Thursday, October 22, 2009

October 26, 2009

Wow! What a crazy couple of weeks it has been! Just as we're starting to get used to one routine, a new one pops up. With Jesse back at work now, it's added a whole new level of chaos to our lives. We are so very appreciative of all of the firefighters for devoting so much of their personal time to covering Jesse's shifts for a little over 4 months. I don't know how we would have made it through that time if Jesse had been working. The new routine is: we rotate with the kids on the days Jesse is off; on the days Jesse works Kayla spends time with the Grandparents (if someone is available) and I spend the day with Gabe; we try to take one day a 4-day "off" from the NICU to hang out at home and do family stuff with Kayla. We haven't spent many nights at the Ronald McDonald house in the last month, which means there has been lots and lots of driving! I am starting to feel like I live out of my Yukon. With all of the back and forth it hasn't left us much down time, which means we haven't had a chance to sit down and blog. I have started several times in the last week, but with Kayla only napping about 50% of the time now, and the fact that we can hardly keep our eyes open once she's down at night, we just haven't found an hour (this is about how long it takes to compose one entry) to sit down and blog.

So what's been going on with Gabe?

MRI: Gabe's MRI went well, and it was worth the trip down and back becuase we did learn some new info about his Liver. Turns out he does have one mass like they orignially thought. Not eight. It is part of both lobes and measures something like 5 x 4.5 x 7 cm. Gabe is the size of a new born, so this is a ginormous mass in his itty bitty body. MRI is the best way to view the mass, therefore these are probably the most accurate measurements we've ever had of it. They were able to get a pretty good look at it during Gabe's CT scan at the beginning of August, and the mass does not appear to have grown much since then. This was a huge relief because, per the ultra sounds, it looked as though the mass had grown quite a bit in the last month. Since the mass is not blocking any veins, and is not keeping the liver or any other part of his body from functioning properly, we are going to leave it be. There is one surgeon who feels it is operable, however it would be a very intense surgery, and would be very hard on Gabe's little body. If the mass does start to grow and cause problems, then we know it can possibly be removed and we will revisit it at that point. Our hope is that it stays its current size and as Gabe gets larger it just becomes this small mass in his liver.

Care Conference: Last week we sat down with Dr "B" for a heart-to-heart about our little guy. Knowing that Gabe's chylous effusions aren't diminishing (still putting out around 150-200 ml a day) and he was 16 weeks old, we weren't sure what kind of a conversation we would be having. The main focus of our conversation was of course the chylothorax (leaky lymphatic system causing the fluid build up around G's lungs). Dr "B" shed a new light on this frustrating and discouraging situation. Even though Gabe is 16 weeks old, we only discovered the source of the pleural effusions 5 weeks ago. It was only at that point that feeds were stopped and his lymphatic system no longer had a certain chain of fats going through it, which keeps it from being able to heal. Of those 5 weeks, Gabe spent 2 of them fighting a UTI. When the body is fighting an infection the lymphatic system becomes overloaded and leaky, so really Gabe has only had 3 weeks (4 now) of proper conditions for his lymphatic system to repair itself. Hearing this made our hearts skip a beat and brought with it a whole new feeling of hope. Gabe's chylothorax has really had less then a month to heal, not 4 months. It is still a huge concern for us all, but hopefully we will start seeing less fluid output/build-up in the near future. Come on lymphatic system! The other big issue we discussed were Gabe's lungs. They are still not as healthy as we would like them to be, but have gotten better in the last 5 weeks. So much so, actually, that Dr "B" wanted to try Gabe on CPAP (breathing on his own with a constant flow of air being pushed down his nose) the next day. Dr "B" said it's easy to get caught up in only focusing on the pleural effusions and thinking that Gabe is not making any progress forward, but that was not the case. In the last five weeks Gabe's nutrition has improved, making him stronger; his lungs are slowly making progress forward; and he just looks better. Dr "B" said that if we were going to push Gabe's body to get better, and he was just going to lay there when he got home, we would be having a very different discussion, but...Gabe has proven he's a fighter; he is fiesty; and he has a little personality, which is obvious by the number of people that are drawn to him. There is a little person in there, and Gabe is trying his hardest to get better. Overall Jesse and I were very happy with our care conference and the direction it took. We still don't know how this NICU experience is going to end, but we are "cautiously optimistic" it will go the way we are all hoping and praying it will. We had been feeling so discouraged, this talk with Dr "B" was much needed. We were able to re-group and now we can charge forward and keep fighting along side Gabriel.

