The Only Way

For the last several weeks Kai has been in a steady decline. We have tried again and again to get him seen by the pulmonologist but they kept putting us off. Finally just before Christmas he took a nosedive and it was hard to keep his oxygen saturation levels above 90. In fact, it was hard to keep them above 80. We thought that after Christmas we would try again, but then we were told that no pulmonologist would be available all week, so we finally resorted to our last option--we brought him into the ER. Good thing we did because they converged on him and did some serious work to get him breathing again.

When we walked into the ER at Primary Childrens they led us straight to a Resus room and there was a team of six working to get his oxygen levels back up. They took a blood gast and it came out over 130 (if you remember it is supposed to be below 40)! They bagged him (meaning they used a bag to help keep his airway open), they realized that he would need ventilator support, so they attempted to put him on the ventilator, but Kai decided he didn't want that, and fought against it to the point where they had to sedate him before he would accept the ventilator. Once he was stable and they had a room prepared, they transferred Jeremy to the PICU.

  In the ER waiting for the transfer to the PICU

The rest of Tuesday was spent simply monitoring his condition and they refused to allow him any food until Wednesday afternoon. They kept him on an IV so he wouldn't dehydrate during that time. Honestly, I am not satisfied with their answers as to why they wouldn't let him eat, and I am more than a little irritated about it. However, that is really the least of my frustrations. I will get to those in a minute. Wednesday was spent making decisions. What kind of support does he need? What ventilator would be best? There is a new model out that would only require one day of training (versus the normal three) and is much more compact and user friendly, however, Kai is too small for it, so we were back to the drawing board. They decided on an LTV which mimics a bypap and we set training for Friday, Saturday, and Sunday. After that we have to do a 24 hour room-in, which puts us home Monday or Tuesday if Kai cooperates.

  Wednesday morning--feeling much better and more like himself.

Wednesday afternoon and evening were very rough for Kai. He kept de-satting as he slept (what we have been calling his apnea periods) and so they kept increasing his oxygen. I told them over and over that increasing his oxygen doesn't help.   Too much oxygen is just as lethal as too little oxygen.

The nurse on the night shift and I got off to a pretty rocky start.  I consider myself a pretty easy going person, and I am definitely not confrontational.  However, I am not a pushover either, but I do tend to let things slide that perhaps I shouldn't at times.  Wednesday evening was not one of those times.  The nurse, we will call her S, came on shift.  She seemed nice enough, and since Kai had settled into a good sleep rhythm I turned back to reading.  S left the room without a word (for those of you who have had any experience with ICU then you know that they are supposed to let you know where they are going and who/where the nurse is who is to be contacted if you need anything).  After about ten minutes I saw her through the glass in the next room.  Kai's ventilator alarmed for a moment.  Five minutes later he de-satted (oxygen saturation levels dipped below 90).  I went over and did the now standard of rousing him and he popped back up to where he was supposed to be.  S is still in the other room--remember, this is right next door with a glass wall--and she hasn't so much as glanced over.  I settle back into reading and S goes to the nurses desks right outside the room.  She spends some time on the computer, twirled in the chair, chatted with a few other employees, and finally takes a quick glance into our room.  It was such a quick glance that she didn't notice that he had previously desatted (the monitor shows when it has alarmed until it is reset).  Then she meanders back into the other room.  Kai then desatted again and I got him back up pretty quickly, but he still alarmed.  Five minutes later he desatted again, and I decided to wait a bit to see if she will come.  By that time I was getting pretty annoyed that she was not responding to his alarms.  She should be in the room checking once the alarm goes off--especially the ventilator alarm, but three alarms went off and she had yet to respond.  So, I waited until he dove into the 60's and she still hadn't showed.  I got him breathing and back up in the 90's, but it only lasted about seven minutes before he went down again.  I decided that I would not intervene at that point and see how long it took for aid to come.  It was after ten at night and I was due to go soon and I needed to be certain that my son would be cared for.  As his saturation levels dropped for the fourth time, I stood by his bedside and waited...and waited...he was into the 50's before three other nurses/techs came in trying to resuscitate Kai.  As a fourth one came in I demanded to know Kai's nurses full name (she was still within eyeshot right next door) and that fourth nurse went and got S.  Kai had dipped into the 40's by then and was a deep purple and frantic.  As he started to return to normal color I laid into the nurse.  In fact, I was so upset and scared (with how low Kai had gotten) that I was shaking.  Five alarms and no response from her--or anyone for four of the alarms.  How am I supposed to feel safe with having my child there?  There is no reason he should have gotten that low, and then we spent the next forty minutes trying to calm him down.  Their solution was to sedate him.  I said no.  The hardest part?  I couldn't even hold him.  I had to do a modified hold with him in the bed to calm him down. 

