Tuesday, March 28, 2006

No change overnight

Hello to all you early risers and East Coasters. Riley had a stable night with no change. His BP has been pretty constant but there has been no reduction in his Tenkoff drainage. He is still averaging ~100cc of output an hour from that drain in his lower torso, or over 1500ml a day. The plan earlier in the evening had been to start to bring him out of the coma a bit to raise his blood pressure, allowing the doctors to reduce his albumin intake, thereby (hopefully) reducing his Tenkoff. That plan was scrapped at about 11pm when his BPs went down again so the intensivists decided to keep him on the current albumin plan (he gets albumin at 75% of the previous hour's Tenkoff volume). The Tenkoff volumes are an indication that his lower circulation system is having a hard time adjusting to the new Fontan pressures. Fenestration is one way to deal with that until his body is able to handle it. We're not sure if that means fenestration is back on the table until we talk to the cardiologists today. We know that fenestration isn't a solution if his ventricle can't handle the Fontan, but it may be a possible course of action if it looks like his heart is recovering but his lower body circulation system needs relief.

Doctors weren't too concerned about the lower pressures during that period since they come up quickly when he is stimulated and when his liver is pressed on. Right now he is in a good range. His bed linens were changed and he got another bath. Dad has had night duty, Mom is at a friend's apartment nearby sleeping.

9 comments:

Anonymous said...

No news is good news, or at least better news.

I see what you're saying now about fenestration possibly being an option, now that his heart is functioning better. That would be great -- a new thing to hope and pray for!

I continue to be amazed at the depth and clarity of your updates. You concisely answered all my lingering questions about Tenkoff, fenestration, albumin, etc. Thanks again.

We're with you again today, in spirit, as the agonizing wait continues. Good luck and God bless you all.

Anonymous said...

I'm thinking about you and sending you all my love. Megan

Anonymous said...

We're up and thinking of you - tell Riley we're going to the aquarium today and we'll bring him back some pictures to look at when we come in later in the week. We're praying hard. Keep strong.
Jude et al

Anonymous said...

Thanks for all the updates, as I'm always checking and reading. Hang in there little guy.

-Jeff

Anonymous said...

My prayers continue to be with you. Again, let me know if I can help answer any questions. For Amanda, it was a long road, but she did very well after the Fenestration was closed up a year after her Fontan. They had talked about the Fontan takedown also with her. I am glad to hear that Riley is more stable today and that the 2 of you have gotten some rest. Love,
Linda

Anonymous said...

Thanks for the updates. I was plesantly surprised they weaned and decannulated yesterday. It does sound like the fenestrations will be a potential to allow his body to have improved systemic circulation, even if it is not 100% oxygenated. For those who may want more clarification here is a link. http://www.med.umich.edu/cvc/mchc/parhypfo.htm
Sending lot of love.
-Dave and Marisa

Stephen said...

As we continue to watch your difficult journey from afar, you continue to dominate our thoughts and prayers. Stay strong. . .

xoxoxo,
Stephen, Abby, Talia & Rylan

Anonymous said...

We are praying that things continue to remain favorable and that Riley will not have to have any more surgery. Does the fenestration proceedure require the surgeons to open his incision and go back in?
Yours,
Rhea

Anonymous said...

I check in on the blog every morning by 6am, several times a day and every evening before bed looking for an update.
thankyou so much for keeping us so updated on everything.