A Look at Our Day

First of all, Joy is feeling better and gradually gaining strength. She wants to eat something or anything. Imagine that! She spends most of the day in the recliner and taking advantage of the weekend to rest prior to beginning her exercise routine at the Center of Living on Monday. We went to the clinic for blood draws and Pulmonary Function Test yesterday. She has a clinic appointment scheduled for this Thursday with various tests at 8:00 AM and then with a doctor at 1:00PM. A lot of hurry up and wait time with these appointments.

The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!

This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.

Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.

Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.

We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!

We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.

Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.

Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!

We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.

Thanks for listening. Now I must get back to work.

Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care