The Days Go By

2012 is officially here.  We are still in a waiting pattern with Kai.  He was taken into the OR yesterday morning and they did another bronch, with Kai completely sedated.  Nothing more was really found except a small mucous cyst (normal) near the bottom of his trach tube.  They cauterized it and placed the longer temporary trach while we wait for the custom trach to come in, which arrived today, we are just waiting for ENT to come put it in.  From that point, Kai will be transferred back to the 3rd floor (aka the Childrens Surgical Unit--CSU, the L-Pod, and the Trach-Vent area).  He had been transferred there from the PICU two days ago, but since he has the temporary flexible trach in, he had to go back to the PICU until the custom trach arrives.  The L-Pod is a lower level of care--the next step before Kai gets to come home.

Yesterday, after being in the OR, he was surprisingly happy all day long, and awake.  He slept a good portion of the night and has been awake and on the fussy side today.  Even with the longer trach his CO2 levels are still high--from about 58-72 range.  Obviously, the more agitated he becomes, the higher his rates go.  The purpose behind the longer trach is not only to help with the trachialmalasia (by keeping the trach part of his airway open), but also to help with his CO2 levels.  The doctors were hoping that having the longer tube, the vent would push the air into his lungs (and out) more efficiently (and hopefully to avoid more collapse) so he would blow off more of the carbon dioxide.  So far, we have only seen a slight improvement, but we will take it!
The gray box next to his mouth is what measures his CO2 levels.  He gets that machine instead of constant needle pokes--an improvement in my view.


Kai has had some wonderful nurses the last couple of days.  What a difference a great nurse can make!  His nurse yesterday actually had two trach babies to care for, and she did an amazing job caring for both equally.  She was also attentive to me, making sure that I was comfortable and not in need of anything.  It was very apparent that she enjoyed her job, and loved taking care of the babies.  The nurse today only has Kai, and although she spends most of her time out of the room, she is constantly checking in, peeking over, and is right over if an alarm goes off, even if it alarms for just a moment.

At the hospital they have what they call "WOW" cards, where you can fill out a form about a staff member who has great or made your day in some way.  I think it is a great idea and I am going to fill out a couple WOW cards.  I think positive feedback is important. 

Speaking of amazing nurses.  One of Kai's night nurses, HK has been by to see Kai once already, and she is going to come again today.  I cannot say enough good things about her.  She has gone above and beyond.  On her own time she has researched things for us and even made a little contraption that would help with moving Kai around the house.  For his bum she ordered special cream from Germany because she researched that it was the best stuff.  She and I will spend hours talking--in fact, I stayed up talking with her until four-thirty in the morning one time!  When it is her shift, J will often go to bed without me because he knows that I will be up for quite some time with her.  She has helped me stay sane though this whole process, because she has been with us from the beginning.  She hasn't been afraid to speak up if she has a concern and has given us ideas on how we can improve things with Kai.  As I said, she is amazing.

The most common question that I am asked (other than when can we bring Kai home) is if I am doing okay.  Surprisingly, the answer is yes.  I am okay.  We are okay.  Yes, having Kai in the hospital is not ideal; yes, we miss Zuri, and she is missing us fiercely; yes, we are completely worn out and ready to get back to our lives and back to our home; but honestly, this has been really good.  We are getting things solved, and now we have a much greater knowledge of what is going on with Kai.  We are at peace with the situation.  It totally stinks, but it is for the best.  It needed to happen.