OK, so tomorrow is the swallow study. WE NEED PRAYERS....we need good results, we need Tucker to fly through this...otherwise they are talking a Mic key button again. PLEASE ...man I don't want to go down that road again. I pray that it was a fluke and he flies through it, I pray that IF anything needs to be done it is to thicken liquids but eat regular. I thought we would go home with a tube down his nose until he got stronger if the results were that he was aspirating....Dr Lawson says that the tube down the nose will only mess up his swallow even more that he would suggest a belly tube placement...which means another surgery, another intibation, which means more time in Boston. Eating and no i.v meds are all we need to accomplish before going home....there are no more i.v meds now, as of today...and the eating was no issue until they thought he was aspirating....which they thought was happening because of the wet xray and the "junky" sound.. ALL of us know, Tucker always sounds junky, it is normal for him. Lawson said that they rely on the parents to know what is typical and what is not and he too thought maybe it was a singled out, tired boy being off the c-pap mask for so long, that caused the wet xray and not aspiration...again we will know tomorrow. Lots of good vibes this way tonight...PLEASE
I also asked about getting us home to Mercy...finishing our recovery there. He said that is something they do a lot of and it is definitely something he would bring up to our cardiologist..I got the impression, however, that is something that would take some arranging, not something that we could decide and do the next week....I may be wrong. It will be addressed again very soon. I want to be HOME...even if that means the hospital in KC!!
Tucker was mad at me when I first showed up in the room. He looked at me as if he didn't know me....I loved on him, kissed him lots and he finally broke it loose. He still loves me..THANK GOODNESS! He is resting now after fighting it for hours. We get to give him a tub bath tonight which will be nice. I would like to add that to his nightly regime so he knows it is about time to go down for the night. Just like being back home for those 2 weeks, I fell right back into it, as if I had never left.
1 week ago