Thursday, March 24, 2011

I can't believe it - another CNS infection

POOR BABY!  Ty's blood cultures and the culture of his CSF fluid have confirmed yet another staph infection in his system.  I am just so upset.  To stave off another bout of meningitis, he is now being treated with three different antibiotics that are upsetting his stomach and we have been discussing strategy around radiation and surgery to change out the shunt.  I wish he didn't need the damn shunt anymore, but he's had so many infections in his central nervous system at this point that his brain has too much scarring to effectively absorb the fluid without one.

Since the shunt is now infected with staph, it needs to be replaced.  However, Ty is in no condition for another surgery, nor can we afford to delay his radiation treatment.  There have been some experimental findings that support intrathecal treatment with antibiotics (which means injecting the shunt directly with the drug on a daily basis) and in some preliminary studies there are cases where that approach worked in clearing the infection from both the CSF fluid AND the shunt without having to remove the hardware.  It is a shot in the dark, but we decided to go for it.  So, poor Ty has to have a needle injected into his head once a day until his radiation therapy is complete (three more weeks) and we will most likely need to stay in the hospital for the duration. 

I just feel so beat up.  I am missing Gavin so much already, and Ty asked me three times today if he can go home yet.  He bounced back so well these past couple of days, I never expected this.  Luckily, Ty isn't aware of the severity here and he says he feels "bedda".  God bless him.

16 comments:

  1. Cindy I am sorry to hear he has another infection but I know he will get through this, shunts are always a pain. Recently my son had a severe case of strep, his entire body swelled and they had to put him on strong antibiotics. Our Park Ave. pediatrician put him on FLORASTOR KIDS over the counter to alleviate the stonmach pain, they sell it at the duane reade pharmacy. It is pricey but it definitely helped. I have to be at Sloan tonight at 9 pm if you want I can bring you the supply we have. It is just a probiotic that gets put into his drink. The doc said it is the new thing docs give kids that have to take strong antibiotics. My number is 570-977-2937 I come in the side entrance on 67th Street at 9 pm. I will bring it just in case.

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  3. Cindy: Angels walk by your side. Brooke; thank you from us here in Puerto Rico, you are an angel; we wish we could visit and help.

    Cindy, you are a multi tasker, and so is Ty; you both go for it. I believe you are making the right decision. Radiation is key and the new treatment for the infection, sounds right to the issue. I just hope the process is not too painful for Ty.

    We will continue our prayers in a multi-tasking way. We hope God gives you the faith, patience, peace and love weapons against your grief and anxiety. Make the best of each day.

    This Saturday Juliette will receive Jesus for the first time and she will make sure she asks for Ty's health.

    We send you our love.

    Remember:
    “Follow your heart, but be quiet for a while first. Ask questions, then feel the answer. Learn to trust your heart.”

    “All human wisdom is summed up in two words - wait and hope” - Alexandre Dumas Père

    “Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions” - Rainer Maria Rilke

    “Let nothing disturb thee; Let nothing dismay thee; All thing pass; God never changes. Patience attains All that it strives for. He who has God Finds he lacks nothing:God alone suffices.” St. Teresa of Avila quotes

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  4. Cindy,

    My heart is breaking for Ty and your guys. I cannot believe this. I was so happy to hear how well Ty was feeling. He is such a brave little guy.

    I know this so upseting, but look at that little man, he feels bedda. I truly have so much love for your family. He is an amazing child, and he WILL get through this.

    I pray for Ty everyday. I can't even begin to imagine how difficult this is for you and Lou, especially without seeing your other little man, Gavin.

    I wish for the day that you will go back to having a normal life, without a million hopsital and doctor visits. I wish for the day that Ty is cancer free. I believe that will happen.

    It is amazing, because I am such a pessimist when it comes to everything, but with Ty, I truly see him beating this!

    Thinking about the Campbell family always.:)

    Stay strong Cindy, as I know you will!

    Joy Marielle
    Baltimore, MD

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  5. Cindy,
    Come on girl, you CAN do it! Keep that chin up, boxing gloves on and your hands up. You're at the halfway point.. Light is at the end of the tunnel for the radiation.

    We're in your corner and rooting for all you Campbell's.

    Ty is always in our thoughts and prayers.
    Stay strong!

    Love,
    Janine

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  6. Cindy… This is so upsetting; amazingly enough I feel at peace that Ty is being taken care of; you have to try to get there too. Go with the new treatment until you see that it is not working and then move to plan B. Radiation is very important right now and I wouldn’t advise not making it a primary concern. Staph can be baaadddd news so just move forward with the knowledge of the doctors, your love and Tys strength,

    I am watching my son Wesley dance to a Spongebob videos as I type, I now know how precious his joyous giggling is, I know this largely because of you. To think of how much is taken for granted, normally a 3 year old little boy dancing to Spongebob would be rather insignificant then you see a three year old who can’t and it puts it in a new perspective.

    We honestly love your family Cindy, of course most of the attention is on sweet baby boy Ty, but, we love you all.

