Monday & Tuesday Update

July 21 & 22
By Karen

(Note: this photo of Karen and Clay was taken in the Rockies two years ago. It seemed appropriate on a day that reached 100 degrees in Manhattan.)

The baton was passed from Linda back to Karen on Monday. Karen had returned to Kansas for a few days to attend the Friday and Saturday evening performances of the musical The Pajama Game, in which her son Daniel had the lead (Sid Sorokin). Then she brought Daniel and Cameron back with her – this time driving from Kansas to Illinois and then Indiana. She dropped Daniel at Camp Emmaus on Sunday for Senior High Youth Camp. She and Cam stayed overnight in Elgin, and then they arrived in Fort Wayne early Monday afternoon.

Monday and Tuesday have been full of ups and downs! Monday’s big occurrence was a surprise announcement late morning from the rehab hospital staff. They had determined that Mom is not meeting the criteria to remain in this facility. Her medical challenges (especially the nausea and inability to eat, the dizziness, and the lethargy) have been interfering with her ability to fully participate in the 3 required hours of therapy each day; therefore, she has not made the progress they would like to see. Mom has medical issues that they are unable to address adequately with the staff they have available at the rehab hospital. For instance, they think Mom should be seen by a GI specialist to determine if there are digestive issues causing her nausea and vomiting. They do not have the capabilities to investigate and treat GI problems at this facility. Therefore, they are recommending that we move Mom to an acute care hospital to provide her with the level of medical care she needs to build her strength. The hope is that she can then resume the level of rehab that she has been exposed to here – either by returning to the rehab hospital or at Timbercrest.

This announcement came as a surprise because of its timing. We knew that they held weekly conferences about each patient on Thursdays, but we had no idea they may make this kind of decision on a Monday. It was not especially surprising that they think her medical needs require further attention, however. We also have been feeling like we are fighting an uphill battle in order to get her to participate in so much therapy. This has been particularly exacerbated by the Valium, which does seem to help decrease the nausea, but makes her very sleepy and lethargic.

On Tuesday, Karen left North Manchester very early in order to “catch” the neurologist at the rehab hospital first thing in the morning. She was told to be here by 7:00 am if she wanted to be sure to meet with him. (He had been on vacation since the second day we arrived at rehab. Therefore, Mom’s case had been “overseen” by 4 other doctors from his practice, and none of them had communicated with us at all over those 10 days or so.) It was a good conversation. He helped to clarify what he saw as Mom’s biggest challenges and how the staff determines whether someone is making adequate progress. He made it very clear that he has Mom’s best interests in mind.

Dad and Cameron arrived about 10:00. Mom went through the day as usual. She had 2 vomiting episodes in the morning, but she was given some medication to prevent any more vomiting and she participated well in her therapy sessions throughout the day. She even walked about 20 feet with the assistance of a walker and of the physical therapist! Cameron provided great incentive for her. Having her youngest grandchild walk in front of her, encouraging her all the way reminded Mom of why it is important to work hard in the therapy sessions – she has a life outside the hospital to which she would like to return!

Dad, Karen and Cameron visited one of the two acute care facilities in Fort Wayne during the afternoon on Tuesday. We were pleased with the program and its focus; however, the facility itself is not very impressive. The rooms are very crowded and the nursing staff is forced to reside in the hallways. It was a loud atmosphere and seemed quite chaotic. We intend to visit the second facility tomorrow to consider and compare the strengths and challenges of each.

We are unsure of what the rest of the week will hold. Will we remain in the rehab hospital? Will we move to an acute care facility? Will we gain a better understanding of her medical needs? Will she make progress in her therapy sessions? Have we reached a plateau that we will not surpass? These questions are utmost on our minds and we will keep you updated as best we can. Thanks for your continued support!