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Prayers Needed for AmeC and Toren


Forum: Pregnancy and Motherhood After Loss

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  #1  
May 20th, 2014, 06:43 AM
melissalaw's Avatar Platinum Supermommy
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I just saw on facebook that Amy had to take Toren to the ER. There was nothing else on there about why so just send her some good thoughts and prayers.



She posted last week that she thought Toren had something wrong with his skull so I'm thinking the ER visit might be related to that. I'll update if she posts anything else.


Amy if you see this I'm praying hard for Toren's healing and for you sweetie.
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  #2  
May 20th, 2014, 08:01 AM
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Oh no! I hope everything is ok! Prayers!
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  #3  
May 20th, 2014, 08:13 AM
kaylakay's Avatar Love Being A Mommy
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Hope everything is okay!
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  #4  
May 20th, 2014, 08:15 AM
MoonAngel702's Avatar ~Staying Positive~
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I hope everything will be just fine! Please KUP if you hear anything. I'm super worried. Praying that Toren will be ok!
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  #5  
May 20th, 2014, 08:18 AM
melissalaw's Avatar Platinum Supermommy
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Amy just posted an update:

JUST got home.... everything is fine but I will update in a few minutes. One of the worst experiences I've had in my life!




Glad to see that they are home and he is ok. I'll post her update when she posts it.

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  #6  
May 20th, 2014, 10:31 AM
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Oh goodness. Glad they are home!
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  #7  
May 20th, 2014, 09:44 PM
Boos Moo's Avatar Mega Super Mommy
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Sending prayers to them. Glad they are home. Going to the ER with a baby is so scary.
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  #8  
May 21st, 2014, 05:23 AM
lelila's Avatar Mega Super Mommy
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My heart dropped when I saw this post. I'm glad they are home and everything is ok. Anxious for updates - T&Ps for both Ame and Toren!
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  #9  
May 21st, 2014, 08:01 AM
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Have their been any updates?
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  #10  
May 21st, 2014, 10:51 AM
Ame C's Avatar Every breath is a gift.
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Oh ladies... this whole thing has been a total nightmare. Sorry to leave you ladies in the dark, but I've had so much on my plate. I will copy/paste my big long facebook updates here, instead of trying to re-type the whole story.


Where do I begin? Took Toren to the pedi again to show her his pupils. One is dilated more than the other (been like that since I can remember) but his pedi didn't say anything about it at his last appointment and when I called to ask about it they wanted me to bring him back in for his pedi to look at him. First off, when I got there they had no idea WHY I was there. They wrote down in his file that it was because his nose had discharge. Umm.... no. He's never been sick at all so that shouldn't be in his file, period. She looked at his eyes and acted like everything was okay. That is until I asked her to look at Toren's chart and tell me how much his head size and pupils have changed from all his previous visits. They misplaced some of his records, couldn't answer my question and was trying to say the records weren't there because they didn't see him those days. WHAT!? I got in a bit of an argument with the woman and she started raising her voice to me while man-handling Toren. She flipped him over in one hard swoop on the table, he started screaming crying, then she started pushing on his stomach sooooo hard I swear she could feel his spine!! I said "You're being way too aggressive with him!" Then she gave me this speech about how she's been doing this for 10 years and never had any complains about how she handled the children. I started bawling and we yelled at each other then she told me Toren's circumstances were critical, it was an emergency. This woman actually told me I could have HOURS or DAYS before Toren died from his condition and wrote me a referral to Texas Children's Hospital. I immediately took him to the ER and that's where the TCH nightmare began. It was packed full of sick kids and they don't have a separate area for the well babies to wait. We asked how long the wait was going to be and were quoted and hour to an hour and a half. That seemed kind of long to me..... but no, we ended up waiting 4 hours (sitting outside on the sidewalk so Toren wouldn't catch all those germs) just for them to look at him. Waited another 1.5 hours and finally got him into the CT scan, which took literally 5 minutes or less. Then was told it would take an hour max for them to get the results of the scan and review it with me. We waited another 4 hours before they called us back into a room. Keep in mind we had been sitting on the sidewalk for a total of 9.5 hours. They had us sit in the room for 2 hours before FINALLY seeing a neurologist. Nice guy but not the guy who would be working with Toren, and guess what.... he said I had to wait for a different neurologist to show up and would be 15 minutes, 30 minutes maximum! This is 11.5 hours total now for nothing (besides the CT scan which we were still waiting for most of the results). We waited 30 more minutes. A different person told us to hang in there it would be only 15 more minutes... they promise. We were about to walk out at this point, told the people they had exactly 15 minutes and then I wanted our discharge papers. Did I mention that there was a shift change and none of the people I had talked to prior were there anymore? I had to have been asked at least 6-7 times what we were there for. ARE YOU FREAKING KIDDING ME?!?! ARRRRRRGGGGHHHH!!!!! I told them we absolutely had enough! I demanded the CT scan results and discharge papers. I told them to their faces I'm never bringing my child there again and you get better service at a free clinic!! I got a copy of his CT scan on a cd (or at least it better all be there, I haven't checked the disc yet). I never saw an xray picture while I was there but was told yes he has sutures that are fused prematurely and would require surgery but that it was not "critical" at this time. It does need to be taken care of by 6 months if we go with the endoscopic option, which I think is what we are leaning towards. That's pretty much all I know. So now I have to call this group of people they want me to meet with; a neurologist, plastic surgeon, physician and a whole bunch of other people... and make an appointment with them to discuss our options and the game plan. I absolutely cannot believe Texas Children's Hospital is supposed to be the best in the world... that place was hell!! So at least all that is out of the way now, I guess, but it was soo soo soo horrible! I'm going to check out the cd and see what his scan looked like.


