With the kids at grandmas and a big day ahead of us we headed down to San Diego for the night. Getting up early really isnt our thing so we opted to get a hotel room the night before Owens MRI.It was nice to relax and spend time just focusing on nothing but Owen.
After a good nights sleep we packed up and headed for the hospital. The check in process went very smooth. You get a pager and when each different part of the process needed you your pager went off. Ours was pager #49. I dont think I could forget because i just sat and stared at it waiting for it to go off. Thinking ok “now” ok well maybe “now” lol. And having the feeling of wanting to jump and run every time it did go off.
Everything went according to plan till we went down to the actual MRI and met with the anesthesiologist. She asked the same questions the other 3 nurses did but this time there was one extra question…”and he was full term correct?” Ummm “no he was a preemie” I replied.Thats where the day changed from our plan of getting to go enjoy the beach and make light of our son having to be put to sleep,to us ending up having to spend the night. Because he was a preemie and was being put to sleep they had to monitor him over night to make sure all was well. There wasn’t really a choice, he needed it done so we stayed. Unprepared,no extra clothes and unexcited to sleep in a chair. But as a parent you just do what you need to for you children.No questions asked it just come as instinct.
The MRI went with out a hicup. Although it did take a little longer then expected. Tyler did a great job of calming me down, reminding me that a few “extra” min was ok. The recovery room nurse was kind and understanding of our situation and broke the rules and let both of us back with him while he was waking up.Now this was a little weird not gonna lie. Watching him wake up and jolt his head and body back and forth freaked me out a little but he eventually woke up and ate and was my happy little guy.
Finally we got a room and Mr.Pirate went down for a nap. The next 15 hours I spent sitting in the Oh so comfortable (insert sarcasm ) chair staring at the monitor. I dont know what it is about hospitals but even when your non sick child is there it makes you feel like they are sick. He was breathing and acting the same way he does at home but having a monitor on him all night makes you stressed out with every little beep and alarm.
The morning came and one perk to having to stay at the hospital is we were gonna get the MRI results and he also got to have his Upper GI done that we had scheduled for next week.YAY no extra drive for me!!
The Upper GI went well.I got to go with him and it was cool to watch.He had to drink this special liquid and they watched it go down his little tummy.The doctor told me the results right there that he defanitly saw Owens reflex but that everything looked good.No damage to anything and his stomach was working normally:) That makes this Momma very happy.This will be something that does jsut go away!
Now for the MRI results.We got some good news that he didn’t have a stroke and there were no tumors or cancers.His brain looked perfect.However he was missing his 6th cranial nerve and his 7th cranial nerve is underdeveloped.With that they believe he has Moebius Syndrome.I guess my feelings at the moment were just relief that he didn’t have a tumor.As it has had time to sink in I just want more.I want more research and understanding.
Moebius Syndrome is a very rare disease and at the moment from my understanding and research there are a little over 2,000 people WORLDWIDE with it. WOW how do you take that in. Your child has a disease that they barely know anything about and chances of having it are around 1 in a million. We will know alot more with every doctors visit that we go to. Next week we have a follow up with the ophthalmologist and Neurologist.
If you made it all the way threw that post THANKS,I know it was long but i have lots to say. lol
I also want to thank everyone for their endless amounts of prayers. It means the world to me that you all are involved in this adventure that we are on. I look forward to educating my self and others about Moebius Syndrome and helping my little Pirate live a totally normal life.