One Step Forward, Two Steps Back?

Finn's big boy blanket.

The whole saying, "one step forward and two steps back" hits home. While Finnegan is fighting this infection like a champ, his body is still going through the ringer. After his seizure yesterday morning, they started him on a medication called Keppra in addition to his phenobarbital. Otherwise, he remains on all the meds that Ian reported on yesterday. When I got to the hospital after work, he looked extra puffy and miserable. We took turns visiting with Finn and his visitors before heading out for a bit.

We went out to dinner with Grandma and Grandpa Bruckner, Aunt Meghan (back from college!!!), Uncle Danny, and Kaity. We always have a good time at Granite City!

Finnegan also got a nice treat from his Uncle Danny. When Finn was in the NICU, Danny made a song for him to help pull him through. The songs continue! :)

"I have a nephew baby Finnegan
He has got a little sick again
It's okay cus he will sure win again
My tough nephew
Finnegan-again-again-again"

When we got back to the hospital, I walked into his room. I thought something was fishy because all of the lights were on and 2 people had just left the room as I was walking down the hall. After I introduced myself the nurse informed me that he had just had another seizure. They let it go for 3 minutes but it didn't seem like it was stopping, so they administered Ativan and he calmed down. They also gave him an extra dose of the Kepra at that point to try to stop any future seizures. After about 45 minutes or so, Ian was standing at Finn's right bedside (the way he was facing) and noticed his eyes open really wide. I was sitting in the recliner on the other side of his bed reading. Ian started talking to him, asking him what woke him up. I got up to go see him, and Ian said he thought he was seizing again. Just as I came around the corner of the bed, I could see his eyes blinking and his lips jerking. When I got closer his right arm and leg were twitching and he was bubbling at the mouth with drool pooling under his cheek. This seizure lasted about 12-15 minutes. It took them about 6 minutes to get the right dose of Ativan, and then the pump the nurse was trying to use to administer the drug was failing each time. Once they got the drug in, he still wasn't stopping. The nurse couldn't get ahold of the on-call resident or the charge nurse to help. Ian went out to the nurses station to try to find someone to help as well. Once the resident got there, he ordered a 3rd seizure medication (Dilantin) that Finnegan continues to be given. About 4 minutes after the Ativan was pushed, the resident noticed his right side had stopped jerking, but now he left side had started up. They were just about to push more Ativan when he calmed down and stopped altogether. Once he had relaxed, they also gave him a little extra Versed to help keep him comfy and calm. Needless to say, he looked a LOT better after he had all the meds.

Finn and all his equipment

I hated that it took so long. I had to walk away several times because I didn't know if I could handle watching him seize for so long. Each time allowed me to pull it together and be strong for him and to keep a clear head so I could understand what was going on, what they were doing, and how Finn was responding. After he had calmed down and all the meds were administered, the resident answered some of our questions. Our main concern was that the signs of the seizure were so slight, if someone wasn't watching him, they might not know if he was seizing at all. The doctor assured us they would be monitoring him more closely (and they did--someone was in his room checking on him at least every 10 minutes). He also said that the seizure could continue for up to 20 minutes without causing damage. The damage would happen because as he seizes, he uses up energy. As he uses up all his energy, it will start breaking down the sugars in his body which will then produce acid (similar to what happens when you work out); however, since he can't control his body to stop when his body tells him enough, the acid that builds up in the body could cause lasting damage. Luckily, his didn't get to that stage, and the nurses and doctors are rather good about making sure of that--as long as Finn isn't being stubborn and listens to the medication!

After we knew Finn was at least relaxed and everything else was rather under control, Ian and I took a walk around the hospital and made some stops at the St. Anthony Sanctuary and the Chapel. Ian dazzled me with some of the facts he had acquired about the different saints and the stories behind the stained glass windows in the Chapel. Apparently he'd been reading up on all that stuff while he's spent so much time at the hospital with Finn. I guess if you're going to be in a hospital for days on end, the best place to end up is the Chapel. I felt such an overwhelming sense of calm.

