Twelve weeks one day old

Evan's belly was looking better this morning. His replogle tube was still set to vent for the entire day. A replogle tube is similar to a feeding tube except it removes air from the stomach. The tube can either vent (much like a feeding tube) or it can be hooked up to a suction to help remove the air. A replogle tube will only remove air from the stomach; anything in the intestine will have to come out naturally (farts!). Evan is still off feeds while his intestines are working on processing the air.

The ENT doctors wanted to give Evan one more day to heal and wanted to extubate tomorrow (Tuesday). Evan had other plans. More on that in a minute though...

Evan's morning was spent hanging out with the PICC line nurse. A PICC line is like an IV line, but it can be used for a prolonged period of time. Evan is running out of veins for IVs. He had two IVs in today - one in his hand and one in his leg. Unfortunately, Evan needs all the IV access right now as he is receiving steroids, reflux medication, two antibiotics, lipids and TPN (nutrition). The PICC line is inserted by a nurse that has had special training. From PICC Line Nursing:

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access... A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm... In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Evan had a PICC line put in when he was born. Going forward, Evan's nutrition will be hooked up to the PICC line, leaving an IV free for meds. The PICC line is put in right at his bed. They typically don't take any longer than a regular IV to put in, however Evan was determined to be a little pistol today. He received two doses of sedation before the procedure and still fought through it! Every time the nurse would put the catheter in his arm, he would somehow push it out. He was also fighting the tube and was needing constant suctioning. The nurses were a little concerned he was going to end up damaging his throat. The doctor approved of a small dose of a paralyzing medicine. The medicine is fast acting and he wouldn't be out for very long. As soon as the med hit him, he was out and the PICC line was in. The nurse said that they waited longer for x-ray to come to make sure the line was in the correct place! I was out of the room for the procedure and by the time I came back in (about 30 minutes after Evan received the paralytic), he was already awake and starting to get antsy.

Evan had to receive a blood transfusion today. As soon as the transfusion started, the IV went. The transfusion had to get moved to another spot. As his nurse was inspecting his other IV, she noticed that one was also gone. Rats - two IVs gone at the same time. I decided to leave about this time since it can take a while to find a fresh vein for an IV. I had already spent more time in the family room than I wanted.

Evan also had another eye exam this afternoon. The eye doctor was happy to report that the plus (+) disease is still gone. The ROP is still visible in both eyes, but it is not active. He didn't see any traction or pulling on the retina. Woot! He'll come back in another week to check again.

While I was preparing dinner tonight, I got a call from the hospital. I assumed they were calling to tell me about Evan's eye exam so I wasn't paying full attention. All of a sudden, the doctor said "Evan pulled his tube out". I had to have the doctor repeat himself. Apparently, Mr. Pants was tired of being intubated and he extubated himself! His nurse had just finished having the respiratory therapist inspect the tubing and tube holder to make sure everything was in place. She stepped away from his bedside and when she came back a few minutes later, he had pulled it out. He was staring at her, all nice and pink. Needless to say, he got a bit of attention as the doctors needed to check him out. So far, he is not showing any signs of stress. He was put on the NIV on relatively low settings. He's not fond of the NIV (probably because of the constant pressure), but he was slowly getting adjusted to it by the time we left for the night. It was so great to see his little face again. He's very bubbly (from the air via the vent). Evan was nice and awake and held my hand for a long time. I'm hoping we can get in a snuggle tomorrow.

It was pretty bleak the last few days. It was so hard to watch him fight the tube and struggle to cry while he was intubated. Tomorrow, the ENT doctors will officially check him out. Andrew and I are cautiously happy today as we know that there's always the possibility that Evan will need a repeat procedure to additionally fix his throat. He could end up re-intubated, but at least he had a little break for now.