What a Day!

Today did not go at all as expected.  It started out pretty normally, with J going off to work, but it all went haywire just after nine.  Zuri's new favorite thing is the bath, and since it keeps her occupied for a time (that kid is full of energy), I thought it would be a good time to get some bills done while she was playing in the bath.  I had just gotten Kai's food going and he was sleeping, so I thought all was well as I sat down and started working on the bills for this month.

Shortly after I began, Kai started coughing, to which I immediately rose and went to his crib.  Coughing is often his precursor to spitting-up.  Suddenly, he started flailing around and turning purple.  I couldn't understand what was distressing him so, so I checked his diaper to see if he had pooped (his yeast infection is still really bad and when he poops it hurts him badly).  He hadn't.  Then I saw his formula shooting out of his stomach and the g-tube connector on the mattress next to him.  I couldn't understand how it had come off, but I quickly paused the pump and tried to put the connector back in, only it wouldn't go into the g-tube.  I tried to close the button but it kept popping open, spraying more of his stomach contents.  Somehow, a piece of the connector had come off.

Unfortunately, that wasn't my main concern.  I needed to get him calm and breathing, but he wasn't responding to anything.  Finally, in a panic, I flew over to my neighbor's and banged on their door.  My wonderful neighbor came right over.  Meanwhile, Zuri had gotten out of the tub and was running naked all over the place, not understanding that something big was going on.  My neighbor (whose husband works at home and she has two kids of her own) took Zuri over to her place and was kind enough to drive us over to the emergency room.  I was in such a panic that I couldn't find my keys, which ended up being in my purse.

By the time we reached the emergency room, Kai had calmed down and although still pale, not in the dire state he had been in ten minutes before.  He had even fallen asleep in the car.  We were seen right away at the ER at UVRMC, which is where J told me to go since they "know" about g-tubes, and are equipped to handle them .  Apparently, not the ER staff, because I had to explain several times what the problem was, and what we needed to do to fix it.  When the doctor came, I even explained step-by-step how to remove the old g-tube and insert the new one (which I had in one of the many bags I have to carry around and they had to use ours because they didn't have one).

Don't get me wrong, the doctor was very competent and he and the staff were all very nice and friendly.  In fact, I would definitely go the extra ten minutes there instead of Timpanogos, it is just that I could have replaced Kai's button at home and saved the ER trip (and money) if I had realized that I would be explaining to them how to do the procedure.  In fact, I had started to do it at home, but Kai had calmed down enough that I figured it would be best to do it at the hospital (which is what is recommended if possible).  It is just hard to realize that when it comes to emergencies with my son, I am often more knowledgeable than many of those who are supposed to treat him.  It is a scary prospect.

During our trach classes at Primary Childrens, the respiratory therapist said that when we get home we should call the local fire department and let them know we have an infant with a trach.  So, we did just that.  Their response?  "Well, you will be there in an emergency, right?"  Basically, they don't have the training to handle our son either.  Wow.  Just wow.
   Kai fell asleep in my arms just before the doctor came in and was asleep during the whole changing of the button.  I found some humor in the situation and thought this sprawled out look was funny.

I know that taking Kai to the ER was probably the best thing to do, but afterwards I felt as though I had over-reacted.  I still don't know why he went into respiratory distress, but if he hadn't, I definitely wouldn't have taken him.  I panicked.  Even on car rides (which he has been doing better with), I only have to pull him out of the car seat and hold him to have him calm down.  I have never seen Kai in such a state of panic--he was purple, wild-eyed, thrashing, soundlessly screaming, and sweating.  He wasn't junky either (trach speak for having a lot of mucous and needing to be suctioned), which makes it all the stranger.  His mask was on and covering his trach, the oxygen was set to the right level (I even increased his oxygen a little to get him breathing).  The part of the button that came off should not have effected him (especially his respiratory) so it remains a mystery.

Kai is quick to rebound, however, and by the time we got home, he was in a good mood, sucking on his finger and making farting noises (I think of it as his way of cooing).  The OT came about ten minutes after we got home.  Even though he had had an eventful morning, since he was in a good mood, she decided to try tasting some baby food!  Kai had his first baby food today and he did really well!  The big worry about food with a trach is aspiration.  Kai handled it all like a pro.  He really didn't seem to care about the food one way or another.  The OT said that it is really hard for him to taste it, that it is like eating with a stuffed nose.  You can tell the different texture and a tiny bit of taste.  We didn't even need to suction him after he had the food, which means that he swallowed it into his tummy and not into his lungs (which is common for kids with trachs). 
  After tasting the food.  Total look of indifference on his face.

After the scare of the morning, the rest of the day went fairly smoothly.  We have a long day coming up on Wednesday where we will spend the day at Primary Childrens.  It is for a trach clinic.  Basically, a day for all the specialists to see Kai and assess how he is doing.  It is nice because it takes care of several appointments in one sitting, but it is hard because it is literally all day.  Hopefully all will go well!