Our New Diet Journey

[Suzysu]

Glad they are starting to get things sorted, glad the CT was ok. Hopefully he will soon be feeling a little better and hopefully you will not be 'confined to barraks' for too long. send you warm wishes and get well hugs xxxx

 

[Sascot]

Wow, stuck in a room! However with all those electronic gadgets, he must be happy enough. Glad to hear the CT scan was ok, doesn't answer any questions but at least one less worry. I know what you mean about the doc not liking all the questions - I can almost feel mine rolling their eyes when I start :yrolleyes:.
Good luck with the methotrexate injections - after a couple weeks it will feel like part of your routine I'm sure! The EN is hard to do, but if you could have a word with the doc and ask him to tell Ryan that he has to do it then maybe it will go down better. We were never given a choice - Andrew had to have the EN once diagnosed. He just went along with it because he knew he "had" to do it.

 

[Farmwife]

Thinking of you guy.
In my thoughts and prayers.
Farmwife

 

[DustyKat]

Thanks for the update jm!

Good to hear that the CT was normal.

I hope the C Diff is negative and you can soon break out!

Aren't hospitals wonderful places to get rest...not!

Good luck hun and no fights over the electronics! :nonono:

Dusty. :heart:

 

[Jmrogers4]

Glad CT was normal, if he is any thing like my son he will be glad of all the time to play whatever, he wants but hope you get sprung from the room before he gets bored with them. It's the end of the world when they can't play their video games but if they get to stuck only being able to play video games they want to do something else :lol:
Fingers and toes crossed everything gets figured out soon

 

[jmckinley]

Hey! The good news is Ryan is feeling much better. He's got some color to his cheeks and cracking jokes. :dance: He's not even complaining about the EN. He is still confined to the room! Apparently they don't do c dif tests on the weekend. So we're stuck until results come back tomorrow.

jmr-

You are exactly right! At home, Ryan would play forever and I would have to threaten something to get him off. Now, he is going nuts to get out and picking on everybody....imagine being stuck in a room with Jim Carey!

I hope everyone is doing well! Thanks for checking in on us.

 

[Farmwife]

I'm glad Ryan is doing better.
I hope to hear your home soon and he can pick on other peolpe.

Farmwife

 

[izzi'smom]

we were on precautions waiting for c diff multiple times...now if I think admission is an option, I ask them to test her beforehand. Hope things are going well for you today

 

[jmckinley]

:emot-dance: WE ARE GOING HOME! :emot-dance:

R is doing much better. With IV steroids, Sed is already in low 20's (was 34) and CRP back down to 3 (it was 16). He just simply wasn't absorbing meds orally. We did the first metho injection yesterday. No nausea, slept alot, but that could be from lack of sleep the night before.

I have learned something very interesting...R is lactose intolerant. I think the oral methotrexate rash and nausea were from the pill fillers. Lactose is often used as a filler.

We will bump the remicade up in strength and move it to 6 weeks. Also go home on flagyl, prednisone, prilosec, and inj metho. Oh and EN until they read the pillcam results. Whew!

But the big thing is the pink cheeks and big smile on his face right now! Gotta go pack. Thanks y'all for all the support and concern! You are awesome! Talk soon!:ghug:

 

[Sascot]

Woohoo, glad you're getting out of there! :biggrin:. Glad Ryan's feeling better, hope the Methotrexate and increase in Remi do the trick and he keeps getting better!!

 

[AZMOM]

Hurrah! There's no Place like home.

J.

 

[Suzysu]

:dance::dance::dance::dance:
So glad you are going home and he is starting to feel better - WONDERFUL news!!:ghug:

 

[DustyKat]

Woohoo! Thanks for the fab update jm!

It is so fab to hear that Ryan is doing so much better! And nothing quite beats that feeling of seeing an ear splitting grin on your kiddos face AND knowing that you are breaking out! :lol:

Onwards and Upwards!
Dusty. xxx

 

[jmckinley]

A little bad news today, but I'm not gonna let it rain on our parade because Ryan is feeling good. HACA results came back and Ryan is already building up an immunity to Remicade after 4 doses! So looks like we may not be on it for too long. Still plan to increase it in dose and frequency and try to use the methotrexate to curb the immunity.

Might be a short train we are riding.....

 

[DustyKat]

Oh man jm, I am so sorry to hear this.

Sending loads and loads of luck your way that the Metho weaves its magic...:goodluck:

Dusty. :hug:

 

[Suzysu]

oh no - I hope the methotrexate works its magic - glad that Ryan is still feeling ok though. - sending big hugs xxxx

 

[Tesscorm]

Glad Ryans feeling well, hopefully the metho will work out the problem! :ghug:

 

[crohnsinct]

Oh no! I am soooo hoping that the Methotrexate works. I know what you went through to get to acceptance of these drugs and it would just stink to have to find another...Glad R is feeling well though and hoping it all works itself out quickly so he doesn't experience a set back :ghug:

 

[my little penguin]

:hug: SO sorry to hear about the immunities.

Glad you are on the MTX injections- maybe they will do the trick.