Home For Good

Austin came home on the afternoon of the 16th. It was a loooong two weeks, but he made it. His kidney is working well. It is has been somewhat nerve racking, but really great to not have dialysis. Everything is new. New meds, new things to look for, new things to worry about. He is doing so well that they are going to switch him to once a week labs/visits. It has taken some getting used to, sometimes I have to remind myself to take a step back and appreciate this for what it really is instead of nit picking or borrowing trouble over little thing. Austin has received a successful kidney transplant. Wow. It feels great to say that!

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!

Nothing New....Just a Brand Spankin' New Kidney!

Our heros, the main characters of our story.

Davita Dialysis Crew: Chirstian, Louann, Loraina, Lauren, Luz, Mark, and Jennifer.

The night before surgery, zoning out, with his no-no on.

We made Jacob a shirt that says on the front: I gave my nephew a kidney and all I got was this lousy t-shirt, and the back says: Move aside, world's greatest uncle coming through.

This last weekend we prepared for the transplant on Tuesday. Ben's Mom Diane and my Mom Mindy came down, as well as Jacob and Serenity. Monday morning we woke at 5am to go to dialysis. Austin's chair was decorated and everyone had signed a card for us. I was way more emotional that I needed to be, but these wonderful people that love my son had become my friends, and we are going to miss them! Austin has been struggling to keep down some of his new meds (cellcept), and was being tired is a side effect of this particular med. That combined with seeing everyone stressed (even though we try not to show...he knows!), fasting before surgery and being a little scared, he was pretty reserved when they took him away to surgery. It is sad to see him like that, you try and distract him the best you can, but he is very observant, and pretty smart so it doesn't always work.
His surgery was a couple hours shorter than what we anticipated when they told us that he was done I couldn't help but to cry a little. Jacob was out before Austin, and in A LOT of pain. So much pain that couldn't stand any noise or to be touched. This was after having to fast for 2 1/2 days. What a hero! The surgeon said that it was a beautiful kidney with a nice long artery to connect with and it went smoothly. He said that as soon as he hooked up the blood sources the new kidney started to make urine just a few moments later.
When Austin was sick with HUS his number for measuring how well the kidney was working (creatinine) was at a 4 when a normal person's was .7 and under. Austin's creatinine went from a 1.8 post dialysis on Monday to a .1 today. The BUN is another number that is important to measuring the effectiveness of the kidney. Austin's highest BUN was in the 80's and now it is a 4. The renal team is well pleased, and so are we!
Austin slept most of the day of the surgery. They pushed a lot of fluids, so much so that his feet looked like stuffed sausages and his toes like little smokies. Also his face and eyelids looked really puffy and he was very pale. Since he was receiving this large organ that needs a large amount of blood his H and H (Hematocrit, Hemoglobin, basically red blood cells which) were quite low so they had to transfuse him the night after surgery. He has this thing that he does, he stares at the TV and zones everyone out (won't answer questions, no facial expressions). Man, if he knew how, I bet he would be really good at poker! He has a blue sleeve like thing we call a no-no, it has a shark pattern on it. It goes over the IV lines that are on his arm as well as protects his arm from the many attachments he has coming from the lines connected to his dialysis catheter. These can be quite sharp, and a big owie. Whenever the nurse takes off the no-no he would demand it be put back on. It almost seems to be like a blankie, or comfort item to him. You know you spend too much time in the hospital when something like that happens!
The day after surgery he said that he was hungry. He wants 3 pancakes, 3 pieces of bacon, 2 waffles with syrup he told us. Every time a Dr would come in he would ask for bacon and since we have a lot of Dr.'s coming in and out, he was always saying it. Since they heard bowel sounds they allowed him to take some sips of apple juice or water. He also took some steps, but he has an IV on the top of his foot, which hurts. He cried the whole time, but soon after walking that is when he started to ask for food. Walking helps wake-up your gut, but it is a fine line. Walking makes you sore, but the pain meds you need after walking slow down your gut, so you have to try and keep a balance. Jacob was also discharged. He is staying at the Tiverton House (hotel) until tonight, then he will go stay at our house.
I woke up this morning at 4 am with an extremely bad headache. The sinus pressure felt like an ice pick was being hammered into my left eye. So I spent an hour washing out my sinuses, and some more time searching the internet for help. I know that I have allergies, and the stress I have been under could trigger post-nasal drip, so we don't think it is viral. I almost went home! Ahhh! I was stressin', but after speaking to the Dr's they said I could stay as long as I kept good hand hygiene and wear a mask.
Today we are trying to get Austin up and moving. They will take the IV out of his foot which will help. I will be truthful that I thought that he would bounce back sooner than this. Not that he would be doing kart wheels and not be in any pain, but I stare at this little boy and wonder if my son is somewhere in there and when I will get to see him. That is really dramatic sounding, but it's hard to see him like this and I am so excited to celebrate with him!!! We have a really neat trophy we had made that we are going to give him, and then we are going to have cupcakes and have a birthday party! Patients has never been one of my strong points, this year has strengthened it some, but it is still a work in progress.
Oh, and I can not forget to mention how incredibly grateful we are to Jacob. It was so hard to see him in so much pain after sacrificing so much for Austin. I totally wish that I could have endured his pain! He went through so much to be able to donate, and worked really hard. It amazes me that he would do all of this for Austin. In the words of Silvia H. Allred from this last conference:

