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.