When we got back up to Finn's room, I took an extra sigh of relief that nothing had happened while we were gone and that he was sleeping peacefully. Ian held Finn's hand and I hugged Ian while we said some prayers before Ian went back home to take care of the dogs and sleep in a real bed.

Luckily, Finn had a rather boring evening. He had one issue of destats when they were repositioning him where they had to bag him for 25 seconds, but otherwise he slept well. They lowered his breath rate on the vent down to 20 (from 22) because his blood gas showed a high pH level (alkalosis) which meant they were overventilating him a little (http://en.wikipedia.org/wiki/Respiratory_alkalosis).

This morning his nurse said that they also are suspending his phenobarb (one seizure med) because his levels were up a lot higher than they wanted them to be. Phenobarb stays in your system, so as they kept adding more on, it was adding to what was already there. They want his level to stay at 20 and yesterday it was at 37 and this morning at 30. He has more than enough in his system. They will check later today to make sure he doesn't need more.

Finnegan's "freedom cuff"...we were lucky...
that was the only one left that wasn't pink!

Before they got him ready for his MRI, he got a "bath" which consisted of then cleaning him off with cleansing wipes, new bedding, new diaper, and some baby lotion. While doing this, Finn's left arm went wild. He started grabbing at his tubing for his central and arterial lines and eventually found his way up to his ET tube. They quickly remedied that with a "freedom cuff" which goes over his arm to prevent him from bending his elbow and reaching those very important tubes! It was a nice flash of the Finnegan I know and love... :)

We were originally told this morning that his MRI was scheduled for around 12:30-1pm, but about 15 minutes ago they decided to switch him and another PICU patient who was having seizures because they wanted to put that patient on an EEG to catch the seizure activity prior to having the MRI. I said an extra prayer for that little one, but I'm happy we might get answers a little bit sooner. Depending on his activity, they may give him paralytics to keep him still so they can get good pictures of the brain, but after his first set of sedatives before transport, he looked peacefully passed out.

All of the people getting Finn ready to go! He had quite the entourage.

One of his doctors will be there the whole time to administer drugs if needed in addition to a respiratory therapist (one of our favorites from the NICU!) to help in case something goes wrong with his vent, a nurse or two to help, and a couple other people who are obviously running the MRI and patient transporters. It took 8 people to get him disconnected and ready to go. Ten people helped to transport him to the MRI. At one point, 12 people were in his room helping to get everything together.

He is all packed and ready to go to the MRI!

About 10 minutes after Finn left, Dr. Taft (his neurologist) came by. He said they will focus on adjusting the Keppra seizure medication because that is the drug that he will be able to use continually. The Dilantin that they gave him last night is not good for children for extended use, so they will only use it when absolutely necessary. They will also monitor his phenobarbital levels to make sure that he's not getting too much. He's still concerned that he's so sleepy. On average he's up for maybe 30-60 minutes per day. Right now he is attributing that to his constant battle of the infection, but obviously the MRI will give us a little better idea of what's going on. MRI results will most likely come tomorrow after everyone has looked at the MRI.

His Infectious Disease doctors also came by...well they came by super concerned that his room was empty. Apparently they didn't get the memo that he was getting a MRI. They both agreed that the sleepiness is most likely from him fighting the infection and all the drugs he is on.

Back from the MRI and coming
off the crazy drugs!

After about an hour and a half, Finn came back with his entourage. They reported that the whole process was very boring and that he was a champ. They had to give him a low dose of a paralytic because he was a little fidgety, but that he did well.

About 5 minutes after they got him all set back up in his room, they rounded on him. They decided to do a lot with his medications. They are discontinuing albumin (levels fine), phenobarb (recheck daily to get level back to "normal" before restarting), and Versed.