CPAP: Last Wednesday was the big day. Gabe was outfitted with the ever-so-attractive CPAP head-gear, the vent mode was changed to CPAP (pushes a constant flow/pressure of air down his nose), he was extibated (breathing tube removed), and...Gabe was PISSED! Could you imagine being soud asleep, letting some machine do most the breathing for you and all of a sudden, BAM! You are woken from your sleep with plastic prongs shoving air down your nose and your lungs are suddenly responsible for doing all of the work on their own. I would be upset too. Gabe recovered pretty well, his CO2 levels, which were high at first, started to go down, and he was off and running. Jesse and I took turns whacking Gabe's bed (the kid needs constant movement), and he slowly started to drift off to sleep. Since Gabe appeared to be adjusting pretty well to CPAP, we headed out get grab a bite to eat. We called in about 45 minutes later and learned he was sound asleep and everyone was sitting back out of fear of waking him. With this news we decided to lolly-gag a bit longer. Upon arriving back at the hospital I received a call from a nurse (not Gabe's, hmmm?) letting us know they were going to reintibate Gabe. We picked up the pace and when we got to the room our hearts about stopped when we saw the large group of people standing around Gabe. We suddenly realized the doctors and nurses hadn't decided it was time to put the breathing tube back in, Gabe had. When adults start to get tired they begin to slow down and put less energy and effort into it. Kids however, give it 120% and then just stop. Yes, Gabe's lungs said "that's enough, we are tired," and just stopped. Nurse "N" was right there and got the team together and got Gabe up and running again. Thank you Nurse "N!" Turns out Gabe's CO2 levels were much higher than the machine was showing, fluid was building up around his lungs becuase his chest tubes weren't draining properly, he wasn't taking strong enough breaths to clear the goobers out of his lungs so they were building up, and his lungs just got tired from their work out. Dr "B" we shouldn't look at this experience as a failure. We should view it as a huge step forward that Gabe and his lungs were in good enough condition to even consider trying CPAP. Way to go Gabe! We will try again in a few weeks when his lungs get stronger.

It took Gabe less then 24 hours to recover from his CPAP experience, and he has spent most of the last few days just chilling out. He did have one rough night, but Nurse "S" got him through it, and he has been behaving himself pretty well ever since. They have decided to start weaning G off of the Versed because it can become toxic after long term use, and can cause twitches and contractures. We are hoping that once he is off of the versed his eyes will not be as twitchy and maybe his arms won't be as contracted. We will see what happens.

I had a wonderful bonding day with Gabe this last Saturday. He was awake, alert and happy for quite a while. I situated myself over Bubba and started making stupid ooooing and goooing noises and dorky facial expressions, and he LOVED it! I swear, if he could have smiled he would have. G got a really happy/excited expression on his face, his eye brows went up and he started kicking and moving his arm and legs. I couldn't have been happier. I felt like I was having a "normal" interaction with my son. Then to make it even better, Nurse "L" took on the huge task of getting Gabe out of bed so I could hold him. After a few fidgesty moments Gabe calmed down and actually fell asleep in my arms. I held him for several hours as he snoozed away. Thank you Nurse "L!" What an awesome day!!!

Jesse was supposed to spend the morning with Gabe on Sunday, but got called away to a fire in the Santa Cruz mountains. He was going to be gone for 3-7 days. "Oh crap!" was all I could come up with. How the heck was I going to be mom and dad in two places at once, for a week. Then, this morning, I got the good news that his team was being sent home. We are all VERY excited that Daddy will be coming home tomorrow!!!


shannon said...

tears and joy is how i finished reading the amazing update! love you all and can't wait to FINALLY come see Gabe! It's been way too long!

Shannon said...

You guys are amazing. Go Gabe!