At the end of January this year we made the decision to do Joes dialysis at home. He was not doing that well at the clinic. Complications from only dialyzing three days a week were leaving too many toxins in his blood stream and making it difficult to balance his seizure medications . The rebound high blood pressures sent us to the ER and a few days in the ICU to straighten out. I learned a lot about myself , my husband and both of my boys. I think even the dogs had to adjust. We are roughly a five and a half months in and still trying to adjust to our new normal. Our morning conversations are not about vacations, pending projects or what's for dinner. Our morning conversation are mostly about dialysis. We are trying to figure out where we come in. How do we balance this new normal? How do we find home again, What goes undone, what interests do not matter any more? How long will this instapot last and how much more weight am I gaining back?
I hear parents say they are giving things up for their children. They Sacrificed! I have give nothing up nor have I sacrificed myself to being a parent. I am a mother. I have less time, I have less freedom, I get less sleep and have more medical knowledge then I ever wanted. I have been a mother for almost 30 years and still learning. This part of the journey has been exceptionally hard. There were a lot of hurdles to jump to become proficient at Hemo Home Dialysis and we are still jumping. Working this into an already busy schedule has not been easy. This part of the journey has definitely defined what is really important on the list of things to do. I mean seriously, one morning I was getting in Joe's first BP for the day , at 7:00, and could not remember when was the last time I brushed my teeth or my hair or bathed.? When was the last time I got an PT/INR? When was the last time I actually relaxed? If you are a hands on primary care giver then you understand the demands of meeting the needs of a individual that finds daily selfcare challenging. If you are a primary caregiver that is also the medical support then you are really TIRED. I am proficient at doing blood draws off a central line (permacath) located in the subclavian vein in left chest cavity on my son. My husband and I both are trained to do this as well as use this central line to perform dialysis on my son 5 days a week. I am underqualified but have been called to do this.
A red alarm number 10 "air in the line" started playing out the night mare I had hoped we would avoid. We have to find the air remove it in under 3 minutes if not the blood will begin to clot and we cannot return what is in the access lines back to his body. We started treatment at 9:02 with out any issues as usual. At 10: 30 a red alarm number 10. It took a while to locate it and remove it. Luckily the cycler was still slowly moving the blood. We won ! At 11:48 with 17 min left to run Red alarm number 10. We had to call the training clinic they could not get the machine out of the alarm mode and it was not cycling. He lost all that blood in the lines to the cycler and the blood in the filter awaiting cleaning. We lost! The stress is so great we cannot breathe at times. The clinic did inform me that they had sent him iron for me to give him three times a week after treatment. It was to be administered in the venous line 100cc and given slowly in 2-5 mins. and only if the BP systolic is over 120. I am going to have a real moment and say 'I Do Not Want To Do This Anymore!" Five days a week we get up and do something we do not want to do. Its not Work, its not cleaning out the garage or even going to the dentist. It is dialysis for our son ,so there is no NOT doing it. Another real moment: If I had wanted to be in the medical field I would have perused a degree and been a lot more educated and prepared than I am now. Tomorrow we are off. No dialysis performed on Tuesdays. We are numb and stunned and the PTSD on Wednesday when we have to start back up again will be almost unbearable. We will do it and pray for the best!
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