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.  

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.

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.