Thursday, April 21, 2011

Well the kids went to daycare bright and early this morning so that I could get to St. Paul to be with Grayson and Jesse. I got there around 7am and he was done with the sleep study and he was happy to see mommy! :) He was then admitted to the hospital so that he could be seen by our neurologist, and also the childrens pulmonologist.
When we found out that normal infants can have some episodes of no breathing activity for short periods but then pick right back up-he said 5 episodes of 20 seconds is considered still in the normal rage. Grayson had 16 episodes last night and one of the longest they recorded lasted 52 seconds long. So when I caught him the other day not breathing for the 30 seconds I counted, I must have caught him during one of the longer episodes. They did some feeding and listening to him swallowing and are still going to do a GI scope thingy but they think this is due to the tumor. They think because of its location its causing some delay in messaging, blocking or pushing on some of the central messaging. I hope that makes sense to everyone lol. I understand it but its hard to remember word for word how the doctors describe it. They were all against getting the apnea monitors for now, its an apnea but its due to a tumor so he said the thing would be going off 16 times a night. They didn't give us much information on what else to do, its kind of out of every ones hands and they are just going to sit back and be quiet until the next MRI we guess. He will be having the GI scope/test thing on April 29th, to make sure that when he is having the episodes of no breathing for short periods that he is 'protecting' his airway but keeping it closed and not allowing food/milk to come back up and possibly enter the airway. Which would cause an infection/pneumonia. We could tell the doctors don't want to say its fully from the tumor by saying it may have got bigger, they just want to wait until the next MRI to flat out say that. 
So now this thing is messing with his breathing which is super scary. But we are home now, they wanted him to spend the night again tonight but he was just done. He was super fussy and tired of people messing with him so I said we are just going home for now. Hes happy now that we are home :)
I am happy we are home also, but ready to freak out. I thought we would be able to avoid doctor trips until May 11th and now we had to both drive to St. Paul separately yesterday and today, and we will have 3 more appointments before the May 11th one. UGH! Gas is expensive if every one hasn't noticed this LOL and I also need to be planning the twins First birthday party! :/

1 comment:

  1. A friend on FB posted a prayer request for Grayson and I have been following your blog ever since! My heart goes out to your family. Although, I do not personally know Grayson my thoughts and prayers are with him. My Father had been dignosed with brain cancer and I have been by his side thru it all. His Dr's gave me a list with charities that can help financially to help cover copays and cost of Transportation cost. We have found this list a hugh help. I would love to E-mail it to you if you would like? (Find me on FB Aclfield@msn.com) You can also call the American Cancer Society and let them know what's going on and they will send a $25.00 Amercian Express gas card. Their phone # is 1-800-ACS-2345. They will do that twice!

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