September 3, 2010

We've had quite a few ups and downs over the past couple of days. Shortly after Benjamin pooped, they decided to start him on pedialyte and breastmilk. They began his feeds aggressively because he was losing peripheral IVs by the day and they needed to get meds and fluids into him. Unfortunately, when he began throwing up green bile, he was obviously not tolerating his feeds so they had to stop them. At this point he was in desperate need of that central line so on Wendesday he was intubated, put under general anesthesia, and after two hours, the Interventional Radiology team was able to insert a PICC line. I cannot even tell you what a relief this was. I was in the waiting room practically in tears because it was taking so long, and I honestly thought they couldn't get it and my baby would end up in the OR the next day for a cut down.

Once the PICC line was in, he started back on PN and the Intralipid (he's not able to get Omegaven because of the type of PICC he has so hopefully he won't have to be on the Intralipid for an extensive period of time). He had an awesome day on Thursday. Probably one of the best days he had. He gave me three beautiful smiles... he totally made my day!

I wish today had been as great. They discontinued his antibiotic yesterday and started him back on feeds and he's been miserable since early this morning. He was definitely not the relaxed little boy I saw the day before. He hadn't slept all day and his heart rate, which is usually around 110 and lower, was around 190 and even over 200 for a better part of the afternoon and he kept crying out in pain. They were giving him Fentanyl boluses, Tylenol, Atavan, Klonopin and Protonics (to help with the reflux), and nothing was working. He came down with a fever so they stopped his feeds again, took blood and an x-ray of his abdomen. He has zero veins left to draw from so thankfully they could take from the PICC line. His white blood cell count is elevated so they think he's come down with an infection. He's back on the antibiotic for now. Luckily his x-ray looked okay so hopefully the area we're most concerned about, the part where he was connected, is functioning properly. Even though he only had one reconnection, the two pieces of bowel that his surgeon connected have a fairly large size discrepancy (a ratio of 4:1).

I'm praying he has a better night and they caught whatever it is he has early on. People have been asking us how we're able to have the strength to keep doing this and it's been really hard lately because Benjamin is having such a tough time. I was on cloud nine yesterday when he was smiling at me and today I feel totally deflated.