Keeping things interesting - Take 2

Remember that post yesterday where I said, "Matthew and I are increasingly optimistic that he could be discharged tomorrow"?

HA. HA. HA.

Bertrand's discomfort and heart rate skyrocketed this morning.  His heart rate broached the 180s and stayed in the 170s for a large portion of the day.  He was transferred to Peds and then the NICU team got involved.

After lots of oxycodone, epinephrine breathing treatment, intravenous methylprednisilone (a.k.a. SoluMedrol), intravenous morphine, intravenous antibiotic, 3 boluses of fluid on top of his regular maintenance fluids, (and more steroids on the way)... Bertrand's heart rate is down to the 140s and he is much more himself.

We still don't know what went/is wrong.  Many of his labs, including the blood culture looking for signs of infection, are still pending.  However, we do know that his white blood cell count is high but his cortisol is low, which isn't helping any if he is trying to fight an infection (hence the additional steroids on the way).

So, yes, Bertrand is still keeping things interesting.  ;)  Fortunately, he is in good hands and we expect he'll be feeling better soon eventually.

PS - Happy birthday, Titi Saby! We wish we could be celebrating with you with all our hearts.  We love you!

Adrenal Insufficiency Take 2?

Last Sunday, Bertrand was low on energy after therapy.  Then he was increasingly sleepy on Monday. By Tuesday, he was not eating and unresponsive.  Much like during his hospitalization, there were no other symptoms--no fever, no mucous, no cough.

Seeing Bertrand like this was terrifying.  Searching "adrenal crisis" brought up the symptoms of sleepiness, lack of appetite, and chapped lips.  And coincidentally, Bertrand had unusually dry skin and severely chapped lips.

We considered taking him to the ER, but decided to try a stress dose of hydrocortisone first.  Within the hour, Bertrand was completely back to his old self for the first time in weeks!

It's fantastic that we were able to identify and address the root of his condition.  But, it's scary how quickly he went down hill.  It's also disturbing proof that his adrenal insufficiency is very real.

Bertrand will be on the hydrocortisone for 2 more days, and he sees an endocrinologist next month.  I hope he doesn't need the steroid stress dose again.  We're keeping a close eye on him.

A Better Day Tomorrow

"Sometimes we just have to get through the crappy day to hope for a better day tomorrow..."
--Carrie Ostrea, Mom to Hannah, 9 months old with Neuronopathic Gaucher's Disease

I started the day off with high blood pressure due to trying to schedule Bertrand's endocrinology appointment. Bertrand's Adrenocorticotropic hormone (ACTH) is VERY high. His doctors want him seen by an endocrinologist who'll be able to see whether this is ACTH resistance or excess, and do an ACTH stimulation test. Sound simple? Ha!

The first endocrinology office I called, the one Dr. Longo recommended, specializes in diabetes. They wouldn't take Bertrand until JULY 7th. An appointment over two months from now for a child with dangerously high ACTH?! And better still, that was a consult ONLY--the actual ACTH test would be scheduled some time after that. A possible 4 months? I don't think so.

So, I called another local endocrinologist. This one specializes in disorders of pituitary, thyroid, growth & bone (no diabetes, PCOS, female hormone management, or Fibromyalgia). Sound right up our alley? I haven't heard back! But after this phone call, I was running late for B's appointment but I called my father to rant.

My father calmed me down. He told me he'd do what he could. He shot off some emails to see if some of his old colleagues at the Medical College of Georgia or some of our family friends in Augusta could see Bertrand while we are in Georgia next week. My mother also called her friends in Augusta to see what she could do. We'll see.

Bertrand and I managed to make his occupational and physical therapy evaluation at Shriners on time. We enjoyed meeting Chris (OT) and Cindy (PT) a great deal. Chris showed a great deal of interest in Bertrand's feeding abilities, while Cindy focused on what we could do equiptment wise. I was disappointed to hear Cindy emphasizing a stander for B. I feel like a gait trainer would give him mobility which would make him happier, but oh well. :( Kirsten sides with me.

B did not behave true to character during the evaluation--in part because it interfered with his nap and he is finally getting his full neurontin dose. He was more interested in... cuddling. "Snuggly" and "sweet" have never been used to describe Bertrand before. I mean, that's fantastic, but any one who has ever met him knows that's not Bertrand. He likes to move. He wants to be everywhere, but today he was a lump. I'd like him to find a middle ground.

When we got back home, I got an email from Dr. Samson-Fang (a doctor who honestly cares for Bertrand) recommending that we see Dr. Rob Lindsay. Dr. Lindsay is in private practice so his schedule could be more accomdating. And, what do you know? It was. I set an appointment for B with Dr. Lindsay on June 1st. If nothing else pans out, June 1st it is.

Some days are better than others. Let's just say that there're a heck of a lot days better than today.