After Layton received five hours of IV hydration, his creatine was down to .5. This is a good sign.  When we left the hospital at about 7:30 pm (we arrived at about 7:30 am - another long day!) Layton looked like the Pillsbury Dough Boy.  He was so full of liquid that he was swollen up all over his body, especially his face.  He was filling another diaper about every half hour.  I suppose I would too if I was getting 5 oz of water intravenously and 3.34 oz of formula pumped into my stomach every hour!  We will be seen in the clinic on Monday and expect to hear we need to up his daily intake of fluids - at least temporarily.

Today we hung around the Ronald McDonald House.  Lee and Layton were able to take a nap and I caught up on laundry.  We also went on a really nice walk around the Stanford Campus.  I can' wait to get out and do more exploring.  This is a very beautiful city with lots of walking trails and beautiful areas to walk.

We have been meeting many families in the Ronald McDonald House.  There are so many seriously sick kids.  It makes me very sad.  I can see the pain in their parents eyes as they talk about the unknown.  I remember back to when Layton was first born and we did not know if he would make it.  My heart aches for these families and we keep them in our prayers.

After Layton received 5 hours of IV hydration his creatine was down to .5, this is a good sign.  When we left the hospital at about 7:30 (we arrived at about 7:30 am - another long day!) Layton looked like the Pillsbury Dough Boy.  He was so full of liquid that he was swollen up all over his body, especially his face.  He was filling another diaper about every half hour or so.  I suppose I would too if I was getting 5 oz of water intravenously and 3.34 oz of formula pumped into my stomach every hour!  We will be seen in clinic on Monday and expect to have to up his daily intake of fluids, at least temporarily.

Today, after a whole week in the hospital, we decided to just hang around the Ronald McDonald House in the morning.  After Lee and Layton took a nap and I caught up on laundry, we decided to go for a really nice walk around the Stanford Campus.  I can' wait to get out and explore more - it's a very beautiful place and lots of places to walk.

We have been meeting many families in the Ronald McDonald House.  There are so many sick, sick kids and it makes me very sad.  I can see the pain in their parents' eyes as they talk about the unknown.  I remember back to when Layton was first born and we did not know if he would make it.  My heart aches for them and I keep them in our prayers.

Layton had his labs this morning and his creatine was down to .6 - better, but the doctor still wants to see .5.  Layton's ultrasound revealed that his kidney was still retaining some fluid, and the doctor said that this is normal after the supra-pubic catheter removal.  When the stint was removed, (came out with the catheter) it scraped the ureter walls a little and caused just enough inflammation in the ureter to create a bit of a blockage.  This is okay as long as it is watched; it is common and the swelling will go down.  

In order to help get his creatine and Prograf levels down, we need to go back to the day hospital for a little extra hydration to help the kidney flush out the Prograf.  We will be there from 1:30 pm-5 pm and then they will re-check his labs.  If his creatine goes up, they need to do something about the blockage/swelling - possibly surgery.  If the creatine goes down, they will up our daily fluid intake and keep flushing his system.

Layton has been a great sport.  He doesn't complain at all about the amount of time spent at the hospital.  As long as he has his "CARS" he is happy. 

This is a picture of Layton's kidney.  It is a bit hard to see but the kidney is full of cysts.

Layton’s creatine has reached a level of .7 up from .5.  This amount seems very small, but is a very big concern to the doctors.  We have increased Layton’s fluid intake via the NG tube in hopes that extra hydration will help the kidney flush out the toxins as well as the medicines.  His creatine level has risen (the doctor believes) because his Prograf level has been rising for the past few days as well. (Prograf is the immuno-suppression medication used to fight rejection, and ironically, it is toxic to the kidney at very high levels).  The idea is that once we get the Prograf to a good level, his creatine level will also come back down to where it should be.  Since the doctors aren’t into taking chances, tomorrow, first thing in the morning, we will have labs done again and if his creatine is not back to .5, they will give him more fluids via IV.  (Perhaps yet another long day in the hospital!)  He is also scheduled for an ultrasound at 9:00am for another look at his kidney and bladder.  I am very concerned – I don’t want any surprises or complications.  PLEASE PRAY THAT LAYTON’S CREATINE COMES BACK DOWN and that his new kidney stays healthy!!!

We had a chance to view Layton’s kidney today and our social worker took us to the pathology lab for our own little examination.   Before you get grossed out, Layton had asked several times to see his ‘old’ kidney.  This was also very important to me.  It helped add closure, and re-affirm that Layton really did NEED a kidney transplant.  It’s always been so difficult to believe since he always looked and acted so normal (healthy).  The kidney was about ½ the size it should have been with cysts all over the outside, and the meat of the kidney was basically scar tissue.  The pathologist explained what a healthy kidney should look like verses what Layton’s kidney looked like.  It eas very interesting and Layton was fascinated by the whole event.

