Monday, August 30, 2010

Sunday, August 29, 2010

We are still in "two steps forward, one step back" mode. Today, Caleb got his chest tube out. He has not had an SVT episode since yesterday at 4:00 pm and is off the epinephrine. They are working on weaning him off the dopamine (the last blood pressure medication) and reducing his pain medicine and sedation medicine. He has started back with small amounts of breast milk. These are all the good parts.

They took Caleb off the ventilator around noon today. His oxygen levels were marginal, so they put him on additional respiratory support (CPAP - continuous positive airway pressure like the people with sleep apnea use). They noticed that his left lung was not keeping up with his right lung. They did an ultrasound and found that the left side of his diaphragm seems to be paralyzed. The nerve controlling this portion of the diaphragm is sometimes damaged during surgery. Because Caleb was never off the ventilator between the surgeries, they don't know which surgery caused the problem. The nerve may be "irritable" (like everything else after two open heart surgeries in a week) or it may be permanently damaged. If it is damaged, they will perform surgery - hopefully from the side, not through his chest incision - to pull his diaphragm down and stitch it in place. With the diaphragm down, he can pull air into his left lung when the right side of his diaphragm works. The doctor said that this is not uncommon and the repair should not cause any long term detrimental effects. Hopefully, the nerve just needs some time to rest and kick back into working mode. We should get a better idea tomorrow morning. For the time being, he is back on the ventilator - one step back.

At least we are still moving forward and the doctors seem to have a fix for each new complication that arises. All of the doctors and nurses mention the fact that Caleb has a timeline all his own and no one can push him any faster than he wants to go. Hopefully, he decides that he wants to be held by his parents and come home with his brother and sisters soon.


  1. GREAT BIG Hugs to you!!! God knows what else you need, so I'll ask Him to deliver it to you as He sees best!!!

  2. Sure glad to hear he is making progress. Still praying for him, the medical staff and you guys.

  3. Grandma Pat and LL Grummet checked on Caleb while on a weekend bus trip more than they checked on any family member. He seems like ours!
    Prayers and love from grandmas