Turning a Corner

After the results from the MRI, Finn really seemed to perk up. It was great seeing little glimmers of our fiesty Finnegan. Overnight and into the next morning, Finnegan started fighting with his tube. He would cough really hard very often and otherwise cry in discomfort. He also got the hiccups several times in true Finn fashion and learned how to set off the alarms on his vent to get attention. He's definitely getting back to his old self!

During rounds on Saturday, the doctor that I like to call "Dr. Pinch-n-Go" came in to check him over. While pinching him and checking his responses he noticed that the left side of his face seemed to not move as much as his left. Ian and I hadn't noticed it, but of course after the Dr. pointed it out, that's all we could really see. The left side of his face is still a little more swollen than the right, and it could also explain why he struggles getting his left eye closed all the way. Dr. Taft (neurologist) was consulted and he said that it's probably another side effect of the mini-strokes and only time will tell whether or not it is a permanent condition. The good news is that he is squirming around with his whole body (the RIGHT side included) to the point that he has been sliding down his little bed pad. His night nurse even said she had to put an extra set of "brakes" (a rolled up blanket/cloth placed under his toosh) to keep him from sliding. His right arm is still not as active as the left which seems to be constantly moving, but he's started attempting to grab at his ET tube with his right arm, so even though that's a naughty Finnegan, we're secretly cheering that he's moving it around and ready to be extubated.

 

Otherwise, during rounds they decided to maintain all of his medications and set up labs for the rest of the week (CBC and other panels on Monday and Thursdays of each week unless others are needed). They also set up an extubation plan. They lowered the settings on his vent some more. When I woke up in the morning, they had his breath rate down to 10 (the lowest it would go). They decided to turn down his oxygen percent from 45% to 35% to get him closer to the amount of oxygen that is in room air. They also decided to put him on CPAP trials to determine if he is ready to be extubated. He had two 1 hour trials and two 2 hour trails over the past 24 hours. In true Finnegan fashion, he rocked all of those trials, keeping his oxygen saturation above 95 and breathing like a champ. Dr. Gray (the Infectious Diseases doctor) also put in a note to have some genetic testing done to see if there is any abnormalities that might have explained his infection. They will check IgG and H Flu. A family member has a known condition of specific antibody immunodeficiency of polysaccharide encoded bacteria. This condition deals with the Immunoglobulin G (IgG) antibodies that help support the immune system. IgG is actually the main antibody found in blood and fluid in the body used to help control infection of body tissues. Each bacteria that enters into your system has a specific type of coating/protection to attempt the body from destroying it (consider it like armor). Most antibodies in your immune system can break down almost any type of bacteria. If Finnegan is found to have this disorder, it means that his body on its own cannot fight the specific polysaccaride encoded bacteria. We'll cross that bridge if/when we get to it though!

Finnegan really turned a corner these past two days. He is more alert, napping when he can get comfy (which I can't imagine is easy with that tube down his throat), and crying more regularly. They hooked him up with a mobile that has some awesome music and fishes on it (see pictures above). He stared the seahorse down for quite a while. I can't wait to hear him talk to it! On Saturday, Dr. Taft (neuro) came in to check on him. He came in with a big smile because Finnegan was holding onto his rings and wiggling both arms and legs around. He kept giving me a small punch in the arm and just seemed genuinely happy about is progress. He still is confident he'll be here a little while longer, but he just kept saying he couldn't believe the difference a day makes. He also noticed that his eyes were opening more symmetrically which also shows that his muscle weakness may be going away a bit on the left side of his face.

Saturday evening is spiked a lower temp which they were just going to monitor for a while. They gave him some Tylenol to help, but at around 8/9pm, his temp went up to 102.4. That was the highest his temp had ever been, so they decided to do some cultures to make sure no new bacteria or infection was going on. It takes at least 24 hours to grow the cultures, so we won't know anything for sure, but Dr. Gray (his Infectious Diseases Dr.) said that it is most likely his body fighting the meningitis and not a reoccurance of sepsis.

