The Roller-Coast continues!

Jadon had finally had his breathing tube removed late on Wednesday evening and was placed on high flow oxygen. On Thursday he had an eventful day as it was time to deal with the non-functional NJ (nasojujunem) feeding tube (tube down the nose, through the stomach and into the intestine).  Jadon was brought down for the fluoroscopy guided procedure and after several attempts at placing it in the right place, the radiologist gave up and said it would need to be done in another radiology area of the hospital on Monday. So, the ICU team decided to try feeding him via the NG (stomach) tube. This creates a risk for aspiration but since he is so much stronger the team decided to try it again. So far it seems to be going well.  He remained under the care of the Cardiac Critical Care Unit staff at until early Friday afternoon, then was transferred over to the cardiac step down unit once again.

Jadon has shown some signs of progress.  On Thursday he spoke the word, "more" when the nurse gave him some yummy mouth moisturizer.  He was tossing a ball and rattle a little bit over the last couple days, and would grin and almost chuckle when they fell.  He is also a bit feistier...which is great, as he has been almost overly complacent for awhile.

Despite some definite progress, we were reminded again today of Jadon's precarious health.  I went down to the hospital Friday afternoon to spend some quality time with Sara and Jadon as I have not been able to go down over the last week since I was fighting bronchitis.  I was amazed to see Jadon's oxygen weaned to 2L nasal prongs!  He was doing quite well, though he had a slight fever.  He fell asleep early in the evening, and so Sara and I headed out, with the promise from the nurse to call us if anything of significance occurred.  We came back this morning to find Jadon on 15L high flo, 60% oxygen with SATs around 92%!  Significant regression in his oxygenation levels!  We were shocked and disappointed.  His fluid level was back up a bit again, he hadn't had physio for a couple of days, and his lungs sounded crackly!  He got physio which helped him somewhat and as the day progressed his SAT levels slowly climbed up, but he is still on the high flo.

When he does well, we want to be cautiously optimistic, but it's tough if the next day, like today, brings another set-back.  Comparing day to day makes for a bumpy ride.  We have to look at the general trend over weeks, and over that time span, he has progressed.