We had a long night last night. We thought Trey was running fever. He was acting very anxious, having tremors, extremely nauseated, but he had been sleeping until that point off and on all day.
Luckily, while we were taking his temp, his dr sent a text to check on him. I thought since he had been sleeping all day, he was starting to feel the effects of the chemo and experiencing the extreme tired feeling we were told he would feel. As I talked to the dr., we realized that the change occurred after the nurse had been out earlier in the day and had removed the basil rate of his pain pump.
When Jay returned from Walmart at 9:45 with a new thermometer, he had no fever. I was pushing his bolus every 15 minutes to get the dilaudid in his system as we realized he was experiencing withdrawal from the dilaudid.
We reached the nurse by 10:45 and she arrived around 11 p.m. By that time the dilaudid was back into his system and he had calmed down. The doctors ordered for the basil rate to be continued along with his bolus. In layman’s terms ;o) – They took him off his continuous feed of pain meds yesterday and he only had his pump to push. They wanted to do this to try to wean him off so that he could begin to take pain meds by mouth. When you have been taking the level he has for as long as he has, you can’t cut it off cold turkey and just leave him with the pump.
Needless to say, he has everything back that he had when he left St. Jude. He did not get to sleep until 3 a.m. and I did not sleep well either. He’s having some crazy dreams, but we are getting some good laughs.
Here again, just what would I have done if his dr would not have sent me a text just just at the right time to check on him? What a life saver! She kept me calm when I had no idea what was going on and Trey was punching the wall.
As most of you have already read, I got a text from him at 8 this morning asking if he could have Captain Crunch cereal for breakfast! That’s how we communicate. He is upstairs and we are downstairs, so we either call each other on our phones or text. I do have a baby monitor hooked up, but he doesn’t like it. He had his cereal and kept every bite down. He has eaten well today. Turkey sandwich and a small plate of a chicken casserole.
He has had a lot of visitors today. Needless to say he is WORN OUT! Dad and I changed his sheets, gave him his meds, and have tucked him in for the night.
One thing we did talk about this morning is his devotional he read when he woke up. He reads Jesus Calling every morning that I gave him a year or so ago. He tweeted part of the devotional. I’ll post it for you.
“Come to Me for understanding, since I know you far better than you know yourself. I comprehend you in all your complexity; no detail of your life is hidden from Me. I view you through eyes of grace, so don’t be afraid of My intimate awareness. Allow the light of My healing Presence to shine into the deepest recesses of your being–cleansing, healing, refreshing, and renewing you. Trust Me enough to accept the full forgiveness that I offer you continually. This great gift, which cost Me My Life, is yours for all eternity. Forgiveness is at the very core of My abiding presence. I will never leave you or forsake you.
When no one else seems to understand you, simply draw closer to Me. Rejoice in the One who understands you completely and loves you perfectly. As I fill you with My Love, you become a reservoir of love, overflowing into the lives of other people.” Ps. 139:1-4; 2 Cor. 1:21-22; Joshua 1:5
“No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.” Joshua 1:5
So tonight, he rests.
On another note, tomorrow we will be thinking about our friend and coach of the CHS lacrosse team, Steven Shipowitz who will be running the Germantown Half Marathon #1340 for Trey! 13 miles! Go Steve! Thanks so much!
*************************************************************
For some reason, God brought me back to the Caring Bridge page to read this to remind me what He said in Joshua. “…I will never leave you nor forsake you.” In the last four years, in grieving, pain, tears, joy, laughter, and sorrow, He has always been there. Have I always acknowledged Him? No.
God has taught me many things. Things I need to share to bring others to Christ. What has he taught you that you might need to share with someone? Has your day been long? Are you weary? As I told a friend yesterday, there is an elephant in my room that will not move his butt! I understand. For me, the days are still long.
Thank you for continuing to share your family with us. 4 years later Trey is very much an inspiration to us all…. God Bless