well were here doing the IVIG

[melanie]

Well were here and hes got the IVIG of course we see nothing yet they put it in at around 2:45 pm hes doing ok tightness in his chest md says its a side effect but anyway Im hoping for the best

Melanie

[colleenrn]

Glad you are there and hope everything goes OK. Good luck!!

Colleen

[melanie]

Glad you are there and hope everything goes OK. Good luck!!

Colleen

 

Thanks

[melanie]

anyone know dr ks dosage I just want to compare

[dee45]

Hi Melanie,

I forgot today was the day. good luck keep us posted hope everything goes smooth.

 

Deanna

[Suzan]

GOOD LUCK, thinking of you guys...

 

Susan

[FallingApart]

Good luck! Please keep us posted and let us know how everything goes. Will you be spending the night or going home and coming back again tomorrow?

[KeithandElizabeth]

Hi Melanie:

 

We also had our first day of IVIG for our son today. Things went so smoothly for us. We came back home for the night and then we go back in tomorrow morning. It is hard to tell if we see any changes yet. My husband did point out to me as I mentioned that our son seemed more "present", that he is on Tylenol and Benadryl, both anti-inflammatories.

 

I wish you all a good day tomorrow!

 

Elizabeth

[melanie]

Hi Melanie:

 

We also had our first day of IVIG for our son today. Things went so smoothly for us. We came back home for the night and then we go back in tomorrow morning. It is hard to tell if we see any changes yet. My husband did point out to me as I mentioned that our son seemed more "present", that he is on Tylenol and Benadryl, both anti-inflammatories.

 

I wish you all a good day tomorrow!

 

Elizabeth

 

 

Hi

Well day 1 IVIG is done we dont see anything I just saw the md he doesnt think we will see much while we are here He kindof made me feel a bit sad well maybe its the lack of sleep we are staying in the hospital for 3 days doing this .His 1st dose was 800 ( ml?) over 10 hrs but it really lasted untill about 4:30 am all night with the BP temp the alarm on the IVIG machine long long night They wont hook him back up again untill 2:30 today about 24 hrs since the 1st one .So we will watch movies untill then hopefully I will nap Im tired and so is he. Ill write more later thanks for the prayers and thoughts I look foward to seeing them.

Melanie and Danny

[melanie]

Hi Melanie:

 

We also had our first day of IVIG for our son today. Things went so smoothly for us. We came back home for the night and then we go back in tomorrow morning. It is hard to tell if we see any changes yet. My husband did point out to me as I mentioned that our son seemed more "present", that he is on Tylenol and Benadryl, both anti-inflammatories.

 

I wish you all a good day tomorrow!

 

Elizabeth

 

 

Hi

Well day 1 IVIG is done we dont see anything I just saw the md he doesnt think we will see much while we are here He kindof made me feel a bit sad well maybe its the lack of sleep we are staying in the hospital for 3 days doing this .His 1st dose was 800 ( ml?) over 10 hrs but it really lasted untill about 4:30 am all night with the BP temp the alarm on the IVIG machine long long night They wont hook him back up again untill 2:30 today about 24 hrs since the 1st one .So we will watch movies untill then hopefully I will nap Im tired and so is he. Ill write more later thanks for the prayers and thoughts I look foward to seeing them.

Melanie and Danny

 

 

Hi Elizabeth

 

Good luck to you too How come you guys get to go home ? We have to stay in the hospital the whole time.Where are you what state Im in NJ Melanie

[dee45]

Hi Melanie,

hang in there I can only imagine how drained you must be. your in my prayers.

 

Deanna

[melanie]

Hi Melanie,

hang in there I can only imagine how drained you must be. your in my prayers.

 

Deanna

 

 

Hi second round is going on now he is going to get 3 rounds I didnt tell him yet he wants to go home we have to stay in the hospital during the treatment hes sleeping now its 4 :15 pm I have to go back to work tomorrow so my husband will be taking over.iM GOING TO HAVE A HARD TIME WITH THAT God works in strange ways.Im home all summer and then finally he gets this and I cant be here the whole time.But his fathers great so .I dont love the hospital but hes been really great

 

Melanie

[KeithandElizabeth]

Hi Melanie:

 

We are using a Pediatric Oncologist in Denver who has 5 IVIG infusion rooms for his cancer and crohn disease patients. They never keep their IVIG patients overnight. We are now home after our last day. I believe we are now on the roller coaster ride of watching our son and his symptoms to see if he will heal. I know that this can be a bumpy journey.

 

You all must be so tired being in the hospital and being awake all night long!!! How is your son handling the IVIG? Has he had any negative reactions?

 

Elizabeth

[melanie]

Hi Melanie:

 

We are using a Pediatric Oncologist in Denver who has 5 IVIG infusion rooms for his cancer and crohn disease patients. They never keep their IVIG patients overnight. We are now home after our last day. I believe we are now on the roller coaster ride of watching our son and his symptoms to see if he will heal. I know that this can be a bumpy journey.

 

You all must be so tired being in the hospital and being awake all night long!!! How is your son handling the IVIG? Has he had any negative reactions?

 

Elizabeth

 

 

Hi

Dannyhad his last dose of the IVIG today actually he is finishing the bottle as we speak he had 3, 11 hr infussions .The MD is letting him out of the hospital soon its about 9pm here in nj .I cant wait for himto get home my husband is with him .I didnt see anything at all.Im depressed How long can it take until you see something Please help me .Melanie

[dee45]

Hey Melanie,

how are things?? How is your son doing? Hope you can all get some rest now that your home.

 

Deann