Day of Life #38

Not exactly the morning we had hoped for today…

Her BUN is 26 down from 27 and Createnine 3.91. Spoke with Nephrology and the doctor told us that he is concerned about this. Basically her kidneys are functioning in every way right now except for cleaning the blood. If they don’t clean the blood she won’t grow. So he said she is close to needing to go back on dialysis. The next few days will determine if she goes back on or not. It is crucial that she start growing. She is already behind as we had to spend all that time getting her ‘water weight’ off of her so we were not able to start monitoring her growth until pretty much yesterday/today. If she does not gain weight/her numbers are still bad she will have to go on dialysis. If she gains weight but her numbers are still bad the doctor said he can still wait a while before putting her back on. So please pray warriors help us out and pray that she will gain weight/numbers will get better!

I clarified with the dr. and he confirmed that if her kidneys do not recover in the next four weeks it is almost certain that she will need a transplant. However, she cannot get one until she weighs 20 lbs. He says that most babies are at 20lbs at one year old, but babies with kidney problems (like her) take longer. If she needs a kidney transplant, she would go on dialysis for 10-12 hrs a day until she is big enough to get a transplant/there is a donor for a kidney. They prefer to use adult kidneys as they work better in kids (don’t ask me why-?).Again she would stay at the hospital until they teach us how to do dialysis at home. Even if she gains weight that still doesn’t mean she will avoid a transplant, her numbers have to improve (at least get out of the 3’s) for them to feel like she will recover.

They did get back the results of the lab from her stool sample- currently it appears that she does not have a milk/soy protein intolerance but the Dr does not want me to go off the diet yet. He said that she has been much more calm since I have been on it (true)- and that he would like to wait until she is up to her full feeds (she is at 70 cc’s every 3 hrs today, full feeds is 80 cc’s)- and then he said we can slowly reintroduce things and see how she acts. Like reintroduce soy-or have like 1 piece of cheese and see if she reacts. He said that the test isn’t the end all be all. So I will continue the diet for now and see how things go. In some ways I really don’t mind it because it feels like one of the only things I can do to help my daughter.

Even though the things I have written about today were vaguely mentioned the other day, somehow it seems more real/scary now. Every day it feels like we are sucking our breath in hoping we don’t receive another blow. Cannot even begin to think how we will deal/manage with everything if she needs a transplant. I know we shouldn’t think about it right now and just focus in the here and now but It is hard not to. Things feel pretty bleak right now even though we know that there have been many blessings as well, for which we are thankful.

We were at a funeral viewing for the son of someone Ron knows yesterday, you may have heard about it in the news if you are from around here. Sgt Dennis Kancler, a marine died serving his country in Afghanistan. It was amazing there were hundreds of family and friends there; we actually were in line 2 hrs to be able to have a chance to speak to his father. It gave me a lot of time to reflect on things, and i realized how incredible it is how much my perspective has changed on things. Just the amount of empathy I feel for this family that I really don’t know, I think is evidence of change. There’s just so much that I didn’t think about before, or maybe I thought about in passing but did not feel very strongly about-but now it is totally different. I/we are so thankful for the smallest things, the smallest victories- and are much more aware of/ have more compassion for the struggles of others. I think it is so easy when things are pretty ‘normal’ or on one plane in our lives to get into a certain groove and do our thing, go to work, come home, see our families/friends etc…but then something like this happens and everything literally stops dead in it’s tracks. Nothing else matters anymore –things resolve themselves, time passes by and you find yourself behaving/thinking in ways you hadn’t before. All I know is we have so much more respect/appreciation for medical professionals, helping organizations, other families, children who are suffering. For that we are thankful. If you can today, please say a prayer for the family of Sgt. Dennis Kancler today who leaves behind a son, parents, brother and sisters and many more loved ones. I am sure they will need to feel God’s loving embrace today as his funeral is today.

Please pray for Madeline that she would gain weight and that her kidney would be able to start cleaning the blood. Her kidney function is extremely crucial and can determine a lot about how the next year of her/our life will be. Father God please heal our daughter.