Tuesday, May 10, 2016

The Agony of Limbo

The last few days have been yet another roller coaster ride. Avelyn made strides of improvement Thursday, Friday and Saturday. She got just over 700ml of fluid off in just three days. We were all quite astonished and despite our guarded hearts, our hope soared. 
On Sunday her dialysis was changed to a lower concentration of dextrose, due to the hospital running out of the higher concentration. (The higher dextrose concentration the more fluid is pulled off with the dialysis.) The team knew that there was a shortage of the dialysate on Friday, so it wasn't like running out was some massive surprise, but that's how everyone reacted. Also a different nephrologist came on Sunday. I don't believe the off going nephrologist communicated well to the on coming nephrologist. Avelyn's need for diuresis is dire, multiple organ systems and her life in general depend on her getting the extra fluid off. It's top priority right now.
However, the on coming nephrologist saw that the higher dextrose dialysate was low in magnesium and calcium-which are electrolytes that often build up in individuals with chronic renal failure. She thought using that would cause Avelyn's mag and ca+ levels to drop-which it very well could, but hasn't. She had been on this dialysate for days without issue, she had done extremely well on it. But alas, the nephrologist discontinued it and all of Nashville was searched for a dialysate bag with a high concentration of dextrose and normal concentrations of magnesium and calcium. None were found. So for two days she was on the low concentration of dextrose. Meaning for two days she did not pull any excess fluid off, and today she was positive 100ml. The significance being, she not only did not make progress but she regressed. She didn't just regress from a fluid over load standpoint, her entire clinical picture is worse. Her heart function, her respiratory function and ventilation,as well as her agitation level- all of it is worse. 
While it's not as bad as it was Thursday, it's a significant regression. A regression that Avelyn could not afford, especially due to lack of communication and logistical nonsense. 
Frustrated does not discribe how I feel about all that's happened. I am sickened, devastated, and angry but that still doesn't adequately describe how I feel. I have been watching Avelyn struggling to breathe today. She is working so hard that her temperature and chest tube output are both up. Her ventilator settings, that were just weaned a little yesterday, are back on nearly highest settings. It's awful and the fact that this could have been avoided and she could have made more progress only makes it worse. Avelyn can't afford these types of failures, because despite how the team has tried to convince me otherwise, that's what this situation is-a failure. It's a failure in doing all that is possible to help her. It's forcing her to struggle unnecessarily, something Sean and I have promised her we would prevent.
On Friday we decided to make Avie a DNR. Meaning of she were to go into cardiac arrest we have asked that the team not do CPR on her. As much as we love and adore our daughter, we think this is for the best. In our minds, passing away would not be the worst case scenario for our precious baby. Exposing her to further pain and suffering would be. She has had her chest opened four times now, with the most recent being only two weeks ago. Chest compressions on an unstable and unhealed chest would cause trauma and pain. So much pain. It's a struggle to treat her gas pain, let alone that of flail chest or broken ribs. Plus, the episode would only make her prognosis worse. She would likely receive more brain and organ damage than she has already sustained. It just wouldn't be fair to force her to endure such pain for a life also filled with pain and suffering. 
Deciding to make her a DNR was the hardest thing Sean and I have ever done. We did it because we love her, not because we are giving up. We want more than anyone can imagine to watch our baby grow, but are not willing for her to suffer for our selfish desires. We continue to stand by her side, cheering each accomplishment and advocating for her as best as we can. 
She continues to fight with unbridled tenacity. Her spirit continues to amaze me, and I am so proud to be her mother. If any baby can over come these circumstances it's my Avelyn. 
Thank you to all who have prayed for our dear Avelyn. The progress she has made is encouraging but please keep the prayers coming. Her survival and recovery are dependent upon a miracle. We are blessed to have seen her come this far but she still has many mountains to climb, with each being higher than the last.
 To all that have given aid to us, thank you. Your aid has allowed me to stay here with my baby. I will never be able to adequately describe my gratitude or thank each of you enough, but I will spend the rest of my life trying. Your generosity is awe inspiring and more appreciated than you will ever know. From the deepest most part of this momma's battered heart, thank you. 
Avie isn't a fan of bright over head lighting ;) She seems to actually like these glasses her Grammy got for her. Plus she looks pretty darn cute if I must say so myself!


  1. She is cute. Father, I would like to pray for Avie and her family. I would also like to pray for the health care workers that are caring for Avie. Please give them the knowledge to give Avie the care she needs. Please continue to provide comfort for all of the family, and especially Avie. We thank you, God for all the care you have given so far. Please keep up the good work. In Jesus name I pray. Amen

  2. I came across your story as it was being shared by a couple of people I know. I started following and am absolutely shaken to my core at the trials you have faced-both you and Avelyn. Though I do not know you, you seem to do it with such grace. I will pray for your sweet girl and for you and your husband. Bless you all.

  3. We are so sorry for all your family has been tho and is still going thru. We have our church praying for your baby and family. We love u all and pray God will answer all of the prayers being sent up on Avie's behalf.