10 replies to this topic

[PaulaMommy]

Bryson 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.

[kewlcatkez]

PaulaMommy, on Mar 11 2008, 04:48 AM, said:

Bryson 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.

PaulaMommy,

He gets "better" from AD by removing the thing which is causing it. For eg if he has pain which is causing it, or ingrowing toenails or a blocked catheter, G tube etc etc, then all these things can trigger AD. Autonomic Dysreflexia can happen to anyone with a spinal cord injury, especially those above T6/5. Please see the following http://www.sci-info-pages.com/ad.html

It states:

""Persons at risk for this problem generally have injury levels above T-5. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure.""

So has Bryson got a pressure sore, a blocked catheter or a Urinary or chest infection? Is she hydrated ( getting enough IV or Enteral fluids?). It could possibly be the Kidney stones -n he may need more pain medications and or Ultrasound to check for blockages in the kidney/urinary tract ( you can not rely on urine output alone to rule this out!)

As stated above, all these can cause an AD attack. The good news is that it can be controlled by using drugs such as GTN a Nitrate used in Angina ( to dilate or open up the arteries to the heart, actually throughout the body) and can be stopped in its tracks by finding what is causing it..please see above.

Bryson will have high Blood Pressure, which instead of being the 'cause' per se, is actually a 'sign' that something is wrong. It is important that they CONTROL his Blood Pressure and essentially his AD by treating it with Nitrates (n which open or dilate the blood vessels reducing the pressure - very quickly indeed. He will need Cardiac monitoring whilst they do this, especially in light of him being so young etc.

The seizures are caused by the high blood pressure, so once it is lowered the threat of seizures goes. Being in ICU Victoria should be monitored very closely. I would urge your daughter to ask them what is causing the AD, they need to try and isolate what it is so they can stop it. They may also need to do another scan if they can;t pinpoint anything in her urinary sample, blockages in her catheter or pressure areas. Sometimes its a limb placed awkwardly or dehydration or other infection...The scan will be to look for things other than the above.

Also, you state he looks "swollen' -Oedema in the tissues can occur, and needs PT to assist it to leave..However severe oedema ( swelling of fluid) needs to be investigated further. Due to the kidney stones AND the swelling, this may be the more obvious cause..

Hang in there PaulaMommy, they need to find what is causing it and then hopefully all will be well. Of course he will always be at risk of AD developing, in response to something wrong, but as long as managed properly, he should make a full recovery (haemodynamically stable, ie vitals good and Of course be ok Neurologically) from it.

Also please do a search here on Autonomic Dysreflexia and for Theresa's thread on her Grand daughter as she too had AD at about the stage Bryson is at.. There are some fab topics and great advice here.

I hope that they are managing to isolate what is causing this. DO urge his Grandparents to DEMAND as Paediatrician who has knowledge of AD in SCI and/or a Spinal injuries /rehab dr who can work alongside the Paedi dr.

I hope this helps. Sending positive vibes that all is well. Please do show this info to Bryson's grandma so she can ask the medics about it and perhaps ask for a case conference with his Drs ( the highest ranking one and his/her team, as well as Rns etc).

Take care and let us iknow how he is doing,

Hugs

K


Just to add, if he is stable, there should be PT every day - passive ROM etc. This is to help prevent his muscles contracting and also to promote/keep muscle mass and other benefits. His g/parents need to make it known that they are concerned about the PT. I can see that they say they can not move him to rehab ward until his vent is 'down graded' however that is rubbish as many do rehab with vents!! I wonder if he is going to SPINAL rehab or something else? I do understand they wish to ensure he has as much lung function as possible, but that does not mean they can justify him having no PT. Of course if this is due to him being unwell with AD etc then this is understandable. HOWEVER they need to be communicating this to you all. Also AD could be being triggered by his spasms ( they typically kick in after a few months as spinal shock starts to lessen), his contracted muscles and discomfort from hot having his limbs passively moved. Yes its less likely but the hospital need you to communicate this to them to shock them into giving Bryson the care he needs ( IF* this is the case and there is no valid reason for neglecting the PT. Staff shortages is not a valid reason either lol)*

Edited by kewlcatkez, 11 March 2008 - 12:25 PM.