another update:
I am without a doubt going to file a complaint against his pedi. That woman is an incompetent witch!
The cd works. It has short little videos of his scan from different angles and stuff. Yea, I don't know exactly what I'm looking for... or at, but it's all there on the disc. Not sure what neurosurgeon I want to entrust the life of my child with, but Dr. David Jimenez is on the top of my list as of right now. He's in San Antonio.

Oh forgot to mention. The neurologist that I talked to at Texas Children's Hospital said Toren's larger pupil could definitely be a cause for concern related to the cranio issue, but, since I said I've noticed it from practically day 1 he didn't think the 2 things were related. His pupil responds well to light and that some people just have different sized pupils. He said about 40% of adults do. It's just one of those things that they don't really understand why that happens but doesn't seem to cause any problems.

The neurologist I talked to also said that if Toren's pedi was a good one, she should have been able to catch his sagittal cranio issue by 2 months old.

My poor innocent little peanut
Thank you Melissa for posting this thread. And a big thank you ladies for all the thoughts and prayers!!
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  #11  
May 21st, 2014, 11:09 AM
EverydayJoy's Avatar Platinum Supermommy
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I already talked to you on FB, but I wanted to say UGH about your pedi that should have caught this at 2 months old. That would have saved you SO much trouble if it had been something you could have known about all along and had more time to follow it and figure out the best plan of action instead of "OMG GO TO ER!!!" Gah she should have her license taken away!!!
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  #12  
May 21st, 2014, 11:16 AM
Ame C's Avatar Every breath is a gift.
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She really should Joy. I hope she gets in SOME kind of trouble once I report her.
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  #13  
May 21st, 2014, 11:17 AM
melissalaw's Avatar Platinum Supermommy
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I definitely agree about making a complaint against Toren's pedi. What a terrible dr, I can't even imagine. I know this is such a stressful situation that you are dealing with, just know that we are here whenever you need us. Good Luck on finding a good neurosurgeon.

i wish your dr had found it at 2 months of age. I know Christian's pedi is always checking out his skull and I guess that is what she is looking for.
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  #14  
May 21st, 2014, 03:00 PM
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Oh my gosh, what an exhausting, horrific day. I'm so sorry.
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  #15  
May 21st, 2014, 03:05 PM
EverydayJoy's Avatar Platinum Supermommy
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Quote:
Originally Posted by melissalaw View Post
i wish your dr had found it at 2 months of age. I know Christian's pedi is always checking out his skull and I guess that is what she is looking for.
YES!! My older son, his doctor by way of greeting would just feel his skull. How hard would it be to check??? They're supposed to do that every time.
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  #16  
May 21st, 2014, 03:40 PM
Ame C's Avatar Every breath is a gift.
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They always take measurements of his head with a tape measure. That's why I asked his pedi how his head has changed from all the other appointments, but it was like they didn't write them all down. Then she is going to act like the measurements weren't there because those appointments didn't exist??....wth??!! It's ridiculous!
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  #17  
May 21st, 2014, 08:50 PM
Boos Moo's Avatar Mega Super Mommy
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Oh Ame I don't know how you held it together as well as you did. I'd probably have been escorted out by security. I'm so sorry that all of that is going on and that you had such a horrible experience. Yikes is all I can think of. Hugs and prayers for Toren. Please keep us posted.
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  #18  
May 22nd, 2014, 07:35 AM
lelila's Avatar Mega Super Mommy
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UGH Ame, what an ordeal. It sounds like you are surrounded by incompetence. What did the neuro at TCH mean by "sutures fused prematurely"? It sounds like he had surgery.

I hope you get an excellent neuro and get everything sorted out quickly and get some peace of mind. Hugs to you and Toren!
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  #19  
May 22nd, 2014, 08:31 AM
MoonAngel702's Avatar ~Staying Positive~
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Wow, Amy I am SO sorry to hear you had to go through all of that. How horrible of a day and what horrible people you had to deal with! I'm also sorry to hear about poor little Toren. Keeping you both in my thoughts and prayers. I hope everything goes perfectly if sweet little Toren does end up needing the surgery. Please keep us posted.
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  #20  
May 22nd, 2014, 11:29 AM
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Amy, I am so sorry your pedi is so awful. She should be checking his sutures at every appointment anyways. Both of my different peds offices did with both girls. We have a family friend whose 4 month old had surgery to fix his fused sutures, he is a healthy, thriving teenager today.

Reagan had the pupil thing when she was a baby. I really noticed it at 2 months. My pedi sent me straight to the children's hospital ophthalmologist to have her checked. They discovered nothing wrong but they did follow up visits a couple of times until she was 2 just to make sure. She is a healthy 5 year old without any sight or any other issues. Thank goodness our children's hospital (AI DuPont) is not like the one you had to go to...how awful! I would be livid!!
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