Report

So Paxton had his first anesthesia and surgery last night. The little guy hadn't had food since 11 am and didn't get down to the OR until 7:30 pm, so he was not very happy all day! The surgery was supposed to take one hour, but because of the specific type of glaucoma they discovered he had (Axenfeld's-Reigers, often associated with chromosomal difficulties), they had to do a more difficult, longer procedure. Because the right eye's pressure was in a safe range due to the Diamox meds, they decided to only try the surgery in the left eye and see how it does. In two weeks Paxton will go back down to the OR for the same process: anesthesia & eye exams to test the pressure in both eyes. We learned it may take several of these operations to correct the problem. Every time you go in, the surgery options and techniques get a little more complex (because you can't cut in the same place), so obviously we hope for it to work well sooner rather than later. The surgery actually had nothing to do with his tear ducts, but the normal draining process that occurs out of the cornea (or black inner part of the eye). They had to go under the top clear layer and cut 120-180 degrees around the edge of the cornea to try to create a place for the fluid to go. Hopefully in two weeks we will learn it went well!

When Paxton came back he was very pale and cold and his left eye was swollen.  He was pretty jumpy at touch or sound and shaking a little bit from the anesthesia.  It made us kind of sad especially as he was starting to wake up, hungry and in pain. He was able to start a little bit of food at midnight last night and is back up to his full feeds right now. Tonight he will have to stop eating at midnight again as he goes back down to the OR tomorrow morning.

I am sitting here today by his side and he still looks very pale and lethargic to me and the nurse. But recently having surgery myself, most of us know we feel pretty bad after surgery and just want to sleep, and days 1-3 after surgery are not very pleasant. Today his eye is more flat, because of the draining from the surgery, and the eye is swollen and messy as he is having drops in there very often. The blood in his eye looked almost cleaned out. They are watching him closely though because his red blood cell count is low, his white blood cell count is high, and his temperature has been a little off today. They are not sure if an infection is beginning or if his body is just having an inflammatory response to surgery. They are checking his blood often and hoping his "hemocrit" will "retic" by itself, or his body will produce the right amount of red blood cells by himself, so he does not have to have a blood transfusion. We hope not as that whole process can be very risky (especially for an infant) and make him more sick; Dave and I don't love that idea at all!

We are also a little worried that he doesn't seem super strong for tomorrow morning's procedures (scopes down the throat and airway, bronch, esophagus, and lung lobes). If everything looks okay they were going to extubate him there (pull the breathing tube out). I just don't feel like it's an optimal time for them to try and pull it and see "how he does", when he doesn't look normally strong to me at all. I have spoken to his docs about it and they are going to wait and see how he seems in morning, then decide. I have a feeling they are going to go through with it, so hopefully we can all pray extra for Paxton tonight. I'll be so sad if he has to go through the painful process of putting it back down again because he wasn't feeling strong enough in the first place to breathe on his own.

We will let you know how tomorrow goes. Thank you all so much for your love and concern, prayers, messages, etc. It is really helping us get through this all right now. We are so grateful for your support and love you all so much.

And we love Paxton! Good night little buddy! Sweet dreams and a strong recovery!

(I feel like Alakay's parents in Madagascar, wanting to warn him that tomorrow morning won't be a dance, he has to fight! I know he can absolutely do it, I just want his body to be in its best, rested shape to show them that he can!)  :)  Good luck, Paxton, we know you can do it! All our love and wishes are with you. Love you and good night.