Post Op Day 6 and 7

When Phillip and I arrived for rounds yesterday we had just missed the team, they were feeling quirky and started at the opposite end from what we had gotten used to.  Keller was irritated during rounds and the team felt unsure they would be able to do a successful MRI on him without intubation so that test was moved to the back burner.  The EEG was done and they had ordered another ultrasound of his head.  His morphine had been stopped since it didn't seem to be helping and he had also stopped having dirty diapers.  

Yesterday was a pretty good day he actually woke up and looked at us and not through us.  It was good to see him awake without crying and also to have him see us.  Phillip and I were both able to hold him, it seemed that holding him helped to soothe him. They started trying to remove some of the lines and medications that are holding us here in PCICU.  They removed his arterial line but are waiting to remove the central line until he has another IV.  Phillip and I feel that the central line could be causing some of his pain because of the sutures pulling on his neck. 

Phillip went back to the hospital after dinner to check on Keller, he had been upset but Phillip was able to calm him.  Phillip got Keller's monkey that he gnaws on and Keller started chewing.  He seemed to settle so Phillip came back to the hotel and we all went to sleep. 

When I got to Keller this morning his nurse said that he had a rough night, spending most of it crying.  While we waited for rounds, Keller woke up fussy and the nurse let me hold him and calm him.  The medical team decided that the MRI was back on, they also wanted an ECHO of his heart and started a conversation about delirium.  They chose to consult psych and have him assessed.  There are several things that could be contributing to his irritability and because we cannot ask Keller what is perturbing him they are trying to rule things out. Pain wise he is getting oxycodone.  Hunger wise, a dietitian rounded and he should now be getting the appropriate amount of calories for his size and needs.   Some of this fussiness has been Keller's normal, he is very intolerant of gas pain.  Some of it started when he got so dehydrated earlier in the month.  Some of it is new.  The question is if it is worse.  There is a medication that could correct the problem if it is indeed delirium.  If he has a fussy night they will start him on that medication.  He may need a couple of doses but the psych doctor told us that if his problem is related to delirium this medicine will fix it, if it is unrelated it will do nothing for him.   

The echo came back and he does have a moderate amount of valve leakage that is most likely caused from the fact that the right side of his heart had to work so hard so long.  A new medicine should help with the pulmonary hypertension that he has developed.  The doctor says that over time it would get better but this medication will help Keller adjust more quickly.  It is too early to tell if another surgery will be required.  Keller will be closely followed by his cardiologists and should the need arise to correct it, they will let us know. 

They were able to get the MRI, it was truly a miracle. The nurse gave him a bolus of his sedation medication and somehow Keller slept through the loud banging and bugle blaring.  We are still awaiting results from that.  

We are all getting tired.  It's been a long week.  Because of a lack of progress we feel like the wind has been taken out of our sails, not to mention to hear that our 4 month old needs a psych consult, could be delirious, and is having valve leakage.  Mom and Norah have been hanging in there but no matter how you cut it, hanging around a hospital makes anyone feel drained.and perhaps a little delirious.

In order for Keller to be moved to a regular unit he must get off the sedative medicine and stay off of it.  If he can get off of it then they should be able to remove the IJ (central line in his neck).  If those things happen he should be able to move to "the floor" and our of ICU.  For everyone's comfort it would be nice to have IV access but because he is so hard to get an IV on and he sweats like crazy it could be hard to get and hard to keep.  Keller is making the pace right now, we are all following his cues, but the pace is a bit slower than we had prepared for.