Now that I have had a nap suddenly things seem better. I thrive on order, on knowledge. I had done so much research and knew exactly what to expect when he was born- the oscillator, the nitric oxide, pulmonary hypertension- I knew the possibilities. So even though the first two days was rocky, I knew everything he was on he would come off and it did not faze me much. This silo- I knew about it, but never expected it today and I don’t know why it bothers me so much when he has had so many positives today. So I decided to do what makes me feel better- a list- a good and bad list.
-Silo- need not have happened. This crops more possibility of infection, delay in recovery, more long term problems due to the bowel being out.
– Pain- he has to be in pain longer, this week and next week after they close him up.
– Delay his recovery in the long run. More feeding issues due to the manipulation of his organs.
– Cannot start feeding soon, we have to wait for the surgery next week and maybe a week after that to even start feeding which could take weeks. Looking at a LONGGGG stay at the NICU.
-Another OR trip, another surgery- this is what bothers me the most.
– He DID NOT need a gortex patch to close his diaphragm. He has a primary repair which reduces the risk of re-herniation.
– He did not need any of his heart or blood pressure medication yet. He might, but so far so good.
– He is still on the conventional vent and rocking it.
– Silo- Had they tried to put pressure and close him up, it could have led to poor blood supply and other issues. Silo is available to give his organs some space and time to fix itself in the long run. This does not compromise any blood supply to his organs.
– For the amount of organs he had up there, I am glad this is all he needs to recover. His blood gases have been good.
– We have pee which was a huge deal. He did not need any support to help him pee.
– They will extubate him this week itself. It does not have to wait till his bowels are put back in. This was excellent news to me, because he can progress on that front and it does not have to be stalled. He was pretty close to extubatable setting even before the surgery, but they did not as he needed the surgery. I am hoping this time he can get closer and we can hear his lovely voice and hear him cry for the first time.
What Dr. Rodgers said when he came for rounds stuck with me. He said ” Your boy is a champ. He is doing everything we need him too. All we need you guys to do is talk with him everyday”.
My boy is a champ!!!!!!!