It's been a long long few months.
Aiden is doing well. Atleast I think so. He still gets his little body stressed out with certain things and his monitors don't ever read perfect numbers all the time. He had an eye exam yesterday and he had another blood transfusion the day before, so last night, he was not a happy little camper. His oxygen and heart rate were alittle unstable but he's okay today.
He always desats ( his oxygen level goes down) when he eats. Used to be it would dip down to 50 or 60, last couple days high 70's / 80's and the last time I fed him he only dipped down when he needed to burp, sometimes he dips if he has to poop- from the straining/ bearing down. Dr. Pai, that was the doctor that took care of him last week when he was admitted Lexington Med Center, said he was going to desat anyway - so she decided to take his tube out and go all bottle. This week Dr. Marsh has been his doctor. Neither doctor id familiar with my son and both doctor are polar opposites of each other, in their attitude, style and demeanor. Well, so far this week Dr. Marsh tried putting Aiden back on oxygen just while he ate, then it was all the time, which didn't make a damn bit of difference, so they took him back off. Today he wanted to go back to tube feeding him to see if his desats would ebb. I told him I didn't want to put the tube back in, he said well let's just try during a feeding and see if it helps. He could tell I was upset and came back a second time and said the same thing and I could hardly look at him. Before I left I ask Aiden's nurse if she had gotten the doctor's orders for him and told her he wanted to "tube" him again, you know what she said---"why!? He's doing so much better than he was" So she went to find his orders and the doctor wrote out Aiden's orders * to be fed by tube every other feeding*. I was so upset ( she could tell ) that's not progression, that's regression and I told her I didn't want him to do it, so I asked her to have him call me. He didn't call back, so I called up there and he was busy right then and he would call me first chance he got. Well a little while went by so I took my ass back up to the hospital to see him, the nurse was feeding him at this time ( by bottle, she didn't want to tube him until I spoke with the doctor) and had no desat problems until Aiden had to burp so when she was done the nurse went to get him and she came back and stated "Dr. Marsh said well we'll just keep bottle feeding him". I just called to check on his last feeding and his nurse said he sailed through it, only dipping his oxygen into the low 80's.
I should have never transferred him, I was told the same doctors work at Lexington that work at Richland but it's just the same medical group, not he same actual doctors. Also the move itself was stressful on him, riding in the ambulance, a new bed, a new environment ( the two nurseries are like night and day), the new schedule, the new doctors all while trying to learn how to eat from a bottle and grow, plus he just ran out of breast milk and switched to formula which is not the same in regards to digestion. Atleast I caught on before he threw up anymore ( both of my other kids needed special formula) so they switched that too, even though it's stated in his transcript from the other hospital.
If I were still pregnant, I would still have 2 weeks until my due date, but instead I've watched this little guy grow outside of his natural environment for almost 3 months now, I know him better than any one single person on the face of planet.
I am Mama