Update #4

                                                                         

October 22nd, 2017

Apologies for the lengthy update but as has been par for the course over here, Anna has had a pretty “adventurous” few months.  Over the summer Anna took the initiative to be proactive with her medical team and began the discussion to switch from hemodialysis to peritoneal dialysis.

The most important difference is rather than going into the city three times a week to the dialysis center, peritoneal dialysis is done overnight at home, with the most obvious advantage of being able to return to our regular school and work schedules.

Anna was admitted on August 18^th for surgery to place the necessary line.  Although everything went smoothly, recovery from abdominal surgery was still painful and slow.  She was discharged two days later but had to continue the outpatient dialysis for two weeks to allow complete healing.

After several days of recovering at home Anna finally felt up for returning to “real life” and attended a Friday night football game at her high school. Feeling back to herself, she and her friends were running to the car when Anna felt the sensation of her legs “giving out.”  Bracing for the fall to protect her still tender stomach, Anna somehow landed directly on her left knee. After her kind and responsible friends got her home safely, it was clear that she needed some pretty serious medical attention. Back at Lurie’s Children’s Hospital for a long night in the ER, Anna ended up requiring 13 stiches in her kneecap.

After another weekend of recovery, we were back at dialysis Monday morning. When without warning or truly an explanation, Anna had an extreme “neurological” reaction after dialysis. This required an ambulance ride back to Lurie’s ER. With no real explanation found and any dangerous reasons ruled out, we were sent home. Yes, it is hard some weeks to feel like this kid never catches a break….

Finally, after the two week point, we were able to begin the “at home” dialysis. However-- yet again-- challenges ensued.  Basically, alarms went off every hour – all.night.long. Despite multiple attempts to “fix” the problems for three days at home, on September 10^th, we were admitted back to the hospital. The plan was to figure out what was wrong as well as to receive her “old” hemodialysis since the new line was not working properly.

On Monday morning, during a routine test, an “incidental finding” discovered a blood clot on Anna’s “old” dialysis line.  This put us in less than an ideal situation with Anna unable to receive either form of dialysis until both issues were now resolved.

The next day Anna was scheduled for four hours of surgery with two different surgeons – one to replace the hemodialysis line (and hopefully the blood clot that had formed on it) as well as to fix the new peritoneal dialysis line.

Luckily both procedures were successful. But.... Anna was now considered to be at high risk for developing further blood clots. The hospitalization stay ended up extending to a full 12 days in order for Hematology to stabilize her on an appropriate level of blood thinners to avoid further blood clots.

Anna was discharged on September 19^th, `and once again had to return to outpatient dialysis to allow the adequate healing time.

I am happy to say that we finally began the new dialysis on September 26^th and finally things seem to have stabilized. Although, once again, it is taking time to adjust to our “new normal.” We have now become not just parents and caretakers but truly home health care providers which includes nine hours of nightly dialysis, blood thinner injections, and medication management, etc. all in the home setting,

Although she still remains “ineligible” for a kidney transplant at this time, Anna’s medical team continues to focus on preparing for this being a realistic goal in the near future.

Living in this world and learning more about the process every day, we have all become increasingly aware of the need for people to register to be an organ donor as well as the need for living donors. Please feel free to contact us for any information on this – and thank you to the friends and family who have already graciously come forward to ask how they can get more information about being a potential donor.

Many thanks for everyone’s continued outpouring of support and love- we are truly grateful and appreciative– Beth, Doug, Anna & Sloane