We had a good day, Tucker got up and was in a good mood from having the mask off all night. His xray was a little wet, but the doctors weren't to worried about it. I did notice that every time he drank or ate something by mouth, he would get really junky. So, around 2:30 or 3 in the afternoon, I returned from lunch and observed him sitting really still and a little pale. When I left he was asleep and oxygen saturation's in the 97 to 100 range. When I returned, his oxygen saturation's were hovering around 88 sometimes down to 83. I also noticed he was very agitated. Dr. Marx came by and he also commented on how agitated he looked.
After several doctors came by and did their routine stethoscope check, the decision was made to put him back on the mask for a little while. I must admit, this really busted my bubble. What I didn't realize was the plan was to put him back on anyway, just not this early. It was clear that he was just not ready to solo without the mask. Once the mask was back on, his saturation's returned to the high 90's and his color returned. The plan is to do the same as before, sprints off while he is awake and on while he is asleep. I was reassured several times by the staff that this was expected and we will still probably go to the floor early next week, so don't look at it as we are going backwards. It was hard for me as a parent to accept that, but like Karen and I have always said, we are on "Tucker Time"!!
After the mask was put back on, the decision was made to replace the NJ feeding tube so we can feed him without the worry of him aspirating liquid into his lungs causing them to get wet. As we know from the operations as a baby, until he gets stronger, sometime he swallows wrong and some of the liquid can go into his lungs. The plan is to have a swallow study done, of course it won't be until Monday, and Tucker can't have anything by mouth until after it is done.
After the mask was put back on, I felt as if my heart was broken. We were going so good and things were looking up, doctors talking about transferring us to the floor and now this!! I felt like the wind was knocked out of me. At about 8:30 pm, guess what, we took the mask off, put him into his stroller and strolled around the ICU again with just the oxygen in his nose. Saturation's were 100 percent!! That is just what I needed to put the wind back into my sails. That little boy just needed a little rest, he needed a little "Tucker Time"!! He amazes me each and every day. I used to wonder, when we found out he was Downs and had heart problems, what I did so bad for God to punish me with a child like Tucker, now I wonder what I have done for God to bless me with a child like him. If you have ever watched the movie "Radio", where Cuba Gooding JR., plays the handicapped kid that the football coach helps out, the coach has a great line, "If we treated each other half the time like Radio does all the time!!" That's the truth, what a wonderful world this would be. Tucker doesn't know a stranger, he shows love no matter who you are.
The High School Decision
5 weeks ago