The Mystery Continues...

My life... It's become more unpredictable than ever before... and that's saying a lot because I've had a pretty eventful life so far! Here's the latest Lucas drama. I've decided that point form is the only way to give all the information without writing a novel. So here goes...

• The drain had been removed from Lucas' liver and he seemed to be doing amazing
• Breathing on his own with very little extra oxygen
• Increasing feeding volumes
• Gaining weight and getting fat
• I was super relieved and loved being able to hold him, as evidenced below

• Ray was also very relieved and loved being able to hold him, as evidenced below

• I noticed that Lucas was starting to struggle to breathe, and the nurses kept on suctioning out his nose and throat which seemed to only be a temporary fix
• Got a call from the doctor on August 17, telling me that Lucas was having a hard time keeping his oxygen levels up, and he was struggling harder to breathe
• Lucas got an X-Ray 
• It showed that the cyst on his liver had grown back
• It was squishing his lungs and that was why he was struggling so hard to breathe
• Ultrasound was ordered to get a closer look
• Labs showed that he was still fighting infection despite being on antibiotics for so long already\
• A blood culture was started to see if it was the same blood infection
• Lucas was put back on CPAP to assist his breathing
• I really hate CPAP... It squishes his face and I can't really see him behind that huge apparatus
• Ultrasound showed the cyst had grown to 4cm all around

• The next day, August 18, Lucas was taken to Radiology for a CT to have another drain inserted into his liver
• This meant he had to be put under anesthesia and had to get a breathing tube down his throat... *grumble grumble*
• The doctor thought that there was a possibility that the cyst wasn't related to the infection, and that instead it might be caused by a connection in the liver to a bile duct and that's what kept on filling it
• During the CT, they injected a dye to see if there was a connection like the doctor thought
• Apparently not. They couldn't see any connection that shouldn't be there.
• 20mL of fluid was removed from the cyst during CT
• A different kind of drain was inserted this time, which allowed the cyst to continuously drain into a bag
• After the CT they did another X-Ray to check on his lungs
• It showed that his lungs weren't being squished anymore, but because of the lack of space there was, some air pockets in his lung above his liver had collapsed
• They were originally planning on taking him off the ventilator that day, but because of what they saw on X-Ray they left him on the ventilator over night
• Apparently the air pockets would re inflate on their own as long as his breathing was strong, hence staying on the ventilator
• Lucas super hates the ventilator
• He was trying to breathe against it as soon as he woke up from the anesthesia
• He kept on grabbing at the tube and pulling at it
• The nurses were afraid to leave him alone in case he pulled out the breathing tube when they weren't watching
• Since Lucas was so mad at the tube being down his throat, he wouldn't calm down
• The nurses ended up having to wrap his hands up super well in his blanket and swaddle him really tight
• He also needed to be given pain medication to get him to actually sleep
• August 19, the blood cultures came back positive. 
• It was the same infection in his blood, which is apparently very resistant to the antibiotics
• He was started on a second antibiotic, rifampin, which is apparently used in conjunction with his first antibiotic, vancomycin, to make it some sort of super antibiotic...
• Another X-Ray was done to check his lungs
• It showed that the air pockets had re inflated, so that's good at least...
• It also showed that the tube was in a tiny bit too deep, causing him discomfort
• Respiratory was called in to pull the tube out 1cm
• Lucas took advantage of the opportunity and squirmed a whole bunch while they were trying to fix the tube
• His squirming made it really hard for them to move it such a small amount and instead, the breathing tube slipped right out
• It was actually really funny to watch. All of the sudden the tube is in the person's hand and the nurse was running out to call the doctor over while another person automatically grabbed an oxygen mask and had it over his face in no time
• Pretty sure Lucas made sure that thing came out. It just made him mad.
• He ended up back on CPAP. Thankfully they didn't think they needed to put him through getting another tube down his throat.
• August 20, uneventful and restful day
• August 21, another blood culture was started to see if 48 hours with the second antibiotic had made any difference
• Two day wait for the results...
• August 22, spent weaning the oxygen level Lucas was receiving down
• He seemed to be doing okay, but wouldn't stay too happy if the oxygen got set too low.
• August 23, blood culture results came back negative!
• They kept them going to see if anything would ever come back positive, just in case, but two days with no positive result was a very good sign
• He has to be on the antibiotics for six weeks from the last negative blood culture, meaning the clock restarted and he's got six weeks to go again before those antibiotics are over with
• I asked about the plan to get him off of CPAP and never really got a clear answer...
• August 24, the doctor noticed that his belly was bigger than it should be and another ultrasound was done that day
• It showed that his entire liver was enlarged and that there was some extra fluid floating around in his belly
• He was started on a medication to help him pee out excess fluid in his body
• The liver being enlarged was likely a result of the cyst causing the entire organ to be inflamed
• His feeds were stopped in case his digestive system was getting stressed
• August 25, the results of the ultrasound weren't too concerning, so the drain was removed and Lucas was started back up on his feeds
• Apparently Lucas was starving because the nurses were having a hard time calming him down
• Once he got fed again, he calmed down immediately and zonked right out
• August 27, Lucas came off CPAP finally!!!
• CPAP was replaced with high flow oxygen, and he seemed to be doing really well with it
• He weighed at 4lbs 8oz
• Blood cultures still negative
• Took Warren to visit Lucas again. It had been a while since he saw him last.
• Warren did amazing!
• He said things like 
• He so cute
• I want to touch his toes/his hair/his cheeks
• See?! I hold his hand!!!
• I want to share my car wiff baby brudder
• He need to sweep (sleep) so he get better and come home to play!
• I wuv him!

