Day 3: 1/17/24 (Wednesday)

Wednesday started out pretty rough for our little guy but ended very well.  After he got out of surgery on Tuesday night we came back to his room and he slept off the anesthesia for several hours.  Ali and I felt great about the day and were relieved that they were able to accomplish everything they wanted to with his surgery.  We even had a date night, cheeseburgers from the cafeteria on a TV tray in Mark's room.  It was perfect.  

Shortly after we fell asleep, around 11pm, Mark's monitors started going off for his heart rate.  His heart rate was rising because he was in pain.  The anesthesia was starting the wear off and they did not want him on anything stronger than Tylenol.  The doctors wanted him to feel pain in his head if there was bleeding or swelling so they did not want him on any narcotics for the pain.  He was able to communicate that the pain was not in his head anymore but on top of his head where they made the incisions.  It was a relief to hear him tell us that his head hurt but that it wasn't inside for the first time in a couple of weeks.  

Resting in between scans and visitors.

This went on for an hour or so.  We would get him calmed down and they they would go up again.  At one point they agreed to put him on a low dose of something but he had to eat something first.  He ate 1/8 of a graham cracker and got sick.  Poor guy just wanted to rest but couldn't get comfortable or relief. Ali was finally able to get him to calm down and take deep breaths.  He was finally able to fall back asleep around 4 only to have them come at 4:45 to get him for his CT scan.  They wanted to make sure that everything looked good in his head from the surgery standpoint.  

He asked where we were going and when we said that they needed to take pictures of his brain again he got upset.  That is what we told him about the MRI so that is where he thought he was going.  We assured him this machine looks similar but this was going to take just 90 seconds and not make hardly any noise.  He trusted that we were telling the truth and felt better.  Got back to his room after the scan and he got to open a care package that he got.  There was some awesome stuff in there, a new Rubik's cube, some Lego sets, candy and other treats for him.  This really brightened his spirits.  Of course he wasn't able to go back to sleep before solving the Rubik's cube.  The good thing is that he can do it very quickly so after that we all enjoyed a really good 3 straight hours of sleep. 
​

Mark with the rehabilitation nurse.

Wednesday morning he was still pretty out of it but he was feeling better.  Ali's sister, Branda, dropped Jameson off at the hospital for him to spend the day with us sometime around 10:30 Wednesday morning.  This was the first time that the 4 of us had been together, just us, since Sunday evening.  Just being together as a family unit was cathartic. There is a special bond between these two brothers.  He is very protective over Mark even though he would never admit it. My brother-in-law said it best the other night but Jameson has the mentality of, "nobody/nothing can hurt my brother but me".  Mark lights up when Jameson walks in the room and his whole demeanor shifts.

Jameson got to visit us for the day.

There was a constant barrage of doctors, therapists, opthamologists, oncologists, nurses, cleaning people coming in and out of his room for the next several hours.  It was almost comical at one point, like they were waiting in line outside his door. All we wanted to do was go on a walk and eat something.  Mark had a real moment of home sickness and Ali had a conversation with him that they were not going to let him out of here unless he was strong enough to go.  He needed to be eating, drinking and getting up and moving around.  That was all he needed to hear.  

Just as we were leaving the room to go take a walk down to Chick-fil-A for a late lunch the therapy dog showed up to visit Mark, a beautiful yellow lab named Crosby.  Mark got to walk Crosby down the hall.  I know Mark misses his dog, Mila, but just being able to see and pet a dog made him happy.  We said goodbye to Crosby and we walked to Chick-fil-A, across the hospital and all the way down on the 3rd flood (we are on 10). It was pretty impressive to see him moving about like this less than 24hours removed from brain surgery. I'm telling you, the kid is a quiet fighter and when Ali told him he wasn't going home anytime soon unless he was strong enough, he internalized that as a challenge.  He did over do it a bit and we had to take him back to the room but it was impressive nonetheless.

Mark's new pal, Crosby.

The rest of the afternoon we just rested and had quiet time.  Our friends really came through for us today.  One of our oldest friends (by tenure, not age) brought us a nice hot dinner and some laughs.  It was so good to see a friendly face.  He lives a couple of miles from Ali's mom, so he was also able to take Jameson home to her for the night.  Thank you again T!  A couple of our other great friends drove from their home in southwest Houston to our house in College Station to get our dog, Mila, and keep her until we know what the plan is.  We know she is being spoiled and really just hope that she wants to come home after staying with them.  Thank you E & M!!  Our next door neighbors have been watching Mila since we ran out the door on Sunday afternoon.  They have done amazing taking care of her and loving her.  Braving the frigid temps to go over to our house so Mila could get outside for a bit.  Thank you J & C!! All of you have been so selfless with your offerings of help and you have no idea how much that helps to know that the help is there if we need it.  Over the coming weeks and months we are probably going to need help.

Mark is feeling the love and support y'all.  Please keep it coming.  We read several messages to him today from you all.  I'll be honest, it is hard to read these without choking up.  He got a bunch of videos from his teacher today with videos of his friends at school all wishing him well. Very, very heartwarming and uplifting.  These are all the things that help him and us just win that day.  That is what our goal is at this point, win the day.  We are not looking big-picture yet.  Win today and deal with tomorrow when it gets here. 
​

Walking down to Chick-fil-A on the 3rd floor of Texas Children's Hospital.

Night time was upon us and Mark was feeling good.  They removed his heart rate monitor and all of the other noise making monitors.  All he had left was his IV line.  He was able to get a nice hot shower before chilling in bed and watching a couple of shows on his iPad. He felt the best he had felt since we have been in here and most importantly it was the first day since New Years that he did not have a headache.  Huge.  

At some point towards the end of the day his neurosurgeon came by to check on him and see how he was doing.  He had read all of reports from the barrage of doctors and specialists earlier in the day.  He was impressed that Mark walked all the way to Chick-fil-A and thought that 24 hours post-op Mark was doing great.  He said that he does not like to keep kids in the hospital any longer than they need to be and that they heal better at home.  We are hopeful that if Mark makes as much progress on Thursday as he did on Wednesday that we might be able to go home by Friday or Saturday while we await the results of the pathology report.  Day 3 was definitely won.  
​

A much more relaxed night after the heart monitors were disconnected.

Please pray for Mark's continued healing.  Please pray for his strength to return home.  Please pray that the doctors are able to find out what is going on in Mark's brain and use their wisdom and expertise to cure him of whatever it is.  Please pray for Jameson who has been absolutely selfless throughout.  Please pray that God watches over both of our boys always, but especially during this difficult time.  Please say prayers of thanks for all of the love and support that we have received, for the successful surgery on Tuesday and for hope. 
​