How do I put this. Julie and I are discouraged, frustrated, tired, weary, faint of heart.
"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)"
They will be sending us home Monday in his current condition with the risks outweighing the next steps of surgery at this time. His feedings are not quite under control and we feel that we are in a worse position to return home than we were at the last discharge. His feedings are not straight breast milk and we are having to give it to him over a pump over an hour rather than some by mouth and the balance gravity fed in 20 min. Tyler at least is not puking or struggling to breath due to the fluid around his lungs. We just hope that the fluid does not come back. Time will tell.
Tyler had his drain tube removed today and he already seems to be feeling more comfortable. He is able to take a nap and not yell for some one to hold him constantly. (Could be the morphine and Tylenol T3) We look forward to returning home but still scared to have to return to Riley a possible third time.
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