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.

Major steps in the right direction

Last night Sam slept fairly well.  The nurse was kind enough to keep many of the waking events combined instead of in many separate instances throughout the night.  Some progress is that this morning Sam's lips looked much better.  However he still was having a hard time not screaming while he pees.  The nurses suggested adding Morphine on top of his Oxycodene meds to help with the pain.  I suggested that instead, we simply schedule him to urinate about an hour after each Oxycodene administration.

That seemed to work better and in fact, this evening, the pain has practically disappeared in that area.   He just stands there while I hold this little container for him to pee into (which the staff want him to use so they can know exactly how much he is peeing).  He just continues to watch his movie and doesn't even whine.  I've never been so glad to hold a pee bucket for someone.

This morning the attending Dr suggested we consider trying the feeding tube again, even after yesterday's ordeal with it.  I informed the Dr about my little agreement with Sam and he said, "How many of these chocolate milks do you think he will need to satisfy his daily requirement?"  I did a quick calculation in my head and I knew he had me on this.  I blurted out "Six".  He looked at me with a smirk and said,  "Wow, you're right."  That does sound like a huge mountain to climb considering he hadn't even had a single carton in a full day, and we had to go through six?!  Here's the nutrition label for just one individual serving carton.

This morning we really tried to get a headstart on this goal and when I left at 11:30 he had gone through 1 and was 1/4 into another.  I told Cathi of the goal and challenged her to really try to hit at least 5 and then we could argue our case with the Dr.  After spending nearly 6 hours at work I called and he had only finished another one.  So we were at about 2 1/2 milks at that point.

I convinced Cathi to let me take the night shift tonight.  So I was on a mission with Sam,  Two full chocolate milks, hopefully more.  We watched Bugs Life and "Turner and Hooch", which he loved.  Who doesn't love big dogs.

Sam is now feeling much better.  Less in pain,
and much more responsive.  Still far from
being completely normal.  He's still got
a long way to go. 

Throughout the evening we worked on sips of chocolate milk and after a little whining here and there, we rediscussed the options and explained the whole feeding tube in detail with him, encouraging him to take that route, because it really would be easier.  But after yesterday's traumatic incident, he wouldn't even reconsider.  Even though he was so sick of that stuff, he said he wanted more.  Right now we're done for the night and he's finally asleep after having fully completed 4 cartons.  Short of the goal of 6, but a major step in the right direction anyway.  I'm gonna definitely try to defend little Sam's case for not having another nurse attempt to stick that thing up his nose and down his throat only to have it tickle his throat and never successfully make that trip into his stomach.  If I could be guaranteed that the procedure would be successful and that it would take less than 5 minutes.  I'd say let's go for it, but they can't guarantee it.  So as long as Sam shows the determination to really try and make such big improvements in his caloric intake,  I say, let's give the boy a say!

Some of Sam's visitors today included:  Grandma and Grandpa Low, Grandma Gridley and Russ, Kris, Lindsey, Summer and Ryan Sampson, Sister Woodrow (his Primary President), and neighbors Erika and Wyatt Dangel. Not sure who else might have come during the day when I was at work.  Lots of supportive phone calls and kind acts for the kids at home.

Everyone has been so wonderful asking for what they can do to help and stepping up to transport and watch after the other Gridley kids and providing meals.  Sure is nice to have such wonderful family and friends!

I'm so thankful for all the prayers for our Sam.  I'm sure they are a major reason for why it was such a great day today and why he was able to make sure fantastic progress!  Thank you!

Update on Sam - He's cracking me up!

Today has been quite a struggle for Sam and I.  But this post has a happy ending, so bear with me.

Sam has had to endure many visits from Dr's and Nurses that have been making him drink yucky medicine and putting sometimes stinging drops in his eyes.  But the one that topped it off was today I had to hold him on my lap while the nurses and techs worked on getting a feeding tube inside his nose and down into his stomach.  The problem is that Sam would not condone that.  While we could hold him down, we could NOT make him swallow which is one of the simple little actions that allow the nurse to continue pushing the feeding tube down the right tunnel.  He wouldn't drink anything which would include swallowing.  We tried the other nose. and after about 15-20 minutes of this battle with this kid, we gave up.  Afterwards, he slept like a baby, he was completely exhausted.  (So was I)

We moved him away from Morphine and he is now on a scheduled dosage of Oxycodone taken orally.  He hates the taste of it.  He also has extreme pain when urinating.  He has slept all day and now at 10:30pm is awake and alert and watching Stuart Little.  He went to the bathroom about 30 minutes ago and I was pleased with the perceived reduced pain level by correlating pain with decibel level of his screams.

Tonight we watched the ending of Toy Story 3, and he cracked me up a couple times.  He said "Immodest!"  I was facing away from the TV and was tickling his leg which he loves.  At first I didn't understand what he said, nor why.  I said "Immodest?"  He responded, "Yeah, the barbie was wearing some sexy thing".  She was wearing a bikini getting some sun.  At least the kid has some morals huh?  

