9 replies to this topic

[PaulaMommy]

I couldnt go see Bryson last week b/c me and my family all had strep. Anyway, he had a good week, I think. He has tolerated sitting up better, still doesnt like the other vent. I think he's still on/likes the "servo." Excuse me if I dont get it right. ANyway, he still had the kidney stone...I'm still not sure what they were waiting on. But Monday it started hurting him (grinding teeth, blood pressure and pulse up,etc) and they did some tests and saw it had moved to his urethra. So they did emergency surgery/procedure to get it out. The doctor said it was successful. Theres no incision, so thats good.
I went up there to be there when he came back from OR as his grandparents are 3 hours away. He came back sleepy, but didnt seem to be in pain and slept when the nurse cathed him. He had alot of fluid the RT was trying to move and encouraging him to try to cough. Anyway pluse and BP were both down/normal when I left.
I kind of got upset bc the nurse told me that she is having trouble getting him to rest enough and wants me to ask the volunteers/church members not to visit him, only family. I have one volunteer in particular who volunteered to see him once a week, just sit with him a couple of hours, etc. She went last week for the first time and left when he got tired. 2 church members stopped by when she was leaving and just stayed for a second then left, but I cant think of any other time when he may have been overtired and had alot of visitors. And honestly, the church members will contune to pray for him, but probably wont be up there often. I understand she is trying to get him on a schedule and honestly the other kids in his room hardly ever have visitors, so maybe she knows something I dont. But still, I dont really understand nor agree with her completely. I asked her when was a good time that people could come (these are "approved" people who know the password, by the way) and she couldnt tell me b/c his naps are scattered. I just dont want to discourage people who are willing to give their time to sit with this child, if you know what I mean.
Anyway, for now, i just told them that they should save their visits until Bryson gets moved up to rehab and wont be in a ward setting, will be in private room, etc.

OK thats my rant for the day. I'm not super upset or anything. I know his primary nurse loves him and has been there from day one. But still...seems a little unfair to me.

Oh and movement wise-he's got a pretty strong squeeze in both hands, can raise both arms up and kinda wiggles his torso. He is having alot of spasms, but maybe they will decrease since the stone was taken out??

thanks for listening.

[edlee]

Any time, Hon,,,,that's why we're here.
ed

[ParaforGod]

Im so sorry to hear you all have been sick but Im so very glad to hear Bryson is getting better. Unless the visits are making Bryson get upset I don't see what the problem is. I think it is good for a child to know the people who love him is going to be there for him. I would think the visits would make Bryson more secure. Although working with children for nearly 20yrs. each child is different and reacts different. Anyway Im glad he is doing better and am praying for a speedy recovery.

[kewlcatkez]

PaulaMommy, on Feb 27 2008, 08:28 PM, said:

I couldnt go see Bryson last week b/c me and my family all had strep. Anyway, he had a good week, I think. He has tolerated sitting up better, still doesnt like the other vent. I think he's still on/likes the "servo." Excuse me if I dont get it right. ANyway, he still had the kidney stone...I'm still not sure what they were waiting on. But Monday it started hurting him (grinding teeth, blood pressure and pulse up,etc) and they did some tests and saw it had moved to his urethra. So they did emergency surgery/procedure to get it out. The doctor said it was successful. Theres no incision, so thats good.
I went up there to be there when he came back from OR as his grandparents are 3 hours away. He came back sleepy, but didnt seem to be in pain and slept when the nurse cathed him. He had alot of fluid the RT was trying to move and encouraging him to try to cough. Anyway pluse and BP were both down/normal when I left.
I kind of got upset bc the nurse told me that she is having trouble getting him to rest enough and wants me to ask the volunteers/church members not to visit him, only family. I have one volunteer in particular who volunteered to see him once a week, just sit with him a couple of hours, etc. She went last week for the first time and left when he got tired. 2 church members stopped by when she was leaving and just stayed for a second then left, but I cant think of any other time when he may have been overtired and had alot of visitors. And honestly, the church members will contune to pray for him, but probably wont be up there often. I understand she is trying to get him on a schedule and honestly the other kids in his room hardly ever have visitors, so maybe she knows something I dont. But still, I dont really understand nor agree with her completely. I asked her when was a good time that people could come (these are "approved" people who know the password, by the way) and she couldnt tell me b/c his naps are scattered. I just dont want to discourage people who are willing to give their time to sit with this child, if you know what I mean.
Anyway, for now, i just told them that they should save their visits until Bryson gets moved up to rehab and wont be in a ward setting, will be in private room, etc.

OK thats my rant for the day. I'm not super upset or anything. I know his primary nurse loves him and has been there from day one. But still...seems a little unfair to me.

Oh and movement wise-he's got a pretty strong squeeze in both hands, can raise both arms up and kinda wiggles his torso. He is having alot of spasms, but maybe they will decrease since the stone was taken out??

thanks for listening.

Hi PaulaMommy,

I am going to be the bad nursey type when I say this, but sometimes just having visitors can be so draining for the child..as many will not rest sufficiently when people are there, So they wind up exhausted, not recuperating. It sounds silly but I have seen it time and time again. Its good to have visitors, but I can understand the nurses asking for them to be family...