    I know you’re busy but I need your address. You can either send it on Facebook or @ maryeking83@aol.com, I don’t want to say what everything is but I need to make sure I can get it to you. Is someone always there to receive the mail? I am worried about leaving so much so I was thinking of doing a cert mail signed receipt. Let me know the route you want me to take. I have been pumping the community that I am involved with up so much to do something for Ty. Know that we now have entire congregations, law firms, doctors’ offices, chiropractic officers, nurses, therapist, patients, teachers, professors, students, 2 colleges, AND MANY MANY MORE people who are praying for you little man. I am to send everything Saturday. I think Ty being happy is so crucial to his health, hence I wanted to send this asap, but you know your schedule… tell me what to do and what works best for you. If not I am going to send everything to the address that I received from two ladies off of Tys page… I just would appreciate it if you have the time to confirm it with me.

    In ending, Ty is going to be PAST all of this by the summer, he is going to be dancing to Spongebob (want a video) and he is going to enjoy what really matters, his life! Annnndddddd…. Having a play date (while moms get some yummy food ) lots of bubbles, running, dancing and playing Spiderman “Ty” vs. The Red Power Ranger “Wes”…. I am sure Ty will win, obviously he is a winner

    Love you Ty, very, very much,

    Mary E. King, and the rest of the King family
    GA

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  7. What? That's IT! I'm calling the Big-Brown-Tooth-Nub-In-The-Sky to go pick up that infection. He owes me a lot of favors!!!!!

    The antibiotic shot sounds pretty good to me - I mean it sounds like it sucks but it sounds like it will work. I can picture the injection going right to the infection, and I can even rhyme about it.

    I wish you didn't have to deal with another setback and be in the hospital. Well, you're the best mommy in the whole world, and that's why you're doing it.

    Here's something you can do. Become a force to be reckoned with if anyone comes into Ty's room or touches Ty without washing their hands. Post big signs on his door and at his bedside and let the staff and visitors know, as well as being diligent yourself. You can absolutely reduce the risk of infection. Unless everyone is already 100%, but I doubt it.

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  8. Poor little guy. My thoughts and prayers are with him and your family. Ty is a fighter and this won't hold him back, I am sure.

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  9. My heart just broke reading this and I had a good cry for y'all. But, we all know Ty is strong and very capable of getting through this, as he has done so bravely in the past.

    I hope y'all can have a good weekend even though you will be in the hospital. I hope Ty gets to feeling even better and y'all can make some precious memories.

    Thinking of you always,
    Jan
    Georgia

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  10. All my love and prayers are with you and Ty. He is too precious for words. My heart is breaking reading about this damn infection, but it seems so silly to say given how you must be suffering. I love Rosalyn's quotes from the above post. I hope those words bring you some hope, peace, strength. Again -- all my love and prayers are with you. Many hugs!

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  11. I am so sorry this has happened to you again. I always keep Ty and your entire family in my prayers, today I will pray extra hard for all of you. I hope he is comfortable and the infection clears quickly. In a few weeks, post radiation, I am keeping my fingers crossed that all well be super well with Ty. He is such a remarkable little boy and your family is extraordinary!

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  12. Cindy, I am so sorry to hear that Ty has had this setback. I am sure that he will kick this in the butt and be feeling better real soon. I am not sure if you ever heard of this but I came across a product called 'Silver Solution' a few years ago. It comes in a liquid and a gel. Very aggressive against pathogens with no real side effects. It has worked wonders for my husband. He actually had surgery and picked up a staph infection & the silver really helped. The company I get it from is Nutronix International in Virginia. You can visit the website at www.nutronix.com or call them at 1-877-990-9951. My 15 year old boys take it too and they have never experienced any issues. I hope it can help Ty too! Take care! My heart is with all of you. Feel better Ty!!!!!

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  13. Cindy, May God continue blessing you. I know you are tired but you are a mom first and Mom's find the strength because God made them special to keep going. Get that anger level up and get a good scream at cancer and infection and lets beat the heck out of it. Lets get those antibiotics going so that infection does not know which way to turn except to attack cancer. Ya, lets let the infection beat up cancer and then lets get them both when they are knocked down. Get those hands up, lungs ready - Ty baby - lets start the dance. Come on girl we will do this with you. You may think you are alone but there is a whole nation praying their heart out.

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  14. All I can say is, hes amazing and such a tough little guy... not a day goes by where Mary and I dont talk about him. he is just so presious. and we LOVE HIM SO MUCH. God Bless, Kathy Brunelle

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  15. Nice Post #8858184e-3b6e-11e0-a3a0-000f20980440!!! KABOOM! THAT JUST HAPPENED. I could have not said it any better. My Family and I are praying daily in Iowa. Keep movin those feet TY. Shake & Bake, Shake & bake

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  16. Hello Campbell Family!

    I do not know you or Ty and you guys dont know me, but I have seen the posts on Facebook, and from there have followed your blog. As a mom of two sons, I cannot imagine what you are going through. You ALL are amazing individuals, and that little boy of yours is a fighter, for sure! I was able to make a small donation to his fund and I know that it will not help much but just know that your family is in my thoughts and prayers. God has a way of performing miracles and I pray he will do so for your family. May He bless you and comfort you on this journey.

    Warm regards,


    Lisa Piazza

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