Its been a hectic and busy past week to say the least. I spent most of Friday & Saturday up at the PICU helping out. Sunday was Aidan's birthday we had his Harry Potter themed party, lots of fun stuff to get ready for that...
Can I just say that Hubby is reminded just how tough my "job" is since he got to spend the ENTIRE day Saturday with all four kids by his lonesome. He needs those little reminds occasionally. ;-)
C is doing really well. His ICP (inter-cranial pressure) has continued to stay down in an excellent range. He started to regain consciousness over the weekend. He was fighting the sedation which is so typical for children... don't they understand when we drug them to sleep we want them to sleep. :-) Mom & Dad were finally able to get some sleep Thursday night and have been able to rest each night which has been wonderful. The Ronald McDonald House is truly a blessing... though whose idea was it to put metal window frames with metal blinds to tap, tap, tap against them all time long!!! Roll of packing tape took care of that Friday morning. LOL!
Friday they hooked him up to an EEG machine. There was lots of lovely wonderful brain wave activity. Not too much but also in lots of different places. Child#1 went up Friday night with Hubby and she sat with
C for a while, held his hand and talked to him. His brainwaves responded to her voice, in different areas than he responded to Mommy. Again totally awesome. We talked about it and she's wants to start going up and sitting with him often and reading to him. I explained to her that even once his head injury wasn't as big a concern as before he is still looking at a long recovery just from the fractures. Lots of time immobile so she really wants to read with him and then as time goes on they will be able to talk about the books (future book club!).
He "passed" his first neuro exam Saturday morning with flying colors. Could squeeze the correct hand and twitch the correct toes when asked even while sedated on fentanyl. The doc was very pleased figured at least a 93+% of recovery just from those results. They are trying to slowing wean him off the heavy meds so that they can start to address some of the other injuries. He is responding well.
The first couple of days were really hard because of the medication he was on causes a kind of amnesia. So every time he started to wake up he had no idea where he was and what was wrong... why are there tubes all over and one down his throat. Strong boy kept wanting to get out of bed and yank out the vent tube.
They have been able to reduce his respiration dependancy on the ventilator significantly over the weekend. We are hoping they will be able to remove it tomorrow.
He finally had his big MRI Tuesday night. Turns out their next door neighbors are friends with a woman who's parent donated the "Simmons" MRI machine that sits in the OR to help entice Dr. George (one of the best in his field) to Dell from Duke. That is the same machine (and Dr) that is putting
C back together. The results of the MRI were super positive. There is some bruising on the frontal lobe from the impact of the brain moving inside the skull and some of the back where the basel skull fracture is which "might" cause some minor "personality" changes but he should return to himself over the next year. Meaning no signs of permanent brain damage!! Still some internal bruising on the lungs but that seems to be healing well. The pelvis/hip is gonna be the main concern and the neck. Once they can take the breathing tube out and he can tell us exactly where and how it hurts they will be able to do a lot more to correct it.
Wednesday morning at about 5am the Dad was woken up to a ton of alarms going off. He looked over that the bed and
C had disconnected the breathing tube, pulled out a bunch of his IVs and was half way rolling out of the bed trying to make a break for it. He was ready to go. :-) Talk about total scare the bejeezus out of everyone. I was sitting with him later that afternoon and got a total full eye contact recognition from him which was awesome. He suddenly tried to sit up again (like usual, he wants out of the bed so badly) I was quick to his side to get him to lay down. I said "hey you" he looked up right at me and his eyes locked with mine (I saw the recognition) and I said "hey I know you and you know me too huh?" I got a HUGE grin. So he is definitely in there.
He has been improving in huge leaps and bounds. When he was first brought into Dell, they told us to not expect to really talk to him for several weeks. He is communicating with blinks, nods, shakes and shrugs since Sunday! He shrugged today!! His mom was holding his hand and he kept pulling it away. She asked if he wanted her to hold his hand. He shook his head no. She asked if she could put her hand on his shoulder. He shrugged. She told him since he didn't care she was gonna put her hand on his shoulder. He just shrugged again. CLASSIC 9 year old.
Yesterday was a good and rough day. They took his breathing tube out early that morning. He kept trying to get out of bed to hide in the bathroom to get away from "the man in the truck that was coming"... totally heartbreaking. He also had trouble recognizing his Dad who finally had to leave the C's room for a while so they could calm him down. Within a few minutes he was able tell them Dad's cell number and wanted them to call him now! It is totally common for recognition issues to happen with a TBI but it is still hard. It will continue to happen and then improve over time. He also ate some pudding which was great, no issues with his swallow reflex. He remembers that football is his favorite sport and knows who his coach is.
Today his Dad said he's back to the old
C we all know and love. They also believe that the hip that was damaged is still weight bearing so that is a very positive thing. Small steps, small steps.
So he is doing awesome but still has a looooong road ahead.
