Grid Placement - Day 3

Today has been the hardest day so far - at least it has been for me. 

It started out with his night nurse trying to flush his IV at 5 AM and realizing it had backed out. They attempted to put it back in and because he jerked away it backed out even farther. All this while I am holding him down in my lap and bawling. The poor baby was crying in PAIN! JB had enough of this and told them to quit trying to "fix" the IV. They agreed and started a new IV. The nurse was able to find a vein and get the IV started so easily. I had stepped out during this so I was surprised that they finished so quickly. 

His poor hand where the old IV was is so puffy and full of fluid that didn't go into the vein.

Dr. Tandon's resident stopped by and said the blood labs came back fine. His cough was bad this morning but they didn't worry about it. He has had no fever and his white blood count isn't elevated. If anything this is viral and is of no concern for surgery. 

With all the pain medications Jace has not pooped. They said once he pooped he would feel better! Prune juice didn't work, extra fluids didn't work, nothing was working! 

We finally agreed to a suppository....after about an hour I started to regret it. 

He started to get cramps and became wild!!! He was crying, screaming, getting MAD and being WILD! Poor guy was in PAIN.......after 40 minutes of this behavior he finally pooped! After, we cleaned his diaper and he passed out for a nap! This was no fun and I hope we do not have to do a suppository again! 

Passed out

Before all this crazy behavior Jace had gotten wrapped all up in his cords and drain.....he ended up pulling a part a tube. All I saw was stringy blood and I freaked! :( It was no big deal but seeing blood from the tube that draining from his brain is a scary site! 

Dr. Tandon and Dr. Von Allmen stopped by and showed us a picture of Jace's brain and where the grids were placed. The VERY front of Jace's brain is the "bad" part. This is the area right above his left eye and to the middle of his forehead. Since this is not near any areas of his brain that control motor and such we do not need to worry about special tests that map the brain for movement and language. 

We are still having the surgery on Monday morning at 9ish in the morning. 

After changing Jace's bandages we were told we get to unhook Jace from the monitoring tomorrow! YAY! 

Less wires and less weight on that poor baby's head! 

This is great news but we had to add a wire to Jace today. He has asked us to eat but is refusing anything we offer.  He ate a banana but I worry that will stop him up more and I don't want to promote constipation anymore than necessary. Since he is no longer really eating he also isn't drinking much. This is mainly because I think he has realized that we added medications to some of his drinks. He hardly drank anything at all so we asked the nurse to put him on an IV drip to make sure he is getting fluids in him. We do NOT want to let him get dehydrated - its ok if he doesn't eat fine but the no drinking is not good. The nurses notified Dr. Tandon and he said will run lab work tomorrow to check everything. 

With the little pain medications that Jace is taking/given he is handling so well. He sleeps a lot but he needs to so he can heal. :) 

We had some visitors today! Ms. Lina stopped by while Jace was sleeping. Ms. Lina was Jace's teacher at his old daycare. We LOVE her! I wish I could afford to have her as our nanny! :) I would in a heartbeat! Jace finally woke up and his face was PRICELESS when he saw Ms. Lina! I should have had a camera ready! She brought Jace a Mickey Mouse and he started dancing the hot dog dance when she gave it to him. He was not up to playing much after that but he did attempt to play with the puzzles she brought. Thank you SO much Ms. Lina for stopping by - It was great to see you! 

JB's cousin and her husband brought us food as well today. They stayed around until we changed Jace's bandages. We really enjoy spending time with them! I cannot say how thankful we are of the meals from home and snacks they brought! Thank you SO MUCH Kendra and Kelly! 

Please keep the prayers coming! We still need them to make it through the day smoothly! 

Its been a rough day.......Praying for an easy night and a MUCH easier day tomorrow! 

Thank you and we love you all!!