Sorry I havent given an update about yesterday yet. Honestly, Im not really ready to talk about it all yet. Below is the summary of what we found out/confirmed in the past 24-36 hours. We received the esophagram results for Reed. He does not have a leak in his esophagus so we will be able to start feeding via his feeding tube soon! (Yay!!). Also, his VGUC test came back normal so his bladder function is normal (another yay!!). For some reason, his kidneys still have debris in them so we need to figure out what is causing them not to function correctly. They were able to pull his chest tube this morning. Thats a BIG deal. :-) It was extremely uncomfortable for him, so Im very excited that its gone. I hope he can be more comfortable from now on. Also, it means I should be able to hold him soon. I cant wait to snuggle and kiss on him. The spot in his esophagus where the connection is has some scar tissue/swelling causing it to be constricted. He will have lifelong issues with this and will need to have that spot dilated repeatedly. This also means that it will be a while before we can try to feed him via bottle or syringe. He will almost positively need a g-port to be placed into his stomach. We also found out that he has malrotation of his intestines. That will need to be surgically corrected. They mentioned that it might be done when they put in the g-port. We know he has a vascular ring around his trachea which seems to be restricting his airway pretty significantly. He periodically has episodes where his oxygen saturation level plummets and he stops breathing. He needs to be bagged for a minute and his throat/mouth need to be suctioned out. Once thats done though, he usually rebounds pretty well. Its extremely difficult to witness one of these episodes. Unfortunately, I had to witness my first one this afternoon. Its inexplicably difficult to watch my child struggle to breath--something thats so basic and instinctual. It makes my heart hurt. He has something called colobomas on his retinas. We dont know the extent of them yet or how they will affect his vision, however we are fairly confident that he will be at least partially blind. Josh and I dont believe he is fully blind though. He seems to see us when we get close to his face. They also suspect he has hearing issues. He will have his ears checked soon to see the extent. It is suspected that he might be partially or fully deaf also. Again, Josh and I dont believe that as it seems like he is aware of us in the room. I honestly believe he can hear me when I talk to him. He is having an MRI tonight. This is to check his brain and ears. We should know the results tomorrow -- fingers crossed. Also, tomorrow morning, he will have a CT scan. This will be to look at the vascular ring around his trachea. They want to see how much it is infringing on his airway, and how quickly it will need to be surgically repaired. With the new information we have, it is becoming more and more likely that he has CHARGE Syndrome. He fits every single characteristic of it except one. Ive attached two pictures. One is of Reed today after the removal of his chest tube. He looks more comfy than he did before. :-) The other is of tonights snuggle time. I had Micah on my chest and Cooper snuggling between my legs. It was as close to perfect as we can get when were still missing one of our babies. Like I said, Im not really ready to talk about everything. It hasnt fully sunken in yet. My poor little baby. Prayers requested.
Posted on: Fri, 01 Aug 2014 02:01:24 +0000
Trending Topics
Recently Viewed Topics
© 2015