Day 3 Post Surgery (Sunday 3/3/13)

It was a rough night with lots of pain. MJ’s neck is really bothering him – it is extremely stiff and sore. It seems like we are maxed out on pain meds and it still bothers him. Neither MJ nor I were able to get quality sleep last night. I am getting really worried about his pain and mobility. He is so afraid of pain he doesn’t want to push his own limits and get out of bed or even hardly move on the bed. And I know the more he lies there the worse it is going to get. It is like a vicious cycle and somehow we are going to have to figure out how to break it.



MJ sitting up coloring!

 I have been trying to encourage MJ for the last day or so to sit up in bed more and color on his table or even read a book. I am trying to find ways to get him to sit up more and get his head off of the pillow. Up until now he has been totally resistant to much movement. The surgeon told us out of all brain surgeries they do this is one of the most painful because of the route they have to go messes with all of the muscles in the neck. I can imagine the pain and wanting to guard his neck poor thing. Later in the morning on Sunday morning however he did get into a fairly good mood (and by good I mean not complaining of pain and wanting to do something other than lay in bed and watch TV) and we got him to color!

Day 3 challenges we faced:

The meltdown - Part of MJ’s sensory issues causes him to have a HUGE fear of adhesive. The kid can’t even stand to wear a band aid because of the pain it causes him when it is removed. The few times he has had a band aid in the past I have had to soak it off with water and I had to really talk him through it. MJ had one IV in his hand and one in his foot. Of course the tape they use to keep the IV’s in place is like torture to my little guy. We have been keeping a sock on his hand because he can’t even stand to look at it without anxiety.

MJ had a major meltdown today after we discovered the IV was not working in his hand and needed replaced. MJ’s dad Dan, myself, and his nurse Holly spent about 15 minutes trying to talk him through our options. The one in his foot was still functional but ever since we left ICU he won’t let anyone touch it (he wouldn’t even let them take it out after ICU so they just capped it). We could go the easy route and she could use the foot IV since it was already in, or he could get a new one (with a poke) in the other hand, or he could start taking oral meds. He was so overwhelmed in fear he decided to go completely without any meds – refusing everything. When he gets to meltdown mode there is no reasoning with him and it only makes things worse to continue. I asked the nurse to come back later and that we needed to give him time to calm down.

After we calmed him down for a while I talked to MJ about oral meds. There was no way I wanted him to go without anything – I was so afraid of his pain once everything wore off. I tried to reason with him but he was still not having it. At some point you just have to make a decision for him. So I had the nurse get some orange juice, told him we are going to take a sip of juice, squirt the medicine in his cheek, then take another sip of OJ again. I got about ¼ of the med squirt in his mouth and he ended up throwing up because of his gag reflex. Ugghhh….Yup – when Autism and hospital stays collide. We were there. We were out of options. It was now a wait and see and just pray that when his pain med, nausea med, and anti-anxiety med was fully out of his system that it wouldn’t be complete misery for him and everyone else. I was so sick to my stomach but we were out of options and just had to see what would happen that night.

Day 3 accomplishments:



MJ knocking the toy
off his head with PT.

 MJ was more open to participating in PT (physical therapy) since we got more creative and making it more of a game. He did a great job moving his neck a bit more to try and knock a toy off (this was previous to the meltdown of course).

In the afternoon to get everyone’s mind off of meldowns and meds I told MJ if he got into a wheelchair out of bed we could take him to the playroom. To our surprise he was willing to do it. With very specific requests about the way he wanted his wheelchair with pillows and blankets I got MJ into the wheelchair and he stayed up for about an hour playing video games. Yay for getting out of bed!!

First time out of bed since surgery!

MJ is showing better interest in drinking and he actually said he wanted to eat! We ordered him an early dinner (his choice of food) and he ate about 5-6 bites. Good progress!

Day 3 goals:

Get him to take oral meds to manage his pain

Get him to stand/walk.


I think this was the toughest day emotionally since surgery. MJ was showing the signs of PTSD (post traumatic stress disorder) that the surgeon predicted and although he has handled things fairly awesome to this point he has reached his boiling point.

We just pray that God can get him through with little to no pain so we can get him to walk and get him out of here. Thanks for all of the extra prayers today. I wish MJ understood just how many people he has out there rooting for him. I can’t wait until he gets old enough to truly understand.