Things gets worse

Everything with Liam seems to be going down hill. I wake up to Liam getting his blood drawn. The lady didn't listen to me when i said it needed to be a heel stick because his veins have been punctured too much and they wont get them. She doesn't listen and pokes a 2nd time before doing the heel stick. During which I'm having to hold Liam down and try to calm him. That's when I notice his entire body shaking involuntarily, more like vibrating. Later the nurse walks in said the neurology was on the phone and wanted to know if I had seen any signs seizure. I said no but explained that his body had been doing an abnormal shaking. She walks out, picks up the phone, tells neurology then starts laughing saying "all babies shake" as if I have no clue what I am saying. Little does the stupid idiot know ive been DEI certified for 8 years and have dealt with a lot of sick babies as well as have been there every step of the way with Liam and know him extremely well. I thought maybe I was over reacting due to lack of sleep and frustration but as the day goes on I find out otherwise. On several occasions she almost makes the grave mistake of putting his meds in his jtube instead of gtube which would result in another surgery to replace the GJtube because if anything but formula goes into the jtube it will result in it becomming clogged. I actually have to stand there and do it all because she just cant get it. Finnaly I ask for permanent marker so i can write on the clamp what each tube is. I guess my son needs "there's your sign" labels. She brings be brightly colored labels, one for feeding only and one for meds only, even better then the marker idea. Then she has to ask how much water she needs to use to flush the meds down. I stare at her in complete shock. Seriously has this women even gone through nursing school? She even tried to let a half tube worth of air go into my sons intestines because she was being too lazy to prime the line. Leaving Liam alone with this woman was not an option. Thankfully Justin had come to visit giving me a small break with Lanie and Kayla. We start the feeds at 16mls per hour and wait an hour to see if he can handle it. Within a few minutes he starts to develop a cough and sneezing. By the time we have his feeds on full at 32mls per hour about an hour later, his cough worsens. Justin leaves and takes the girls to go home so.I'm back at the room watching Liam. Within. 2hours of full feeds Liams cough is bad again. While he was on just nothing or Pedialyte he didn't have a cough. Then at 4:45 Liam throws up green again. We stop the feed and wait for the doctor to fall, clean him up and change the bedding. By then the official say is to take the feeds down to 10mls then work back up. At 8pm during vitals we see that Liam developed a fever of 101. We give tylanol and finnaly 2hours later it lowers slightly to 99.1. I'm starting t wonder now. When we brought him in 3weeks ago Liam was running a fever just like now. His blood work 3weeks ago and now both show elevated white blood cell count. He was vommiting 3weeks ago but it was mass quantaties of formula where now its green bile backup because nothing is going into the stomach. Now I'm wondering if the GJtube was a waste of time. I talked to genetics and they're going to wait for neurology to make their report before they make a game plan. They did share with me that they think its a genetic issue and that if he is having seizures that's its just a peice of the puzzle that they are now desperately trying to solve. My game plan is to write everything down on paper to show them because it'll be easier for them to comprehend the puzzle that I'm starting yo put together. I know that there is a lot going on in Liams body but there is a lot of people trying to figure it out and fix it. Please keep praying for little liam. Sent from Yahoo! Mail on Android