Wednesday, January 12, 2011

Happy Meal and Switcharoo

Today we got to spend a little time with Carrie again. My parents came and hung out with Brigham while we took Carrie out for lunch at McDonalds right down the street. They didn't have a playplace, so once we were done eating, there wasn't really much left to do but go back, but we enjoyed the half hour we got to be together. It's always hard to say goodbye to her... We're looking forward to the day when all four of us get to be home together.

A little update on Brigham. First of all, they did another triple-check head ultrasound today and confirmed that he does NOT have a brain bleed! This is such good news. :)

He has, however, started to require more blood products to be transfused over the last day and a half. This is normal for kids who are on ECMO. Think of it like this. Normally, his body would only have to produce enough clotting factors etc. for his own tiny little body. On ECMO, he has to try to keep up production for at least 3 times the normal amount of blood...

They've been having to give platelets and some other clotting factor products lately. This is increasing the fluid volume that's circulating and helping keep his blood pressure a little higher (which is good). The not so good part is increased overall fluid volume means increased swelling. They've restarted occasional doses of Lasix, which should help him "pee off" some of the extra fluid.

We've lovingly toyed with the new nickname "puff baby", you know, like puff daddy, but he's a baby... Anyways...


Onto the "switcharoo" part of the post. Some of the labwork they've done recently has shown that his blood was too thin (for lack of better words). A couple things that could mean are that Brigham has an infection, or the machine "has a bleeding problem" (again, for lack of better words). They started him on antibiotics just in case, while they're waiting for the cultures to come back. In the mean-time, this afternoon, they switched out his ECMO machine for a new one. They said sometimes after a few days, the machine just needs to be reset up.

For now we're just waiting to see if his coagulation numbers get better. If they do, he won't need as many blood product transfusions and hopefully the swelling will go down.

We also got a little more insight into what they're waiting for and looking for to decide surgery date/time. As they've been doing heart and chest ultrasounds, they're monitoring the blood pressure in his lungs. Once that goes down (as his lungs are able to rest while he's on ECMO), they'll be able to do the surgery. So now it's the waiting game :)

6 comments:

Heather F said...

Hopefully he doesn't have an infection and that its just something with the machine!
I like the nickname. That'll be a good memory of this time for you guys once he is older.
I hope that things keep looking up so he can have the surgery sooner then later. Will he still have to be on all the machines (like the ECMO) after he has his surgery?
Thanks for all these updates. I continue to keep you guys and Brigham in my prayers!

Coleen said...

Good Morning Beautiful Brigham. Everyone comments on your hair.
Glad you guys were able to spend some time with Carrie. I'm reminded each day how grateful I am for the medical staff who care for him and their dedicated work each and every day. We are so blessed to have such wonderful care and every available treatment for him.
Love you all

Coleen said...

The name Brigham is of old English origin and my family (Clawson) are of English origin. Pretty cool!

Meagan said...

How can a McDonald's not have a playplace?? Seriously...

Karissa said...

I like the name puff baby too =) He's such a champ- we've been praying for you guys!

Coleen said...

Sorry you aren't feeling so great Rebecca, hope you get to feeling better and get some rest too.
Love you!