STOP THE MADNESS!!!!

…We left Austin early and came home.  On the way home, I called and got an appointment with his pediatrician for that afternoon.  We got in to see the doctor and she really thought it was just a virus and would run its course.  But just in case it wasn’t, she prescribed an antibiotic to give him only if he didn’t get better in a couple of days or if he got worse.  By that evening, he was worse.  He had a high fever, and a bad cough.  Also his trach secretions began to turn yellow.  I had Tommy pick up the medicine on his way home and we gave him a dose.  But by bedtime, he was crying and coughing constantly.  We checked his oxygen level and realized it was really low.  So we decided to take him to the ER.  Thank goodness for TCH putting a campus out in Katy.  It was so nice to not have a long drive, and we got into a room right away. 

Of course, when we got to the hospital, he was suddenly smiling instead of crying.  The doctor ordered a breathing treatment, IV fluids and a chest x-ray.  The x-ray showed no pneumonia.  They took a culture of his trach secretions but we had to wait a couple of days to find out if the culture grew anything.  I think he really kind of wanted to admit him because of the oxygen level, but we convinced them that we could take good care of him at home with his ventilator and the oxygen we had there.  So he prescribed a stronger antibiotic than what our pediatrician prescribed and sent us home.  He began to perk up in the next day or two and by Friday evening or Saturday, the fever was gone.  We thought he was on the mend, until Tuesday evening when his fever returned. 

We took him back to the doctor the next day.  She felt terrible that we had ended up in the ER the same day that we saw her in her office.  So she prescribed another antibiotic and a steroid for him to take over the next five days, along with the antibiotic that he was already taking.  She said if he wasn’t perfect by the following week, to call her back.

Beginning Monday, before we went back to the doctor, I noticed that John was sleeping all day.  He was sleeping until 9 or 10 in the morning.  Then he’d get up, eat breakfast and fall back to sleep.  He repeated this pattern all day, falling back to sleep after eating.  When he was awake, he wouldn’t play.  He would just lie on the floor.  By the next Monday, he was still acting this way.  So I called the pediatrician back and told her.  She consulted with his pulmonologist and they came to the conclusion that the respiratory infection was no longer the issue and we needed to take him to the ER at the main campus and let them do a complete workup to find out what was wrong with him.  So on Tuesday morning, after feeding John breakfast, Caitlin and I loaded him up and took him to the ER. 

Fortunately, when we got there, there was no wait.  We got into a room immediately.  They ordered more chest x-rays as well as abdominal x-rays.  After the x-rays, they discovered that his bowels were very impacted.  I will spare you too many details.  They tried two different things to give him relief, and neither worked.  So they decided to admit him and start giving him a liquid through an NG Tube (naso-gastric tube).  This tube is something he had as a baby in the NICU when he wasn’t able to eat on his own.  It goes in through the nose and goes down to the stomach.  They are able to use this method to give nutrition if someone cannot take it by mouth.  This particular liquid is very potent and should have begun to work by the next day.  It took 24 hours before he got any relief.  He really was pitiful, lying in the hospital bed.  He wasn’t able to have any other food or drink during this time.  While his stomach was being filled and I’m sure he didn’t feel hungry, the lack of nutrition had him completely lethargic.  It was so hard to see him that way.  Once he finally got the relief he needed, he began to perk up.  By the next day, he was able to start eating again.  That made a huge difference.  He still rested a lot that day because I don’t think he got a lot of rest the night before.  They told us on Thursday that he could go home, but I opted to stay one more night, just because the diaper-changing situation was pretty dicey by this time.  I would rather him dirty their sheets than mine.  By Friday morning, he was 90% back to normal.  He was smiling at everyone who walked in the room, he was grabbing stethoscopes while the doctors were listening to him, and he was pulling at all the wires and cables he could get his hands on.  We were finally released that afternoon. 

I was so happy to be sleeping back in my bed and I was even happier to have my little boy back.  He spent the next few days, recuperating and catching up on rest.  By the next week, he was 100% himself.  We saw his Pulmonologist this past Tuesday.  After looking at his x-rays, she said his belly was so full that his liver looked like it was on the opposite side and his bowels were pushing up against his lungs.  No wonder he wanted to sleep all of the time.

Here are some photos of John and all of the places he decided to rest while he was sick.