Sam's donut

On the way home from work Friday I picked up a huge Bowman's Donut and Sam loved it!  He could only eat 1/4 of it and then shared with his brothers.  What a good boy.  Life is good!

Cathi also ran a good marathon on Saturday.  She ran Provo Marathon and ran it in 4:02!  She was very pleased and I love it when she gets close to 4 hours.  Truly an athletic woman!

On Sunday Sam bore his testimony in Sacrament Meeting.  He's so brave.  He's naturally shy like me, so things like that are hard, but I was right there to give him a little help and encouragement.

Work is going really good too.  I'm really busy and working on stuff that I feel very invested in and interested in.  So right now, life is going really well.

Sam is 100%

This week Sam went back to school.  Cathi took him to the front of the class and explained a little about where Sam has been and explained that while Sam still has red eyes, Stephens Johnson Syndrome is never contagious and they can't get sick at all by being near him.

The kids have been very kind to him and he has had a wonderful week back to normal life!  On Wednesday Grandma and Grandpa Low took us all to Golden Corral and it was such a joy to see Sam eating to his delight!  He has had such fun playing games and watching videos on his new laptop.  But
most of all, he has really enjoyed being back home with his brothers.

We are so grateful that he's in our family.   This experience has drawn us closer as a a family and made us more thoughtful about how each member is such a vital part of the family.

Feeding tube is gone

Yesterday Sam ate a hot dog and some fries and is drinking water as well.  He's doing so much better.  His feeding tube was clogged up and so we figured instead of trying to unclog it, we might as well just pull it out since he's doing a bunch of eating on his own.

Sam got several visits from Aunt Diane.  She watched him today
while we all went to church.  He loves it when she comes!
We found him sacked out when we got home.  

Except for a couple small scabs on his lips, and his "Darth Maul" eyes, he's back to his whole self.  He has a Dr. Appointment tomorrow morning and I'm expecting that everything should be OK for him to go back to school this week.  We just love having him smile and laugh like the good old days.  Things like this really make you count your blessings.

Also, I feel so blessed that our prayers are answered and he's back to normal.  Something like that sure makes you realize how lucky we are to have healthy kids!  There were alot of sick kids at Primary Childrens that had it rougher than Sam.  Made me sad to hear the occasional cry or moaning in the middle of the night even when it wasn't my own.  We should keep those prayers going for those kids too.

Sam, you lucky!

Sam was all smiles when I got home.

This morning my company's COO, Jaye Olafson, handed me a laptop that was being phased out and said, "For Sam, with love". I knew that Sam would just light up like a light when he knew he was getting this new laptop.  A few minutes afterwards I had tears come thinking about what a sweet and generous gift this was for my sick boy.
When I got home, I set it up so that he could watch any of our movies, via the external hard drives, using the new laptop.

I haven't seen Sam smile this much in two weeks.  It really made my chest burst with happiness to see.

As you can see his eyes are actually white on the inside, but still red on the outside.  The eye drops are working!  His lips are healing well too.  He still has major scabs, and lots of bleeding, but they are improving!

Cathi was working with him on his letters, and Sam is excited to go back to school.  Perhaps next Monday?

He's home

Earlier this year, Cathi registered for most of the marathons that she planned for this year.  One of them was the Salt Lake City Marathon.  Which went on yesterday.  Given Sam's steady progress and that he was just fine in my care, I asked her to continue with her run.  She got at 6am and walked to the starting line which was at the Legacy Bridge at the University of Utah.  A distance of only about 1/4 mile from Primary Children's hospital.  There will never be a more convenient marathon morning as this one was.

Sam slept for a couple more hours and we looked outside and saw that the sun was out and no clouds in the sky.  It was a beautiful day.  I asked him if he wanted to go on a ride.  He did, so we got a wheelchair and I took him on a little walk outside in the sunshine on the hospital grounds.  This was just the exposure he needed.

When we got back Dr Antommaria arrived in our room shortly after.  He determined that if we wanted to go home, we could.  Sam nodded "Yes" when asked if he wanted to go home.  We got all our discharge instructions and got our stuff put together and walked to the car.

We picked Cathi up near the finish line, and took her back to the hospital to get her car.  Sam and I drove home and got there just in time to meet the delivery guy for all the home health supplies.  Sam's feeding tube needs to run overnight every night for a couple weeks.  His mouth and throat are still too sore to swallow the amount of food that he needs to properly sustain himself.

Sam missed his family.  I've not seen him smile this much
all week.

