Step-Son having surgery

[fiddlegrin]

SW_____EEEEETTTTTTTTT!!!!!

Thanks for the update!

[cp478]

just now read through this entire thread and my thoughts and prayers are with you and your family. way to go simon, the tuffest little dude ive heard of!

[GlockG23]

I want to thank you Frank.
For taking the extremely large amount of your
time to type out all of the updates to keep us informed.

Your BOTL's from Puff.com are here for you, In thoughts and prayers!

[tx_tuff]

Our first night back in the EMU last night was a little rough, but not too bad. Simon’s fever went up to 101.0, so his nurse, Mary, called Dr. B. He said to give Tylenol and also asked for blood and urine cultures to check for infection. Because you can’t draw a culture from the IV, she called down a mobile nurse from PICU who got the stick and the blood in seconds. Maybe that’s the secret! It took a little bit longer for us to get the urine sample, but we did. Simon’s earlier blood came back at 11pm with a sodium level of 133 (135-145 is normal). So the IV was increased this time, with orders for no food or drink, and to check again in 6 hours. The blood the mobile nurse took was used for culture and also to get sodium level, which came back at 134. At 430 am, his temp had dropped to 100.0.
Simon actually woke up this morning and stayed awake to watch some Ben 10 and Batman on Cartoon Network. His right eye was still swollen shut, but by bedtime, he could see out of it a little. His science teacher, Mr. Martinez stopped by, which put a big smile on Simon’s face. His fever finally broke and his sodium came up. He got his appetite back, too. Things really seemed to turn around today.
PT came by and Simon not only got out of bed, but walked out into the hallway outside his room! After that, Sara removed his turban and wrap, and we could see his new, new scars. Dr. B. pretty much went back into the same incision he used on Simon’s surgeries in March. His scars look scary to us, but the nurses are once again in awe of Dr. B., claiming the incision sites are works of art.
Dr. V. came by to check on her favorite patient. She was happy to see him using both sides, and that his fever had gone down. He refused to talk to her, but she seemed to take that in stride. Comes with the job, I guess. Simon also did his breathing exercises, exceeding the volume the therapist set. He went beyond the 500 mL the therapist wanted him to strive for, and pushed himself to almost 1000 mL!
Before dinner, Simon got in the chair and played on the computer. Then he went for a walk all the way around the nurse’s station and into the playroom where he picked up, you guessed it. Battleship, of course. Earlier he had trouble placing his left foot and sort of dragged it and stepped on it tippy-toed. But when he walked this evening, Frank showed him how to step down on it again, and it worked. He is pretty steady on his feet, but he is adamant about being able to do it on his own, and he would go really fast to get away from us so we didn’t help hold onto him. He is so stubborn! But whatever works to get him moving!!!
Also . . . .STILL NO SEIZURES!!!!!!!!!!!
As far as we know, we are still on track to get out of here Monday or Tuesday. I am tired of this place, so I can’t even begin to imagine how much Simon is ready to get home! It’s not a bad place to be, but there’s no place like home. The nurses and staff here are completely amazing, and I don’t want to even think about how different things would be for Simon if we didn’t live in Houston, or weren’t fortunate enough to get this team on our side. And each and every one of you are members of Team Simon, and have helped him succeed this far. I can’t thank you all enough!

[Sweet_Cigars]

Wow Frank, I'm sitting here hanging with the wife smoking a 5 Vegas 'A' and we are constantly thinking about you and Simon. We had just finished talking about Simon so I decided to check to see if you posted us a update. And here it is.

This post Frank was so hard for the wife and I to get through. We stop have way do to tearing up and talked about finishing it tomorrow. The first thing that came to my mind was the "Simon" wouldn't give up. Dude do you understand what this means. Simon is a damn roll model to me. I get so weak sometimes and its easier in the short term to just give up, but not Simon.

I feel so much better that he is able to walk around and if I was going through that I wouldn't wanna talk to those damn nurse either. Thanks so much Frank for keeping us up to date. My family and I plus the awesome members of Puff and thier families are all pulling for Simon.

[Cypress]

This is amazing Frank. I am glad we are one step closer to defeating this. We are planning on stopping by this after noon between 5-6. See you then.

[fiddlegrin]

Wow!...... that Simon!

