May 1, 2013

UPDATE (5/1/13)
May. My, that is hard to believe. We never would have thought we would still be in the hospital, but that is the reality we find ourselves in, and honestly, I don’t see it coming to an end any time soon. Who knows, maybe God will surprise us. Despite being ready to have Beckett out of the hospital, our attitudes have not changed in that we only want him to come home when we know he is ready. Some days just seem to wear on you more than others. Today has been one of those days. While overall it has not been too bad of a day, the few little things have added up, and I am simply worn out.
This morning Beckett threw up part of his 5am feeding and unfortunately, it had at least part of his methadone in it. From what I was told, he was pretty angry after that, and understandably so. He did fall asleep for a few hours, most likely from exhaustion, and was able to make it to his 11am methadone dose without any additional help. His oxygen support did have to go up though during his “fit”. The nurse had been slowly weaning it down before I got there, but once I arrived it stayed in the same place for most of the day. His saturation monitor kept dinging most of the day, and this evening his support had to get bumped up again. Each time he would wake up throughout the day he would be crying and angry. This evening I gave Beckett his bath and rocked him to sleep immediately after. He was sleeping so peacefully and his vitals looked great. I gently tried to move him to the crib, and of course he woke up. He does not transition well when he is withdrawing. Important side note, they weaned his Fentanyl again this morning. It took me a long time to get him to calm back down after waking him, and he was so restless in my arms. Eventually his nurse came in and said she would hold him so I could go home and get some sleep. Before I left his oxygen had to be bumped up again. So as I left he was sitting at 50%. Just last night he was on 32%. I have explained my concerns to multiple people about weaning the Fentanyl without increasing his methadone, but they are telling me the wean is appropriate. It is just hard to accept when I have seen how bad his withdrawals can be, even to the point of ending up on a ventilator. So I do my best to keep voicing my concerns while also trusting their expertise. We keep praying for this to be as smooth as possible, and ultimately that Beckett tolerates the weans and can quickly be off the Fentanyl all together.
So I spent most of the day rocking and consoling, which sounds like a nice gig, except for the fact that it is so much harder to enjoy holding him when I am concerned about him not settling down and his heart and therefore oxygen being under stress. I should also say he did have a few times of play, where he was happy and smiling. At one point he even laid in his crib for about 40 minutes just playing with his hands and staring at his mobile (he has a new mobile from his nurses that visited Sunday, and he loves it!).
In the grand scheme of things, today was not a bad day. In fact, the nurse thought he did well with the wean. It just seems harder when I know Beckett is not himself. So we pray tomorrow is a better day and that Beckett is able to adjust to the changes. We all want him off his pain meds, but it is truly a long, slow and difficult process.
We did have a special visitor today. My grandma was able to come today with my mom. She has not been able to see Beckett since the day after his initial surgery. It was so good for me to see her, but also for her to see Beckett. She was able to spend time holding him, and I was so happy for that. I am truly grateful for each step of this journey, and all the blessings along the way. Each day is a gift. Even days like today that seem so long and hard. He is priceless, and I wouldn’t have this any other way. May. Yes it’s May, and it is clear God still has things for Jonny and I, our families, and countless other people to learn, so we keep fighting on. And we take it one day at a time.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

2 thoughts on “May 1, 2013

  1. Child of God says:

    This withdrawal seems to be so tough on Beckett. 😦 Praying that it will be easier for him tomorrow and he can come down off of these meds without any undue stress on his heart.


  2. May God grant our pleas on Beckett’s behalf for a healing miracle and for him as he must go through this weaning, withdrawal process. May you and Jonny find a renewed peace daily as you go through this difficult journey one day at a time. May God give the doctors and nurses wisdom beyond their education, training and experience as they care for your precious son and make life changing decisions that affect you all. May God continue to be with you in every detail of your life from the smallest mundane thing to the biggest difficulty you may have to face each day. May He protect your marriage as you trust each other, love and support each other. May you continue to trust in God and His sovereignty as you have placed Beckett in the living hands of the only person who loves him more than you…or Heavenly Father . And May you all feel every moment of every day the pleading prayers lifted up on your behalf sustaining you.

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