Here are some highlights and low lights from the first week at home.
Monday. We were discharged late in the day on Monday and came home to boxes of medical supplies, some assembly required. Assembly was easy enough, and it didn't take long to get the first home nutrition infusion going. After almost a week in the hospital it was good to prepare a meal at home and sleep in our own bed, even if the sleeping wasn't as good as usual.
Tuesday. We met with a visiting nurse in the morning. Everything seemed to be proceeding as it should, and we discussed plans for increasing the rate of feeding (to reduce the number of hours connected to the IV pole).
Penny used her "pole free time" in the evening to make a batch of rice pilaf, and Andrew and Hannah joined us for dinner.
The day ended with a couple surprises. In the evening we discovered that the supplies that had been shipped didn't match what we had taken home from the hospital. The supplies from the hospital allowed us to supply both nutrition and hydration "flushes". The shipped supplies were nutrition only. That led to a several calls on Wednesday and Thursday before a new order was placed with the supplies we were expecting.)
The second surprise came when one of Penny's crowns popped off just before bed.
Wednesday. Phone calls and a trip to the dentist aside, Wednesday was a pretty good day. Some of the "pole free time" was spent in the dentist's office, but after that Penny and Jason made four pie crusts, and Jason turned one of them into a banana cream pie.
Thursday. The best day of the week. My sister was in from out of town to visit and Penny was feeling quite good. We worked together to make lunch and enjoyed some time with my sister and parents.
Friday. Friday morning something had changed. Penny had lost a couple pounds from the previous day, was winded when moving from one room to another, and was experience intermittent muscle cramping. She managed to get through her first physical therapy appointment, but mostly rested the remainder of the day.
Saturday. Saturday was like Friday, but more extreme. Down another couple pounds, more cramping, more fatigue. We had out of town friends visiting for the weekend, so we delayed going to the ER until evening. As we suspected, she was quite dehydrated, but that seems to have been the only issue. After receiving three liters of fluids in five hours, and then her blood work re-checked, we were given the option of being admitted to continue with fluids for another day or two or heading home. In the end, we opted for returning home. The blood work had improved pretty dramatically, and Penny was feeling quite a bit better. By 1:45 am, Penny was asleep in her chair (which we have discovered works better than a bed right now), and she had her best night of sleep this week.
We'll continue to monitor things over the next few days and we have medical appointments the next couple days at which we will discuss possible causes and remedies for dehydration. So far, it seems our decision not to enter hospice care has been a good one, since it allowed Penny to get fluids last night. We are hoping we can eventually get things set up so she can get IV fluids at home from time to time.
Sunday. We enjoyed a nice brunch with our friends from Wisconsin before they started their return trip. Penny is feeling much better (she just picked up her knitting), but is taking it pretty easy today.
So there you have it -- the highs and lows of a week at home (mostly). Dehydration is not so fun, but at least the remedy is fairly straightforward. Telemedicine and home nursing have reduced some of the chasing to medical appointments. The feedings are going pretty well and we have increased almost to the maximum targeted rate. It looks like we should be down from 24 hours to 12 hours (mostly overnight) by sometime this coming week. So far the nutrition hasn't stabilized her weight and hydration problems, but it does seem to make her feel better.
Comments
Jim Ludema: Thank you for the update, Randy. We continue to hold you, Penny, and your kids in our prayers in the highs and the lows.
Susan Langeland: So thankful to hear from you. Itβs wonderful to hear of the normalcy of some cooking and visiting times. May you soon be able to find ways and means to avoid any more Friday and Saturday-type days. Praying for goodness and mercy.
Alisa Tigchelaar: Thank you for the update, Randy. So glad to hear of time with family and friends, that Penny π is at least feeling better due to nutrition/fluids and better bloodwork. We continue to pray for all you do and may stand in need of.
Marie VanderLinde : Thankful for time spent with family, precious! And praying for ease in any form!
Scott Vander Linde: Quite a week. Thankful for sleep and the good times with family and friends. Praying for perseverance for those difficult lows.
Mary Hulst: Grateful for the update, and praying daily for all of you.
Patricia Boer Fischer : ππΈππ·ππππΈπ·πππππΈπ· Just wanted 2WISH Ya's both a HaPpY hApPy VaLeNtInEs DaY π 2marow ππ·ππΈππ!! May Our Lord Jesus π Give Ya's a Great Day 2gether,, Sendin Ya's Lots of Hugg's Love & Prayers Ur Waaaaay!! God Bless Ya's πππΈππ·π Love Cousin Patricia Boer Fischer ππ