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Thread: Update on Bryson

  1. #11
    He may be feeling the pain of the stones and ureteral colic (one of the worst pains that exists) if he has some visceral sensation sparing, or he may be feel the pain of an AD headache that could be caused by the stones. What is his blood pressure when he grimices and acts like he is in pain.

    We rarely just "let stones pass" on anyone anymore. We nearly always get rid of the stones through cystoscopy or interventional radiology procedures and "zap" the stones with a laser if they cannot be retrieved with ureteroscopy or a "basket". I would want to know why this is not being considered by his urologist, since that is certainly state-of-the-art treatment for adults with SCI who have stones.

    (KLD)

  2. #12
    His blood pressure and pulse gets pretty high, but I dont know exactly what. I asked the nurse specifically if they had considered AD and she said they had, but he doesnt fit all the symptoms or something. There is something about ACH (his hospital) and that they cant do some of the procedures to get the stones. I know before when they were "waiting", they were going to have to transfer him to another hospital to do lithotripsy, but then when it turned into an emergency, they went in with the basket. I dont like all the "waiting" either.
    But then again, I'm really not sure of the specifics, as I dont speak directly to the doctors. I'm going to send this to Kimla, so she can read.

  3. #13
    Well I went to see Bryson, expecting him to be miserable, but then I got there and he was sitting up in bed, talking, smiling and ready to play. We talked and played for 2 hours, no signs of any unhappiness or pain! His nurse aslso said he slept all night. Such an amazing little boy. I asked his nurse about the stones and she said she didnt know if he passed them or what. They cant do lithotripsy there...maybe thats why they dont go in and get them everytime. She said they want to figure out where they are coming from. What does that mean? I expressed my concern to her that I didnt understand why he has to be in so much pain, when there are options available to get rid of them, although he would have to be transferred.

    Thanks for your expertise!

  4. #14

    Bryson has AD-posted in 2 forums

    I posted this is another forum, hence the explanation: I'm just upset for Bryson and Kimla....feel like theres nothing I can do. Kimla said she's scared she's going to lose him if they dont figure all this out and get him better.

    Bryson is 18 month old C6C7 quad, injury in December, on a vent. He has been having issues with kidney stones, then this weekend he started having bad episodes of de-sats, blood pressure and pulse spiking/dropping. He turned gray. He's running a fever. They say he has AD. His grandma is very upset. She doesnt understand exactly whats going on. To us, he looks so swollen and stiff. Hes on baclofen for spasms. Hes hasnt been getting PT everyday, which i totally dont understand. He cant move to the rehab floor b/c he doesnt tolerate the vent required to go up there.
    Something happened this weekend when his grandpa (well intentioned) came and did some pressure points/acupuncture with him. Grandma said Bryson's "body shuttered" and the doctors told him to never do that again. Apparently it was a huge deal. But he already was running a fever and showing some signs of issues before grandpa did that.
    This is a teaching hospital, so she mainly sees residents. I told her to go back up there and demand a conference with someone with some answers and a plan. she is open to transferring him to a SCI hospital now. But doesnt someone have to go with him? Unfortunately, his mom passed away in the accident, dad is incarcerated. I called Shriners in Chicago and left a message.
    We are all upset. I personally dont feel like he is getting the best care, but then again, i dont know much and never talk to the doctors, just his grandma and the nurses when I go up there. It just feels like noone knows exactly what is going on. UGH-I hate this for baby Bryson!!!! I know its a slow recovery, but his health just doesnt seem good right now. Someone told me that ACH (his hospital) is VERY limited in the urology department...maybe thats the problem????

    What questions should grandma ask? How does he get better from AD? They've been waiting for the stones to pass, he goes several days and does well, then does bad again. I just dont know what to tell her to do. I'm sorry that I am rambling. Any advice would be appreciated.

  5. #15

    Bryson

    Seems to me like you all have been very patient with the hospital and that they are clearly ill-equipped to deal with his injuries.

    I would try and get him to Shriner's or another SCI hospital as fast as possible.

    My thoughts are with you.

  6. #16
    I agree. He needs to be moved ASAP. Do whatever you need to do to insist on a family meeting with his entire team (physician, nurses, therapists, social worker, etc.) THIS WEEK. Call Shriner's again tomorrow, and keep calling until someone gets back to you. He would need to be transferred via air ambulance (unless he is within 1-2 hours of Chicago when ground critical care ambulance would be an option), and yes, a family member should go with him. Shriner's can help to arrange family housing as well.

    Stones should be surgically removed in people with SCI, not allowed to pass naturally. Stones can permanently damage his kidneys and cause serious UTIs that cannot be managed with just antibiotics. AD can kill a person if it is not properly treated. The AD is not making him sick...whatever is CAUSING the AD is making him sick. It is a symptom of something seriously wrong that is causing his body pain. Being bloated, etc. makes me think he may already have kidney problems that are making him ill.

    At C6-7 he should be weanable from the vent. He needs to be someplace where they have experience with SCI vent weaning in a young child.

    (PS: I removed the other post. We discourage duplicate posting in more than one forum.)

    (KLD)

  7. #17
    Please encourage his grandma to take KLDs advice. Maybe you could print the posts and show her. Keep calling Shriners. This baby needs help. Thank you for keeping us posted. Been praying for him. ( and you)

  8. #18
    Thank You and sorry for the double posting. I just had a moment of severe frustration and not knowing what to tell Kimla to do. I went to see him today. His primary nurse explained everything. She said he is stone free from a medication that started giving him. His culture shows he's growing a "new bug" that hes never grown before, so back on ABX. Hes still desating some, but otherwise OK, vitals normal , tolerating being up, etc. I told Kimla and the nurse that its time for a conference. Even if they are completely repeating everything they have said before, it needs to happen. Kimla said she hasnt had any explanations since the first week in December when they discussed his prognosis. All her info comes from nurses, therapists...mostly b/c its the weekend when she's here. I think this is a big part of the problemm, just not getting complete, correct info.
    I called Shriners in Chicago, but didnt have her address to give them. Will call back now that I have it. I think she needs to talk to someone and see what the difference will be. It seems like when we talk to his primary nurse, it all makes sense...just normal complications of SCI, are on top of it, treating everything appropriately, etc. But then other "shifts" its like everything falls apart and he doesnt get as good of care.

    Thanks for listening. Will be printing these and taking up there, as well as sending her a link. She's on hre way up here now I believe.

    BTW, not sure if I explained. Bryson is here in Little Rock. Family, including grandma/legal guardian lives 3 hours away. I am the only one who lives here. They come as much as possible.

  9. #19
    Just an update:

    Kimla requested a Care Meeting and is meeting with the Head Nurse this afternoon to discuss issues. She also contacted Shriners hospital for possible transfer. I cant say that ACH *isnt* providing the best care b/c I simply dont know details, but there are definitely communication issues. Regardless, I am proud of her for being an advocate. Thank You so much for your advice and guidance. I will keep you updated.

  10. #20
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    PaulaMommy, Thanks for the update, and for what it is worth I hope Bryson gets transferred to Shriners. Keeping you all in my thoughts.

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