Jayla is such a rockstar! She is doing an amazing job. #JaylaStrong 💪💁
We had a great report this morning, as Jayla's labs are looking great. Her numbers are within the correct limits, actually good enough that once again, she did not have to have dialysis again today!
We will continue to do blood work in the mornings and the results will determine whether or not she will have dialysis.
She has been trying to eat what she can, which isn't very much, as she is still being fed by her tube, but her doctor said this morning that if she can work hard to eat more, maybe her feeding tube can come out. This may happen once he feels that she can maintain her nutrition by eating all food by mouth, as all IV's are out. She has been on a strict diet to control the amount of phosphorus, potassium and calcium she has been allowed. Her team felt this morning that because the levels are looking good, she is now free to eat whatever she wants! Woo wooo!!! Once she has her tube out and appetite back, I'm sure it will be more exciting to try more foods and drinks again.
We are still having a problem with medicines making her sick. The more medicines we can take away, the better off she will be.
Jayla's heart rate is slow and steady, and she remains on blood pressure medicine. It is not unusual for kids with kidney failure to have high blood pressure. We still have to be careful and only give her the medicine if we know we are not doing dialysis. If she takes it before dialysis, her blood pressure will get too low and we will have to stop early.
Output was 1200mL today!
Jayla was so excited this morning to hop out of bed and walk over to the window to look out over Kansas City, and to watch the pigeons below our window. She really got a kick out of watching them and it was great to see her smile. When she gets out of bed, we have to slow her down from trying to run away too fast, as we have to follow behind her with the IV stand that holds her feeds.
So I posted an additional picture at the top of this page. A wonderful woman offered to draw a caricature of Jayla for her this evening! We were so happy that she did this for our girl and the woman was AMAZING! And SO talented! It literally took her 5 minutes and she was completely finished with the drawing. This restores faith in knowing that especially in today's world, there are so, so many good people out there. So many volunteers here that only want to brighten the day of these sick kids for nothing in return. Maybe, maybe a smile. Living in a small town, we see good deeds all the time and try to do good deeds ourselves the best we can. Especially in a big city and hospital with so many sad situations, these volunteers really make such a difference. It is quite humbling. And they do make a difference. #BeTheGood
The lab results will let us know what we are doing tomorrow and we are so happy with her progress just from today.
Thank you for all the prayers. We believe - and believe that your prayers are working for the improvements she has been making. She is getting stronger every day.
Thank you prayer warriors!