On Friday, Maci got a break from dialysis for the weekend. They did bloodwork for a baseline and wanted to give her a break to see what her kidneys are doing or can do on their own. A month ago, Maci would drain off her dialysate really well during dialysis. Now, it's slowed. If 60 mLs goes in, we are good to get 60-70 mLs back vs the past 80-100. Dr. Ault thinks it could be that Maci is absorbing some of the dialysate and because her urine output is so good, she is eliminating the fluid through urine. She hasn't been overly swollen and doesn't stay puffy for long.
Dr. Ault wanted to see what her kidneys did on their own. We would tell that by the lab numbers. On Friday, her BUN was 9 and this morning 15 and Creatinine was 1.66 and this morning 2.04. Not a huge jump but an increase all the same. We will see what Dr. Ault has to say when she rounds this afternoon.
Rick and I have REALLY enjoyed Maci being free from her dialysis this weekend. We were able to unhook her from her monitor and walk around the NICU with her. Her nurses took her on a stroll too. Her nurse Friday night had the joy of having Maci stay awake until a little after 4 am! I called to check on her because I couldn't sleep and discovered that Maci was up past curfew and partying in the hallway with the rest of the nurses.
Here is the new sign on her door....
I know I say it a lot but a lot will never be enough to describe how much I absolutely love these nurses that adore by baby girl. They go above and beyond and I appreciate them SOOOOO very much. They are good to me and Rick and they are especially great to Moo. I just hope they know who they are and that I wish I could, but will likely never be able to explain to them, just how much they have made this whole nightmarish experience easier to live through. The smallest act of kindness means the world.
I was disappointed this morning over the labs but not devastated. The increase could have been much higher. God is much bigger than kidney disease and HE knows what he's doing even when I don't know what will happen. I can only trust Him.
Dr. Ault also said that should we have to resume dialysis that she wants to press on with getting Maci's volume up to where we can start training on the machine for home. Rick and I can see the next light at the end of this tunnel of many tunnels. Regardless of how things go with dialysis, WE WILL ADAPT and we will love our daughter and enjoy our family. It will be beyond wonderful to be able to be at home as a family and I am sure Tristan and Rebecca will appreciate not having to take trips to the hospital. Those two kids have been tremendous through all of this. Rick has really made an effort to be home on the weekends we have the kids while I am still at the hospital the majority of the time. I hope that Tristan and Rebecca both know that my spending so much time at the hospital is of no indication of my loving them any less. If it were one of them in the hospital and Maci was healthy, I'd be at their hospital bedside. I may not have birthed those two but I sure love them.
I have also grown very thankful for the group of kidney Moms that I stumbled across and joined their group. Their experiences, advice, words of encouragement help so much. Our stories may not be identical but our feelings of frustration, joy, hope, the need for advocacy and prayers for a cure are the same.
A big THANK YOU to my kidney Moms.
Maci sitting during her PT session on Friday, 2-17.
No comments:
Post a Comment