Today has been a very difficult day. I walked in this morning to a nurse bouncing Beckett while another gave him meds. I was told he had been pretty grouchy last night and for most of the morning. So, I took him and bounced him for a while. He settled down rather quickly, so then we rocked in the chair before I laid him down in his mamaroo. He slept for maybe half an hour before he started back up again. This time I couldn’t really calm him down, so the nurse gave him Ativan. He slept for about two hours and then was awake, for the rest of the evening! He was super mad throughout most of the evening, and was only happy right after he woke up from the nap. We tried everything, but he just wouldn’t settle. He would fall asleep for a few minutes in my arms but it was always short lived and then he was mad all over again. I tried for about three hours to get him to calm down enough to actually sleep for a while, but to no avail. At one point the nurse brought in the resident because he was so beside himself. She made a comment that he had just gotten his methadone so surely that would help. I took the opportunity to tell them we don’t think methadone does much anymore in the way of actually taking away his pain, but rather is more of a maintenance since he has been on it so long. With that being discussed they decided to give him a different type of pain medication because they agreed he is probably sore from his tube conversion yesterday, but they had thought the methadone would be helping with that. The new med did seem to help, so now they are able to give that when he needs it.
They didn’t really make any changes today. They wanted to wean his methadone again, but since he had a rough night last night they wanted to hold off. Thank heavens after the day we had. They increased him to his goal volume on his feeds and increased the calories tonight. He has been doing pretty well with it. He did throw up today, but it was just bile, and he handled it pretty well.
So, nothing major today. It was truly exhausting and I can hardly feel my body after having bounced, and swayed, and anything else I could think of to help Beckett. Guess I won’t need a gym for a while since I have him. But seriously, I am beat, and I pray Beckett has a better night tonight and that he can actually sleep. They did give him some medicine to help calm him down right before I left, so I was able to at least leave on the note of him smiling and playing. Not sure how long it lasted, but hopefully it was just the thing to get him over this hump. Please pray for rest for him tonight as I am sure today was stressful on his body. Tomorrow will be better!
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
Praying fervently for Beckett and your family always…
Poor fellow. 😦 Praying for a sleep filled night and a tomorrow filled with smiles.
Praying and praying.