There is also the worry that whilst vulnerable, the more people who come outside of the family, the more chances of infection etc. Some people would not think to stay away if their child for instance had a viral infection, yet that could still be passed to Bryson even if the visitor ( the child with an infection's mum) hasn't got symptoms.. So factors like that come into play too. I know you say there was only a hand full of times he appeared tired when he had visitors, yet I have nursed people seriously ill with Myocardial infarctions or CCF and they have appeared very alert and not a sign of fatigue..yet when the visitors go they get so drained..its as if they make a subconscious effort like no other...
At the same time, I do not think that the Nurse should say things like that, without expanding and explaining exactly what she means. Perhaps she should clarify..

I must say that I am glad that they finally did something about the kidney stone,. It is diheartening and awful that they claimed he was not in pain before, yet you posted here and the things you told us clearly pointed to severe discomfort and pain...The tests they were waiting for were probably general panels to ensure he was Biochemically ok for any procedure and also to check for calcium levels and uric acid levels which could point to a possible cause for a stone and affect what they did and what/if further steps need to be taken..

Its fabulous that Bryson has a good grip, it bodes well for his future ability to care for himself to a certain extent. At such a distressing time, the strength of little ones is amazing. They are resilient and unite others oozing strength to others. I am sure that he will get used to the new vent, and hopefully get stronger and take more breaths each day. Kids hate routine to be altered so that is something that has occurred with the vent - something different.

Thanks for sharing,

Take care,

K

[PaulaMommy]

K
Thank You for explaining that. it really makes sense, what you are saying, and i see things in a different light. Even when he doesnt have visitors, he has trouble sleeping sometimes. She said they had to put up partitions to decrease his stimuli at night.

Thanks everyone.

[kewlcatkez]

PaulaMommy, on Feb 28 2008, 04:57 AM, said:

K
Thank You for explaining that. it really makes sense, what you are saying, and i see things in a different light. Even when he doesnt have visitors, he has trouble sleeping sometimes. She said they had to put up partitions to decrease his stimuli at night.

Thanks everyone.

Hi PaulaMommy,

Glad that it came across in the vein that I intended, and that it helped in some way. Keep us updated on Bryson's continued progress,

Take care,

K

[DaveP]

PaulaMommy, on Feb 28 2008, 04:57 AM, said:

K
Thank You for explaining that. it really makes sense, what you are saying, and i see things in a different light. Even when he doesnt have visitors, he has trouble sleeping sometimes. She said they had to put up partitions to decrease his stimuli at night.

Thanks everyone.

Hi PaulaMommy

I'm a C6/7 since I was 23 and have managed to acheive total independence. Lived alone, drive, travel alone, etc, etc...

It's really important for your son to make the most of his rehab and push himself to acheive the most he can, so he too can achieve the maximum level of independence. If he wants, I'll be more than happy to email him.

Regards
Dave

[kewlcatkez]

DaveP, on Feb 28 2008, 02:14 PM, said:

PaulaMommy, on Feb 28 2008, 04:57 AM, said:

K
Thank You for explaining that. it really makes sense, what you are saying, and i see things in a different light. Even when he doesnt have visitors, he has trouble sleeping sometimes. She said they had to put up partitions to decrease his stimuli at night.

Thanks everyone.

Hi PaulaMommy

I'm a C6/7 since I was 23 and have managed to acheive total independence. Lived alone, drive, travel alone, etc, etc...

It's really important for your son to make the most of his rehab and push himself to acheive the most he can, so he too can achieve the maximum level of independence. If he wants, I'll be more than happy to email him.

Regards
Dave

Great post DaveP, the only thing is I am not sure an 18 months old will be emailing yet...but hey kids of today are very technical!!

Sorry couldn't resist!

PaulaMommy, next time you see Bryson and his immediate family, if not already, why not give them the details of this forum? Mind you perhaps they haven;t time right now.

I look forwards to more updates,

K

[PaulaMommy]

Hi Dave
Bryson is an extended family member. It is encouraging to hear of your progress and success....way to go!!

I send his grandma links to the site and my posts so they can read everything. I hope they eventually can get on here and get much needed support and encouragement.

Thank You!

[DaveP]

kewlcatkez, on Feb 28 2008, 02:17 PM, said:

DaveP, on Feb 28 2008, 02:14 PM, said:

PaulaMommy, on Feb 28 2008, 04:57 AM, said:

K
Thank You for explaining that. it really makes sense, what you are saying, and i see things in a different light. Even when he doesnt have visitors, he has trouble sleeping sometimes. She said they had to put up partitions to decrease his stimuli at night.

Thanks everyone.

Hi PaulaMommy

I'm a C6/7 since I was 23 and have managed to acheive total independence. Lived alone, drive, travel alone, etc, etc...

It's really important for your son to make the most of his rehab and push himself to acheive the most he can, so he too can achieve the maximum level of independence. If he wants, I'll be more than happy to email him.

Regards
Dave

Great post DaveP, the only thing is I am not sure an 18 months old will be emailing yet...but hey kids of today are very technical!!

Sorry couldn't resist!

PaulaMommy, next time you see Bryson and his immediate family, if not already, why not give them the details of this forum? Mind you perhaps they haven;t time right now.

I look forwards to more updates,

K

lol...