[Theresar360]

kewlcatkez, on Mar 11 2008, 05:15 AM, said:

PaulaMommy, on Mar 11 2008, 04:48 AM, said:

Bryson 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.

PaulaMommy,

He gets "better" from AD by removing the thing which is causing it. For eg if he has pain which is causing it, or ingrowing toenails or a blocked catheter, G tube etc etc, then all these things can trigger AD. Autonomic Dysreflexia can happen to anyone with a spinal cord injury, especially those above T6/5. Please see the following http://www.sci-info-pages.com/ad.html

It states:

""Persons at risk for this problem generally have injury levels above T-5. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure.""

So has Bryson got a pressure sore, a blocked catheter or a Urinary or chest infection? Is she hydrated ( getting enough IV or Enteral fluids?). It could possibly be the Kidney stones -n he may need more pain medications and or Ultrasound to check for blockages in the kidney/urinary tract ( you can not rely on urine output alone to rule this out!)

As stated above, all these can cause an AD attack. The good news is that it can be controlled by using drugs such as GTN a Nitrate used in Angina ( to dilate or open up the arteries to the heart, actually throughout the body) and can be stopped in its tracks by finding what is causing it..please see above.

Bryson will have high Blood Pressure, which instead of being the 'cause' per se, is actually a 'sign' that something is wrong. It is important that they CONTROL his Blood Pressure and essentially his AD by treating it with Nitrates (n which open or dilate the blood vessels reducing the pressure - very quickly indeed. He will need Cardiac monitoring whilst they do this, especially in light of him being so young etc.

The seizures are caused by the high blood pressure, so once it is lowered the threat of seizures goes. Being in ICU Victoria should be monitored very closely. I would urge your daughter to ask them what is causing the AD, they need to try and isolate what it is so they can stop it. They may also need to do another scan if they can;t pinpoint anything in her urinary sample, blockages in her catheter or pressure areas. Sometimes its a limb placed awkwardly or dehydration or other infection...The scan will be to look for things other than the above.

Also, you state he looks "swollen' -Oedema in the tissues can occur, and needs PT to assist it to leave..However severe oedema ( swelling of fluid) needs to be investigated further. Due to the kidney stones AND the swelling, this may be the more obvious cause..

Hang in there PaulaMommy, they need to find what is causing it and then hopefully all will be well. Of course he will always be at risk of AD developing, in response to something wrong, but as long as managed properly, he should make a full recovery (haemodynamically stable, ie vitals good and Of course be ok Neurologically) from it.

Also please do a search here on Autonomic Dysreflexia and for Theresa's thread on her Grand daughter as she too had AD at about the stage Bryson is at.. There are some fab topics and great advice here.

I hope that they are managing to isolate what is causing this. DO urge his Grandparents to DEMAND as Paediatrician who has knowledge of AD in SCI and/or a Spinal injuries /rehab dr who can work alongside the Paedi dr.

I hope this helps. Sending positive vibes that all is well. Please do show this info to Bryson's grandma so she can ask the medics about it and perhaps ask for a case conference with his Drs ( the highest ranking one and his/her team, as well as Rns etc).

Take care and let us iknow how he is doing,

Hugs

K


Just to add, if he is stable, there should be PT every day - passive ROM etc. This is to help prevent his muscles contracting and also to promote/keep muscle mass and other benefits. His g/parents need to make it known that they are concerned about the PT. I can see that they say they can not move him to rehab ward until his vent is 'down graded' however that is rubbish as many do rehab with vents!! I wonder if he is going to SPINAL rehab or something else? I do understand they wish to ensure he has as much lung function as possible, but that does not mean they can justify him having no PT. Of course if this is due to him being unwell with AD etc then this is understandable. HOWEVER they need to be communicating this to you all. Also AD could be being triggered by his spasms ( they typically kick in after a few months as spinal shock starts to lessen), his contracted muscles and discomfort from hot having his limbs passively moved. Yes its less likely but the hospital need you to communicate this to them to shock them into giving Bryson the care he needs ( IF* this is the case and there is no valid reason for neglecting the PT. Staff shortages is not a valid reason either lol)*

