A Good Weekend

It has been a few days since I have had a chance to give an update on Timmie. This weekend we were just really busy because she was doing so well and had so many visitors. She has been getting out of bed for physical therapy and to use the restroom, and on Sunday night she even took a shower! I would attach some post-shower pictures if I could figure out how to do it on this I-pad. The weekend was great. Cassie spent the night with Tim, so Bo, Julian, and I were able to spend some long overdue time together. We went to the City Creek Mall, and it is amazing what fresh air can do for a person. I enjoyed it so much, but I hurt a little inside because I know how much Timmie needs to get out of room 4401 to get some fresh air. She cried when the water hit her from the shower, and I am sure she will do the same when she first steps foot outside. They had been talking a lot about discharging her, at least locally, by the end of the week because her leg and infection levels have been so good. (Maradia- I heard you have been following her CRPs closely, so I won't leave them out!) They have been bouncing around between 1.7 and 2.7, which they are telling me is as good as it will probably get for her until she gets some white blood cells...neutrophils to be exact. A normal CRP is under .8. So, local discharge was an option, but we had a little setback yesterday. Timmie's pain level shot up, not just in her leg but all over her body. She was having pain in her back, neck, knee, ankle, chest, and she was having trouble breathing. She described her pain as a 5, which for her is really high; since her nerve pain that she ranked a 10, the highest she will rank anything is a 5. I guess it is all relative. No one could really figure out what was going on with her. Some think it may be that we are tapering her pain meds, but then we got her cyclosporine levels back. Cyclosporine is the med she continues to take for her immuno-suppression. The target level of cyclosporine in her body should be between 100-200. They test the level every other day, and she has been too low, so they have been slowly increasing the dose...too much cyclosporine can be toxic, and cause all sorts of side effects. Her level yesterday jumped from 90 to 780. They are retesting as we speak this morning because some are doubting the accuracy of a huge jump like that. However, if it was accurate, it could indeed explain why she felt so awful. Her kidney doc indicated that if that were accurate he would be surprised that she wasn't having seizures. I guess we will see what happens with that number in a few hours. Sorry Maradia...another number for you to follow. I pray Timmie has a better day today. The setback was pretty discouraging for her after progressing so much the past few days. Julian headed back to Pocatello with Cassie on Sunday. We had so much fun at the mall and at the Cheesecake Factory...how could anyone not have fun when cheesecake is involved? He was sweet at the restaurant, and once I complimented him on his good manners he created situations for himself to say please and thank-you and earn my approval. It breaks my heart that I haven't been there for him the past few weeks, but I am so blessed with family members who love him and make sure he is taken care of. Because of Cassie's willingness to sleep at the hospital, I was able to share a bed with Julian at the hotel. I thought of bedtime at home; the routine involves a nightly negotiation process between Julian and I to determine how many minutes I will lie by him in his bed before he falls asleep. He is a fairly savvy negotiator, so I usually end up lying with him for five or ten minutes despite the fact that I am sure I have read in many parent manuals that by six years of age it is important for kids to feel comfortable falling asleep in their own beds by themselves. As I laid in bed with him on Saturday, all of that parenting mumbo jumbo seemed pretty ridiculous as I cuddled with him and he gently placed his hand on my cheek and simply whispered, "Mama." Ritual bedtime negotiations at my house will never be the same.