"We follow the Savior’s example when we minister to the needy, the sick, and the suffering. When love becomes the guiding principle in our care for others, our service to them becomes the gospel in action. It is the gospel in its finest moment. It is pure religion."

And this is what Jacob did, he was guided by love, and now Austin will be able to love others, serve a mission, have his own family, go to college, run, play, just be....all because of Jacob following Christ's example. I hope that Austin can someday realize how much he is loved, and how much others were willing to sacrifice for him. But not so he can feel guilty, but he can feel humbled, and overwhelmed with Christ-like love, so in return he can love others in the same way. We are so blessed!

Hero Pictures and Emmaisms

I can just hear the Batman theme song in my head now...duh-nah-nuh-nah-AUSTIN! I want to get some good pictures of before the transplant. We will be admitted tomorrow morning, what a blessing to have this opportunity.

Emma has some cute things she has been saying lately:

Ben: What is your doggies name?
Emma: Hmmmm...
Ben: Isn't it Ruff Ruff?
Emma: No Daddy it's Ruff Ruff Jones!

Mommy: Mommy Jones. Daddy: Daddy Jones

Emma: What's that?
Cortney: A scarecrow!
Emma: No, no, no! It's a nicecrow!!!

Emma:
Bruddie you're cute! You're cute! Okay?
Say cheese! CLICK! (she actually says click while she takes the picture with her cell phone).

She could be saying something like "Daddy is at work" and then I tell her "Actually, he is on his way home right now" then she will say "OH YEAH (a real emphasis on this phrase)...he is on his way home" then she will giggle, almost like she is laughing at her self for not saying that in the first place. Very funny.

Emma loves all things tiny, and insists that she is "Baby Emma", and she is tiny. She says that she always wants to be tiny, and gets mad when we do not give her the smallest portion, or call her a big girl. She says "No! I tiny!". Ha!

We have a great Young Woman in the ward that has been my Mommies helper for the past couple of months. She comes over two days a week and helps with anything. I really love our Amanda! We all do. *Sniff* We are going to miss you Mandas! (That is what the kids call her) We are so grateful to her, she has been a great help.

Seattle

Brie and Sandy

In the beginning of July on the 6th my Mom called me to let me know that her sister was going to pass away soon. Sandy was fist diagnosed with breast cancer 5 years ago. I purchased a ticket that very night to go on a red-eye on Friday the 7th.
Sandy and her partner Brie have always been special to me. Sandy was very laid back, intelligent, always cracking jokes, and smiles. Brie smiles a lot too, she can be methodical, she is passionate, and intelligent as well.
Sandy passed on July 19th in the early morning. I was so glad that went up to see her, and to see Brie.

