Today Thomas had his FEES, where they let me breast feed him while they put a camera tube up his nose and threaded it down his throat. They were trying to see if he was aspirating during breast feeding, which is why we have been doing the feeding tube up to this point. They roll in this big machine that looks like a robot with a monitor for a head and all kinds of wires for arms. The doctor comes in behind the machine along with a tech and two speech pathologists and then about 9 other people. Mind you, we are in a hospital room, not known for their size, with a crib, a pullout couch - that is still pulled out into a bed with sheets and pillows all strewn about - a rocking chair that I am sitting in and a desk chair that I have my feet on while I am holding Thomas. The speech pathologist introduces the doctors and then mentions that these other people are from Israel and are learning about this aspect of medicine and they would like to see a FEES in real time if that's ok with me. I am by no means a clean person, ask John, or better yet just come to our house. I don't straighten regularly, I can blame this on having kids, but that would be a lie, I have always been that way. Clutter doesn't bother me. But for some reason when all these people walked into our room I became very aware of the clutter and lack of organization in the room, like I should be picking up for them...in the hospital...with a sleeping little baby in my lap. It was really odd that this was my first thought seeing as I was about to have my breast out feeding Thomas in front of them. I think when it comes to this medical stuff, I really want to understand EVERYthing about what is happening. Most of the time, everyone is very accommodating and will answer any and all of my questions ad nauseam, but for some reason I was thinking if they see what a slob I am, they may not give me the respect to explain or even listen to my concerns...dumb, I know, but that's what crossed my brain, but I had no problem whipping out the milk makers and feeding him in front of strangers who are staring intently and whispering. Besides that, the study was awesome. He is fine at the breast and doesn't show any aspirating towards his airway. In fact, the doctor used the words "perfectly normal" and that is the first time that I have thought of that phrase as a compliment and the first time it has been used in respect to Thomas. So we are free to breastfeed again and lose the feeding tube. Great news.
During the assessment this morning, from the doctors rounding, they noticed some asymmetry in his eyes and possible cloudiness in the left eye. This could be a sign of a few things, so they called in ophthalmology, who dilated his eyes to take peek at the backs of them. The pressure was increased in both eyes and the left eye has an enlarged cornea, they think this is consistent with glaucoma. The plan for this is to do drops in both eyes to keep the pressure under control and relax it, but to monitor very closely. If it is, in fact, glaucoma, he will need surgery to preserve his vision relatively soon. Poor kid just can't catch a break. We seem to get one thing figured out and tesolved and them another one pops up.
With all these hospital stays, we are definitely making friends though. The ER docs know us by name and we have a few favorite nurses on the neuro floor. The speech pathologist, who got our FEES moved to today rather than the 24th, changed around her schedule so she could be the one here today with us. The people from the MM clinic have come to see us regularly and the Spina Bifida Coalition of Cincinnati has sent us regular meal cards so we can order food to our room at no charge, plus they have us tickets to Disney on Ice here in Cincy so we could take the two older boys!! In our relentless pursuit of health, we are continually expanding Thomas's already amazing village helping him through this journey!!
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