Still Waiting...

We had a rough night last night. Dominic didn't finally fall asleep until about midnight. It doesn't help that people come in every hour to check his vitals. He was really cranky and had been running a temp most of the evening. At 1:00 am he was up again, crying. Then again and finally at 3:00 I just decided to sit with him the recliner and sleep holding him. That worked but he was up at 6:00 am. So, like I said, long night :o) No one is really sure what's bugging him. The fever can cause irritability, but not this much. This morning when Dr. Sood saw him, he decided to order another round of blood work and another CT scan. As it turns out, there is fluid on the outside of his brain on his RIGHT side (not the side that was removed).  It's hard to know at this point what that will mean. Everything in his skull is sort of shifting after having part of the brain removed, so it's not uncommon for fluid to accumulate on the opposite side. Unfortunately, this could also mean he needs a shunt. It's not a for sure thing, it could really go either way. His body may absorb it and it won't be an issue. But if fluid increases, they'll need to put in a shunt. So, we're back to waiting. Dr. Sood wants to monitor him over the next couple says (so much for going home tomorrow) and see if his demeanor gets better or worse. If he seems to get better and the fevers stop, he may send us home and have a follow up CT in a week or two. So, hopefully we'll know which way this is headed by the end of the weekend.

CT Scan

Our room is constantly filled with people. Between the nurses, nursing students, neurologists, neurosurgeons, pediatricians, nutritionists, physical and occupational therapists, child life specialists and the IV team, we're pretty busy all day. Physical and occupational therapy have been coming each day to work with Dominic. Stretching him and encouraging him to use his right side. He had two pretty big steps forward today. He was lifting his right arm up to his face and clasping his two hands together. He also sat up for quite a bit. While these are things he's mastered before, he was expected to regress and be weaker for several weeks post-surgery. So, this was very encouraging to see. 

An OT working with Dominic

Look at all those stitches! Incision looking good.

Not a fan of tummy time

And we're sitting!

In other news, Mike brought Mitchell up to the hospital for the afternoon. Mitchell and I got lunch and had a picnic in the courtyard, which is actually very nice. It's pretty much the center of the hospital and university campus, so always a lot of people walking around. Plus they have a nice little "healing garden" to visit. Things were up and down with us. I could tell from the minute he got here that he was tired, so that never helps anything. But he was screaming as we walked down the hall because he wanted to go out the door first. Then he didn't want to get lunch because he wanted to stay outside and listen the music that was playing. He wanted me to carry him when I had two drinks and two bags of food in my hands and when I said I couldn't, he freaked out and started screaming. It's embarrassing and I'm sure people think he's a brat. I'm trying to cut him some slack and not get frustrated because I know he's going through a lot too. But it's incredibly hard for me to want to do fun things with him and try to spend quality one-on-one time with him when he is constantly screaming, crying or whining at me. I'm already sleep-deprived and stressed out and having my first born despise me doesn't help. I just keep praying that once are are all home, things will settle down and we'll all chill out a little. Regardless, I still need to make time with him. Even if he whines and pushes me away the whole time, he needs to know I want to be with him no matter what. Mike took him back to his parents' house and will spend the night there again and will then bring Mitchell back in the morning and stay for the day.

Lunch with Mom

The Healing Garden

He's so happy to be here

Taking Little Brother for a walk

I was talking with my mom today and she shared with me her devotion from this morning. Dominic was very heavy on her heart, as he is most days, but today especially. She prayed for what she needed to hear today and this was what she opened to. I have bolded the parts we both found incredibly moving:

You Shall Move Swiftly

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God" ~ Philippians 4:6

Behold, out of gross darkness, a light will shine. Out of the night a cry will be heard. For I will make My will known to you, and you will no longer move haltingly, you shall move swiftly and surely. You may not know what I am doing as yet, but you will know hereafter, and you will be moved by My divine unction and authority. You will not be left to falter as a blind man searches out his way; with your hand in Mine, we will move together. My Spirit will be apparent by your life and testimony, and you will be empowered by My might and power. My strength never fails. Yes, I will be to you an energizing and quickening power within you and upon you, and you will go in the strength of your God. You will not fail; nor will your arm droop nor your foot lag.

It's amazing how God give us what we need when we need it. I found this to be very uplifting and encouraging, seeing that Dominic is peripherally blind in one eye and has a weak arm and foot. I feel like it was written just for Dominic. I am anxious to see what God has planned for him and how He will use Dominic's life and testimony for His glory.