Paula, I just read this post and answered the other one you emailed me. I had some more thoughts on this. I really believe if someone isn't watching a child in the hospital they tend to not be taken care of as well. There have been numerous incidences where my daughter discovered lack of care when they were not there. It is hard for them to be there 24/7 considering her dad had to go back to work and they have another child at home that feels abandoned. My daughter and her husband one night went and heated up their dinner and went to eat it in the rec room the nurse thought that they had left. She went in Vikki's room turned off all the lights and shut the door. Mind you her alarm on her vent is broken so they put a portable alarm on her that can only be heard from her room. When my daughter entered the room she was laying there awake with huge tears streaming down her face in the dark alone. I totally went crazy when I heard this my daughter called me crying. Here is this poor baby who can't move let alone call out in the dark alone and God forbid her alarms went off no one would have heard it. I Called that hospital and went psycho I really was upset. What if something would have gone wrong no one would have heard or known. Needless to say that nurse no longer works on that floor. What are these people thinking? There are on the other hand nurses their that treat her like their own. I see them kissing her telling her that they love her that makes me feel better. Hopefully she will be able to come home still on March 26. We have run into a couple of problems though she keeps running a fever and they can't figure out why. They have checked for a UTI, pnuemonia, and any viral infections and can't find out what is going on. I think that the baby is sick of being there and wants to be home with mommy, daddy and her sister. I really feel that this affects her whole being. She Cries awful when they leave so they try to get her to sleep before they leave. I hope that things go better for Bryson! Like I said if you need anything or just to talk I am here......Theresa

[kewlcatkez]

Theresar360, on Mar 11 2008, 04:06 PM, said:

Paula, I just read this post and answered the other one you emailed me. I had some more thoughts on this. I really believe if someone isn't watching a child in the hospital they tend to not be taken care of as well. There have been numerous incidences where my daughter discovered lack of care when they were not there. It is hard for them to be there 24/7 considering her dad had to go back to work and they have another child at home that feels abandoned. My daughter and her husband one night went and heated up their dinner and went to eat it in the rec room the nurse thought that they had left. She went in Vikki's room turned off all the lights and shut the door. Mind you her alarm on her vent is broken so they put a portable alarm on her that can only be heard from her room. When my daughter entered the room she was laying there awake with huge tears streaming down her face in the dark alone. I totally went crazy when I heard this my daughter called me crying. Here is this poor baby who can't move let alone call out in the dark alone and God forbid her alarms went off no one would have heard it. I Called that hospital and went psycho I really was upset. What if something would have gone wrong no one would have heard or known. Needless to say that nurse no longer works on that floor. What are these people thinking? There are on the other hand nurses their that treat her like their own. I see them kissing her telling her that they love her that makes me feel better. Hopefully she will be able to come home still on March 26. We have run into a couple of problems though she keeps running a fever and they can't figure out why. They have checked for a UTI, pnuemonia, and any viral infections and can't find out what is going on. I think that the baby is sick of being there and wants to be home with mommy, daddy and her sister. I really feel that this affects her whole being. She Cries awful when they leave so they try to get her to sleep before they leave. I hope that things go better for Bryson! Like I said if you need anything or just to talk I am here......Theresa

Hi again Theresa,


First off, Persistent Pyrexia of unknown origin ( high temp) can be due to Autonomic dysreflexia. They are right to rule out other causes, first, but should look to see if anything is causing Victoria to be Dysreflexic.
Due to my connective tissue disorder (which affects not only joints but anywhere there is connective tissue) I have Autonomic DYSFUNCTION, and we have discovered (amongst other things) that I am either low grade pyrexia or the other extreme of low grade hypothermic. So it is worth mentioning...again.

I am wishing you all the best for later this month. Victoria will be much better at home with you all.

