Post-Op Day 6

Day 6 is an interesting one as it did represent the early range (6-15 days) we were given for Jake's stay in the hospital of this surgery. History has set a precedent and we know that Jake tends to be on the middle to later side of any ranges were are given for hospital stays.

Last night provided the first of some interesting developments with Jake.  Around 3am he refused to go to the bathroom.  It appeared to be a aversion to going to the bathroom in a diaper.  For a kid, the hospital claims may have some delirium, this appears to be a coherent decision.
Come morning it was important to us to discuss with the doctors the plan for Jake.  He was communicative with us and clearly with the bathroom situation was exhibiting signs that he knew what he wanted and wasn't afraid to signal us.

The Plastic Surgery team came by during rounds and did discuss that they thought Jake could be ready for extubation based on our account but due to the OR availability and schedules it was most likely to remain Thursday.  We had our concerns because Jake was clearly uncomfortable constantly pointing to the tube, was communicative and had received 2 full flights of the steroids to reduce the swelling in his throat.   Jake started to become more irritable and tougher to control in his bed.  Thrashing around and unhappy, Jake even used his feet as leverage against his bed rail to push.  What was more concerning is that even with the intubation, we could hear Jake making noises as he tried to speak to us.  During this chapter, Jake was pointing to  his diaper and was nodding when we asked if he had to pee.   We tried to encourage him to just go in the diaper but he shook his head vigorously no.  He kept kicking the diaper in disgust and reaching his hand toward it.  Finally, we asked if he wanted to go in the plastic container and he shook his head yes.   Sure enough, as soon as we got it in place, Jake relieved himself.   It was unbelievable that a kid who had been drugged more than imaginable who was claimed to have ICU delirium was aware enough to refuse to go in a diaper and clamored for the plastic container.  We shook our head in disbelief at his refusal to go in the diaper and he even went a step further and made us take the diaper off.   Jake was angry and it made us realize that why should we keep him unhappy in all forms for an entire day.  How many medicines and other items would he have to be given to relax him enough to wait another 24 hours for extubation.

We had seen enough and requested that the nurse summon the attending PICU physician so we could discuss the plan of action.  We clearly explained that Jake was self aware enough and we were concerned about giving him a ton of drugs to calm him when a major source of agony for him was the breathing tube.  We advocated that Jake should not have to wait for when convenient scheduling of the OR if the other signs indicated he could get the breathing tube removed today.  Must have been  a convincing argument because PICU and Plastics conferred and decided if Jake passed some of their preliminary examinations, we could extubate this afternoon.   Huge Win for Team Jake.

As the time drew near, we grew very nervous for the procedure based on our last go round.  Jake of course had other plans.  He was busy taking a nap.  Half of the staff was waiting around but Jake didn't want his slumber interrupted.  He woke up about an hour after the scheduled extubation and we were ready to begin.  This time around, the process was very smooth which was a huge  relief for two very nervous parents.  Jake was free!

Once we gave Jake a breathing treatment, he emerged agitated and a little grumpy.  Jake decided that it meant he was ready to go home.  Jake can speak in a very low hoarse whisper and he simply kept saying "carry me, let's go home."  We had to convince him to relax and take things one step at a time.  It took some coaxing but Jake was pretty unhappy staying in bed.  After some cuddling and discussion, Jake had some Adovan and it really helped calm him down and take a nap.  The rest of the afternoon has been pretty uneventful as Jake has been resting free of his breathing tube.  We are so happy for him and we look forward to his continued recovery and what we hope to be a departure from the PICU to a regular room tomorrow.