Something is wrong with Bryson...

[PaulaMommy]

Bryson is the 18 month old toddler in MVA in December. C6/C7 SCI, on a vent. Last week, he got a G-tube, they changed his vent to a "smaller" one day before yesterday. Yesterday I went to see him and could tell he was very unhappy. HIs nurse said she felt something was bothering him. ANyway, he was grinding his teeth TERRIBLY and tears were falling down his face. I only got 2 smiles out of him in 2 hours I was there.

I had a bad feeling so I went back tonight and when I walked in they had his clothes off of him, his belly looked distended and his nurse said they had a very rough afternoon. They did a chest X-ray, drew blood, did a flu test. IN the middle of the day, he started running a fever. They changed him back to his old vent sometime during the day. Anyway, his flu came back negative. She was having to draw his blood again b/c something was wrong with the first specimen. He is sleeping alot. WHen he is awake, he's crying and grinding his teeth so bad it sounds like they are crunching. I am so worried about him. Wouldnt the X-ray have shown if something was wrong with his G-tube? WHen he got back from surgery last week, he was the happiest he has ever been (without pain meds) so they assume he cant feel that. Anyway, I guess I dont have any questions. Just wanted to ask for everyone's prayers or thoughts on any of this.
Thanks

[bcsimpsons]

You and Bryson are definately in my thoughts and prayers!!!! I wish there was more I could do. Sending hugs and support your way!!!

Becky,
Chicago

[Buffie]

I know this may sound crazy, but I notice you say that his belly is distended, how is his bowel program? Have they been making sure that his bowels are evacuated every day or every other day. I know that this can cause a considerable amount of discomfort as well.

[Nancy E]

I thought the same thing about his bowel program. I hope that they have established that.
I have been and will keep praying for Bryson and your family. Please keep us posted. Nancy

[BeeBee]

My thoughts and prayers are with you, Bryson and the rest of the family. Keep someone with him for comfort and to make sure they are taking the best care of him.
Other than bowels (they can xray to find if he's full of stool, have they? most pain meds can cause terrible constipation), have they checked for a lung collapse or leak? Air into his belly could be a problem.
Are they shifting his position regularly? If there's air in bowel, on his tummy may help. How's his blood count? Assume they know he's not bleeding internally?
Xray will only show shadows of soft tissue, so a misplaced g-tube or bleed may be missed. And they should never assume what he can/can't feel. And this can change regularly, he's a newby - what he couldn't feel last week, he may can feel this week.

[Eileen]

Bryson, you and his entire family are in my thoughts and my prayers.

[SCI-Nurse]

Something is going on in his belly. It could be an impaction, and he could be having AD that is giving him pain. It could be appendicitis or other acute abdomen problem. The nurses need to notify the physician and he should have at least an abdominal ultrasound and probably a CT scan as well. Don't let this go on through the night. It could be life threatening.

(KLD)

[PaulaMommy]

Hi
Sorry I havent replied yet. My computer has been being repaired. Wed. night I called several times thru the night, as I couldnt sleep. The nurse said Bryson was acting happy again. I was very confused b/c I could have sworn he was really sick and/or suffering.

Long story short, they found he has a UTI and large kidney stone. I bet he was trying to pass it or having pain from it on Tuesday and Wed. when I was there. I have heard that kidney stone pain can come and go??

He is on a laxative and poops regularly. When his belly was distended, the nurse said he had pooped twice but very small amounts, so she was hoping that was why his belly was big. I assume they got it all figured it out now-thank Goodness. KLD-thats very much how I felt...I had a really bad feeling.

Bee Bee-he is on a bed that shifts him regularly. I had wondered if he had a bed sore somewhere, but I think/HOPE his only bedsore is the one on his head that they are treating.

As for your concern about pain meds. I too have been concerned about that. I had decided that although I wasnt immediate family, that if I went up there on Wed. and he was acting like that again, i was going to request pain meds (if they hadnt already given him some). His primary nurse does seem to address the issue and has told me that she gives him tylenol, which seems to give him great relief if/when he is cranky. I will say that there are days where he is perfectly happy, not acting distressed without pain meds. On Tuesday when he was grinding his teeth and acting miserable, I asked about giving him something for anxiety. They said he was off Ativan and that s all that was said about it. I think it had been a few hours since he had gotten pain meds, so I bet thats what he needed. He eventually was happy and slept thru the night, so I assume they medicated him. I will keep what you said in mind-that he might be able to feel one week something he couldnt before. I hope to be an advocate for him as much as possible.
Sorry this is long. Thank You again for your information and concern.

[uuudianauuu]

I have been following your post, and it makes me so sad to hear about Bryson. I am so sorry.
Did you ever decide if he can be brought to Shriners.
I can't help but wonder about how unhappy he was. He should not be suffering at all.
Diana

[PaulaMommy]

Its a difficult situation. His grandparents are in a custody dispute for custody over Bryson and his newborn baby sister. They all live in Northwest Arkansas, while Bryson is here in Little Rock (where I am) at Children's. Even if someone wanted to move him, I think it might be ahuge fight, given the custody circumstances.

Anyway, I will say that his nurses seem to be very aware of Bryson's normal behavior opposed to his "bad day" behavior and I know his primary nurse tries to figure out how to keep him comfortable and happy. One day I walked in and she had moved all her stuff right next to him and was charting. He was watching a movie, but I'm sure its comforting to have someone right next to him.

The main time he is very unhappy is during RT-thats when he cries and grinds his teeth...(other than this week when the UTI/stone issue started)