Monday afternoon 2

I have been telling Mommy that I think our blog ratings are plummeting because we have lost our edge... the audience is growing complacent and we need something to spice it up. I have BEGGED her to let me put a "during" picture up, convinced that it would double our hits (and that is just from Greg Scala), but she has refused to relent... no matter how artistically I have composed the shot. (For those unfamiliar with my warped sense of humour, please be assured that this is entirely in jest and we have no idea how many hits our blog gets). Alas, our young hero has supplied us with all the excitement that we need. WE CAN SEE HIS FACE!!!!
He has had his oxygen and his feeding tube removed and his head is completely free. It is so AWESOME to see him. So far he is doing well without any oxygen to help him. He is still having the odd spell where his saturation level dips (particularly when he is eating), but he is bringing it back up fairly well when that happens.
We are pretending not to be completely anxious, but in truth we are very on edge right now. His drug level this morning was 36. If you will check your scorecard, you will see that that is the level it was when he had his seizures on Wednesday night. So we are watching him like a hawk. He doesn't get his next dose until about 6:00 this evening. For reasons I don't fully understand, the doctors do not seem concerned about this, so our trust in them is being stretched right now. But they have not let us down yet.
He continues to breastfeed like a champ and, as of around midnight last night, is not getting any supplement of milk through a feeding tube. What he eats is what he gets... like a normal kid. Man, does that feel good to type. He has also started to cry more. When the nurse drew blood from his heel last night, he was crying like a (all together now) normal baby. I felt a bit guilty being so happy to hear my son wailing.
One little hiccup (by the way, he is having fewer of those than he was early in the week) is that we have been kicked out of our sleeping room at the hospital. We have known that this was a possibility every single night, so we are not complaining in any way. Apparently there is a very sick kid whose parents need the room now. We have been so blessed to be able to stay there for the last week. But this will mean that we will have to leave the hospital and go home and sleep and come back for the day. The biggest drawback of this is that Finley will have to have at least 2 feedings a day from a bottle. But we can deal with that. He has shown that he can handle the bottle fine. You will see in the pictures that Fin has also changed his digs. They needed his warming table because they are over capacity right now... a reminder that the need for miracles is continuous.
It will not be nearly as hard to go home tonight as it would have been two or three nights ago because...(drumroll)...it is very likely that Finley will be coming home on Thursday or Friday this week. They have started to talk in concrete terms about his discharge. HALLELUJAH!! He still has to prove that he can eat and breathe (oh, and remain seizure-free) consistently for the next couple of days. But we are hopeful that he will do that. It is important to remind ourselves that they still have no sweet clue what is causing his seizures... and that is very bad. But it appears that the drug will keep them at bay for at least a while while the investigations continue. We are starting to think that we may never know what caused them. If that is the case, there will likely be lengthy battles in the future as we try to figure out what drugs and therapy, if any, he will need for the long term. But we will blow those bridges up when we get to them.
For now, we celebrate seeing the angelic face of this little miracle.
With grateful hearts,
Robyn and Kevin