Real life, blood and guts HEROICS!

Life demands that we have a strong will to make it... and MAN does he ever!

Gotta go send him an email!

Oh and thank you Frank!

.
.

[ashmaster]

Frank...this is absolutely wonderful news. This has been so much for a person of any age to endure let alone an 8 year old. I am amazed with Simon's strength and courage. I'm sure you and your wife have a little something to do with that.

Next time you see Simon please give him a "high five" for me and my best wishes. Continued prayers to you and the family, gotta bring this one home!!

[andrew s]

Good to hear he is recovering well. It is always nice to hear good news. Your son seems so strong.

[havanajohn]

Frank, it is reassuring to see no seizeures so far. Thanks for taking the time to update all of us. My family's thoughts and prayers are with you and your family. May God fill you with the Holy Spirit, and guide the doctors/nurses decisions.

[tx_tuff]

Simon got up and moving pretty early today. He started the day out by having a nice big piece of chocolate cake for breakfast. Then we went for a walk out to the elevators. Aunt Vanessa and Max came by and we all took turns playing Connect Four and Guess Who. THEN, we all four walked down to the hospital gift shop! Simon is so adamant about not having any help walking. And really he doesn’t need it. He is very stable on his feet. He began to tire out on our way back up, but he hung in there!
 
He didn’t have much of an appetite all day. Frank got here just after lunch and we walked to the elevators again. After that, Simon napped for a little while, then was back up. He played Play Station for a while, but spent a lot of time on the computer. He also devoted some time to Legos. The boy loves his Legos.
 
Later in the afternoon, he got visits from our friends Bo, Sam & Martha and Aaron, and Allen & Kay. They, along with several of our Puff friends, all chipped in and gave Simon a Wii, complete with a ton of accessories AND Lego Star Wars and Indiana Jones games! Even Wii Sports! After his last surgeries in March, Simon’s pediatrician said he needed a Wii to help with his PT. So here we go! Simon will be even better than he was before! He is so excited to get home and start his PT …. I mean, start PLAYING.
 
He and Robert walked to the elevators again before dinner, even practiced walking on the fake stairs they have set up out there. He challenged Robert to a race to the elevators, but Robert said no. Afterwards, Simon ate some vanilla Blue Bell ice-cream in the playroom.
 
And finally . . . . .STILL NO SEIZURES!!!!!!!!!!! But now some news that’s almost just as good: we should be going home tomorrow!!!!!!!!! We just have to wait for the Speech Therapist to come by and check Simon out. PT will also come by, but Simon has already proved himself with her. OT might stop by, but I will pull out the Legos so he can scratch her off the list, too. Respiratory came by to check his pulse/ox-- it was at 99%. He hasn’t had fever today, hasn’t complained about his head hurting in days. This little boy is one tough little man!
 
So once Speech Therapy clears him, we will just wait for Dr. V. to stop by to officially kick us out. For real this time. We are so excited to finally be going home! Thanks to all of you for helping us get through this crazy time in Simon’s life. I don’t know how we would have gotten through it without all of you cheering him on and praying for him! Even if HE didn’t need it (he‘s been so brave through it all), I sure did! He is sleeping peacefully now, but nothing like he will be once he gets home in his own Spongebob bed with his crazy cat and dog jumping and licking all over him!

[tattoofreak]

I'm glad to here he's doing good he is a very strong kid. Thanks for the great updates.

[themoneycollector]

Continued prayers sent for Simon and you guys.

[David M]

You must be so darn excited Frank, your probably not able to sit.
My fingers are crossed so hard for you guys, they are about to break.

I hope you guys are done with the place tomorrow and your able to get on home where Simon can start the process of getting back to normal in those surroundings. You guys too. Coming home is gonna be an extra special moment for all of you.

At this point, I as well as surely a few others, feel pretty connected to you and Simon. If you get a chance, in the next couple of weeks, after Simon is back to 110%, if you could post a picture of the guy I am sure it would be appreciated.
May not be a good idea though because of some unpleasant online people so its your call.

Good Luck Frank.
Hope you guys are having dinner at home by the end of the day.

I'll send Simon what will hopefully be my last hospital eCard.

[havanajohn]

No seizeures, yes! This is the news we are all waiting to hear. Simon, you are one tough little guy... keep fighting.