Another moment of laughing, was after his most recent dose of Oxycodone, he cried out "Drink! Chocolate Milk!".  So I gave him some and he took a couple swallows of it.  I asked him to have more and he shook his index finger side to side and said, 'Not too much Dad'.  I had a heart to heart with him about all the visitors that keep visiting him (even though he's normally so incoherent when they get here), and how he can show love back to them by doing his part to get strong again.  And that meant he had to get some chocolate milk or something in his stomach.  He agreed that he needed to show his thanks by accepting drinks more bravely even though they may not feel good going in his very sore mouth.  He took several swallows of that chocolate milk people!  And he did it for you!

Here is his little sign saying I Love you!  Tonight before deciding to watch Stuart Little we did some channel surfing where he was in complete control by voice activate me switching to the next channel by him saying "uh-huh" or "uh-uh"  After doing the complete round of channels (10 of which were baseball), he decided to just rewatch Stuart Little.

His visitors of the day included: Grandpa Low, Grandma Gridley and Aunt Elayna, and Aunt Michele.  He was practically unconscious for most of it, so sorry folks if he isn't the most responsive patient to visit.  He'll be a much better boy to visit after a couple of days and the pain is less severe.

He's getting spoiled rotten by everyone who visits him, from hospital staff and family who come by.  Let's just say he won't have a short supply of toys or things to play with for quite some time.  He sure is a loved little kid.

Sam's scary case of Steven Johnson's Syndrome

I'm adding Sam's story here so our family is aware of what has gone on this past week, and also that we can look back and remember this moment and reflect on the miracles Heavenly Father gives us!

Some background:

On Tuesday Sam started to have a little fever, but he wasn't about to let that slow him down.  He often kept playing and was able to get around, and didn't complain much.  But late Friday evening his fever had continued even more (102.7°F), and Saturday morning was really achy and crying that his eyes and head hurt.  I immediately thought the worst.  And remembered sad stories of parents who lost their children within a week to Meningitis, I thought I better get him in quick as he showed many of the same symptoms (minus the vomiting).

I took him in on Saturday morning to see the Dr.  They took a flu culture which came back negative and decided that whatever he had, would be best treated with Amoxycilin, an antibiotic.

I gave him a dose of that on Saturday afternoon.  By very early Sunday morning I got up and noticed that he had very large lesions on his lips and on his gums.  He also at this point started vomiting.  That freaked me out and I took him to the 24 hr pediatric center.  They took a Strep culture which also came back negative.  The Dr. listened to him breath and said he could have pnemonia, either that or a severe case of oral herpes(cold sores).  He gave me a couple of additional prescriptions of antibiotics to replace the Amoxycilin.

This morning Cathi called me at work and said that his condition has worsened even more and that he was  unresponsive and fought her terribly when offered medicine.  She again took him to the Dr this morning and after a group of them at the clinic discussed what their ideas were, they mentioned "Steven Johnson's Syndrome" and that we should take him to the Primary Children's Medical center immediately.  They called ahead for us and they immediately accepted him.

They put him on oxygen to help him breath and gave him some pain reliever to bring his fever down.  (Which at this time is normal). After several Dr's observed him the agreed that he has Steven Johnson's Syndrome(SJS).  Which they believe was caused by a severe reaction to his initial sickness of a Mycoplasma infection (walking pnemonia).  They don't believe it was necessarily a reaction to the Amoxycilin mainly because the reaction to an antibiotic reportedly takes several days to a week, whereas the dramatic sores in Sam's case appeared less than 12 hours afterwards.  Either way, the Dr's are putting him on Intravenous immunoglobulin (IVIG) which is the current treamtent for SJS, as well as other prescriptions to battle the original problem of the mycoplasma infection which is really affecting his mucous membranes and clogging up his lungs.

Sam getting some Oxygen to help him breathe.
His poor lips and eyes must really hurt.
What a tough kid!

 His poor eyes and lips have taken a beating.  He is unable to talk or eat.  He is being fed through a feeding tube because his throat and mouth hurt so much.  His main trouble is with his eyes, inside and around his lips, and lungs.  When I left the hospital the optomologist really helped by giving him some drops to relieve the pain and swelling.  He appears to be in much less pain and discomfort than he was going through earlier.  He was able to rest, and later open his eyes to watch a movie. The team of Drs mentioned that he would need to stay in the hospital for observation and IVIG treatments at the least until Thursday or Friday, possibly longer, so he has a little road ahead of him.

Don't worry:  While SJS is relatively rare, the folks at Primary Childrens mentioned that they have seen it more often.  Cathi told me the Dr's told her that the two different causes of SJS (viral and drug induced) are both dramatically different from each other and that the viral caused version is much less dramatic (which if you google SJS, the pictures can give you nightmares.  The sores on his body (other than on his lips and eyes, are random lesions that cover less than 1% of his body.  SJS is not contagious and nobody else in our family has any signs of any kind of illness.

 Dad and I gave him a Priesthood blessing this evening.  If you could also keep him in your prayers.  This sweet little boy could use them.

Oh, and Happy Birthday Austin, sorry your birthday kinda took the limelight this year.