Overnight was kinda rough again. Before the surgery I talked with other people about what they felt helped them be the most comfortable. These things were mentioned: Wedge pillow, Zero Gravity Chair, lift recliner, recliner, lots of pillows, and hospital bed. Before we left I purchased a wedge pillow and a Zero Gravity Camping chair. I figured they would be portable and easy to take to the hotel after the surgery. We tried both of these last night and neither were comfortable. The best option was 4 pillows stacked in a wedge position. We didn't figure this out until 5 this morning, so from 3 to 4, it was bad. Not 9 pain level bad, but bad. After we figured this out, he slept until 9 that morning. And has been comfortable ever since. Thank you, Jesus. This really was an answer to prayer! I was close to losing it last night when I didn't know how to make him comfortable. I knew if I lost it, he would too and anxiety and fear makes the pain worse. I spent that hour in intense silent prayer, and He answered.
Now, He seems the most comfortable when he is lying on the pillows. He says when he is up, sitting, standing or walking his incisions hurt. But also, he is using his abs for everything. Try doing everything without your arms. Your abs are constantly engaged. I think some of the pain is just him building muscle because of this.
He really has had a good day today. Pain is manageable. We started stretching out his oxycodone and it hasn't seemed to phase him.
We were able to get into the Ronald McDonald House for 4 nights. Two of those nights were spent while he was in the hospital which really worked well. The House is right next door. In fact, it was a shorter walk to the House from Thomas's room than it was to the cafeteria. (Cincinnati Children's is HUGE.) The house had lunch and dinner for us every day! I cannot tell you how big of a help this was. If I didn't feel like I could leave Thomas, Tim could get it to go and bring it to the room for me. The meals are provided by volunteers -- organizations, business, and church groups. They volunteer their time, and work with the House's chef to make the food. Then they serve the food. Words cannot express what a help this is. There are people here with children in much worse conditions than mine. Cancer, heart issues, who knows, They will be here much longer than I am. I can't imagine the stress and strain these people are living in. I know how much I appreciate the few days we have had here. How much more of a service they are doing for those long term patients. Tomorrow, we move to a hotel for 2 more nights. So we will have another room and bed to find a new comfortable. I am hoping the same strategies work. But who knows.
We took a test drive today, and he says that is the worst. You don't realize how much core strength you use in the car. We have a pain management appointment on Thursday. I am going to ask them about any strategies for the car. We have a 6 hour drive home. We should be able to take it slowly, but still. I don't want a set back to the pain. Tomorrow when we drive to the new hotel, I am going to try reclining his seat some.
I can't tell you how much I have appreciated your prayers and your concern. Really all of us have! This has been a long journey, and we have much longer to go. The recovery is 12 weeks long, but the bars will need to stay in for 3-5 years. It isn't easy.
Here are our specific prayer requests -
That his pain continues to be manageable.
That weaning off the oxycodone goes well.
That we can find the same comfort level at the new hotel.
That we find strategies to help with the car rides.
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