To her credit, S was very apologetic and said that she would be more attentive.  She said that she would bring Kai's monitor up in the other room (they do that so they can monitor both patients--and she should have had that up from the beginning).  After I calmed down and Kai calmed down I apologized for yelling.  S left me a note in the morning that told me how the rest of the night went and once again apologized for what happened and wished us well.  I think that we left on decent terms at least.

Thursday was a day of discovery.  He was still fighting his ventilator and still desatting.  He had an echo cardiogram done on his heart to check for pulmonary hypertension.  There is evidence of slight, but overall his heart remains strong and healthy.

They also did a second chest x-ray because they couldn't determine how his lungs really looked.  The second chest x-ray didn't give us any more conclusions than the first.  We could tell that he has had some lung collapse on his left side, but beyond that, it was inconclusive.  The pulmonologist was worried about secretion plugs in the lungs and possible pneumonia because his CO2 levels were once again climbing.  Wednesday morning it was 59, but by Thursday morning it was back up to 70, which shouldn't be happening on the ventilator. 

Kai also had a pretty big leak with his trach (meaning that the pressure/air from the ventilator is escaping from around his trach and not going into his lungs) so they increased his trach from a neo to a pediatric.  When that didn't fix the problem, they changed to a cuffed trach, which has helped with the leak.  Blood gasts were taken again and CO2 levels were still way to high, in the 60's, so they decided to do a bronchioscopy.  The purpose of that was two-fold: to see if there were any mucous plugs and flush them out, and also to check for pneumonia.  We found very little mucous/secretions and no plugs.

  During the bronch--they had to stop because Kai decided to wake up!  He was alert and just staring at the doctor as if to ask what he was doing!  They had to get another round of sedatives into him and even then it took quite some time for him to finally go out.  Funny thing is, he had been asleep all day until that point!

What we discovered was so much more.  We have been absolutely blessed not to have a dead child on our hands.  Nothing less than divine intervention has been keeping Kai alive.  The bronch showed that Kai has both trachialmalasia and bronchialmalasia.  What that means is when he coughs or gets agitated his airway collapses.  Completely.  Trachiamalasia is usually solved by placing a trach, only Kai's is so severe that it extends past his trach tube.  For the bronchialmalasia, his right airway collapses completely and the left narrows to the point where it is almost all the way collapsed.  All those times that I have been panicked in the car (and at home) because he was turning blue and his sats were dropping were real causes for concern.  The doctors have even commented on how amazing it is (and what a testament to our care) that Kai is still with us. 

Before the bronch, there was talk about having Kai on the ventilator full time until he gets over his cold, then only having him on it at night.  With this discovery, we are looking at 24/7 ventilator support.  There is the possibility that his condition might slightly improve with age and size, and there might be surgeries that we could do as he gets older that may help, but only time will tell.  The outlook does not seem promising on that end, but we will know more as time goes on.

Friday, we began our ventilator training class, and Kai slept the day away.  The only real changes are to get Kai to the point where he is comfortable with the settings so he will stop fighting the ventilator.  They also hooked up a machine that would measure his CO2 output so they wouldn't have to keep drawing blood from him.  His CO2 levels were still in the 60-70 range.  Since Kai was sleeping, we decided to take a much needed break and had a date night for ourselves.  The first we have had in several months.  We went out to dinner and went to see the new Sherlock Holmes movie.  Definitely worth seeing!

The CO2 monitor.  The reading on the far left is his CO2 level, which should be under 40.   It was 70 when this picture was taken Friday afternoon.
  Fast asleep.  He will often sleep with his eyes open.

We are missing Zuri during this time.  She has been staying with J's parents for the week.  They offered to have her over for a couple days before this mayhem started, and it has been a huge blessing for us because we haven't needed to worry about her.  Thursday, Zuri and I did Facetime on the IPad and she and J talked on the phone.  She was so excited to tell me all about the dog and show me all the toys that she was playing with.  She is having fun at her grandparents house and playing with her cousins.

It is now Saturday.  New Years eve.  We will spend the day at the hospital, learning how to care for our son with the ventilator.  We will spend New Years day doing the same.  2011 was a very rough year and I am glad to see it end.  Hopefully 2012 will be better.  I have been looking forward to the start of a new year-- new beginnings.  I was hoping as all this started that we would be able to have Kai home at least for New Years day, but that is not going to happen.  We will weather this storm and look to a brighter day to come.