We will update you tomorrow after we get the results from his tests.  Again, please pray all goes well.

YAHOO – Monday was a day to celebrate.  Layton’s 2:00pm procedure to have his catheter out went great!  He was awake with minimal medication for anxiety and 1, 2, 3 - out it came.  I wasn’t real anxious to see this tube yanked out of his tummy so Lee stood up by his head and I stood in the background and closed my eyes.  I was waiting to hear him yell out in pain, but all I heard was, “Ouch” and it was done!  The very first question was, “Can I run now?” Can you believe the doctor said, “YES.”  Thanks, man!

Last night was the first night in three weeks that Layton slept comfortably ALL THROUGH THE NIGHT!  Hopefully, in a few days we will all feel human again.  We had lab this morning, adjusted some medication since his Prograf level was too high (from diarrhea), and then had a clinic appointment.  We also had an abdominal ultra sound this afternoon to see how his bladder looks the day after the catheter removal.  We’ll discuss the results tomorrow or Thursday with the doctor. 

Logan and Grandma headed back to Minnesota this morning.   It was great having them here and we are sad to see them go.  Hopefully they will be back soon to visit.  Logan was an amazing big brother while he was here!  He carried Layton’s tubes, pushed him in the stroller whenever we went somewhere, and gave a bazillion hugs the entire week – they were really great to watch together!!  It’s obvious that they love each other very much.  Layton said to Grandma last night, “You can just leave Logan here when you go. Okay, Grandma?”  Heart wrenchingly beautiful!

WE CANNOT STAND TO SEE LAYTON IN SO MUCH PAIN!  Thursday night they took him off a medication which was controlling his bladder spasms.  These spasms came from the supra-pubic catheter and caused him pain while in the hospital every few minutes. After a few days, he was given a drug which stopped the spasms and pain.  We stopped the medication in anticipation of removal of the catheter on Monday.  His pain returned once all drugs wore off Friday evening and we've been watching Layton double over in pain for the past 36 hours.  On top of the pain in his tummy, he also has a bad case of butt burn because of a combination of a medication that causes a loose stool and a medication he was put on Friday to stop infection at his catheter site.  The catheter is scheduled to come out tomorrow at 1 pm (Monday).  I wish I could fast forward through today. 

I need to keep reminding myself to be happy because Layton is doing so great, but its hard, especially when a person is tired. 

I am also sad because Logan and Grandma will be leaving on Tuesday.  Layton is going to be heartbroken; I already am.  It has been so nice having them here. Too bad I have been a bit on the cranky side - calm down, be quiet, no wrestling.......nag nag nag.  Of course it is hard for Logan to understand Layton's limits.  The boys have had such a good time together.

Layton was so happy to see Logan when he woke up from nap.  This was the best birthday present of all!

Hello everyone.  Sorry that it has been a few days since our last update.

Logan and Grandma Mason arrived Tuesday afternoon.  Layton was very very happy to see his brother. 

Logan, Dad and Grandma and Grandpa Schmitz spent Wednesday in San Francisco.  They went to Fisherman's Wharf and Pier 39 where Logan had a blast watching the sea lions and a street performer dressed as Captain Jack Sparrow.  Logan also had a blast at the Aquarium on the Bay where they walked and rode on a moving floor through a big plastic tube under the water.  He got to see all kinds of fish and sharks swimming all around and even right over his head!  Back up top, Logan got to 'pet' a Bat Ray, a small Leopard shark, and all kinds of starfish - COOL!  Layton stayed back with Grandma Mason and I at the Ronald McDonald House.  It is still too early for Layton to be around that many people.

Yesterday we drove to Half Moon Bay, a town on the coast.  We were looking for surfers, but the weather was a bit on the cool and cloudy side so we struck out, but Logan was able to take a short walk on the beach with me and have the thrill of getting splashed with ocean water.  We then ate at a restaurant overlooking the ocean which was really fun.

Today I had Layton at the hospital for lab work at 7:45 am and now I am just getting ready to go do laundry.  Hopefully, his labs are good today so MAYBE he can have an entire weekend off of labs!!  We would like to drive into San Francisco and over the Golden Gate bridge before Logan leaves for Minnesota on Tuesday.

Thanks again to everyone.  Many thanks for all the cards and mail!!  WE LOVE MAIL!!

Leah 

**IMPORTANT NOTE:  COULD ALL OF YOU WHO HAD MY EXCITE EMAIL ADDRESS FORWARD ME AN EMAIL TO:  leah.schmitz@yahoo.com so I can add your address to my new Yahoo address book.  For some reason my excite email will not let me in and I have no way to access all of your addresses.  Thanks so much.