• August 29, another ultrasound was done to see if the cyst was growing back or shrinking and healing
• The doctor told me that there was "a little bit of fluid re accumulation" in the cyst
• The blood cultures are still negative, so it doesn't make sense that the cyst can still be growing so it can't be related to the infection
• Now they're back to the idea that there's a connection in his liver to a bile duct which is filling this stupid cyst thing
• Since the CT they did when they checked for a connection didn't show anything, the doctor sent those pictures to the main campus in Denver to get them to look at it and see if they could see something they were missing here
• The people in Denver suggested that since Lucas is so small, during the CT, they could only use a small amount of pressure to push the contrast dye through, and that might not have been enough pressure to show a connection if there really was one
• The doctor here decided to order a new test called a HIDA scan that would be able to show more definitively if there really was a connection 
• This test is done by "Nuclear Medicine" people
• A nuclear, but apparently safe dye is injected and it tags all the bilirubin cells that are in his liver, so they watch those cells to see if they're going somewhere they shouldn't be going
• They assured me that this was a safe procedure though, and that it didn't require sedation and it wouldn't make him feel funny
• I went with him to the HIDA scan. It was a giant machine that filled a room and then they put my tiny 4 pound baby on this giant thing... It was kinda funny...
• The dye was injected and they needed him to stay there for an hour as they took pictures to track all the cells 
• Lucas did really well. I was able to sit next to him and hold his hand and make sure his binky/soother stayed in his mouth
• He had to skip a feeding before this thing though so he was pretty hungry and sucked on that soother like his life was depending on it

• After the test, he was brought back up to the NICU and got all settled back in his bed and got his much anticipated feeding
• He zonked right out. He had basically been awake for the last two hours as he was being prepared to go down to this Nuclear Medicine room, then he never really fell asleep during the scan because he was starving and there was all the travel time... Pretty sure he has never been awake that long, so after he started getting fed, he was just wiped.
• I had spent almost six hours at the hospital, so it was time for me to leave...
• I should find out the results of the scan today. I sure hope they find something. They're running out of minimally invasive procedures and tests that they can do...
• If this test comes back normal, they might have to resort to surgery to look at this thing first hand and nobody wants that to happen
• So again we wait.
• At least he is eating, breathing and growing
• He is also ridiculously cute and holding him is the best ever
• Prayers for Lucas are always welcome
• Ray and I are holding up and clinging to faith that all will be well. Lucas truly is healthy outside of this mysterious cyst. So once it is taken care of, he really will only be getting better from then on.

*Update*

The results of the HIDA scan came back normal. No connections to places there shouldn't be, so that's good, but we still don't know for sure why that cyst is getting bigger again. The plan now is just to wait. Lucas is healthy (outside of the cyst) and progressing like he needs to be, so they're just gonna keep letting that happen and do regular ultrasounds to make sure the cyst isn't becoming a problem again. It could be just that it needs more time to respond to the antibiotics. So for now I'll just enjoy being able to hold him and cuddle every day. I know this precious boy has had plenty of Divine assistance so far, and I know that isn't going to stop. If the doctors never figure this thing out then at least God knows what it is and He can fix it.