Off topic -Scary experience with son

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Off topic -Scary experience with son

Postby samarasmom » Tue Sep 21, 2004 07:08 pm

Well many dont know much about my 2 yrs old,
Isaiah is 2 ( duh) and has a condition called Congenital Infantile Myofibromatosis,Its a tumor disorder that eats his muscle and nerves in his body.He lost most of his bicep muscle, it ate thru a spinal nerve( they had to clip it off to avoid paralyzing him. And he had one on one side of his skull that had ate a hole in his skull and was putting pressure on his brain. He somehow healed from the tumor of his head which the docs said was a miracle since they watched it for over one year and it kept growing and one day was gone.

Anyways he had a MRI today to check for more. We just got home from U of M and he had some vomiting from the Anesthesia but he is okay. It was a scary MRI. Me and the anesthesiologist got into an arguement. She and another lady were putting him to sleep and he started gasping for air and you could see his breastbone as he was breathing and his knees was buckling up. I cant even explain how scary and wrong it looked. I saw the monitor flatline twice and freaked. They asked me to leave and I told them H^&* no not with my son being like that, well she didnt like that very much. Maybe it was normal like she said BUT in the 2 1/2 years that my child has gone thryu this NEVER has he acted like that. I was terrified. They also gave him Valium for the first time so I wont let them give him that in case that was why he acted like that.

I needed to vent to some one. He is home and doing great now. I will know the results next wk sometime,and will let u know if they find some more tumors or not. Please pray that they dont,

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
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Re : Off topic -Scary experience with son

Postby kylesmom » Tue Sep 21, 2004 07:37 pm

OMG Samara, I had no idea. How scary to have to go through something like that. I have never even heard of Congenital Infantile Myofibromatosis. I can't believe they asked you to leave the room- I never would have left! [:(!]

I am sending you lots of prayers for good MRI results. Hang in there.

Jennifer 33
Kyle born 8-13-03 @ 38 weeks (PE and Class I HELLP)
Connecticut Coordinator
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Re : Off topic -Scary experience with son

Postby kylesmom » Tue Sep 21, 2004 07:39 pm

OK, SANDRA- I am tired and I can't believe I just called you Samara. SO sorry! How is she doing lately?

Jennifer 33
Kyle born 8-13-03 @ 38 weeks (PE and Class I HELLP)
Connecticut Coordinator
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Re : Off topic -Scary experience with son

Postby mada » Wed Sep 22, 2004 06:46 am

Sandra,
How scary for you. I would have acted the same way!! It's your baby!! That was not very sensitive of the anesthesiologist. I am so sorry you are going through this. I pray that there are no tumors~

Mada Harpster-moderator for pregnant again

Sam 6-29-00 36weeks P.E.
Ben 11-03-01 No P.E.
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Re : Off topic -Scary experience with son

Postby wcarder » Wed Sep 22, 2004 07:23 am

Sandra -

How frightening! I am so sorry that the antisthesiologist was so insensitive, and that you and your baby boy have to deal with this scary disease!!! I can't even imagine what you must be going through. so, so sorry. I hope the MRI bares great news, and that Isaiah is doing better. What a strong woman you must be. I am 23 as well and am trying to put myself in your shoes...You are incredible, taking care of 3 babes, one with a terrifying illness, and a newborn who's giving you a run for your money as well! (It's a girl thing, by the way, TRUST me....) Oh, I really wish you the best, hun. Stay tough - i KNOW you are.

Wendy

DD~ Kenzie Celeste, 30 weeks GA, severe PE
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Re : Off topic -Scary experience with son

Postby tanya » Wed Sep 22, 2004 03:04 pm

Sandra,

Your post totally gave me goosepimples. How scary for you and your family to have to see your son put through the ringer. I too would have stayed despite what any anesthesiologist or doctor would have said. You have every right to be there. If your kids can't count on their family(particularly their mom) to stand up for them than who can they count on. I am so sorry you are having to go through this. I will be praying for Isaiah and the rest of your family. Hugs!!!

Take Care,
Tanya
Jason(DH)
Leah born 2/4/99 at 34 weeks ...PIH
Miscarriage 10 weeks
Grant born 3/29/01 at 31 weeks... Severe PE
Miracle #3 EDD 01/27/05
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Re : Off topic -Scary experience with son

Postby samarasmom » Wed Sep 22, 2004 03:45 pm

Thanks ladies. I have to keep this short. I will let u know when the results come back. Also I updated him on another post with samara on how they both are doing.
I have been dealing with this since Isaiah was 2 wks old. I have seen many kids worse off and knowing that he has it so easy is what gets me thru it. Ive always said to do what u have to do,no matter what. I love him and will never let this defeat him. He fights too that is why he is such a little stinker too,
I have to watch my Best friends daughter go thru tumors and cancer in her brain. We both have the same Neurosurgeon.

Thanks again for the support

jennifer. Have u ever heard of Neurofibromatosis. It is in that family but milder. alot of people have never heard of it. I see docs that have been around 20+ years and have had select few cases or never heard of it at all and have to look it up. Alot are amazed.
Samara has a 50-50 chance of getting it. She is checking out okay right now so her chances are going down

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
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