"This is undoubtedly one of the hardest weeks I have had on the caregiver Journey. After so many complications during and after clinic dialysis We have decided to train on home HemoDialysis. This is our first week and I am feeling defeated. SO much information...and it all has to be done right..no room for error. I do not care how easy the Home training clinic says it is , to hook your son up to a machine that is going to remove his blood clean it and return it to his body, is a scary thing. The anxiety associated with this transition of care for Joe has been pretty rough. We asked ourselves did we have the dedication to be his kidneys 6 days a week. Home Dialysis on top of Tracheostomy care , ventilator management and nightly monitoring, general personal care, food preparation, laundry, cleaning , medical transport, coordination of medical care and medication management is some what overwhelming. Care Giver Stress syndrome is a real thing and We ,my Husband and I, are feeling it this week."
Week one of the 5 week program was tough. We completed our training in 3 weeks. Finishing in so short a time simply meant we were good students not prepared.
We are now 4 weeks into being at home...and I can say this is a very busy schedule. It leaves time for little else. The dialysis run time is 2 hours 20 mins. The prep, to begin is an hour and the disconnect, clean up and prepping the Dialysis machine for the next run is another 20 to 30 min. If we need to make more dialysate (used to "rinse the blood") you can add another 20 min to load the machine and it will run for 6-8 hours. We start getting Joe up at 6 to 6:30 we are running on Dialysis by 8 and done by 11. After, We monitor blood pressure on a hourly basis because he rebounds. His bp will climb to systolic over 200 if we do not catch it and medicate. This on top of meal prep., tracheostomy care , Ventilator management and monitoring at night, Dr. visits, bathing , dressing , putting the toothpaste on his tooth brush and changing the TV input, are still on the todo list . The time we wake up and go to bed, when we eat, when we bath, and if we get a potty break is determined by the needs of someone else being met first. It is overwhelming , it is heavy and some days it feels difficult to breath. There is a weight that you always carry. I am numb.
The cost to not have this weight is to great. The benefits of home Hemo dialysis are being seen all the time. He dances a little more and eats a more varied diet. We have not seen seizure activity of any kind. No clonic jerking, no Tonic Clonic seizures, no focal seizures and less Blood pressure medicine. I hope in the future less Hospitalization with less seizure activity. We are counting our blessings and trying to settle into the opportunity to continue managing his health including dialysis. We are blessed today.
Sheryl
