April 3, 2013

UPDATE (4/3/13)
Just another day. That is what today felt like. It seemed like we were just hanging out, in a hospital room, like normal. Beckett has been so good today. He has slept almost all day, most likely because they increased his methadone in order to wean his Fentanyl. We definitely do not want a repeat of the last two attempts at weaning. So far he has tolerated the changes well.
Beckett truly hates having an ET tube in his mouth. They decided to leave it in one more day to allow him a day to rest without anything really happening. His body definitely knows it is not supposed to be there. He has been producing a large amount of saliva and does a good job at trying to cough it up. However, since there is a tube blocking the way, it gets stuck and he has a hard time breathing. I also think it scares him. He begins to cry, then drops his heart rate and oxygen. While this is not ideal, they simply suction his tube and he recovers on his own, which is great. So, while I want him to be truly ready before they pull the tube, which will most likely be tomorrow, I don’t want him to have that problem any longer.
They started his feedings up again today and he has been doing well with that. They leave his G-tube “up to vent” so that he is able to burp through it. Twice today Beckett burped and shot milk out onto the wall next to his crib. It was both gross and hilarious. We let his nurse clean that up, which she appreciated. HaHa.
Beckett doesn’t typically get bathed while on the vent. But, tonight I was able to clean him thoroughly. Boy did he need it. When he gets worked up he sweats a lot and he just did not smell good, and I’m sure he doesn’t like me telling him how stinky he is. He even had some heat rash on the side of his head he was so sweaty. So he got a goodnight bath. He has always loved having his head rubbed, probably because for so long that was all we could do to comfort him. When I began washing his head, he instantly started falling asleep. It was just the sweetest thing. He would rub his eye and fight his eyelids closing. Once he was dressed and back in bed we tucked him in, and he calmly and quietly fell right to sleep. I hate leaving him at night, but I love knowing he is so peaceful.
So today was what they like to call status quo. That is what we like, and what we pray for. We pray for progress, but in that forward moving we pray for no surprises. I needed a day like today, a day just to be with my son. Praise the Lord for status quo.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

2 thoughts on “April 3, 2013

  1. Child of God says:

    Yes!! Thank You Father!! Praying for more good days and a healthy Beckett!

  2. So loved reading this post tonight and that you had as ‘normal’ a day with your son as you did just hanging out, dealing with spit up, bathing him, and comforting him as only his mother can with your motherly touch that he has grown to love and trust. “Thank you God for this wonderful gift of a status quo day that you have given Leah and her son. Lord we are continuing to petition on their behalf for a miracle in Beckett’s life. And may you continue to give Leah and Jonny the the courage, strength, and assurance to face each day.” Go Beckett…Go Rupp’s!

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