prayers for my son

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  • tashjs21
    tashjs21 Posts: 4,584 Member
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    :heart: Prayers from Texas :heart:
  • LML79
    LML79 Posts: 697
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    Praying here. I love kids so this stories always gets my attention.

    BTW my Bro-in-law has Chrons. He has had six inches of his lower intestine removed. The man can clear a room out in one fart.

    LOL how funny!! I needed to laugh..thanks!! And thanks everyone for all the prayers..sorry a little sleep deprived but will update soon..hopefully will be home soon too thanks again!
  • FitJoani
    FitJoani Posts: 2,173 Member
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    Aww, Les, I'll definately remember him. Please let us know if you need anything.

    -J:heart:
    I agree we are with you now.....
  • LML79
    LML79 Posts: 697
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    Here's my update now that I have a few minutes to myself. We're still at the Hospital but hoping to go home tomorow. That would be nice! Hubby is home with my daughter for the night and here I am... sitting on my fold out chair...um...bed.... eating lovely hospital food. Tried to write down everything and log on but with this food I ended up going over almost every day... so I bet weight gain is inevitable. Can't wait to go home and get back on track.. my treadmill is collecting dust!

    Brandon is doing really well... he is actually loving it here..what kid wouldnt.... plenty of food, attention, video games, toys..you name it.. He said it's like going on vacation LOLOL!!! ( this is one vacation I hope to never go on again!)

    We were supposed to go home today but last night he had a rough night and his Chrohn's disease flare up is a bad one. Because it is our first real flare up it has been hard to figure out what meds to be on.,.so it is kind of trial and error right now. They said next time will be easier because they will know what works for him. We have had some really nice doctors..but all the unfamiliar faces coming in and out at all hours gets old quick.

    Today he had to have an MRE (?) done..it was like an MRI and Barrium Swallow combined. And then he had to go through some scary looking tube and be real still for 45 minutes..at some times they told him to hold his breath for 20 seconds so they could take pictures.. well let me tell you he did better then I ever could!! Kids are like that though huh! The X rays came back telling us pretty much everything we already knew....all this pain is caused by the Chrohn's flare up . ( they wanted to make sure something else wasnt wrong on top of it all)

    They also took blood to test to see if he could take some kind of 6mp medicine or something? I don't know...dr talk is like someone talking to me in a different language sometimes..mumble jumble LOL.. But because he has been on the Prednisone since Monday and still has a high sed rate ( Inflammation shown through a blood test) they are thinking it's not working.. And I will be very happy if they take him off because the side effects are starting to show..( Mood swings, puffy face,and other stuff) So it would be nice if there was something else he could take when he does get sick.

    Another strange thing ( not to get into too much detail here) is usually with Chrohn's people get frequent and loose stools..but for some very weird reason Brandon is the opposite..only going on an average of once every few days.... so that is another reason why we didn't go home..because he hasn't gone since Friday...and this is even with frequent doses of Miralax ( A stool softener).. So they can't seem to explain that part..but eventually this kid is gonna have to go...sooner or later! And I think that was part of the reason for us spending yet another night.

    But..... still hoping we can go home tomorrow. I do have to say you guys are all great! All the prayers and well wishes really helped a lot!! Thank you so much ! You guys are awesome :) !!

    Soooo..that's where we are at right now... hoping to be home tomorrow..
  • timisw
    timisw Posts: 391 Member
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    Wow... My best to you, your family and most important, your son! ~shrew~ If you need me to look up anything on line to put it into more laymen's terms.. .let me know!
  • LML79
    LML79 Posts: 697
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    haha..Thanks! When they admit you they should hand you a big dictionary so you can look up all the weird terms they use .. who knew I'd know what Sed Rate, IBD,5-ASA,and SBFT meant!! Talk about a Crash course in GI :huh:
  • timisw
    timisw Posts: 391 Member
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    haha..Thanks! When they admit you they should hand you a big dictionary so you can look up all the weird terms they use .. who knew I'd know what Sed Rate, IBD,5-ASA,and SBFT meant!! Talk about a Crash course in GI :huh:

    ~sigh~ Just hate that you have to learn all that! Being a arm chair "doctor" is never a fun thing. You only learn the terms of the moment. What do they predict/think will happen next for him?
  • LML79
    LML79 Posts: 697
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    haha..Thanks! When they admit you they should hand you a big dictionary so you can look up all the weird terms they use .. who knew I'd know what Sed Rate, IBD,5-ASA,and SBFT meant!! Talk about a Crash course in GI :huh:

    ~sigh~ Just hate that you have to learn all that! Being a arm chair "doctor" is never a fun thing. You only learn the terms of the moment. What do they predict/think will happen next for him?

    Oh yes speaking of arm chair.... this "Chair" for a bed is just amazingly comfortable...about as nice as a pile of wood haha!!

