Waiting

We don't really have anything new to share for those of you on Facebook. Ben's Brother Jacob is a great match and all of his tests came back as good. They did say that he needs to loose a few pounds, and his blood pressure needs to come down a touch. Jacob really isn't over weight nor does he have high blood pressure, but when operating with only one kidney they want Jacob to be really healthy since he doesn't have a spare. In other words the kidney is great for Austin, we are just making it safe for Jacob to give. Jacob has about 5 more lbs! Down from 20! Whoohooo! Go Jacob! We hope that the transplant will take place in July since Jacob starts back-up at law school in August. We are incredibly grateful that he is willing to be a donor. We still have some others that are willing to donate in our back pockets just in case, but we are hopeful for Jacob.

This whole deal has been hard, life changing, tiring, faith promoting....the list goes on and on. I really don't know how Austin has eperienced this and still be relatively well adjusted. I have had more than one person tell me that they would never know that he was sick. He is such a trooper! I give Austin a growth hormone shot every night when he is sleeping, to cut down on the anxiety that he has about needles. He used to cry and then go back to sleep, now he doesn't even wake up.
About 3 weeks ago when we were getting him ready for bed I noticed some blood coming through the dialysis catheter dressing. This can be really dangerous considering the risks of bleeding out. I yelled for help laid Austin down and took off the dressing. It was not apparent where the blood was coming from, after a couple of alcohol wipes we discovered a small crack in the line above the double lumen. We clamped the line called the Dr's, semi dressed it (it is supposed to be sterile since the line runs close to his heart and any bacterial can cause an infection) and headed down tot he hospital. We were so grateful that my Mother-in-law was visiting! We both took Austin down and he had emergency surgery the next morning to replace his catheter. It was successful! We went home the same day. We were so fortunate that this is how it happened. Austin might not have told us that was bleeding, since it doesn't hurt to bleed, he could have bled all night. The whole thing really scared us.
Emma brought a cold home that all us caught. A week and a half after Austin's surgery he started to be sick with a real barking cough that sounded similar to croup. While we were at dialysis they suggested that we go to the pediatric urgent care at UCLA to have a chest x-ray. I am so glad we did! They could not hear the pneumonia but they spotted just the beginning of it on the x-ray. We could have gone home and taken him to the pediatrician that would not have heard it, and then sent us home. We were so lucky to catch it early and not have to hospitalized. My cousin Allison was visiting during that time as well, so we could be at the hospital all day, we were grateful for her help. What blessings!
We now are just waiting. Before I felt the need to be doing something ALL the time. Trying to find a donor, trying to get information from the donor side, then information from the transplant side...the list goes on and on. Now we just wait. And guess what? It's okay. I am not anxious, or angry, or sad. We just are. We have found a new kind of normal. One that does involve dialysis, throw-up, not being able to go swimming, or be out in the sun for very long, and feeding tubes and backpacks. But it also involves making cookies, going to the park, having fun, growing, faith that Heavenly Father has a plan, and feelings of contentment, a routine, and normalcy. It proves that we are resilient. Can we make it the rest of the way? I hope so! Thank you all for your prayers!