Day 457 - Day 2 Back in the PICU

Friday, April 1st, 2022

April Fool's! I wish! No Mom and James are still in the Hospital! 

It was a very long day for Mom on 1 hour of sleep (6am-7am) in the good ol PICU chair. Our Day nurse was super nice and remembered James from the NICU even though we never had her before (everybody knows James). Dad was able to drive by the hospital around 12pm to drop off Mom much needed Starbucks and food. Mom had to let the nurse know that she would be running downstairs real quick to meet Dad and that she did her to stay in the room for a second. Even though it's only for a few minutes it's still scary to leave James by himself. Now that he is bigger, he is also stronger and can pull on things and disconnect himself easily. 

James was very vocal and let everyone know he could talk over his cuffed trach. This alarmed some of the Doctors and PAs who could not get used to hearing him and kept thinking something was wrong. Someone from Child Life stopped to bring James some developmental toys to play with! Cool things we added to our never ending Amazon Registry. 😂

In the afternoon his old Primary NICU stopped by to visit! She is currently training for NICU Labor and Delivery. How exciting! She is a very hard worker and will be excellent at anything! She was surprised to see how big James is now and how active!

Update:

✔️ Still waiting on results on sputum culture. But they started him on Cefepime via IV to get something started just in case

✔️ James still has a ton of air in his belly

✔️ Started James feeds again

Night Shift nurse just so happened to be an Intern we had in the NICU who was in training. Now she is on her own! Unfortunately James' IV came out while Mom was venting James around 7:30pm. Kind of impossible to hold up a syringe connected to his G-tube, block James from ripping out his G-tube, and prevent him from taking off the arm restraints (which is to protect the IV or he would pull it out). He managed to get his arm out of the restraint and it was only a matter of time for the IV to get loose. Mom called for the nurse to come in and she tried getting the catheter back in, but it came completely out. Then she stated that she needed to get James a new IV. This is when Dad showed up. Mom was very clear in letting her know that James required the IV team for any IVs especially after last night when a Senior ER nurse had to stick James three times. This night nurse said that she was going to just take a look but she wasn't going to touch him. Well about 3 minutes later she said she found a vein and felt very confident that she could do it. So how do you think it went folks? Awful. Just awful. She attempted and the catheter was going over a vein so when she flushed everything turned white. It looked really bad. Mom has seen enough of these to know when it didn't work. At that point Mom spoke up and said that she would like James to not have an IV since he can get antibiotics through his G-tube. The nurse said she would talk to the doctor to see if they would agree; which they did. Mom understood that the nurses need to do their job and not look incompetent to the doctors by avoiding IVs and such. At the same time James has been poked too many times and we are sick of people practicing on him. What could have Mom asked the nurse to have her admit that she just wanted to practice? Nothing. 

Dad switched shifts with Mom so she could sleep at home in a bed with an empty house with no alarms or beeps, for the first time since August. It's been 8 months of pure adrenaline at home. For the first 8 months Mom spent an occasional Saturday night at home while still pumping around the clock. 

Tomorrow we are hoping for some answers and possibly a discharge!

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com