They are reducing the amount of Lasix they give him from every 6 hours to every 12 hours because they are at a borderline of how much he is putting out. They are starting a loading dose of Keppra (seizre med) to get a lot more in his system before they give him maintenance doses. They are also starting Precedex (the more friendly sedative) at his next med time to replace the Versed. He will remain on Fentanyl for pain management.

They are increasing his calories on his food from the regular 20 calorie to 24 calorie formula and also increasing the rate to 25 mL/hour.

They are decreasing his breath rate on his vent from 20 to 18 and his PEEP level from 7 to 6.

For about an hour after he got back from the MRI, he was been breathing over the vent's set rate. His rate was currently set 20 and he had been breathing at 30-33 while sleeping (which is a good, new development!). The nurses said that sometimes trips like that get the kids more stimulated and often times keeps their resp rates up; but, he got lazy and is now riding the vent again. Well, not lazy. I'm sure he's pooped. Speaking of poop, they also will give him glycerin suppository as needed to help him poop.

Mommy likes to do my hair.
Gotta love the baby hawk!

MRI Results:
Dr. Taft came at around 6pm to discuss the results of Finnegan's MRI. There were several findings that he did not expect, but neither are especially life-threatening, just unique to Finn.

The first finding is that Finnegan has a lot of extra space between the skull and brain. As found in the head CT earlier, Finnegan's brain is a bit on the small side, but all the "parts" that need to be there are there and as far as they can tell functioning as they should be. Typically as the brain grows, the skull expands. With Finn, the skull grew because the fluid was pushing it insead of the brain pushing it. There are a lot of blood vessels that run just under the surface of the skull that typically just drop right to the brain. In Finn's case, the vessels have to swim through the fluid to get to the brain. This means he is more susceptible to infection and brain bleeds in the future. Specifically, the doctor said that Finn will have to forgo being a football player. Ian was pretty bummed because he wanted Finn to follow in his footsteps of being the big high school football star (ha!). That was simply the way that Finnegan was born and not from the meningitis.

 

The most unexpected finding was a bit scary to hear, but will most likely not have lasting damage/negative effects on Finnegan. The MRI showed numerous, but extremely tiny strokes on both hemispheres and the anterior and posterior of his brain (aka: all over his brain). These are nothing like your grandmothers' strokes. Both Dr. Taft and the neural radiologist believe they developed as a result of hypoperfusion. Hypoperfusion is the sudden disturbance of the mental equillibrium from a "slow down" of circulatory fluid (blood) to the brain. Most likely, when Finn started getting really sick over the weekend, his blood pressure dropped which meant that not enough blood and oxygen were getting to his brain, and the strokes were a result of hypovolemic shock resulting from insufficient blood volume for the maintenance of adequate cardiac output, blood pressure, and tissue perfusion (http://medical-dictionary.thefreedictionary.com/hypoperfusion). There is no evidence that the strokes permanently killed or damaged any brain cells or parts of the brain, but just caused the brain to go into shock. The injured cells have a chance to heal, but until they do, they're acting like they're drunk. This compromises his mental status; hence why he has been so sleepy and "out of it". As the infection clears, Dr Taft is confident that the parts of his brain affected by the strokes will also start healing, and as a result he will begin being more awake. That on top of the havoc meningitis wreaks means there is no guarantee that he will be the same Finnegan as before, but it is a definite possibility. Dr. Taft thinks he'll be here a while longer (at least 2 more weeks). We'll see how he does.

Dr. Taft also said that compared to the other two kids that have different forms of meningitis, Finnegan's brain situation is really helping him in the long run. Both of the other kids are having major issues with brain swelling because of their infections. Finnegan's extra space between his brain and skull is actually helping him.

However unsettling the news, Finnegan surprised us several hours later with this:

 

 

 

 

 

  

Our little fighter! :)

We haven't seen him this alert since his admission. It's great to see little snippets of our little boy! Thank you again for all of your prayers, and please continue to pray for Finnegan's recovery. He still has a long way to go, but he's on the way!