    I guess I am not really sure what will happen next..it is still really new to me.. I can't believe two months ago I didn't really even know what Chrohn's was. The GI dr said once we do figure out what med will help his SED rate go down and he is in remission..they will talk about a medicine to take daily to maintain the disease. He is still on the Pentasa but unfortunately ( and not sure if it was just coincidence or what not) but it was the day after taking the 6 pills that he started getting sick. I think it was building up to a flare up for awhile though.. first daily tummy aches.... then hourly..and now they come and go in spurts throughout the day. I really do hope they can get him off the prednisone soon..especially since he still has a lot of growing to do.

    But one thing I have learned from being here..is that Chrohn's disease ..even though it can't be cured...can be treated and maintained. We have walked these halls of the Children's Hospital a lot these past few days..and have seen little babies with tubes everywhere..to kids my sons age with Cancer and in wheel chairs....to a mom bringing a birthday cake up to her child..who celebrated their birthday in a hospital bed. It really does put some perspective on everything. This is something small compared to what other parents go through. Today we were sharing a room with a 14 month old baby who had seizures frequently.. and the mother was so calm and knew exactly what to do and how to use the feeding tubes and everything..you could tell this has been her life for months. I would have been a wreck! So really..even though Brandon's condition seems like a big deal to my family...looking around I see there are worse things.. chrohn's disease doesn't seem so bad or scary to us any more..and hey.....I'll take Chrohn's disease any day over a terminal illness! So just being here really taught me a lot and I am actually grateful that this is all we have to deal with !
  • AJCM
    AJCM Posts: 2,169 Member
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    Glad you will be home soon (yet so sorry that a little guy has to go through all of these tests and procedures :ohwell: )

    Take care
    :flowerforyou:
  • LML79
    LML79 Posts: 697
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    Hi everyone! We're home from the Hospital..FINALLY!! Been a long couple of days but the Dr. said it was up to us if we wanted to continue Brandon's treatments at the Hospital or at home..so of course we chose to go home!

    Right now Brandon is on a lot of prescriptions but he goes for all his follow up appointments next week to see where we are at. They did an MRE yesterday and it showed that this was all from a Crohn's flare up and showed the inflammation in the small intestine called "Terminal ileum" ( We had a crash course in learning all the Crohn's terms!) So that is actually good news because they were not sure if there were any other different underlying causes or infections in the surrounding areas causing this.

    Right now Brandon is still on the Prednisone, Pentasa, and Zantac, along with Miralax, Prilosec and some different prescription vitamin supplements and formula drinks that are high in calories and nutrients to help him grow and gain weight .. since with Crohn's ..all the good stuff doesn't get absorbed ...add on all the food allergies and it makes it even harder to meet the calcium requirements. ..also why he is not gaining in weight or height.

    We met with many dietitian's and nutritionists along with GI specialist while at Hasbro, to help us out in this area. I guess having Crohn's disease is complicated enough..but when you add on all the allergies..it makes it a pretty complex case to deal with.

    We are hoping Brandon can be taken off the Steroid soon and the Dr took a blood test to see if he is genetically compatible to take what's called immunomodulators or 6 MP drug.( there's that dr. Mumble Jumble again lol!!) ...to help autoimmune diseases like Crohn's and maintain remission. Brandon has been a good sport about it all and is very happy to be home!

    Once he starts feeling a little better, and life falls back into normal daily routine, he can start doing the things and activites he loves...like Karate class, which he has missed out on for weeks...and is eager to start back up again!

    I want to thank you all at MFP for the prayers and emails and EVERYTHING....now.... off the Coffee and Cafeteria Grilled cheese and on to a healthy diet and exercise!!
  • areason4stars
    areason4stars Posts: 86
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    Glad your home.

    You seem to have a very good perspective on everything, good for you!

    Hopefully he is able to get off the steroids soon. Even tho they are very effective the side effect are horrible.

    His RX seem very familiar to me, I was on the Prednisone, Pentasa, Prilosec, and 6 mp for years. Once you get the right combo you really can be symptom free for a long time.

    Once you get settled you might want to see about a support group for your son. When I was first DX it was nice to talk to other kids "like me"

    Keeping positive thoughts for your family!
  • LML79
    LML79 Posts: 697
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    Glad your home.

    You seem to have a very good perspective on everything, good for you!

    Hopefully he is able to get off the steroids soon. Even tho they are very effective the side effect are horrible.

    His RX seem very familiar to me, I was on the Prednisone, Pentasa, Prilosec, and 6 mp for years. Once you get the right combo you really can be symptom free for a long time.

    Once you get settled you might want to see about a support group for your son. When I was first DX it was nice to talk to other kids "like me"

    Keeping positive thoughts for your family!

    Thanks! glad to hear this is someone else who has been on these meds. Hope you are doing well..All this is new to us so all the meds are trial and error... and I have never even heard of 6mp a month ago!! The hospital did mention a support group for kids who are dealing with this.. I guess they start back up at the end of August..we might check it out..could be good for him..and us! Thanks again!
  • age1389
    age1389 Posts: 1,160 Member
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    Glad to hear everything is turning out for the better:flowerforyou:

    -Adrienne:heart:

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