Xavier controls his narrative, I’m here for this chapter.

On the 13th Xavier turned 5 months (adjusted age 1 month) and decided he was too old to be on the vent with a tube down his throat. He got his hand free, grabbed his tube and took it out. Now, being his mom, I’m not surprised at this because he has a long history of the snatch and grab. The difference this time is that the doctors decided to keep it out. Yes, re-read that sentence again.

They decided to keep it out!!!

Yall, when I got the call I got so excited but Leonard humbled me and told me to calm down because there’s a chance that he would need to be reintubated. For the time being, they gave him a nasal cannula to give him a little bit more oxygen and some albuterol to help open his airways some more. The nurses called me and Zoom’d with me immediately because they were just as excited. Leonard and I were the only ones that have ever held him and now they finally got to hold him and sit him up without assistance from the respiratory therapists. Over the next 24 hours, we decided to tell some family and godparents, so I would just show this picture and wait for them to notice the difference. The responses took a while but when they figured it out, there were plenty of screams and tears of joy. Talk about best Valentine’s Day ever!

The hospital kept an even closer eye on him everyday and he was just continuing to improve so his morphine got decreased even more and albuterol was down to 2 doses a day. Remember last post when I said it was only a matter of time before he gets released?? Well on the 16th we got the official ok from the ophthalmologist. His eyes are doing very well, and no follow up in Chicago would be needed! Then 2 days later, I got the call my insurance approved his transfer!

Whew! All this amazing news in one week. Chile I can’t even wrap my head around it. Anyways, the doctors consulted with his new hospital, got the necessary authorizations and literally Thursday night his transportation was on the way. He didn’t go by helicopter this time instead, he rode in the ambulance for the 3 1/2 hour drive. Got the call around 4am that he made it safely.

Now will all this good news, you’d think nothing would piss me off right? Well think again. So since we hadn’t received any calls from social workers or doctors about policies, visitation, etc…I took it upon myself to ask during our 4am conversation because I like to be prepared. He has a room, but only one parent is allowed on the floor at a time. ~sigh~ Here we go again. I’m not pleased at all. Part of Xavier’s care is having BOTH of his parents together. I haven’t even stepped foot in the hospital yet to know I’m ready to request a transfer back to his first hospital. He knows the doctors and nurses there and *brace yourself* both Leonard and I were allowed to be in the room together! These different Covid rules at these hospitals blow me. Also, another reason I want him at his 1st hospital again is because he’s no longer on the vent, and they didn’t reintubate him for his travel back so why is this hospital even necessary anymore? I don’t believe that we need to even discuss tracheotomy’s or g-tubes any longer. We need to start discussing breast-feeding, bottle-feedings, learning the necessary things we need to do with home care. I’m going to try to be patient, but I’ve heard less than stellar remarks from other moms. I’m not happy at all. The point was for us to start being apart of his daily care again, together. Let me calm down….baby steps right? Woosaaaa

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Update: Reunited with my baby and it was magical. I heard his voice for the 1st time today and forgot why I was upset. You guys don’t understand, just walking in his room and picking him up without assistance was so amazing. He loves his pacifier and wants you to hold it in his mouth for him at all times…or at least till he falls asleep. My little (big) 13lb baby is so handsome and I love him to pieces. I’m so happy he is close by again. I did get to talk to some of the staff and I still don’t agree with the one parent policy, but I’m going to try to tough it out. After all, I want him to have the best care.