Hospital Down Time

Many tests have been done.  Many doctors have discussed, reviewed and discussed more.  Many labs have been done.  But that still leaves us with a lot of down time.

In between the down time:

• Brayden finished his 24 hr EEG.  Nothing remarkable on the EEG.  But lets be honest, Brayden's brain is so abnormal, we are never really convinced an EEG will tell us much.  The neurology team is fine with Brayden's current seizure control and medications.
• A new doctor to the mix - Complex Care doctor has been just that...looking at the complexity of Brayden's medical history.  This doctor seems like the puzzle master, looking way back in Brayden's file all the way to things currently happening.  Looking for clues, trends, abnormalities.  Jeremy spoke with him for quite some time and then they conferenced me in the discussion.  The discussion with this doctor deserve a blog post all to its own but I don't have the mental capacity for that right now.
• Abdominal x-rays done.  Brayden had some odd abdominal x-rays his past few stays...we thought it was just a tooth gone rogue but it seems to have been some other type of inconsequential calcification.
• EKG done, since potassium troubles can have direct troubles for the heart.  Thankfully Brayden's heart seems chugging along just fine.
• Labs, labs and labs.  Still checking those electrolytes and now the liver.  The electrolytes are all trending in the right direction.  Brayden's liver numbers were a bit off but we are not sure what that means yet.
• GI and nutrition are always part of the plan.  Brayden's ileostomy output has increased, in a good way because of the IV fluids and extra electrolytes.  As of this evening Brayden has been taken off IV fluids and electrolytes.  They have put him completely on j-tube feedings of his regular formula but added something called Oral Replacement Solution (basically a supped up version of Pedialyte).  Give this to him over night and check his labs in the morning.  The teams of doctors want to give him time on a home regiment to see how he would respond.

Speaking of responding.  Brayden has been responding better than we have seen him in many months.  He has spent the past couple of days with more awake time than he has had in months.  He has been alert and very responsive.  Below is video of him happy with a movie, then when he is not happy with a song in the movie.  Oh how I love to hear his voice.  Brayden has "talked" more in two days than we have heard in a very long time.  He is feeling good when the right stuff is going in and coming out of him.

Talk about it from Carrie Jenkins on Vimeo.

In the actual down time, we went on a search for one of his beloved animals.  I brought one with us to the hospital.  But when I arrived this morning, it was gone.  I questioned Jeremy and he had no clue. I may have gone through the trash and dirty linens buckets to look for it.  I needed to find this stuffed animal, it is by far Brayden's favorite. I asked just about anyone who came in the room, giving a description like it was a lost person report.  A nursing student realized she had seen one similar in description...in a basket with the EEG machine.  The EEG machine that was removed for the room yesterday morning.  Sweet puppy went for an adventure in the hospital, taken to many places in the basket of the EEG equipment.  That EEG machine was tracked down and he has been returned. These cubby hands are quite happy to hold on to him.

Jeremy headed home to be with Carter and Luke.  Brayden and I are hanging out.  What are we doing?  Brayden has enjoyed the movies Aladdin, Happy Feet, Cars and Lion King.  He is not quite a fan of Tangled.  I have enjoyed watching Comedians in Cars Getting Coffee and Carpool Karaoke (I cannot handle anything deep so we keep it light at the hospital).

As for when Brayden could come home?  Maybe tomorrow night...at least that is what they said a couple of days ago and haven't really said that since, but it still counts because they said it.  A lot will depend on the labs in the morning.