IVIG update day 1

[bgbarnes]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

[mandyknowles]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

 

 

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow

[bgbarnes]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

 

 

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow

I left around 10:45- Did you see where they do the IVIG?

Sorry I missed you too! We were really pleased with how they handle it and Cindy was GREAT!

Brandy

[peglem]

Oh, Brandy, that's a wonderful story! I mean, I'm sorry it started rough, but glad you were able to get away from work to help. And, your "mighty mommy" skills accomplished what 2 grown men could not!

[mandyknowles]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

 

 

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow

I left around 10:45- Did you see where they do the IVIG?

Sorry I missed you too! We were really pleased with how they handle it and Cindy was GREAT!

Brandy

 

 

no i didnt see where they do it...i am realy glad they were good with yall...

[saidie10]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

 

So glad you were able to be there Brandy! Sending positive thoughts your way for a wonderful experience tomorrow and a speedy recovery for your little one! We will need to talk tomorrow night!

[tapiash]

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too.

He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit.

 

The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that!

 

He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided.

One down and one to go!!

Brandy

 

 

That is one of the things I noticed the most post steroid burst was the interaction my son had with his sisters. He played dolls with the baby. He was the farmer. How is your son doing today? We just finished our 1st IVIG. It went well. Thank God.