Whewwwwwww! What a day, what a day! We went back to the hospital today where Edison had 2 appointments: one for surgery and one for neonatology. We knew it would be a long day but we had no idea! We arrived at 9:30 this morning and left at 4:00!!! Martin and I didn't even eat lunch until 4. At least we could connect Edison's feeding to his g-tube so he didn't stave, too!
Our first appointment with our surgeon was short and sweet. He was very impressed with how well Edison's doing and scheduled some tests that we will have the next 2 weeks to see if we can start moving ahead with some oral feedings. One area of concern is the choking episodes Edison has been having. They are worried that it could be reflux which would mean formula is coming up through his fundoplication (the last surgery he had before we were discharged). So one of the studies will give us information about that as well.
Then we had our first visit with neonatology which ended up lasting almost 3 hours!! It began with a developmental assessment with a psychologist. Edison was really a trooper considering he hadn't napped or pooped all day and you could tell he was just exhausted. But he hung in there. Based on her assessment she felt like he had the motor skills of a 2 month old (he missed the 3 month old by one skill!!) And cognitively he scored about a 4-5 month old. They will follow up on his progress in 6 months. In the meantime she gave Martin and me some good feedback on things we can do at home.
Then we met with the neonatologist and nurse practitioner both of whom we liked a lot. The neonatologist we saw is really considered an expert in this field and wrote a book used for primary practice physicians to use when caring for preemies. We talked about a lot of things but I think the main things that came out of it are:
1-his eyes. You may have noticed in some of the pictures that I've posted that Edison has an eye that tends to turn inward quite a bit. This probably results in him having double vision and he may eventually stop using that eye. The concern is that if he doesn't use his eye he would lose the vision there. So she wants us to follow up with opthalmology as soon as possible.
2-She referred us to a feeding program where we will work with a doctor on figuring out how to transition to oral feeds to eventually get rid of this g-tube!
3-We have to keep him well, well, well this winter. She even recommended that when Martin gets home from teaching that he change out of the clothes that he wore to school. This winter is just going to be nerve racking. But we'll get through it.
Then we had to go have a chest x-ray to check up on his legs (I can tell I'm tired....I have no idea where "legs" just came from, I meant lungs :). Whew! As usual Edison handled this all better than his mom and dad. He really amazes me because within minutes of getting home you would never notice that he's been through everything he's been through today. He has incredible tolerance.
Our first appointment with our surgeon was short and sweet. He was very impressed with how well Edison's doing and scheduled some tests that we will have the next 2 weeks to see if we can start moving ahead with some oral feedings. One area of concern is the choking episodes Edison has been having. They are worried that it could be reflux which would mean formula is coming up through his fundoplication (the last surgery he had before we were discharged). So one of the studies will give us information about that as well.
Then we had our first visit with neonatology which ended up lasting almost 3 hours!! It began with a developmental assessment with a psychologist. Edison was really a trooper considering he hadn't napped or pooped all day and you could tell he was just exhausted. But he hung in there. Based on her assessment she felt like he had the motor skills of a 2 month old (he missed the 3 month old by one skill!!) And cognitively he scored about a 4-5 month old. They will follow up on his progress in 6 months. In the meantime she gave Martin and me some good feedback on things we can do at home.
Then we met with the neonatologist and nurse practitioner both of whom we liked a lot. The neonatologist we saw is really considered an expert in this field and wrote a book used for primary practice physicians to use when caring for preemies. We talked about a lot of things but I think the main things that came out of it are:
1-his eyes. You may have noticed in some of the pictures that I've posted that Edison has an eye that tends to turn inward quite a bit. This probably results in him having double vision and he may eventually stop using that eye. The concern is that if he doesn't use his eye he would lose the vision there. So she wants us to follow up with opthalmology as soon as possible.
2-She referred us to a feeding program where we will work with a doctor on figuring out how to transition to oral feeds to eventually get rid of this g-tube!
3-We have to keep him well, well, well this winter. She even recommended that when Martin gets home from teaching that he change out of the clothes that he wore to school. This winter is just going to be nerve racking. But we'll get through it.
Then we had to go have a chest x-ray to check up on his legs (I can tell I'm tired....I have no idea where "legs" just came from, I meant lungs :). Whew! As usual Edison handled this all better than his mom and dad. He really amazes me because within minutes of getting home you would never notice that he's been through everything he's been through today. He has incredible tolerance.
posted by Jen | 8:21 PM
3 Comments:
Spunk is the only word I can think of for all three of you.
Dad
Well, here I am again--back in business with my own computer in my own little home. It's been a long, long time, and I am about to feel human once more. No more going to the library to peek in on you three!
All in all, the reports from your visit to CHOP sound very promising, a relief for you and all D's cheerleaders who wait on the sidelines. Thanks again for keeping us informed. love....
dobie
Super Troopers! All three of you...I'm glad to hear good reports from the CHOP staff and looking forward to getting you all throught the winter without any germs. I'm thinking about you always.
Love, Sue
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