So I just have to say that today has been the most AMAZING day ever..
Xander had his post-op visit up at PCMC this morning and it also is mine and Nicks 10 year anniversary! We arrived at PCMC at 10:30am and started the visit out with a chest x-ray. we then headed over to cardiology to check in. Once in the room they had us turn off his oxygen to test how he would do on holding his oxygen up. Unfortunately Xander can only keep his sats in the 78-80 area which really they would like him to be at least 80-85 if not 90 area, so we will be staying on .25 oxygen for a bit longer but hey we have SOOOOOO come accustom to it that really we don't even notice it anymore. His EKG came back wonderfully and his chest x-ray showed no fluid anywhere YAY!!!!! Of course there is always that chance that some could come at a later time but we know the signs to watch for and know what to do if we feel things are going down that route. Needless to say Xander passed his post-op visit with flying colors besides weight gain. We are still sitting at 10 pounds 3.7 oz he has not gained anything since he had left the hospital.
Next we went to have our swallow test. You know how you just get that feeling in your tummy that you know they are going to or are not going to pass? Well I had that feeling today but that he would pass this time around and Drum roll please..................... he PASSED!!!!! Yep that is right our Mr. X totally passed his swallow test YAY... Now instead of having an NJ tube he now has a NG tube ( instead of going directly into the intestines it is now going in to his stomach FINALLY) I seriously can not think of a better anniversary present than that!!!
So for the next 24 hours we will be keeping his feeds at 27 calories at 27 ml and hour if after the 24 hours he has been able to tolerate it we will be moving to 27 calories at 54ml every 2 hours. Once at that dose for 48 hours we will then move to 27 calories at 90ml every 3 hours and watch him for another 24 hours to make sure all is good. If we can get to this amount and have no problems we are then able to start giving him food yes FOOD ( I am so excited about this ) by mouth.. HECK YEA!!!!
I cant even begin to tell you how ecstatic we are right now about this visit and everything, we definitely have such a fighter on our hands and we have been so blessed this far on everything he has gone through and will continue to have to go through but it just shows that no matter what he will fight to no end!!!
Now that surgery is over and we are all good life will possibly get back to normal in the normal way of what we have become accustom to YAY!!! Xander will be having his next visit on September 19th. Early learning will now be coming in each month possible each week to start working with Xander on his speech, occupational, and physical therapy so that we can get him where he should be at for his age.
Having a special need child is extremely rewarding and is very challenging at times but is these rewarding milestones that makes all the difference in the world and helps you know that what you are doing is working for your child. But really there is so much more to come and we all say BRING IT!!!
