We took Luke to have an MRI with deep sedation at the Children's Hospital in Macon, Georgia. Brad and I both questioned why we were doing this, even the day of the MRI. They say hindsight is 20/20 and I would have to agree. This is what we experienced...
Luke was scheduled to have the procedure at 1 in Macon, so we arrived at the hospital an hour in advance. We thought the actual procedure was at 1, but later found out it wasn't until 3. (They just get you to arrive 2 hours before your scheduled time.)
The Children's Hospital~staff, LPNs, RNs, blood techs, life therapists and doctors were FABULOUS with Luke and with us. I cannot give them enough credit for getting us through this day.
They gave Luke some medicine in a cream form that numbed his skin. This made it easier for the IV. (lots better than in the past) It is still pitiful seeing him being stuck like a pin cushion, though. :( I promised him this would be the last time when they were doing it.
There were lots of children in the PICU. Too many sick babies~made me grateful that we are only having to experience this to find answers, not because Luke was actually physically ill. So many had cancer and needed chemo treatments. It definitely was a very humbling experience. We got to see Bass Pro Shop pass out fish pillows to all of them. Luke made friends with these kiddies and brought a little joy to their day, too~making them laugh at all of his gestures and silly faces. :) He showed them all of his tricks!
We took Luke to the MRI machine and were able to go in with them. I am so glad that we did~or we wouldn't have been there to see what happened when he was given the medication for the deep sedation.
Because Luke is allergic to eggs, they couldn't use the medicine that they prefer and usually use to sedate children. They used 3 different medications~1 made him laugh and giggle and the others had to be done in increments of 5 mg~these just made him very "drunk" and he couldn't hold his head up.
He still wouldn't really go under though and when they lied him on his back, he began to cough (an awful sound, almost like he was going to choke) This went on for about 1 and a half hours before the Pediatric Intensivist said enough~I could tell that the pediatric nurses and the MRI nurse wanted to just put him in the tube, but thankfully Dr. Katie put her foot down.
They couldn't get a good read on his vitals and had already given him the maximum dose of the medication. She said she didn't want to have him seize or have to intibate~and WE TOTALLY agreed. She looked at us as she was holding Luke over her shoulder and had just kissed his forehead and said~I'm sorry, but we'lljust have to try this again when he isn't coughing. If we could lie him on his side, maybe we could get it done, but the MRI people said it wouldn't work that way.
We got to talk to Dr. Katie (at length) about Luke (his health, diagnosis of CAS and SPD, insurance problems, therapy) and why we were doing the MRI. She couldn't believe that the doctors didn't just code his therapy as trauma or congenital anomalies~and we agreed~we can't either. She gave me her email and said that she would write or sign whatever we needed ;)
So, we didn't get an MRI~but we did meet some really COOL people and have a doctor on our side.
When Luke woke up at 5, we gave him a breathing treatment in the PICU. They were concerned with the cough that now sounding like the "crup". We were discharged about an hour later and went to get that sweet baby the waffles he had been asking for all day (he hadn't eaten since 7 pm and hadn't had anything to drink since 10:30 am). It was so hard to see him asking for a bah-bah or some wah-wahs and not be able to give them to him.
At dinner, Luke began having trouble breathing~it was very labored and scared us. Luke was also still very "out of it". We boxed up our food and headed back to the hospital for them to check him~we didn't want to get back on the road with him being this sick and us not knowing if the deep sedation had caused this. (I did call nurse triage, but they were having a shift change and told me to call back)
So, we went back to the Children's Hospital. (Better to be safe, than sorry~right?)
Two nurses came down and assessed Luke in our car, then they called Dr. Katie. Another doctor (Dr. Clark) came down and checked him, too. After another hour or so, they let us go home~but home was still 2 hours away.
Luke continued to cough on the trip home and into the night.
Brad and I decided that we won't be doing any other tests on Luke. We have put this baby through too much already. Sometimes you just need to know when to say when~and this is the time.
I plan on calling our neurologist and letting him know our decision, maybe this will hurry his diagnosis along, maybe not?!?
All I know is that we went to the hospital well and came back with a very sick, little boy. :(