The Fight Continues

 Our little dude on Friday (10/12) morning.

Needless to say, it's been quite a tumultuous couple of days. They always say meningitis comes on super fast, but I guess you don't realize it until it's your kid that's seizing before your eyes or in your arms. I am glad Ian took the time to get all that info out on the previous post because this is a lot more "stuff" than we ever encountered in the NICU. Finnegan is being seen by multiple doctors and specialists and is on more medication than he ever was in the NICU. As his former NICU nurse and bestest friend Brittany said, "he only tried being naughty once!" Our NICU experience has definitely prepared us for this PICU experience, but nothing could fully prepare me for this. I wanted to share some pictures and give a brief update on Finnegan since Ian's last post this afternoon.

As you can see, Friday morning our little guy was just happy as a clam. He was being super adorable and making it difficult to get ready and leave for work. Saturday, Finnegan seemed to have hit a wall with a fever. He wasn't eating much and just kind of poopy.

 Poor little guy... :(

I'm not quite sure how I held it together between his first seizure in the x-ray room, our whirlwind of a walk carrying Finnegan with his oxygen mask across the hospital to the ER, and his preparation to be airlifted to CHOI (Children's Hospital of Illinois) in Peoria. The ER experience was not the best. I love OSF, but we will be talking to someone about that experience, that's for sure.

Finnegan was responsive while I sat next to him in the ER between tests. The one nurse wrapped him in a blanket and I sat down to hold his little hand and stroke his head (that usually gets a smile out of him). The nurse dimmed the lights so Finnegan could relax, but as soon as the lights went out his eyes got very big, his face turned red and the little hand I was holding went rigid. His arm started twitching and his eyes were bulging and blinking until he closed them but continued to jerk. It seemed like it took them days to finally gave him a sedative to stop the seizures and that was probably because they were arguing about how much he should get. After he was given Ativan and the seizure stopped, he got a paralytic and other sedatives so they could intubate him for transport to Peoria. 

Finnegan getting put on the chopper.

I was bummed I couldn't go with Finn on the chopper...mostly because I thought that would be our thing together but obviously because I was scared to leave him alone.

The trip to Peoria was overwhelming. I remember asking to myself and out loud several times, "How the hell did this all happen!?" We kept wondering if we could have done something different, but the "woulda-coulda-shoulda's" weren't going to make any of this better, so I quickly silenced that part of me that wanted to kick myself for not realizing something sooner, and quickly learned that being a parent requires that you experience those "damned if you do, damned if you don't" moments. I just hope that the others aren't so life-threatening!

Between the rolling clouds and gorgeous fall-colored trees, I found myself a little bit more at peace. I knew Finn was in good hands in the PICU and they were doing everything they could for him until we got there.

We ended up meeting Ian's parent's for dinner at Chili's while they put in a central line and did a spinal tap on Finnegan. I was preparing myself for an evening and possibly another day of absolute uncertainty because the doctor was certain we wouldn't know anything at least for a couple of days.

We were shocked shortly after we came back that they had a result and that we knew what we were dealing with, but we had no idea how any of this could have happened. We still don't. We might not ever know. 

 Sunday (10/14)

I thought seeing my son for the first time as a 1lb 11oz little peanut would have been the scariest thing I have seen, but seeing my little guy intubated and practically lifeless was more than I think I could comprehend. His little eyes were open and wouldn't close. It was like he was looking at me, but he wasn't really there. I insisted that they do something to either keep his eyes moist or close them. They began putting an ointment on his eyes to protect them, and eventually caused both to close more.

Leaving him and going home to my puppies was hard. Getting up and going to school this morning was even harder, but I knew if I was at the hospital with Finnegan, I wouldn't be any help. I needed to keep my mind busy.

Here are some new updates:

• Finnegan's response to stimuli decreased throughout the morning and into the afternoon. They took him completely off of all sedatives (pain killers) to get a better neural assessment, but the phenobarbital that he is on to prevent seizures still causes grogginess. The neurologist was able to explain that a little bit after looking at the readings from the first 5 hours of Finnegan's EEG. Finnegan has shown no signs of seizure activity, but he remains at a "level 2 sleep". He should be showing signs of fluctuating between different levels of sleep, but since his body is fighting hard and he's been through a lot, so he is okay with this current situation but will like to see it change, obviously.
• If he doesn't show more signs of improvements with his neural exams and responsiveness, they will do an MRI to see if there is another cause for his otherwise "not-with-it-ness". Even if he doesn't get an MRI this week, once he gets a bit stronger, he will get another MRI to check the situation with his brain size. The neural radiologist who read Finn's head CT said that his brain is small, but holds the correct shape which is good with regards to brain development. He'll most likely continue to be monitored with MRIs for his brain as he gets older to track his brain growth.
• His blood pressure dipped a little, so they gave him some meds which were then discontinued several hours later after he responded positively to them. 
• They changed out his fluids to provide him a fluid that will help get rid of some of the toxins in his system (I can't remember what it is called right now).
• While we spoke to one of his doctors, Finnegan began moving his mouth and eyes a little. As the night went on, Finn began to move his arm a bit more. During his 8pm neural exam, he was flailing his arm around to stop the nurse from pinching him and was kicking as well. He was sluggish with his right arm, but he was pretty po-ed so his left arm was working hard to get her away (gotta love Finn's temper). He also was coughing when the nurse checked his ET tube (all good signs). Before I left and said goodnight, he grabbed onto my finger and started "sucking" on his ET tube as if it was a pacifier. My little buddy woke up just to tell mommy good night! :)
• He's still unable to regulate his temperature well. He has a rectal probe that constantly monitors his temp (poor little guy), so the nurses are rather regularly putting his little blow up heating blanket on and off. 

Finnegan's pediatrician called me from home tonight to check on Finnegan. He hadn't had an opportunity to check his chart in the system yet, but knew he was over there and wanted to know more about him. We talked on the phone for over 30 minutes. He kept saying things like, "you are explaining all of this so well!" and my favorite "you shouldn't know what that means." He was really upset because there is a vaccine that Finnegan could have gotten to help prevent this type of meningitis. He eventually stopped explaining things and listened. That was probably the best part. He listened. He told us we did the right thing. He listened and gave me words of encouragement while his little girls yelled in the background. Heck, he even apologized because he will be out of the office for the rest of the week. We have definitely been blessed with the best doctors for Finnegan. We will probably sing praises for Dr. Emm for years to come.

It's really hard to see him so vulnerable and putting up the fight of his life (well...another one), but it's easy to stay strong with an amazing support system. Thank you all so much. Your prayers and blessings mean the world to all of us, especially Finn. We strongly believe in the power of prayer and we know that it is your prayers that helped Finn stay so strong in the NICU. Your prayers will also help him cruise to a quick recovery.