With regards to the post you wrote above: I can not express how horrified I was reading about the things which have occurred. When I was a junior nurse I witnessed a few things which I 'blew the whistle on" I was treated like crap by one of the senior nurses and her friends for it, but it was worth it to have the incidents brought to light and patient care improved. I was even told that I would never get promotion due to my "tell all attitude". LOL, can you believe it? In the end, I actually did pretty well for myself by doing things as right as I could ( everyone is human right?) and then when I was a Senior Nurse, I had a reputation of not tolerating anything which I considered "abuse" when I was in charge. Back to here and now, if it is Numerous occasions of Neglect and abuse ( I agree it is and should be investigated!! -esp once she is home!) then it is sadly, more than one Nurse. Some people involved in neglect which I referred to above used the excuse of "short staffed", it is very convenient to do so...*ANY* nurse worth their salt will know of the procedures and what to do if needs cannot be met due to short staffing. I have done such things as being managers down to help (with non critical work on the unit)...


I hope this helps some,

Take care,

HUGS

K

Edited by kewlcatkez, 11 March 2008 - 05:39 PM.

[PaulaMommy]

Hi ladies
Thanks for your responses. This will be quick b/c my kids are running around, but wanted to respond. K-his urine culture showed he is growing a "new bug" that he hasnt grown before, so they started treating him for that. The nurse said as of now he is stone free. I asked about PT and *she said* he is getting it everyday that she is there. But cant speak for the weekends or other days. When I talk to her its like everything is under control, they are treating everything appropriately, just normal complicaitons of SCI, etc. etc. But then she told me that to her knowledge he DOES NOT have AD. I called Kimla when I left and she said the nurse told her yesterday that he was experiencing it and even gave her a info hand-out to read about it. THIS is the problem, lack of communicaiton. I told Kimla to insist on a conference with his doctors. Tell them to start with the most basic thing and explain every aspect of what is going on, what they are treating, what the plan is, etc. I encouraged her to take charge. Bryson might be getting perfectly appropriate care, but the communication gap is making it all confusing.

Theresa-I'm so sorry to hear of Victoria's incident!! How scary for her!!! It sounds like you guys took all the right measures-good for you! I also believe every person who is a hospital needs an advocate there as much as humanly possible.

Ok gotta run the kids found the candy from Christmas!!!

will come back to see if I answered all your quesitons later...thanks again.

[Theresar360]

kewlcatkez, on Mar 11 2008, 10:24 AM, said:

Theresar360, on Mar 11 2008, 04:06 PM, said:

Paula, I just read this post and answered the other one you emailed me. I had some more thoughts on this. I really believe if someone isn't watching a child in the hospital they tend to not be taken care of as well. There have been numerous incidences where my daughter discovered lack of care when they were not there. It is hard for them to be there 24/7 considering her dad had to go back to work and they have another child at home that feels abandoned. My daughter and her husband one night went and heated up their dinner and went to eat it in the rec room the nurse thought that they had left. She went in Vikki's room turned off all the lights and shut the door. Mind you her alarm on her vent is broken so they put a portable alarm on her that can only be heard from her room. When my daughter entered the room she was laying there awake with huge tears streaming down her face in the dark alone. I totally went crazy when I heard this my daughter called me crying. Here is this poor baby who can't move let alone call out in the dark alone and God forbid her alarms went off no one would have heard it. I Called that hospital and went psycho I really was upset. What if something would have gone wrong no one would have heard or known. Needless to say that nurse no longer works on that floor. What are these people thinking? There are on the other hand nurses their that treat her like their own. I see them kissing her telling her that they love her that makes me feel better. Hopefully she will be able to come home still on March 26. We have run into a couple of problems though she keeps running a fever and they can't figure out why. They have checked for a UTI, pnuemonia, and any viral infections and can't find out what is going on. I think that the baby is sick of being there and wants to be home with mommy, daddy and her sister. I really feel that this affects her whole being. She Cries awful when they leave so they try to get her to sleep before they leave. I hope that things go better for Bryson! Like I said if you need anything or just to talk I am here......Theresa

Hi again Theresa,


First off, Persistent Pyrexia of unknown origin ( high temp) can be due to Autonomic dysreflexia. They are right to rule out other causes, first, but should look to see if anything is causing Victoria to be Dysreflexic.
Due to my connective tissue disorder (which affects not only joints but anywhere there is connective tissue) I have Autonomic DYSFUNCTION, and we have discovered (amongst other things) that I am either low grade pyrexia or the other extreme of low grade hypothermic. So it is worth mentioning...again.