Pic-in-ick Time

About a month ago we drove up to Frazier Park to have a picnic. Before we left the kids got the idea to take my newspaper basket, empty it, and fill it with all sorts of goodies. They went through the fridge and packed strawberries, jam, eggs, among other things. They reminded me of Yogi Bear when they would say "We go on a pic-in-ick Mommy? With the pic-in-ick basket? Pretty stinking cute. We started out and stopped to get Popeye's Chicken (yuuuummm) and drinks. Emma loves Sprite, so we got her some. The weather was great, and there was a little pond with ducks. The kids loved it. I was not happy when I discovered there were geese. When I was a child they would chase me when I visited my grandparents. They approached the table when I was there by myself. I quickly packed up and ran! It was a great little trip.

Isolation is a Good Thing

T-minus one week and Austin will be receiving one of the best gifts ever!!! We had our last transplant appointments yesterday. We had to:

1) Have labs drawn (11 viles of blood!?!) for the last cross match. They combine his blood and Jacob's to see if any antigens develop. This was done a while ago, but they double check to be sure that nothing has changed, or that any mistakes were made earlier. They also run other tests.
2) Have a chest x-ray.
3) An EKG.
4) Hospital pre-admidt.
5) Meet with the surgeon.
6) Meet with the nephrologist.
7) Go to dialysis.

We left around 7 am and got back around 8:30. It was a long day, but we felt very accomplished, and Austin did a great job!!!
While were at the hospital pre-admission I received a phone call from transplant stating that I needed to get over to the transplant clinic at once, that the Dr. I needed to see was there. I was some-what annoyed since I had a lot of stuff with me, a rambunctious little boy, had just finally had our name called to go into pre-admission, and now had to leave and carry everything over to a new building. But I hurried over anyway and was greeted by a very unassuming quiet Dr in his long white coat. He informed me that our surgeon was on sick leave and he would be replacing her. I was not very happy to hear this since it was so late in the game. I asked him how many transplants had he preformed and he informed me "over 2,000". Then I asked "how many pediatric?". He couldn't give me a full answer, he said something like "oh, well, I have done quiet a few". So I asked how to spell his name and explained that my family would like to know more about him, so basically to look him up. He smiled and told me he would do one better and gave me his card. He was very kind and patient as I continued to question him on the process. He was very gentle with Austin. I like him, I told Ben. He asked to see his card (which I had not bothered to look at) and informed me that he was the Surgical Director! HA! I had been grilling the guy that probably taught that surgeon that he replaced! I laughed at myself, and now it totally made sense that transplant wanted me to hurry over to see him, he doesn't have tons of time I'm sure. Yeah I kind of felt dumb, but sure am glad that he was patient with me and answered all of my questions. That is my kind of Dr. So I am actually kind of happy with this new development, and we feel pretty blessed.
Austin will go in on Monday morning, have dialysis, go on a clear liquid diet, get an IV started. Jacob is coming in Sunday night, and will spend Monday night in the hotel room. The surgery will take about 4 hours for Jacob and around 6 for Austin. They will be in operating rooms right across the hallway from each other.
Jacob's recovery will be about 24-48 hours before he can leave the hospital, and then another 6-8 weeks before any heavy lifting. Austin will be in the hospital for a week or 2, and in isolation for about 2 months. He will have labs drawn Mon and Thurs for a couple of weeks, then only on Mon for a couple of months, then every 2 weeks, then every 3, till he will only need to go once a month. All the lab work will help the Dr.'s adjust his immuno-suppressants to where they need to be. He is on immuno-suppressants right now, so we are in isolation right now. I woke one day with a runny nose and almost had a heart attack, thankfully it was allergies. I have NEVER been so thankful for allergies! If any of us gets Austin sick we might have to move the transplant.
They said that if all goes well we can go to Wa for Christmas!!!!! But that Austin needs to stay out of big crowds for about a year, so no Make-A-Wish trip for 12-18 months post transplant, or Disneyland, or other crowdish places.
Thank you all who pray for our little guy, hopefully he'll come out on the other side of this swinging, and ready for the rest of his life.