A case of the Mondays

Yesterday we talked about how we can see where we have come from and today that was a helpful reminder.  When Mom and Dad called to see how Josh was doing in the night, we were told that Josh was having lots of apnea and bradycardia and his tummy was pouchy and measuring larger.  The nurse was so concerned she called the on-call nurse practitioner to come and look at him.  They sent some labs and when we called again a few hours later, we were told that his labs looked ok and that he was doing better.

When Mom arrived, she found one sick little baby waiting for her.  The good news was that Josh was awake and somewhat interactive.  He was however very pale, not moving around as much as usual and was not tolerating being moved by the nurses as well as he normally does.  The nurse said that his murmur was back (although still very soft) and that his lungs sounded "junky".  He had several episodes of apnea and bradycardia while we waited for the doctors to round.  The nurse had to increase his oxygen to 32% from his normal 21% (room air).

After what felt like forever, the doctors rounded and decided that he might have an infection.  So they ordered lots of labs, an xray and blood cultures.  The nurse also placed an IV in Josh to give him his antibiotics.  Not long after the xray was done, the nurse practitioner came over to discuss the results with Mom.  The good news was that the xray showed that Josh's lungs looked good.  The bad news is that the xray showed that his ET tube was a little high and he had some dilation and thickening of his intestines.   It is possible the dilation and thickening of his intestine is from air going down his esophagus.  To be cautious, they have stopped his feeding for at least the next 48 hours and placed a tube in his stomach (Oral Gastric tube OG) to intermittently drain out anything that might be in there.  They also readjusted his ET tube inserting it further in to his trachea.  They attempted to do a suprapubic catheter of his bladder to get a urine sample, but it was not successful because he had recently peed. They started IV fluids to keep him hydrated and will consider restarting IV nutrition if he can't eat for more than 48 hours.

The plan right now is for Josh to receive 48 hours of antibiotics and to be off his feeding for at least that long.  They will do a xray of his abdomen at 8pm tonight and again tomorrow morning to make sure his belly is getting better.  They will also check labs again in 48 hours and if his numbers look ok they will restart his feeding and discontinue his antibiotics.  If he has positive blood cultures then they will keep him on antibiotics for 10 days and do a spinal tap to make sure he doesn't have an infection in his spinal fluid.  If Josh is able to begin feeding again after 48 hours, it will take 2-3 days to get back to full feedings. 

It appears that Josh is doing much better now that his ET tube is in the right place.  His oxygen saturation have been at 100% and he has had no apnea so far.  His color is also looking better.  He has had no output from his OG tube, which is also good news. It is possible that all of this fuss was caused over a misplaced ET tube, only time will tell.

Mom and Dad both feel that today was made easier thanks to the netbook.  Mom was able to keep Dad updated in real time without having to leave Josh's bedside.  They were also able to talk several times during the day and Dad was able to see Josh.  Both Mom and Dad are very thankful for this!

Prayer Request:

• Josh would not have an infection and continue to improve now that his ET tube is in the right place.
• Josh would not lose much weight while he is not getting his feeding and that he would tolerate his feedings well once they are started back.
• Josh's doctors and nurses would continue to stay on top of Josh's condition and be quick to treat him when he needs it. 
• Josh's xrays at 8pm tonight and tomorrow moring would show improvement in his intestines.

Praises:

• Josh was doing much better now that his ET tube is in the right place.
• Josh had a great nurse today who advocated for him with the doctors and answered many of our questions.
• Josh gained 35 grams today and his weight is 2lbs 9oz!
• Mom and Dad were able to stay in contact today thanks to free wireless and modern technology.

(Josh not feeling very good this morning - his nurse put his red boots on, put his snowman near him and played his CD to make him feel better)

 

 (Josh with his new IV site thinking he doesn't want to see what is next)

 

 (A tired Josh trying to set some rest after all the test he had done)

 

 (A close up of Josh's new tummy tube and his readjusted ET tube)

 

 (Josh with better color and feeling well enough to put his hand on his tubes - a sure sign he is feeling better)