Sunday morning they gave him a dose of steroids to get him ready to be extubated. It was a pretty long morning dealing with all the hurry up and wait for the doctors, but we had some awesome visitors (Thanks for coming Jenell and Karissa), and Finnegan seemed really relaxed. In fact, the doctor said that he had to be awake and feisty prior to extubation to make sure that he'll be angry enough to breathe on his own. We thought that wouldn't be a problem, but low and behold Finnegan was fast asleep. They even stopped all his pain meds and sedatives and he STILL was sleeping soundly. Over the course of an hour or so I tried everything I could think of to get him up so they could extubate him. We changed his diaper, suctioned out his tube, shook a rattle, clapped, put on a loud movie...nothing. He would stir and open his eyes and then fall back asleep. Finally, I decided to spike his hair and put on some lotion and that seemed to do the trick. His nurse and the nursing student observing her kept laughing at me from outside Finn's room. Well, he was up, but now we had to keep him up. I was singing and clapping and waving my arms around like a crazy woman. Eventually Ian took over, but I was bound and determined to get that tube out of my baby and help him feel more comfortable in the long run. They stopped his Fentanol because it can suppress respiration and ordered methadone for when he was extubated to help avoid any withdrawal from all the pain meds he had been on for so long. Yeah, our Finnegan the drug addict. ;)

Eventually he was up, the doctors were back from lunch, and the extubation process was going to start. They set up another intubation tray just in case Finnegan wasn't ready or had a mishap. That was just bad memories to see all of that again, but I'd rather them be safe than sorry! The doctor gave the orders and by the time I realized they had started it was over and Finnegan was wiggling and crying with drool down his face. We still haven't heard him cry because his throat is super sore, but it was just so amazing to see his whole face and his mouth without that stinking tube down there. They gave him a breathing treatment right away and said they would monitor his breathing to see if he would need any other help or treatments. Since he was off of the vent, that also meant that Ian and I would be able to suction out his mouth if he was blowing extra spit bubbles (which will be in abundance for the next couple of days). When they told me to suction him out about 5 minutes after extubation I said, "wait, ME!?" The respiratory therapist and his nurse laughed. Finnegan didn't seem to like suctioning like he did when he was intubated. He would shut his mouth and refuse to open it until more spit would flow down the side. He's such a stubborn baby! I wonder where he gets that from... ;)

Dr. Syed talked to us right after the extubation and talked about his treatment plan thereafter. He will be given new breathing treatments to help break up secretions. This is known as the vest and it goes around his chest like a vest and vibrates. It seems horrible and looks vicious, but it puts most babies to sleep and does the job to get all the gunk out of his lungs/airway. They also said they will give him Albuterol if he seems to be wheezing or struggling. This will help open up his airways. 

They also said they would take out his arterial line because he didn't need it anymore. With that gone, that means snuggle time! They also said they will put in a PICC line tomorrow (just like he had in the NICU... http://picclinenursing.com/picc_why.html). I'm assuming it has something to do with the fact that his central line was in his femoral artery and located in his diaper...where he's been pooping up a storm. He will also most likely have to undergo a swallow study within the next couple of days to see if he is ready for bottle feeding yet. Because he hasn't used the swallow reflex in over a week, it is possible that he might need to relearn that.

Gigi (great grandma), Grandma Doman, Great Aunt Jan, Aunt Jenny, and Cousin Katie came to visit right around the time they extubated him. They were all so excited to see him and especially excited to see him without the ET tube. The little puppy in his crib is a gift from Aunt Jenny. :)



Finnegan pooped after a pretty exciting day. He's such a trooper.

After we cycled everyone through to visit (we're technically only allowed to have 2 people in his room at a time, but we tend to push it and have 3 without a problem), we went to Steak n' Shake for some really bad for you food and milkshakes. I have to say...the s'mores shake is not so yummy. That was a real bummer. Otherwise, the company was wonderful! :)

Finn and his Aunt Jenny! :)

After we got back from "linner", Ian and I hung out with Finnegan for a little while. They had given him Albuterol because of his weezing, so he was shaking like crazy (side effect). We thought he was cold or seizing, but apparently Albuterol gives you the gitters. He seemed overall uncomfortable. I can imagine that his tiny little throat hurt like hell.

I was hoping to be able to hold my little munchkin last night since he was extubated and his arterial line was out, but some medical emergencies on the floor and shift changes made that not possible. It killed me because he was so fussy and uncomfortable and all I wanted to do was pick him up and make him feel better. It was hard leaving him. It was harder leaving because I knew I would be away from him a lot more this week because I will resume tutoring in the evenings at the community college for GED classes. It really helps to know that Ian is there with him, but it's always hard to leave your baby; especially when your baby is a momma's boy.