ENT visit at Children's Hospital

Yesterday, Logan and I went to see the Pediatric ENT at Children's Hospital.
As far as his hearing...they repeated the test he had last week with the same result, a fail. So, we were put on the day surgery schedule for a sedated auditory brain response test. They told me that due to is DS and his breathing issues he would need to be put out for the two hour test. At least this is the last test they can do, it will give us all of the answers we need. BUT, the soonest we can get in for this test is the middle of April!! I even asked if we could do it closer to home at a different hospital and they said no. We are on a cancellation list, so I am crossing my figures that they well call with an opening soon.
As far as his breathing...the doctor said that Logan sitting up to sleep sounded like it was working well for him, so we will look for a different sleep solution when he can no longer sit in the car seat. And as for his cough. He said it sounds barky because of Logan's narrow airway and is probably caused by extra saliva or drainage, but if he starts coughing more than only intermittently during the day and at night, we have to have his airway looked at. I guess they would send a camera down his throat to take a look. He could have one of many possible structural abnormalities in his airway. He named a bunch, but they all had weird names.
Good news...the hearing test they did perform showed that Logan is most likely hearing at some pitches, and it is possible that the test didn't detect reaction to the other pitches because of the tubes in his ears. So the doctor said there is a chance that he is hearing well.

This duck for the tub is working great for bath time! I was getting frustrated because Logan is too big for an infant tub, but can't sit up in the regular tub. I thought he might slip around in the duck, but the bottom is grippy so he can sit and lean against the tail (or it also makes a great head rest!)

Scratch that last post!!!

They called me back...and we got moved up to Tuesday!!! The scheduler did not realize that she was talking to the Logan who the ENT doctor wanted to see as soon as possible. He wants us to come down soon not because of the hearing loss, but because of his possible airway obstruction. So finally, we may get the breathing stuff figured out.
I feel MUCH better now!

Pure Frustration

Logan can't get in for his appointment with the Pediatric ENT until February 2oth!!!! The first person I talked to told us the first appointment was March 24th, but I pushed to get him in ASAP. And the appointment is only to meet the doctor and have his initial evaluation. We have to go back for his "surgery" to test his hearing. (he needs to be sedated for the ABR, so I guess they call it surgery) I guess I will be waiting even longer to get the answers I need...

Hearing Test Results

Good news....the fluid has completely drained from Logan's ears.

Bad news....Logan did not pass his hearing test so he has some degree of hearing loss.

Logan did a great job sitting quietly for his hearing test. (Besides his noisey breathing almost messing up the test) At first, I was a little concerned when he cried for a good 10 minutes after the doctor looked in his ears and I had to feed him to settle him down. I think Logan has a hard time with pain. Every time he is in any kind of pain, it takes him FOREVER to get over it. Not sure why that is?? Anyway, after he settled down they did the test. It came back a fail for both ears so we will be going down to the Children's Hospital of Milwaukee for an Auditory Brain Stem Response Test and while we are there, Logan will see a Pediatric ENT Specialist to try to figure out Logan's breathing issues.

Sleep Answer ??

Ok....I thought I had solved a problem, but now I may have a new one.
I thought Logan was sleeping better at night since I started having him sleep sitting up in his car seat. He has always slept through the night, but I discovered he was not getting a good night sleep due to sleep apnea, his laryngomalsia or something (still don't know). He is awake more during the day but he now falls asleep in his high chair at dinner and sometimes at lunch too! He is taking two good naps each day and I would say he is down to about 14 hours of sleep, which is much more in the normal range for his age. It is frustrating...he has fallen asleep during dinner 3 nights in a row. I guess I am hoping he is just adjusting to the new sleep schedule??? I have so many questions for the ENT on Monday. Also, Logan still struggles to breath easily when he is sitting up at night. I am hoping I can get Logan a sleep study among other tests that were suggestions from other Moms. (Thanks!)
We are still getting his hearing tested on Monday, but I feel much more confident that we will
not discover a hearing problem. Since Logan's ear tubes I have noticed him turning his head to my voice and his name. OT was still concerned though because Logan was still not responding to rattles this week, so we will see.

Ear Tube Surgery

Tubes are in!
Logan got his tubes this morning and is doing well. They put them in at 7:15am this morning. When the doctor came in, before surgery, he said Logan would be his biggest challenge of the day. (due to his tiny ears) When Logan came back to me he was extremely upset, in fact, he cried hard for an hour straight. The nurses said he was crying more than most kids because the doctor had to really dig around to get the tubes in. He only stopped when he was back in his car seat to go home. (he fell asleep) When we got home I gave him his max dose of Motrin and he slept for a few hours, then he woke up in a much better mood. He now seems to be back to normal, but I fear what he will be like when the pain meds wears off.
I had a bit of a scare when we arrived at the hospital because when the nurses heard Logan's breathing and his cough, they thought that the doctor would not do the surgery. It turns out they didn't understand that Logan is always a noisy breather and he is not sick, even though he sounds like he is. Every time I see a new doctor or nurse they think right away that Logan has RSV. They get all worked up about it and then it always turns out that he doesn't. He just is the way he is and we have gotten used to it.