12/21 - Santa (and the Grinch) visits the NICU

Friday was Santa day in the NICU. He made "rounds" and took pictures with each baby and delivered gifts. Leo's gift was the ability to breath without oxygen support (Sorry Santa - credit goes 100% to Leo)! At around 8:00 yesterday morning they were changing around the oxygen support and they took Leo's current one off before the new once arrived.  When it finally did arrive, he was doing so well with no support they decided not to put the other one on until he needed it. Well 1 and a 1/2 days later he is still oxygen free! It is so nice to having nothing on his face.

Unfortunately, the Grinch made his rounds too and brought Leo excess fluid that just won't stop. As Terry mentioned Thursday, Leo had a small in room procedure to extract chylothorax fluid from his chest. The aspiration out put was 50ML. After the procedure they did another x-ray and the lung was not inflating the way it should. They thought air pockets were the problem. So the doctors decided to go ahead with a chest tube after the needle aspiration. This time the chest tube is much thinner and we are still allowed to hold Leo when the nurse gets him out for us.

The plan was to feed Leo the fat free formula and if that didn't slow down the fluid, then he would have to go a week with no food (only IV nutrition) followed by another week of monitored feeding in the hospital. Well on the first 24 hours of fat free formula, Leo's chest tube output actually increased so at 8:00am surgery said stop feeds and put him on the IV nutrition called TPN. Well that was easier said than done.....

We had mentioned in the past that Leo had a PICC line instead of a normal IV, but that got clogged last week so he just had a normal IV.  He has gone through 3 normal IVs this week with the last one blowing last night. Leo was super agitated last night and I had to hold him while they tried to start a new IV. They attempted on both feet and his right arm but couldn't get it in the hysterical baby so he went IV less. This became a big deal when they said he needed to stop eating this morning. He needs to be able to either use an IV or his tummy to get nutrition and meds.  They had a nurse practitioner try to start a new PICC line. They figured if he couldn't even keep an IV with clear fluid, he would definitely blow one with TPN. Unfortunately, they also couldn't get a PICC line started after several attempts. The only solution was a Central Line that needed to be placed by an attending surgeon.  Well the attending surgeon wasn't willing to come back in today and call her needed team members to do it and said wait until Monday. I spoke up and said that it wasn't fair to my baby that he has to wait 2 days to start his IV feeds just because surgery who is supposed to be available 24/7 doesn't want to come in. We compromised on them doing it Sunday morning when the team was in for rounds. Leo's normal surgeon is out all next week and I'm not too happy about it!

We were okay feeding Leo until Sunday until he sprung another leak. This afternoon Leo's G-tube site started spewing out liquid and partially digested formula (seriously....we have no luck!).  It was outputting a lot. For perspective, it drained 16ML in a 2 hour period where he only ate 40ML so almost 50% of his food oozed out the hole for his G-tube. We called the surgery resident back and he came and looked at the G-tube, but didn't offer any real solution and just changed the bandage and said he was eating too much.  So they put him on continuous pump feeds so his stomach wouldn't get too full.  This didn't make our doctor or nurse happy because he wasn't getting proper nutrition or his painkiller. So they called the surgeon back in and she came and talked to me.  She said to put a tight ace bandage around the g-tube. We all thought that seemed like a worthless idea, but it is actually helping.  He is still leaking a little, but nothing like before. She also tried to tell me that she would put a Central Line in on Monday, but then I made her agree that she would do it Sunday morning if the G-Tube was still leaking.

One good thing about holding off on the TPN and keeping formula going is that in the last 12 hours, the flow of chest tube fluid has slowed a lot.  Maybe there is still a small chance that he won't have to stop eating for a week. We will see in the morning.

Sorry this post is unorganized and really late. Leo has been really agitated since about 9:00pm on Friday and I have gotten no sleep.  I tried to write this last night during a brief quiet period and dozed off with my hand on the letter K key and ended up with 50 lines of Ks.......then I decided to hold off until today, but today has also escaped me!  I'm hoping the rest of the night is peaceful!