car, is it roll the windows down and blast music.  Over 90 degress outside (and I already started the day off sweaty from loading all the camp gear and Brayden) with the windows down, one hot steamy car ride home.
     We made it home, Brayden in his bed and he wanted nothing to do with me.

And the bonus for the day, our dog "found" a ground hog and left for our delight in the back yard when we arrived home.

Sunday, May 21, 2017

Take a breath

The past few months, Brayden has been sleeping 18-20 hrs a day, without much cause or reason.

The past few months Brayden has had severe apnea episodes during the day (not at night when we expect them to happen during deep sleep)...basically his brain forgets to tell him to breathe/exist.  He becomes unresponsive, even to the most obnoxious stimulus.  These episodes seem to come on quickly.  His oxygen saturation stats drop significantly.  We have to quickly attempt to wake him (which does not work every time) or hook him up to his BiPAP or oxygen.  Then it takes awhile for his oxygen/breathing to normalize. 

We sent video to the doctors.  Then we went in for bloodwork.  All of his blood work looks good.  All except the CO2 levels in his body.  They are elevated, not quite to a hospital-needed-level, but elevated enough to show there is a chronic problem with his breathing and his body not properly releasing the CO2.  Thus the likely reason for many hours of sleeping and the other apnea episodes.

Brayden's brain does not always seem to be sending him proper signals.  And now it is having an impact on his breathing. 

There is no intervention that we can do (or are willing to do) to improve his breathing.  We will continue to use BiPap and oxygen at home, while these provide him air, it actually serves as a constant annoyance to remind his brain to breathe.  Unfortunately, this is does not seem like something that will get better for him over time, it would get worse.  As for the amount of time that it would get worse, is very undetermined, it could be weeks, months, years. 

But we have crossed over in to a more severe/serious category with Brayden's health, as well as decisions that Jeremy and I would need to make regarding any (if any) medical intervention from here on out.

The last few weeks, Jeremy and I have been attempting to lay the groundwork for Brayden's undetermined future.  We have not shared much until now because we really needed to take in a lot of information, sort through it with his doctors and decide how best to handle it all.

We talked with Palliative Care at Children's, Brayden's pediatrician and neurologist.  All have given their honest opinions and helped lay out our next options.

Here is where we are thus far:
  • Brayden has been consistently having apnea episodes where he is in unresponsive.  We have been toting around oxygen tanks and often his BiPap machine, wherever he goes. We are trying to figure out the best way to manage the episodes, since they are happening several times a week. With oxygen or BiPap we will continue to use as needed during the day (he is on BiPap for bedtime, through the night already). 
  • Because he is having these not-breathing episodes, we have to plan for different scenarios in case his breathing cannot be corrected through his supplemental (nasal cannula) oxygen or his BiPap.  Putting together a plan that would include medical interventions that we would allow or not allow.  Plans that his nursing agency, school, doctors, hospital would be aware of in case of emergency.  Children's Palliative Care team will help us put together a written plan. 
  • To help facilitate care through Brayden's doctors and the Palliative Care team, we are looking into an additional nursing agency that would come to the house every couple of weeks, kinda like a home doctor visit.  This would be help his doctors monitor Brayden better at home.
  • Technology has changed since Brayden was a baby.  Brayden has never had a diagnosis.  We have been referred to the neurogenetic team to look at a couple of possible tests.  With the technology available now, through bloodwork, we could have some insight into Brayden's brain/body.  Whatever the findings or diagnosis, it will not change or have any impact on Brayden's treatment or day-to-day life.  The meeting with the neurogenetic team and bloodwork will be in the coming weeks but the results could take months.
  • MRI, the neurologist is requesting a MRI (also helpful for the neurogenetic doctors).  Brayden has not had an MRI in many years.  But having a current MRI, they could compare his previous ones to see if/how there has been any degeneration.
Basically, the overall plan is to focus on Brayden's comfort and quality of life, rather than seeking out any major medical interventions.  All of his doctors agree with this (in fact were the ones who brought it up to us anyway).  Also for Jeremy and I to plan for what-if scenarios, so that he and I are on the same page and we can communicate that to those who help care for Brayden day-to-day or in an emergency.

Honestly, we are attempting to just shift in our mindset of how we take care of Brayden.  For example, I spent many years talking (or arguing, depending on who it was) with Brayden's home care nurses about his time in bed.  I have always been adamant that he would NOT be a bedridden boy, basically he was a little boy and needed to get out participate in life, however he could.  Now, it is more like...well, Brayden is so very content and happy in his bed so why push him. He loves his bed.

