Wednesday, April 27, 2011

Dillon's sleep study

Dillon had a sleep study last night. The night nurse met us down there and took over so I could come home and sleep. I got a call about 11PM saying the doctor wanted the nurse to take Dillon down to the ER and that they were aborting the sleep study! Huh? He was fine when I left him!

His heart rate went high (which was still within the range I told them were cleared by cardiology). And keep in mind it started going up while they were attaching wire after wire after wire (that left nasty red marks all over his face, neck and chest... hum I wonder why he didn't like it!?)

Then because his heart rate was up from being mad he got a fever! Oh no - 99. No hospital considers 99, one degree higher than the patients norm, a fever.

Oh and let's not forget the Tylenol didn't work. When I asked the doctor how long ago it was given her answer was 20-30 minutes. I informed the doctor Tylenol usually takes 45 minutes or so to kick in and she needed to wait.

She said he was coughing up green stuff. My nurse said he never saw anything green.

And and let's not forget the increased secretions - which he is in between robinul doses at the time and I warned them he would have more in between doses.

And my favorite reason why he needed to go to the ER was "He is gagging on secretions and coughing." I informed the doctor that Dillon cannot swallow which is why we have a suction machine and he HAS to cough those secretions up.

She was convinced the study should be stopped because he was so ill and needed to go to the ER. I spoke on the phone with my nurse and he said Dillon was already starting to calm down, he also had told them Dillon did not need to go to the ER and that he was fine to continue the study once he calmed down from all the wires being placed.

They finally called me back at midnight to tell me they would continue. Then he must have done great because they never even put him on CPAP... during the whole night! If he would have needed it they would have put him on a low number and worked it up to where he needed - so I think he may not need CPAP anymore.... I can't wait for the results!

I really don't understand these CHOP doctors who don't understand special kids. How do they work at CHOP and be afraid of special kids? I told the doctor she clearly had not read his history if she didn't know that he can't swallow (which is kind of important when you are doing a sleep study to see how well a child is breathing) and that he is so sensitive to temp that a warm room can make his temp go up to 104. I think next time I go to a sleep study I will try to schedule on a night Dr. Shaw is not there!


valerieschnarr said...

Maybe one day the doctors at CHOP will listen to you....wait i must have been dreaming that...DILLON YOU DID A GREAT JOB! LOVE YOU

Donna said...

Oh, our precious little boy was only responding to all the wires being placed but the doctor didn't realize that. It is Dillon's way of communicating "I don't like what is going on." Doctors usually send a patient to the ER when they don't know what else to do. We often think doctors know so much but in reality they only know what they are taught and get alarmed if something out of the ordinary is happening. Thankfully your nurse was with Dillon. Actually if Dillon needs to go through this again-Dr. Shaw might be a good one to have there as this doctor has now seen him and is somewhat familiar with him. Hope Dillon's sleep study went well and showed that his breathing is improving. Give Dillon a kiss for me. Love and prayers, Grandma K.