Rough weekend...

Hi Everybody,

It's been a rough weekend for Mia. On Friday afternoon, Mercedes and I left to spend time with Robert in Sacramento for the weekend. Around 9:00pm Friday night, I got a call from Mia's nurse telling me what had happened around 7:30pm. Mia's co2 was fluctuating from 69-80 (should be less than 50). She also had another seizure that lasted 2 minutes. It killed me that my baby was going through so much and I was 2 1/2 hours away from her!

So far, she only had that one confirmed seizure, but her co2 has been very challenging to stabilize. She normally has Albuterol treatments every 8 hours, then they changed it to every 6. Now it's every 4 hours. They've maxed out her vent settings (they can't really go any higher on the settings). She is requiring 1 liter of oxygen (that's 25%). Room air is 21%.

Dr. Silva, the RT's, the nurse practitioner, and the nurses, aren't exactly sure what's going on. They took a chest xray this morning and that came back fine. They did take some blood to test for something - not sure what, and last I heard, they hadn't gotten the results yet.

It doesn't make sense that it's anything respiratory, so they're thinking maybe it neurological or seizure related. They think she may be having a lot of really small seizures, so they started another anti-seizure medicine. Mia does seem to have a slight cold, so she is coughing a lot and they're suctioning a LOT of secretions out from her trach. She hasn't had a fever at all.

One RT thinks Mia MAY be allergic to the Albuterol. I think she was going to mention that to the doctor, so we'll see what happens.

Please be praying for Mia and the rest of our family. Mercedes and I came back down to San Jose this afternoon, so I was able to be with Mia for about 3 hours. She was a little restless what I first got there, but I just hugged her and kissed her and layed my head next to hers in her bed and she went right to sleep.

On a cute note, check out her top teeth in the picture from tonight!! Too cute, right? =)

Keep praying!

Rachael