We will be focusing more on Brayden being content, comfortable and happy, rather than seeking further medical interventions (but still continuing with his current plan of care) and even just in basic things like not forcing him to school all the time (school is still good for him but I will let up with trying to get him there as much as possible).

Lots of very heavy, hard conversations over the past few weeks.  We very much trust and respect Brayden's pediatrician and neurologist, who are all on the same page.

And we whole-heartedly trust God, for whatever the plans may be.

One thing we do not have to worry about is Brayden's weight...the scale hit 85 lbs this week.

Sunday, May 14, 2017

For the love of football

A day in DC for spring football.  And it happened to be Mother's Day. We were determined to make it a family day (forced-family-fun).

Brayden decided to have a breathing episode on the way to the game.  A quick Chinese-fire-drill so momma could sit in the back to monitor Brayden's breathing and hook him up to oxygen.

Game time and Brayden was entertained by the throw-back 95.5, 1990s music (Let me clear my throat...).

Game was won but Carter was crushed, literally.  A play gone wrong, he landed on a player's helmet and then the biggest kid on the field (possibly 3x the size of carter) landed on him.  Hip injury, trip to ER and thankfully a hip contusion (not a break). 

Nothing but fun and Mother's Day lunch from the concession stand.

Wednesday, May 10, 2017

Those lovies

Brayden's animals.  His aromatherapy animals.  His favorite things.

His puppy has been the fav for quite a while.  The favorite animal gets prime position in his bed, placed by his left shoulder for the best possible cuddling.  Puppy has held that spot for many months...until froggie came along.

Brayden actually head bumped puppy out of the bed.  Rather proud of himself, as you can see on his face.  He wanted froggie there.
 And there froggie will stay.

Monday, April 17, 2017

This guy is 10

It is his birthday and we send him to school.
He is totally thrilled (or in total denial).

10 years

10 years ago, Brayden was born. 10 years ago today, we were still delightfully oblivious to any of Brayden's health problems. The top picture has always been hanging in our kitchen, the sweetness and frankly a lot of innocence, helps me remember that in all of this there is joy, simple joy. It was not until a couple of days later that we started to discover his brain was not formed properly. But God knew and thankfully all of Brayden's troubles have been slowly rolled out ...over the years because there is just no way we could have handled them all at once. Brayden's from the beginning, such truth:
Psalm 139: 13-18
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."

Today we celebrate his 10 years but also that we made it 10 years! I would never let my mind wander, to think about him getting older. We have never known a diagnosis or how much time we have with him. Whoa, we made it 10 years!
Oh how much we love him!

In honor of his birthday, donate $10 for his 10 years to Jill's House.
www.jillshouse.org/donate
comment: In honor of Brayden's 10th birthday.
for more info on Jill's House - jillshouse.org

Sunday, April 16, 2017

Georgetown Cupcake

Georgetown Cupcake donated 7 dozen cupcakes for Brayden's birthday. How did this happen?!


It all started in 2008, we were still trying to understand Brayden's ever-changing needs. We discovered a little cupcake shop (Georgetown Cupcake's original place). Stopping for cupcakes became a part of our DC routine. A day at the hospital...well that certainly deserves a cupcake. Their little pink box somehow added a bit of happiness to whatever happened that day. When Carter and L...uke were little, they had to come along to many hospital and doctor appointments, so why not bribe them with cupcakes?! Then the cupcakes became part of our celebrations for school, birthdays, etc. Well...we may have talked about our cupcake stops quite often so friends (you know who you are) brought us cupcakes, when they happened to be downtown. Our pediatrician even got in on the action, texting us about the secret cupcake of the day when we were downtown (FYI, if you know the secret cupcake, ask for it and it is free). 

I knew that if we made it to Brayden's 10th birthday, Georgetown Cupcakes had to be a part of it. Brayden does not eat but he does like the icing. Georgetown Cupcake is just part of our trekking back and forth to DC for many years now. I sent Georgetown Cupcake a message about Brayden's birthday, they replied immediately and offered to comp the order. Their kindness and generosity is all the more reason to love it. I cannot thank them enough for being a part of Brayden's big birthday celebration!
#georgetowncupcake #dccupcakes