36 hours

I wanted to send out a quick update.  Braeden has been busy the past 36 hours since surgery.  A lot  happened yesterday afternoon and throughout the night.  I am going to break it down into a problem list of sorts, some of the things he has dealt with the past 36 hours.

Physical therapy/Occupational therapy 

They stopped by together as a team yesterday to get Braeden up to walk.  This was not an easy task for him.  He is unable to walk on his own.  They are suggesting it is a sensory and an edema issue.  He says he feels "sharp pins and needles" in his feet.  Hopefully, both of these will resolve soon.  

There is a test they keep doing to get an idea of what he is able to to "sense"  Basically, it is moving his toe up and down, and having he say whether his toe is up and down.  He missed quite a few of these when the Neurologist performed this test shortly before PT/OT came to visit yesterday.  OT worked with him after the short walk, and Braeden was very frustrated with how difficult the exercises were, and how poorly he was able to do them. After both teams left, it was the first emotional break I have seen him have since all of this has begun.  I believe he didn't imagine that it would be so difficult to achieve walking or doing something as simple as squeezing a ball.  

Pain control

Braeden was refusing any pain medications other than Tylenol for most of the day.  It was obvious he was hurting, but he was trying to tough it out. The staff and I have talked to him about staying ahead of the pain instead of behind it.  His body doesn't need the stress of being in pain while he is trying to heal.  Thankfully, last night he took a pain pill around dinner, and then he asked for one around midnight on his own.  

Worsening loss of feeling in his leg

Last night, Braeden relayed to me that he was having even more issues feeling his legs.  I asked for the doctor to be called to evaluate him.  They didn't seem to be too concerned, thought that it was possible that not feeling his thigh was his baseline, and that Braeden didn't realize it.  This is obviously something that will be monitored by us over the next few days.  He is also complaining this morning that his left leg feels heavier than his right leg.  Another thing to keep a check on.  (Braeden is not a complainer, and I feel that anything he mentions warrants follow-up)

Irregular/slow heart rhythm/low blood pressure

He needed fluids for his low blood pressure which has improved.  His monitor was showing an irregular heart rate and rhythm. He got an EKG around midnight last night that showed a sinus arrhythmia.  They did labs to try to find out what was causing this.   His phosphorus seems to be the bigger culprit as to why this is happening.  They began IV phosphorus during the night.  This drug is very tough on the veins and is being given at a low dose over the course of  the day. They are also giving him magnesium and calcium to try to improve his electrolytes and hopefully all of these things together will fix the EKG issues.

Fever

Braeden had a temp of  99.0 last night, and again this morning. In the hospital world this does not concern them.  Keeping a close eye on this considering his "other history" and what having a fever usually means for him.

Standing

I was able to get him up this morning at 5 to stand by his bed to use the bathroom. (I use the term bathroom very loosely.  He described the urinal this morning as "a very small target" and "it's not manly enough."  (Love his sense of humor, I hope he keeps it throughout the day.)

He was able to stand with my support and without too much of an issue with swaying.  But we only stood, he didn't take any steps.  Hopefully, when PT comes today, walking will be an easier task for him today.  One of the neurologists did the "bending the toes up and down" test this morning around 7 and he didn't miss any.

ICU

We should be moved out of here today once a room is available.  He is more than ready.  In the PICU,  the rooms are not private and he has a very young and "loud" room mate, whose mother's cell phone has rung LOUDLY all night long the past two nights.  

Braeden'ism for the day

I will end this blog on a funny and so Braeden note.  Yesterday morning,  we were talking and our conversation went something like this....

Braeden- "Mom, when people ask me what kind of surgeries I have had, what should I say?   Spinal or Brain?"

Me-  "Say both of them, because you have."  

Braeden- "OK Mom,  I was just checking, I didn't want anyone to think I was an overachiever."

This kid has all of my heart....keep the prayers coming, he still needs them

#BraedenBrave

#MrUnlucky