June 12, 2010

Hospitalization update

Bertrand got his morning off to a bang with a large bowel movement. Unfortunately, the circumference of his distended belly grew to 71cm. Since his other extremities are now equally swollen, our concern is that he has generalized edema.

I asked for a physician's opinion on the possibility of heart failure. Heart failure is one cause of generalized edema, and heart failure is a side effect of ACTH. I felt that with his elevated heart rate, this had to be ruled out. After an examination, the cardiologist here thought his swelling was related to his pulmonary infection rather than heart failure. A veteran medical tech here also concurred that his symptoms are more aligned with pneumonia than a heart condition.

We pulled about 650 mL of fluid and gas out of his nose through a gastric suction tube. The upside of this is that Bertrand regained enough motor control of his right hand to scratch at the tube. (He hasn't displayed that much motor control since 8 months old!)

As the day went on, Bertrand seemed to regain more strength, and he can now stay just inside the safe blood-oxygen range without external oxygen support! (Unfortunately, he's doing this by breathing and pumping blood twice as fast.) His respiration is still "chunky" but it's clearly less so than yesterday.

But, he won't be going home until we track down the source of the fluid retention. Even though the staff told me they'd seen children twice as swollen as Bertrand, I couldn't help but wince when I touched his taught skin. It just looks painful.

Ironically, if I could choose to have the Bertrand I have today or the Bertrand I had two weeks ago, I might still choose the one I have today. Surface maladies aside, Bertrand has been more emotionally and socially connected these past few days than ever before. When I smile and laugh, he smiles and laughs. When I rub his head for comfort, it soothes him. When I walk across the room, he tracks me.

We're hoping that once we get Bertrand all fixed, that we'll get to keep all of these sudden and unexpected developmental advances.


  1. Thanks for the update! Keeping you all in our thoughts.

  2. Bertrand has a different look in his eyes in that picture than I have ever seen. Different for the better. We're thinking of you all and hope B can go home soon.

  3. Holy CoW!!! I haven't been able to check your blog lately cuz we were on vacation. I had no idea little bertrand was in the hospital! :( I hope he...and you guys are doing better and that you can figure everything out. we love you guys! xoxo

  4. I hope Bertrand gets to come home soon! Dave, Ari and I will be sending get well soon vibes to Utah.

  5. touch wood! may all the developmental advances hang on for good.

  6. Oh wow - I can't believe what's been going on. (We've been out of town with virtually no computer access). I'm really glad that Bertrand is connecting with you more, though I must admit that seeing the photos was rather alarming at first! It just looks like it would feel so uncomfortable. We'll be thinking about Bertrand and hoping he comes out with swelling gone but new social skills intact :).

  7. You guys are really the most amazing parents. I pray that the medical team will have as much of a desire to help Bertrand as you do. Thanks for posting how he is doing. He in my thoughts.