Thursday, October 8, 2009

October 8, 2009

Today was Jesse's second day back at work, and may I just say, I have a whole new respect for working parents. How the heck anyone gets out the door looking presentably disheveled (let's face it, once you enter parenthood you never quite look the same again), gets their kid(s) dropped off at daycare, and makes it to work by 8:00 am, is completely beyond me. By some miracle Kayla and I actually made it out the door on time this morning. However, after hitting traffic on Hwy 9, getting gas in my beast of a vehicle, dropping Kayla off at Grandma and Grandpa Reynolds' house, getting stuck in traffic on 280 (took me 30 minutes to go 1-1/2 miles), stopping by the fire station to get the hospital parking pass from Jesse, circling the itty bitty hospital parking lot looking for a place to park my Yukon XL, and giving up and heading to valet parking, I FINALLY made it to Gabe's bedside by 11:00 am. Holy Crap! Talk about feeling disheveled. Seeing the cute little completely-wide-awake-and-happy face that greeted me as I walked through the door to NICU room 4, made everything better.

Although Gabe did get another fever last night, for the most part he had a pretty good evening. When I arrived this morning (practically afternoon) Bubba was chilling out with Nurse "G" staring at his mobile. He still looked puffy, but better than he had earlier in the week and I was so releaved to see my happy little boy instead of the wild man that had taken him over for the last week. Soon after arriving, G nodded off, so we just sat in silence together. G snoozing and me holding his hand and head. He had one desat episode this afternoon, where his numbers got pretty low, but he recovered quickly and went back to sleep. Gabe still has a lot of secretions which cause him to desat if you don't get them cleared out of his lungs (via the ET tube) quick enough.

This afternoon we had a Care Conference. This is a time for us to sit down, away from the bedside, with a Dr, NNP, nurse and our social worker to discuss Gabe. The main focus of today's conference was his Chylothorax and the fact that it does not seem to be healing on its own. Gabe has been NPO (medical instruction to withhold oral food and fluids from the patient) for five weeks, and although at one point we thought his pleural effusions (fluid around his lungs) were beginning to dry up, they aren't and his chest tubes have actually been draining a lot of fluid over the last two weeks. The doctors think it is time to intervene and try a drug called Octreotide to try and heal Gabe's leaking lymphatic system. This drug has been used successfully with other Chylothrox neonates, and there are even reports of it working within three days for some patients and taking up to a month for others. The reason we did not try this right away is that it is a drug, and all drugs come with side effects, so they felt it was best to give his body a shot at healing on its own first. Even though there are success stories with Octreotide, there are also reports of it not working at all for other kids. I'm really hoping Gabe can be added to the success story list. We also discussed his "detour" this last week, and the Dr feels it was all associated with the UTI. I really hope she is right becuase that means once the UTI is gone Gabe will start moving forward again. They are still slowly chipping away at his vent settings, and once he is feeling better will go back to the sedation wean. Once the Chylothorax is healed, and Gabe no longer requires FFP to replenish the Albumin lost from his "leaking," the hope is that he will begin to slim down even more and his chest walls will get thinner allowing his lungs to get stronger and then...we can start talking extibation. Also, once we are sure he is no longer leaking Gabe can start eating again. We are anxious to see how this Octreotide works. If it is successful and heals the Chylothorax (leaky lymphathic system causing the pleural effusions) then I think we will start down a very exciting path. One that hopefully only moves forward. We still have a long way to go and as we've been told several times "Christmas is nice in the NICU." It's a little depressing to think about still being there come the New Year, but it means Bubba is still with us, and he is most certainly worth the wait.


shannon said...

what a wonderful journal entry. This blog has got to take up a lot of your time, energy and emotions but for us on the "outside" it is such a nice way to feel connected and pray for your daily struggles. It is something all of us appreciate. Can't wait to visit soon and see little Gabe! And yes, he certainly is worth the wait!

Meghan said...

I agree with Shannon. I am so glad that I can feel included daily instead of hearing the updates when I see you! I really appreciate you think of us all who care about you during a difficult time for your family! love you...see you soon birthday girl.