On Wednesday, we came up with a plan to get us through the week. The goal was to wean Lori off of the Dilauded pain meds which are fed via IV, and move to oral pain pills. This was necessary if we ever intended to be discharged from the hospital. The goal was to finish the transition to the oral pills (a mix of Oxycontin and Morphine to supplement) by Friday morning so we could be discharged in time to drive her to Indy for her neurosurgeon appointment at 1230. If she misses that appointment, the next available date is 22 May, and that is just the consult. The date of the actual procedure is yet to be determined, but it is tentatively set for next Wednesday. She has been off of all types of treatment for nearly 40 days now, so any extra delay is hard to accept. We have been aggressively working this plan to get her to Indy by Friday afternoon.
It’s looking good. It was a rough first 24 hours when she started the transition to Oxy and Morphine. Wednesday was a decent day because she was still supplementing with the Dilauded as needed, but Wed night was rough one. She was up quite a bit, and the pain was level 7 at times. However, Thursday was much better. She didn’t have to supplement at all with the Dilauded, and she only reported pain at level 1 or 2.
My mom stayed with Lori all day today while I drove down to Dayton to take care of some Air Force business. I did talk to her Dr over the phone however, and we came up with a good plan with a timeline to have her discharged in the morning. I expect that we will make it to the Indy appointment and hopefully everything checks out for this pre-op meeting. Immediately following the brain radiation next week, I suspect she’ll start Cisplatin chemo as well.
Assuming we can keep the pain controlled ourselves after we leave the hospital, we plan to stay at my parent’s house Friday night. Saturday afternoon, we hope to return with the kids to Dayton. Our house is in great shape now thanks to an incredible effort by our neighbors and the church to unpack our boxes and make up each room! They also painted more walls, cleaned the bathrooms, gave direction to my contractor who is remodeling the master bath, and much more!
Lori and my mom had some great prayer time with relatives and friends on the phone today. Lori is just so focused on praying and having others pray for one-another. We really appreciate the responses from everyone who is lifting her up this way. She is staying very positive, but we have had times of frustration this week dealing with the break-through pain. We both cry now and then as she struggles along, but we have had some very good times as well. Most couples this young aren’t pushed to share the intimate things we’ve shared this week, and we’re glad to have had that time. The family time with her parents and her brother have been special as well, and we have more family visits planned for next week.
I haven’t been able to answer everyone’s texts and emails unfortunately, but I have read all of them, and I appreciate the offers to help. Probably eight different families have offered to either take Claire for the week for school or to help with the kids in general. Although I haven’t responded to everyone, I’m writing down your names and making a list for the future!! When we get back to Dayton, I’ll have to see how Lori is doing first and then figure out whether or not to allow visitors. She would never say “no” to anyone who wanted to see her, but I just see that it takes a lot of effort for her to fight through drowsiness to carry the conversations, and I think it wears her out a little bit. Her focus is on visiting with family right now, but I’m sure there will be time later for all of her friends who also love her and want to support her by visiting. Her brother is here this weekend, and we definitely don’t want any visitors except her sister on Saturday night if we return to Dayton. After Sunday, I’m sure she’ll be eager to see everyone else!