We got him setup in the living room and I showed Lucy and Jacob how to help him apply lotion to his sores and how to administer eye drops to allow his very red eyes to heal properly and not scar.  Sam had done a lot of walking today and was tired so he took a nap.  I went out to get all of his prescription meds and when I got back I saw that he was having a nurf sword fight with his other brothers and was smiling.  I even saw him petting Max and Girlfriend yesterday evening.  It was so good to be home!

At 8 o'clock I was going to get a little work done to try and catch up a little, but I was nodding off.  I was SO tired, and just went to bed early.

Sam's journey with SJS isn't over.  We're told to expect that it will be about another 2 weeks before he's back to normal.  But at least he's home and will be able to more comfortable.

Touchdown!

This morning when I broke the news to the Doctors that he was unable to hit his goal, they said that they admired Sam's valiant efforts to get his nutrition on his own, but that we would have to try again to get a feeding tube placed.  He cried and moaned at the idea.  I sent them out and we had another chat.  It broke my heart thinking about another lengthy struggle to get the tube to place properly.

Team Gridley makes a come back!

Cathi joined us just before the nurse came in to get the tube in.  She was able to get it in place within about 1 minute!  I was so relieved!  After that Sam took a long nap and she showed Cathi and I how to "flush" the tube, and how to apply medicine through the tube.

Everything was going so well I decided to go to work at noon and work the rest of the afternoon.

When I got back Sam and Mom were chillin on the bed.  Sam had a very pleased look on his face.  No medicine or milkshakes to worry about.

Cathi and Sam relaxing in front of a movie.

We're all very excited to go home!

Tomorrow morning Cathi will get up bright and early and run the SLC Marathon, while I get us checked out of here.

Today I confirmed that the Maximum Out Of Pocket that our insurance allows is $5,000 yr.  Anything above that and they cover all costs.  Fortunately for us I have been putting more than enough into our HSA, and this 6 day stay at Primary Childrens hospital won't bankrupt us.

The stay here at Primary Children's has been top notch care.  The Doctors and nurses have been very good with us.

We feel so very blessed to have Sam recover enough to go home!  He'll still be doing a lot of resting at home and some home schooling, but over the next few weeks he should be able to return to normal life.

Milkshakes

Sam has alot of get well cards taped up on the wall!  

When you have a sore mouth and don't feel like eating, they really encourage you to eat.  Anything.  Even if the only thing that doesn't hurt going down is a milkshake.  So today's goal was to drink three rather large milkshakes.  It was taking forever with a straw, so I finally found that if we got it really frozen good, I could use a spoon and get Sam to get more into his mouth, and it goes faster a little faster.

Sam is continuing to progress.  His eyes are still red, but his vision is still good and unaffected.  When he isn't eating and watching a movie, he's sleeping.  His fever has a tendency to come back, so he must have regular schedule of Children's Tylenol to keep it under control.

Tonight I noticed that he's starting to get a little dirty, so I asked him about taking a bath and he was up for it.  He really enjoyed the break from sitting in the bed and getting his sores immersed in clean warm water.  He loved it.  Afterwards he went right to his bed and fell immediately asleep.  Feels so good to be fresh!

The Doctors have said that if he continues to progress as well in the next 24 hours as he has in the past couple of days, that he should be able to go home tomorrow.  Granted he won't be playing and still a very sick little boy, but he'll be able to be monitored and recover at home without being at one of the most specialized hospitals in the Inter-mountain West.

The pediatrician reassured us that the cause of the SJS was his reaction to the Walking Pnemonia..  Cathi asked whether he could get it again and he reassured us, that while it is possible, that in the years of experience he has had with patients with Stephens Johnson Syndrome, that NONE of them had a reoccurence.  He said that it didn't mean it couldn't happen, but that the likelihood was even more remote than getting it the first time.  Also, we know what symptoms to look for with SJS, so it wouldn't take so long to get the proper treatment should something like this happen again, however remote.

Sam watching Home Alone with Cathi.  She nodded off for
a nap.  

This afternoon we watched one of Sam's favorite movies.  It melted my heart to watch same smile and laugh when it got to his favorite part in the movie.  The bad guys are in the house and one of them has a tarantula on his face and he screams like a girl.  Then it walks across his chest and his partner tries to kill it with a crowbar and misses and ends up pounding his partner in crime in the chest.  Same laughed aloud and it was so fun to see!  Cathi came in about 1pm and enjoyed just cuddling with him in the bed while I spoon fed him his milkshake which was done one a very frequent schedule.

Today's visitors included: Grandpa and Grandma Low, Eric and my Dad.