I am wishing you all the best for later this month. Victoria will be much better at home with you all.

With regards to the post you wrote above: I can not express how horrified I was reading about the things which have occurred. When I was a junior nurse I witnessed a few things which I 'blew the whistle on" I was treated like crap by one of the senior nurses and her friends for it, but it was worth it to have the incidents brought to light and patient care improved. I was even told that I would never get promotion due to my "tell all attitude". LOL, can you believe it? In the end, I actually did pretty well for myself by doing things as right as I could ( everyone is human right?) and then when I was a Senior Nurse, I had a reputation of not tolerating anything which I considered "abuse" when I was in charge. Back to here and now, if it is Numerous occasions of Neglect and abuse ( I agree it is and should be investigated!! -esp once she is home!) then it is sadly, more than one Nurse. Some people involved in neglect which I referred to above used the excuse of "short staffed", it is very convenient to do so...*ANY* nurse worth their salt will know of the procedures and what to do if needs cannot be met due to short staffing. I have done such things as being managers down to help (with non critical work on the unit)...


I hope this helps some,

Take care,

HUGS

K

K, In reference to Victoria's AD my daughter told me that it is usually caused by her having bladder problems. I am not sure but she ruptured her bladder in the accident and they had to surgically repair it. I wondering if this could have anything to do with her getting so many UTI's. Anyway I got of track there for a second my daughter told me that they are having a really difficult regulating Victoria's body temperature. She is either burning hot or freezing cold and you have to constantly check her to make sure she is comfortable. Is this what is happening to you K? If so how to you control this situation? Got to go for now will check back later.....Theresa

[Theresar360]

PaulaMommy, on Mar 11 2008, 02:24 PM, said:

Hi ladies
Thanks for your responses. This will be quick b/c my kids are running around, but wanted to respond. K-his urine culture showed he is growing a "new bug" that he hasnt grown before, so they started treating him for that. The nurse said as of now he is stone free. I asked about PT and *she said* he is getting it everyday that she is there. But cant speak for the weekends or other days. When I talk to her its like everything is under control, they are treating everything appropriately, just normal complicaitons of SCI, etc. etc. But then she told me that to her knowledge he DOES NOT have AD. I called Kimla when I left and she said the nurse told her yesterday that he was experiencing it and even gave her a info hand-out to read about it. THIS is the problem, lack of communicaiton. I told Kimla to insist on a conference with his doctors. Tell them to start with the most basic thing and explain every aspect of what is going on, what they are treating, what the plan is, etc. I encouraged her to take charge. Bryson might be getting perfectly appropriate care, but the communication gap is making it all confusing.

Theresa-I'm so sorry to hear of Victoria's incident!! How scary for her!!! It sounds like you guys took all the right measures-good for you! I also believe every person who is a hospital needs an advocate there as much as humanly possible.

Ok gotta run the kids found the candy from Christmas!!!

will come back to see if I answered all your quesitons later...thanks again.

