Going Home...Then Back Again

His post transplant trophy.

His incision.

Playroom

Bubble Machine from the Hospital Fairy.

His pancakes and bacon when he was allowed to eat.

Dr Sonal (fellow), Dr John Nygen (fellow), Dr. Eileen Tsai (attending)

We went home from the hospital on the 9th, just a week after the transplant. While at the hospital we had cupcakes and sang Happy Birthday to his kidney, then we gave Austin his trophy we had made for him. He loved it!!! He played a lot of bowling out on the playroom terrace, and painted and drew pictures in the playroom. Daddy went to get him his pancaks and bacon since breakfast is over at 10 am at the hospital. He ate all his bacon. He also loved the bubble machine that the Hospital Fairy brought, it was great motivation when he had to do hard things.

Going home was awesome. Whenever we leave the hospital we feel a sense of accomplishment. Almost like proving to fate that we beat it once more, and we are leaving with our son. After what happened with his HUS whenever we can leave with Austin feeling well, I will feel like this.

We went home and Austin was so happy to be there. When Austin went to bed that night, I couldn't sleep. I was nervous to be home now, with this new routine, and different responsibilities. Now he had meds that had to be exact, and with his depleted immune system and the very new kidney. Things could go bad, fast. That is why we go to clinic twice a week with labs each time. Austin woke up around 2 am groaning like he was in pain. I gave him some Tylenol and he slept very little. The next morning we gave him some more Tylenol at 7:45. At about 9:30 he was looking kind of tired and laid down on the couch. At 10 he was acting lethargic, and when I checked him he was really hot. His temp was 100, a half an hour later I took it again and it was 100.1. I called our transplant coordinator and she told us to come down, but we didn't have a car since Ben's mom was running errands. We packed and when she came we left. I gave him Tylenol at noon and were on our way. We got there at 1 and he did not have a temp, which was frustrating. I let the pediatrician know that he would have a fever if he didn't have Tyleonl before we left, he didn't believe me.

While we were there our transplant coordinator came to let us know that Austin's results came back positive for a UTI from a specimen that they took before he left the hospital. They ordered a catheter to get a clean catch. I argued with the Dr.'s that he could pee in a cup but they said that they had to do it this way. Uggh! He screamed and kicked, and was in so much pain when they did it. The catheter went in all the way and nothing came out so they pulled it out. I then asked him to pee in a cup and he did! All of that for nothing. Frustrating.

We kept taking his temperature. At 5 the nurse took it under his arm and no temp, but he was really hot so she took one rectally. It was 101.5. So they said that they need to admit him, took us to the ER so we could wait for a bed. Ben came down to switch with my Step-Mom and me so we could rest up. While we were there our Attending Dr. Tsai came to let us know that he was not rejecting his kidney. I broke down into tears when she said that. So grateful! She said that this is really common and she knew that I would be frantic about it (Who me? Frantic?) and wanted to assure me it would be alright. That was awesome and a load off all of our minds.

He is on IV anti-biotics. They are going to see if another form of the anti-biotics that can be taken orally will work on the samples they have so we can go home, otherwise we have to see if a nurse can come to our house to administer the IV meds that must be given every 8 hours for 8 days.

This is just a little bump in the road. Right now we need to get a urine sample from Austin but he doesn't want to give it! They will have to cath him again if won't pee in a cup. Poor little buddy, he has gone through a lot. *UPDATE* He peed! Way to go Austin!