Friday, April 16, 2010
Well if you ever need a second opinion, the Mayo is the place!
We are getting the full tour here with all the different types of specialist here at the Mayo. Our day began with our 6 block walk to the Mayo building for a 7am EEG test, the exam was long. They need to get 20 minutes of awake time, 20 min of sleep time, and 15 minutes of different types of stimulation including noise, pictures, and lights.
Landon did very well during the exam, mommy had to hold me the whole time to keep me from moving around.
The red dots from the EEG stayed on his head until the next day, poor baby Landon!
He looks a little mad.
The next appt today was in the Otorhinolaryngology department, ok... ear, nose, and throat dr. She was very helpful today she placed a camera scope down Landon's trach to check for scar tissue and to look in his airway in to his lungs and she thinks they look good. She then did a scope down Landon's nose to look at his vocal cords and voice box, it looks great but Landon did not like it. The part that could be a problem for Landon is the scar tissue she noticed right above where his trach tube is actually located. So she has scheduled a surgery next Wednesday to remove the tissue before it becomes a breathing problem.
At 10 am we went to meet with 2 different Pulmonary doctors who both think Landon's breathing issues are neurological not a lung issue. The sent us for a chest x-ray and then scheduled us for some blood gas draw this afternoon.
Have you watched a sitting chest x-ray with a baby who can not sit or hold up his head???
Well Landon was mad about this today and his machines were beeping the whole time.
Not a
happy
Landon!
Our next stop was having a hip x-ray to make sure his frog legs are just a muscle issue and not a hip issue. The results are in...hips are good it is just a weak muscle issue, which is good because it will be easier to fix.
Next we went for a consult with the neurologist we saw yesterday, he had upped his Mestion medication yesterday and then tells me today that i need to skip a few of Landon's doses on Sunday night and Monday morning because he wants to have a EMG test Monday morning. This is the same test we went to OK City to complete in November last year that gave us the conformation of neuromuscular condition, the Dr feels if we were to complete this EMG with out the medication this time that we might have better results that could help them narrow down the details of the condition. The next consult was with the pediatric specialist who went over most of Landon's results that we have so far.
Well ALL of Landon's x-rays look great!!!! Lungs included! That narrows down Landon's condition to neurological not growth or developmental issues!!! The bad news is what mom as been asking several doctors before an all have denied. Landon's EEG was not good, they will be doing more test but the zone outs mom does not like are actual seizures. :( This makes me so sad to hear but at least after a few test next week we will start on a different medication that might help Landon have less episodes and maybe less apnea episodes. So yes bad news but now that they have some testing to prove it maybe we can fix it.
Last stop Blood Gas draw, no more blood please. Can we just go home for today, shuttle here we go.
.
The walk to Saint Mary's Hospital begins early today with a 7am check-in time for Landon's MRI. Mom changed out Landon's trach to a Shiley with no metal and Landon was on his way for a busy day. Landon's MRI started at 7:30 am and then moved over to the OR at 9:31am. Landon has granulation tissue above his trach site that needs to be removed to open up his air way. The procedure was a great success and Landon made his way up to the PICU to recover for the next 24 hours. 
We got up and ready early today for Landon's 6:45am sedated EMG at Saint Mary's Hospital. Landon was weighed and checked in by 7am. We then met with the RT to look over Landon's vent and his setting, apparently it is so new the Mayo has not used the machine they have only heard about it. Next to visit his pre-op room was 2 different Anesthesiologist who checked Landon out completely and then gave him some med via Mic-Key to help them start his IV. The TV in the waiting room informed families exactly what time and location of the patient, in OR 8:31; procedure starts 8:51; procedure done 10:41; exit OR 10:54; Recovery Room 10:59. Landon did well recovering from being put under and the EMG and we were out of the hospital just before noon.
Landon did very well during the exam, mommy had to hold me the whole time to keep me from moving around. 
At 10 am we went to meet with 2 different Pulmonary doctors who both think Landon's breathing issues are neurological not a lung issue. The sent us for a chest x-ray and then scheduled us for some blood gas draw this afternoon.
Well Landon was mad about this today and his machines were beeping the whole time.
Our next stop was having a hip x-ray to make sure his frog legs are just a muscle issue and not a hip issue. The results are in...hips are good it is just a weak muscle issue, which is good because it will be easier to fix.
We left floor 7 and went up to floor 9 for Landon's next scheduled appt at 10:30am. That Dr was running late in the OR so it was rescheduled for 3:30pm, so now we have time for a long lunch and will be able to charge Landon's machines. After lunch we traveled back up to the 16 floor and waited for our neurological consultation. Dr. Mack the neurologist thinks we are on the right track and scheduled us with Dr. Selcen a neurologist who works very closely with Dr. Engle and CMS kids. We then needed to have Landon's blood drawn, every time we have had blood drawn they say he his a hard stick and they are not kidding. Over a hour and 3 sticks later we were done, poor baby.
