Hunter was seen by Wings today and what they told us was really not what we wanted to hear, but we both knew that this was coming... Let me just say first we so hope that they are wrong and he will prove them wrong! But no matter what this is God's will not ours and he is in charge. I talked to the RN on my way home and then once I got home with Hunter his doctor called from Wings also. The day started with Hunter laboring to breath again and needing some O2, I called the RN and she was on her way to his Grandma's house to check him out. When she arrived he was breathing much better on the O2, then she and one of the other RN's thought that we might want to try some Pepcid for (possible reflux issue) they are not sure but this will be another trial and error situation if it does not help we will stop using it. So in talking with both of them on separate occasions, they are thinking that this is his underlying diagnoses progressively getting worse and this is probably where he will stay till it progresses even more until...(something I don't want to think about or say!) The Wings doctor asked me if we were comfortable managing him at home or coming into the hospital, I told her we would rather be at home with him where he is comfortable and so are we and we also have the O2, monitor to check the heart rate and his O2 & the suctioning machine to keep him even more comfortable at home. She also said that if this does progress more we may want to consider some things for him to keep him comfortable.
I never would have thought in a million years before I had him that I would be having to decide what to do for my 16 month old to keep him comfortable before....I thought that I would be teaching him how to say words, teaching him to walk and get dirty like little boys do, riding in the tractor with Papa at the farm. But that is not what God had planned for him and that is okay he is perfect in every way and he has taught us patients, love, to not be selfish, and that we can overcome whatever is thrown at us. We are also a lot closer to God since he has come along, it is not that we weren't believers it's just now we see his work and that we are also doing his work with Hunter.
We were meant to have this little angel that God blessed us with!!!
Again we are hoping that they are wrong and he will prove it and get through this soon and get back to his old self. But we still have to remember that this is not our plan and this is out of our hands and in Gods hands no matter what we love him and will cherish every moment we have with him, we could not imagine our lives without him even with all of his challenges he has, we still get those little grins every now and then from him that make us so happy to see...So gorgeous!
Please keep our little angel in your prayers.