Well, it is just past 6 am on Wednesday, 4/4/12. A lot has happened since the last post and since I have been split up from my amazing beautiful wife. Sitting here alone is not fun, but JD entertains me and knowing Jen is healing calms me a bit as well. Okay…to the info. Oh and by the way, when I say “they” I am usually referring to one of the many, many people checking in on JD. Rather than confuse you with names and doctors I will just call of them “they.”
During the day, every hour or so some new “team” comes through introduces themselves to me, pokes and prods little JD, says some comments (I take notes) and leaves. It is good to see JD enjoys this as about as much as I do. I like when he fights back, makes little squeaks and moves his hands to wherever they are checking him. He is a true fighter and does like to be disturbed.
We have not received all the results yet and I get them in bits and pieces. We are still waiting on is the MRI to confirm the severity of Spina Bifida (hole in the spine) and if/when he will need surgery. The MRI they attempted last night did not work, as JD was “moving” too much. I believe I heard JD whisper to me last night “Sorry for partying”. It is hard to imagine the doctors thinking it would work…as he has done nothing but move starting at 16 weeks all the way up until delivery and even more since he arrived. 1½ hours it will take…no way is he sitting still for that long.
The plan was to move the MRI to this morning so all the necessary doctors will be here. They will need to make him “sleepy” so there needs to be specific people to monitor him because of his small chin and they want to make sure he does not have any trouble breathing during the scan. I say, “yes, please do. We will wait”….and wait we shall. Upon arrival this morning I have been told the MRI is moved until later today. So, now I have time to update the blog.
Without the MRI, they will not be moving forward with the surgery. The tentative surgery time is set for 4 PM today. I would imagine that would be moved back, unless he gets the MRI earlier as they have time to review it, make a decision and stick with the scheduled time. We will see.
Below are some of the tests and results.
Renal Ultrasound – waiting on results
Eye Exam – has some issue in the front and the rear of the eye. Because nothing is “conclusive”, there are just “chances” that something may hinder his vision in the future and/or he may have issues with glaucoma or cataracts. Again, we will not know more for a few weeks as they have additional exams.
Ear, Throat, Nose - they have not come by yet, however I am very anxious for their visit and review.
Head Ultrasound – there are no signs of blood or fluids around the brain. Yah! This is great news.
Muscle Exam – No real feedback on this one yet, however he does move a lot so I will just assume he passed with flying colors.
ECHO – Again, nothing is conclusive. Because he cannot be placed on his back, they will need to do another test after his surgery to get a better look. There is “concern” for Aorta Coarctation. This is the narrowing of the artery on the way out of the heart. There are many implications if this concern is realized. However they vary based on severity so I will not venture to guess. The other “concern” is for Pulmonary Stenosis. Very similar to the Coarctation. The good news is for both cases, his upper and lower extremity blood pressure tests were great…so hopefully the “concerns” can take a hike.
All-in-all, JD is doing great. He sleeps most the time, takes a pacifier every once and a while, grabs my finger, makes little squeaks, and mainly breathing on his own. The nurses here are great, Jen will really like them. Sorry I am not as good a writer as Jen, but it is early and I am all about some good updates. Thanks to all our friends and family and followers out there for your continued love and support, it means a lot. Love getting a text, call, post filled with support, especially without Jen being here. Thanks to my wife for being amazing. She is the strongest woman on the planet and an amazing mother, and I love her very much.
Until next time…