July 18, 2009

The Official Update

I know that I haven't been giving many details about what's been going on with Carter, so I wanted to give one now that he's home and napping comfortably in his play place. As I wrote before, Carter had the cath done on his heart, but had a hard time coming off of the ventilator. What had happened is that during the procedure, the anesthesiologist was reading Carter's CO2 reading off of the vent and it was at 57. A normal person's CO2 is typically high at 45, but Carter's has always run high so they felt that was a pretty good baseline. The problem was that the monitor was wrong because when they took the actual blood gas it came back as 113 (which is REALLY bad). They adjusted the vent accordingly and got it back down to the 50's. We think that is what contributed to Carter's breathing struggles after he got off the vent. Either way, a Pulmonologist was called in to see Carter. He pulled up his history and informed us that Carter has something called Hypoventilation which means that he's not breathing deep enough which is causing him to retain CO2. This is the opposite of Hyperventilation when you have to breathe into a bag to raise your CO2. The doc told us that we had three choices.... CPAP, BiPap, or a Trach (where they put a tube in his throat and hook it up to a vent to help him breathe correctly...this would mean that Carter wouldn't be able to cry or talk let alone function in many ways). Then he continued on to tell us that the CPAP and BiPap were probably not options because of the cleft, so he started pushing for the trach. After thinking about it for like two seconds, we decided that this was NOT a route we were willing to take. Even when Carter was on a ventilator, his CO2 was still high so we don't think that it would help him all that much. The Hypoventilation may be the ultimate demise of Carter, but he's not going to live his entire life hooked up to a machine. We informed the docs that we weren't willing to do this, and even though they pushed us a couple of more times, they finally got the clue that it just wasn't happening. Once the doc took into account the fact that the ventilator didn't seem to help it, he also backed off a little more. We told them that we wanted to bring our little boy home and let him heal from this whole traumatic week, and although they didn't like our plan last night, they seemed to embrace it this morning. The plan is to keep Carter at home under a watchful eye to be sure that he isn't under any respiratory distress. He will have a follow-up appt with his ENT very soon to see if they think that removing his Adenoids, or stitching his tongue down will help with his airway issues. Carter will have his lip/prosthetic palate surgery on August 26th (along with anything the ENT thinks he can do), and afterward he will have another sleep study to see how he is doing with his breathing. If he's still struggling, they will fit him for a CPAP/BiPap mask.

On another note, there was strange development over this week. Remember that Carter has facial paralysis on one side of his face. Well, soon after he started steroids for his lungs, he started to have a lot of movement on that side. We aren't sure what will come of it, but it was still exciting!


The Bender Family said...

Prayers for your whole family!

Phyllis said...

Glad you guys are advocating for your little man.

Phyllis said...

I wanted to email you but don't have your address-if you can email me at pafalcone@hotmail.com

thanks Phyllis