The radiologist sent a preliminary report to our ped saying that there was no change in her MRI compared to the one in 2004. That is wonderful IF it is accurate.The reason we are having the MRI sent out to a neurosurgeon in Denver is because we can not trust the interpretation from where we had it done at.
For years the ortho doc told me she didn't have scoliosis,,for years the cardi said her heart defects were "fine" and didn't need further testing, when in reality it did and required heart cath balloon,,Ent removed the tubes in her ears stating that she was at an age that she should have outgrown ear infections when she had a cleft palate,,4 craniofacial plastics surgeons would NOT fix her cleft, one even said he wouldn't touch it with a 10 foot pole!!!!!
These are just some of the reasons we switched to doctoring in Denver instead.
This does leave us at a loss for what is going on. The ped called me when we were on the road and said he still wants us to see either neurosurgeon or neurology in Denver because he still feels this is neurologically based. He is going to call the neurosurgeon on Mon. to discuss it with him.
I am exhausted, stressed, on the verge of meltdown, and thoroughly disgusted with our experience today!!!
We were to check in at 8am which we did,, had to find our own way from building 1 to building 4 to the 6th floor to the ped sedation section with only the "advice" to keep following the signs. All the while carrying 6 bags and pushing Celia in the wheelchair!!
We got there and found out that even though check in was at 8 she wasn't on the MRI books until 11!!!!!!!!!!!!!!! At 11:10 they started her IV and sent us down to MRI, down in the basement and back across the hospital. Got there and they had "forgotten" to give her the Robinol. Timing is everything and this just really screwed things up.
Next the MRI tech looks at Celia for awhile and says "well we need a nurse in here with us and we didn't know that".........She calls in a nurse who has NO CLUE that she was supposed to be there in the first place!!!!!!
So they start to sedate her,,well the Robinol has NOT had time to kick in so here she is with a suppressed cough, her usual amount of slobber(TONS) laying on her back shooting guisers of slobber out her trach, blue lips and dropping sats and the MRI tech is itching to get going as I am desperately trying to suction it all out before she DROWNS!!!!!!
Finally the Robinol kicks in some, 4 doses of drugs to knock her out and they slide her in, start the MRI and here comes the guisers out of her trach, not even kidding,,it was shooting up at least 4 inches into the air just like a water fountain. Luckily once that one was over she made it the rest of the way through the MRI fine.
Oh by the way no bed for transport, I took her down in her wheelchair and for the way back to her room I had to pick all 80lbs of dead weight, hold her, sit in the wheelchair and be wheeled back to her room!!
We did not get out of the hospital until almost 4pm, partly because I threw a fit to get a preliminary report before we left the hospital. BUT I GOT IT BY GUM!!!!!!! I just hope I can trust it.
NEVER GOING BACK THERE AGAIN EVEN FOR A SEEMINGLY SIMPLE TEST!! We will just wait until we can get in at Denver!!!
For years the ortho doc told me she didn't have scoliosis,,for years the cardi said her heart defects were "fine" and didn't need further testing, when in reality it did and required heart cath balloon,,Ent removed the tubes in her ears stating that she was at an age that she should have outgrown ear infections when she had a cleft palate,,4 craniofacial plastics surgeons would NOT fix her cleft, one even said he wouldn't touch it with a 10 foot pole!!!!!
These are just some of the reasons we switched to doctoring in Denver instead.
This does leave us at a loss for what is going on. The ped called me when we were on the road and said he still wants us to see either neurosurgeon or neurology in Denver because he still feels this is neurologically based. He is going to call the neurosurgeon on Mon. to discuss it with him.
I am exhausted, stressed, on the verge of meltdown, and thoroughly disgusted with our experience today!!!
We were to check in at 8am which we did,, had to find our own way from building 1 to building 4 to the 6th floor to the ped sedation section with only the "advice" to keep following the signs. All the while carrying 6 bags and pushing Celia in the wheelchair!!
We got there and found out that even though check in was at 8 she wasn't on the MRI books until 11!!!!!!!!!!!!!!! At 11:10 they started her IV and sent us down to MRI, down in the basement and back across the hospital. Got there and they had "forgotten" to give her the Robinol. Timing is everything and this just really screwed things up.
Next the MRI tech looks at Celia for awhile and says "well we need a nurse in here with us and we didn't know that".........She calls in a nurse who has NO CLUE that she was supposed to be there in the first place!!!!!!
So they start to sedate her,,well the Robinol has NOT had time to kick in so here she is with a suppressed cough, her usual amount of slobber(TONS) laying on her back shooting guisers of slobber out her trach, blue lips and dropping sats and the MRI tech is itching to get going as I am desperately trying to suction it all out before she DROWNS!!!!!!
Finally the Robinol kicks in some, 4 doses of drugs to knock her out and they slide her in, start the MRI and here comes the guisers out of her trach, not even kidding,,it was shooting up at least 4 inches into the air just like a water fountain. Luckily once that one was over she made it the rest of the way through the MRI fine.
Oh by the way no bed for transport, I took her down in her wheelchair and for the way back to her room I had to pick all 80lbs of dead weight, hold her, sit in the wheelchair and be wheeled back to her room!!
We did not get out of the hospital until almost 4pm, partly because I threw a fit to get a preliminary report before we left the hospital. BUT I GOT IT BY GUM!!!!!!! I just hope I can trust it.
NEVER GOING BACK THERE AGAIN EVEN FOR A SEEMINGLY SIMPLE TEST!! We will just wait until we can get in at Denver!!!
Celia checking out the view from her hospital room.
Snugglin' with Nana.
1 comment:
Oh Gretch,
I am so sorry that both Celia and yourself had to go through that.
Quite ridiculous if you ask me.
Why is that sometimes hospitals forget that they are actually working with people and not just objects.
I hope you will find some sort of answer with regards to Celia, so you are not left wondering.
Have a nice warm bubble bath and get lost in your favorite novel right now.
Hugs from Canada,
Lisa
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