In my last post I said “We are trying to be patient but I’m ready to go off” and that I did.
It always seems like my creative juices flow when I’m angry because last week I was about to drop all types of f bombs on here. I decided to delete that post and start over because I’m really trying to be more positive this year but folks just aren’t letting me. So let’s dive into who these folks are…
#1 My son’s hospital in Chicago. I’m so fucking fed up with them (oops, there’s that f bomb). Their communication is terrible. You all are aware by now that the main reason he is in Chicago is for a specific eye doctor and his eye exam’s are on Tuesdays. So why did it take 22 days for me to actually speak again with said eye doctor? *blink blink with a slight head tilt* Everyday, a resident doctor would call and give me updates on the baby and after his weekly eye exam just updates from what the eye doctor wrote. Nurses and doctors would ask if I’ve talked to the eye doctor and every time my answer would be no and they’d say “well he should be calling soon” Soon never came so I had to voice my frustrations. Luckily one of my favorite night nurses listened to my frustrations and passed the message, but the next day still no update from the eye doctor. So I go to the social worker and in so many words speak about my frustrations trying to hold back tears because when I’m very angry those are the first things to surface. At this point I was ready for them to transfer my baby back here because at least I can get someone here to give me answers. Not to draw this out, but the eye doctor finally called and explained in his words the status of my baby and guess what….very different from what the other doctors interpreted from his notes. UGH!! So for the accurate update of Xavier: There’s an 80% chance that he will not need surgery. The scar tissue is improving, just very slowly which is why he needs to stay and be evaluated for a couple more weeks. We could do surgery to cut the scar tissue but there could be complications along with a 5% chance of blindness. His father and I do not want him to have the surgery if his eye is showing improvement. He’s already been through enough and if we have to wait, we will do that. Plus he already has other surgeries that need to happen and I’ll dive into that later.
#2 My insurance. When the time comes for discharge from Chicago, these mother fuckers will not approve his transfer back to the hospital in his home state. The case manager for my insurance said coming back to an Indiana hospital is not higher level care, just lateral. Like what in the entire fuck?! How am I supposed to get him back here when he is still tied to a ventilator?!!!! The case manager in Chicago is going to contact his secondary insurance that we have for him and see if they will approve it, but if not, I have no clue what is going to happen. Just another issue on my shoulders to deal with.
Now that I’ve gotten that off my chest, our latest weekend visit with him was wonderful. I spoke with another doctor in depth about the things they want to start doing with Xay now that he will be in their care for little while longer. More aggressive setting changes on his ventilator have been made in the last week and a half and he’s been doing great with that. We also talked about his hernia and he’s on the schedule to have his surgery this weekend. Since it’s so big he will need 2 surgeries likely a week apart. I hate that it has to be like that but I’ve very happy it’s finally getting done. Having to see him cry in pain (because he cant make noises yet) is the most heart-wrenching thing to witness, especially being 200 miles away. I pray this gives him the relief he needs. The Ear Nose Throat doctor will evaluate him this week to determine if he needs a tracheostomy. His father and I do not want him to get one unless he truly needs it and if so, we want a second opinion from the doctors here as we will not allow him to get it done in Chicago.
Xay’s social worker at the hospital sent us a couple NICU foundations to apply for assistance and we got approved for both. It definitely will help with gas during our back and forth travels so I appreciate her for sending them over to us.
So there’s my updates. Please keep this little guy in your prayers this week. He’s such a trooper. I also received word that he has a little fan club of nurses that like to check in on him and gush over him. I can’t even be mad at that, he’s so damn cute.
P.S. I’m begging that you please stop asking me when he’s coming home. I truly do not know and trust me, I will share the news when he does. I know you all mean well, but I’m not going to continue to throw out dates and get defeated when we pass that date. ❤