Back at St. Francis

Where it all (maybe) begins…

On Friday 10/12 Finnegan wasn't quite smiley self. He felt a bit warm, but we were not concerned. Babies sometimes get pooped.

On Saturday 10/13 Finnegan had a low-grade fever that bounced around from 99-101.5. He seemed tired and also wasn't eating quite as much. We called his pediatrician’s office where a nurse said we could give him Tylenol for his fever and to watch for other signs that might appear such as excessive coughing or sneezing. His tiredness and feeding could be explained by the fever.

Sunday 10/14 morning Finn still had the fever. After Christine fed him around 4:30am he would breathe in and then let out a noise. It sounded close to the same way he will sometimes just lay there and talk to us. I got up with him around 5:30 because he hadn’t stopped. I brought him downstairs with me while I made muffins, brought in the paper and had a bite to eat. During that time he quieted down.

When I was done eating I made him a small bottle and fed him some peas which he seemed neither for nor against ;). He sucked down the small bottle afterwards. I brought him back upstairs while we got ready for church. Finn looked a little pale and his breathing seemed labored. We decided to bring him by prompt care and go to a later mass instead.

At prompt care the doctor noticed his belly was distended and ordered abdominal and chest x-rays. After the abdominal x-ray I picked him up so they could set the next slate down. He started moving his arms around and blinking widely. I told the nurse that he was “doing something I’ve never seen before”. She said he was seizing. It lasted about a minute and fifteen seconds and we brought him back to his room where they placed him on oxygen and called ahead to the ER where we were next headed.

The ER doctor seemed like an idiot with kids. Thank God for nurses, respiratory therapists, and color-coded charts to tell them what to expect and do. They gave Finn and IO which is a nasty quick access for giving fluids. They called his pediatrician’s office and the on-call doctor said to send Finnegan to the Children’s Hospital at OSF St. Francis Medical Center where he was born and spent the first 78 days of his life. I went to go move the car, saw that it had little gas in it and decided to fill the tank. I broke down and balled for a quick bit. We still had no idea what was causing all of this. While I was gone he had another seizure that lasted about a minute and a half. At first they were planning on sending him to the intermediate Pediatric unit by ground transport, but later changed their minds to the Pediatric ICU (PICU) by Life Flight (helicopter). This would be Finn’s second helicopter ride… the first was while inside mommy. Christine was told she would still be able to ride with Finnegan.

It took more tries than I care to enumerate to intubate Finnegan. The number was somewhere between 5 and 7, but if I try to figure out which I get sick thinking of it. Each time they tried his blood pulse oxygen level dipped and correspondingly so did his heart rate. He had a wonderful respiratory therapist (RT) in the room that was assertive. She spoke up on Finn’s behalf several times and made sure he had the oxygen he needed. He did extremely well while “bagged” (face covered by mask with the RT squeezing the bag that an oxygen line was attached to in order to keep breaths flowing. During that time his blood pulse oxygen level and heart rate were at excellent levels. Eventually an anesthesiologist got the tube in just right and he was intubated and ready for flight. The pilot checked in to let them know time was of concern because a storm system was moving in. They took a quick x-ray of his chest to verify placement of the tube and make sure everything remained good with his lungs.

They took him out the helicopter and Christine piped up asking if she could still come with since she was told she could. They said no. I said I wasn't going to argue because they’re in charge and time is of the essence, but you need to share that knowledge that no one can ever travel with the patient by helicopter so you parents don’t get misinformed. One of the nurses who had been in the room said she just had to give us hugs. That Christine had handled the situation better than any mom she had ever seen. I joked with Christine that I didn't know if that was a good thing or a bad thing. I thanked the other nurses who were still in the room. On our way out we ran into the RT. I thanked her and told her she was the greatest source of call in the room and did a great job of keeping everything going smoothly. She said her daughter (now 26) was in in the NICU for a long time and that’s what got her into her chosen career.

Christine and I went out to the car, snapped a picture of Finn being loaded into the helicopter, and went home. We packed night bags just in case, fed the dogs dinner (3 hours early), and took off. We caught the edge of a storm about 20 minutes outside of Peoria that lasted about 10 minute for us. Coming into Peoria is always a pleasure. You take I-74 down into the valley and the trees and river and gorgeous. I said “OK God, I get it… I need to take time to relax, but this is not what I’d call relaxing!”

We got to the hospital and it took a while for us to get back to see Finn. The floor is locked down just like the NICU was. You need a badge to swipe in and the concierge service that gives the badges was short-staffed. When we got to his room his doctor for the night introduced himself to us and let us know that basically we didn’t know what was causing this. They’re doing a lot of bloodwork and also a head CT and lumbar puncture (lp). He had low sodium (123), low blood sugar, low hemoglobin, extra fluid around his brain (that was not causing excess cranial pressure), and a really low white blood cell count (1.5-1.8… can’t recall). The possible causes are endless, but an infection explains everything he’s clinically showing so far.

The LP came back showing gram-positive cocci meningitis. That’s not a trivial infection. It requires quick and intense medications over a long period of time (a little less than a month). Depending on how Finn trends, towards the end some of it is possible to be treated while at home. That all depends on other care he needs. Right now he’s on a ventilator, sedating pain medication, maintenance IV, supplements for his blood sugar and sodium, etc. He also has an air/heat blanket on him to keep him warm.

Christine went home to take care of the dogs and get a good night’s sleep. She isn’t on a salaried position right now and so she only gets paid for when she shows up. She’s at a point where a higher level of pay starts to kick in and then back dates for a little while. But if she’s not there, that can’t happen. I took a week off of work and will mostly be staying here. If Finn gets worse, Christine will come over as well and we will find a way to make do.

Overnight he had a couple of dips in his stats. His blood pulse oxygen would dip and his heart rate would go down. He was trying to breathe on his own, and he and the vent were fighting because of the timing of breathes. They lowered a setting to make it easier for him to breathe if he wants to. His hemoglobin was also still low so they gave him blood. He looks much better now! He still has the heat blanket on, but it’s on a lower setting now. The blood will also have raised the hemoglobin and thus gives better oxygenation to the blood and everything that needs that oxygen will do better.

This morning Kylie woke Christine up at 4:50 by licking her. When Christine told her to go lay down, she yipped back! That’s the second time in a couple of days Kylie has been vocal to tell us something. It’s cute, but hopefully it stops soon :)

The blood culture came back also showing gram positive cocci. That’s the same thing that showed on the LP meaning it’s in his spinal fluid and blood. Being in the blood makes this “gram positive cocci meningitis with sepsis”. Adding sepsis makes it all the more serious. His intensive treatment continues. For now Finnegan is not showing any of the clinical signs of long-term problems. Those problems can come on over minutes or over days.

They backed off his pain / sedation medicine because he was not reacting to stimuli as they expected. A little bit after that Finnegan blinked and the doctor said, “Ah! Good.”

Finnegan also had an arterial line placed to constantly measure his diastolic blood pressure because it was trending low.