November 4-5, 2009

November 4: Gabe spent the first part of the morning awake and hanging out with Nurse "N." He started dosing off for a nap around 10am, which was of course just when I arrived. I was looking forward to "playing" with Gabe when he woke up from his late morning nap, but apparently it was a sleepy day, becasue G spent most of the day napping. There were only very short periods where I got to see him awake. That's ok, if I had the option of sleeping all day, I just might. Since Gabe has been pretty stable for the last few days they weaned his Versed, Hydracortisone and his vent settings. He handled all of these changes well, and had a good night.

November 5: When Nurse "L" arrived this morning, Gabe was quickly becoming a wild man. His temp was up, and he was not happy. She removed the blanket covering him, applied a cool cloth to his head, and any other tricks she had up her sleeve. Not much seemed to be helping Gabe. Since it had been 24 hours since his last PRN, she decided these might be withdrawl symptoms and decided to give him a extra dose of Morphine. Thank goodness Nurse "L" knows Gabe so well. This PRN did the trick. G calmed down and was a happy little boy. When Jesse and I arrived Gabe had once again dosed off for his late morning nap, which again turned into an all day nap. Since Gabe handled his weans so well yesterday they decided to wean a bit more on his Versed and made a pretty big step on his vent. They turned the rate setting on the vent down from 16 to 12. This means he is now receiving four less breaths from the vent. Super G showed us his super powers today, and thus far, has done just find with less breaths from the vent. I spent some time watching the vent screen today and was very excited to see my Bubba taking so many breaths on his own.

This afternoon we spoke with Dr "M" from the pediatric surgery team. With the amount of fluid Gabe's chest tubes have been putting out, the surgery team was called in to consult once again. Dr "M" spoke with us about two possible surgeries to help resolve the pleural effusion issue. One is putting a powerdy substance into his pleural cavity. This powder roughs up the outer lining of the sack around the lungs and the chest wall. The hope is the two scared surfaces will stick together and there will no longer be space for the fluid to collect. Without space to collect the idea is that it was force it to stay in the vessel it belongs in. Of course, the fluid could just find another open space, like the abdominal cavity, to flow into. The other surgery is one where they go in and tie off the thoracic duct in hopes of stopping the leak. With this one is it somewhat of a shot in the dark, becuase you are hoping to tie it off in the right area and there is the risk of actually causing more holes. There is of course much more to both of the surgeries, and they do have names but I can't remember them right now, however I will not get into all of the little details becuase we are hoping to not have to take the path of surgery. Over the last week Gabe's right side still hasn't put much fluid out, and over the last two days the fluid on the left side has gone down drastically. Becuase of the new trend (fingers crossed this is a trend and it won't start flowing again) the surgery teams feels, and we agree, that it's best to wait a few more weeks and see if the fluid is slowing down and if the lymphatic system is starting to heal. If the fluid keeps coming, we will try and collect more information about G's lymphatic system so we know which of the above mentioned surgeries might be his best chance and healing. Dr "M" is going to speak with radiology and find out if there are any other imaging options that might provide a better look at his lymphatic system. Neither of these surgical procedures are very pleasant, but Gabe can't leave the NICU with chest tubes. Fingers crossed his lymphatic systems really is starting to heal and this slow down in the chest tube output, is really a slow down.

We also sat down and spoke with Dr "R" today. We quickly went over the discussion with Dr "M" and the pleural effusions. If his lymphatic system is going to heal on it's own, the chest tubes are the best form of treatment and they are in place, so for the next few weeks we will watch closely and revisit this issue if things don't start getting any better. The main focus of today's meeting were Gabe's lungs. They have to start working on their own!!! A vent is ment as a temporary fix, not a permanent one. The longer he is on the vent, the more damage is going to occur. Dr "R" is happy with the progress Gabe has made on the vent over the last few weeks, since his last CPAP trial, and thinks he is ready to try again. If Gabe is in a good place tomorrow it's marathon time for his lungs. I already have butterflies in my stomach just thinking about tomorrow. I know Gabe can do it, and I just hope tomorrow is the day. If he doesn't start making some impressive progress with breathing in the next few weeks and it looks like it is going to take several more months to get him off the vent, we will have to start discussing a trach tube. Go lungs go!!! We don't want to have to put in a trach. That is opening up a whole new can of worms. We are very appreciative of Dr "R" and the team taking the time to sit down with us, away from the bedside, to discuss Gabe and how we can help him move forward.

At this point I truly think Gabe is in the best condition he has ever been in, but is still far from being healed, and is still in a scary place. Let's hope Gabe's lungs are ready to start doing all of the work on their own, and he can break through this wall he has been up against for so long now.

I will be sending Bubba ALL of my Mommy Super Powers tomorrow!