Heath's Journey 3/23/11

mujul79's picture

Ok how to start. I'm going to have to go back a few weeks so this may get long.

On March 11th I got a phone call from the Nero S nurse and she read me the Apnea results and they are not good. His sleep study was 6 weeks ago, so after that wait you think the news of what we are doing next would be better then "come back for a visit in 3 months"!!!!

She told me he has both obs and central sleep apnea. Sorry no when every night he goes to bed puts us at the "he may not see the sun rise" danger I am not happy with a 3 month wait to see with the dr. Then she told me to get his adinoids taeken out and we would see if that helpped. I almost lost my top because we had that surgery already last spring that is why we are seeing a Nero S because the ENT stuff was fixed already!!

She then tried to tell me I did not know his medical history and he had no symptoms of Chiari because he has no headaches, or numbness in his hands/feet. I'm sorry that is not the only 2 symptoms that go with Chiari and can your 28 month old tell you if they have numbness or a headache? He has balance issues, devemental delays, hearing problems, breathing problems, eating issues, poor tone, a sensory disorder, develmetal and speech delays and guess what lady they are all Chirai symptoms!! She was like oh I have not read his chart, you sound upset I'll take to the Dr about getting him seen sooner then 3 months and call you back on Monday. Well the nurse never called me back on Monday but the Dr. called me himself Wed. After talking he said the nurse will be calling me and he wants to see Heath in the next 2 weeks. Sleep study showed 108 OSA events, 8 Central events and 12 "other" events. IF we do surgery it will be before June.

Well after 4 nights of screaming, some congestion and waking up off balance so much that he was not walking in a line an kept falling over. I took Heath to the pedi yesterday. Because it was a sick visit we did not see his reg pedi. And after the exam she went to get a 2nd Dr to take a look at him, because she did not know his baseline other then looking at his chart. They could not find any infection or anything that would be causing him pain. So they told me to call the Nero S because they thought it was headaches. But they also asked if they could clean his left ear out of wax because it was hard to see if he had an infection in that ear.

The nurse came in with the water pick and she hardly started when he started to fuss and lots of wax came out. She stopped right away and then we noticed blood was also coming out so she stopped and went to get one of the Dr's. They ruptured his ear drum Sad so she told me to call the ENT. So we went with congestion and left with a bleeding ear, 5 Rx and 2 follow up apointments one on Fri the 25th with Nero S and one April 6th with ENT.

Then I went to pick up his meds only to find out his benifit card was not working!! They could see he has insurance but the # on the card was not running. It was after 5 so I could not call SS to get the right card #. I endded up after talking to the pedi buying otc allergy meds and pain meds. Lucky today called SS and they called me back in 15 min with the right # and the pharmacy just called me and said that yes that one will work and I can come get the meds at noon.

Heath is not feeling well his temp is 99 and he is laying on the sofa and wathcing PBS. But he did manage to sleep 8 hours without screaming last night :). I update more after his Nero S visit on Fri. I have a feeling we will be talking about the surgery more at lenght.