Paula, I think the lack of communication in the hospital is a very big problem. I couldn't tell you how many times we were told one thing then someone else would tell us something different and before you knew it you had 15 different versions of what was going on! It is totally frustrating and makes a person totally crazy. I think it is very important to do what is being done at Children's they have what is called Care Meetings one a week where all concerned nurses, doctors and her parents all sit around the big table and discuss what is going on. This way you can keep straight everything it can be extremely difficult to sort it all out especially if you getting many stories. I feel so bad for little Bryson. How often does he have his grandma with him? I can't even imagine him not having his mommy to see him grow up it just breaks my heart! I wish you lived closer I would help in some way. God Bless this little guy! Like I said if there is anything I can do no matter how small ask I am here......Theresa

[PaulaMommy]

Thank You Theresa. One other thing, well I guess 2, that we are concerned about is his size and growth of hair on him. He looks very "chubby" now. His appearance has really changed-every week he looks bigger to me. Sometimes I think he looks swollen, but then once I look at his whole body, really his whole body is just very "plump" looking now. They are decreasing his caloric intake, so hopefully the weight gain will slow down. Another thing Kimla was wondering about was that he is now covered in hair. I was thinking body temperature regulation had to do with this. Any experience with this?

OK the care meetings are EXACTLY what is needed. I'll tel Kimla about that-at least she'll have a "name" for it, for when she requests it:) Thanks for your input.

[Theresar360]

PaulaMommy, on Mar 12 2008, 01:37 PM, said:

Thank You Theresa. One other thing, well I guess 2, that we are concerned about is his size and growth of hair on him. He looks very "chubby" now. His appearance has really changed-every week he looks bigger to me. Sometimes I think he looks swollen, but then once I look at his whole body, really his whole body is just very "plump" looking now. They are decreasing his caloric intake, so hopefully the weight gain will slow down. Another thing Kimla was wondering about was that he is now covered in hair. I was thinking body temperature regulation had to do with this. Any experience with this?

OK the care meetings are EXACTLY what is needed. I'll tel Kimla about that-at least she'll have a "name" for it, for when she requests it:) Thanks for your input.

Paula, It is funny you mentioned the hair growth I was just asking my daughter about that the other day. Victoria has black fine hair all over her. She has it really thick on her back and sides. My daughter said it is due to the steroids they are giving her. Another thing I noticed is how much she has grown in length. She has grown 12 inches in 3 months. She has all the sudden gotten this emense growth spirt in length but is very thin she only weighs 27 pounds when she had the accident she was chubby and weighed a whopping 32 pounds. It is kind of funny the similarities these two babies have. I just wish there was some magic button we could push and they would be completely healed and back to normal. But unfortunately that can't now or ever happen and all we can hope for are miracles and those happen everyday. You are all in my prayers. Keep in touch.....Theresa

[kewlcatkez]

Hello,

Just a quick note as I am due out very soon - but the fine hairs/any bloating probably IS due to the Steroids ( corticosteroids) used for example to help with the respiratory tract healing etc. ( Your Daughter is right Theresa)..amongst other things...( I will try and elaborate later).

Also I am surprised that a qualified RN would not think of scheduling a case conference/care meeting/ multidisciplinary team meeting ( what we call them here), it should be a priority to try to achieve Holistic ( whole body) care. I would be asking for them to explain why this is not so.

With regards to Victoria's loosing weight it will be b/c she was without solid foods for such a long while. IV fluids and intravenous feeds do meet hydration and Vitamin intake needs but are difficult to regulate to ensure that there is growth. I am sure that very soon she will be gaining some weight. Also the trauma and fact that she may not 'feel' hungry is also a consideration when she is once again eating solids ( if she is not already~)

WITH re to Bryson, Gastrostomy Tube ( G tube) feeding is also a juggling act, but G tubes tend to be the opposite of Iv feeding and he tendency is to over feed with fats etc. They should be having a Dietician/nutritionist who is well versed in children to oversee his 'feeding ingredients'. I would also be asking them how his Liver profile etc is, is he over hydrated? Perhaps the fact he isn;t having adequate PT means that fluid is pooling in his tissues - PT/RoM exercises ( passive) will help the fluids to dissipate. Family members can assist with this as massaging his limbs gently will help. Of course its best to discuss with the Nursing/medical team.

HTH

Will stop by here later,

Take care,

K

[PaulaMommy]

Kimla requested the Care Meeting and is meeting with the Head Nurse this afternoon to discuss issues. She also contacted Shriners (SCI) 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.