Busy Weekend and Happy Halloween

Finn got his feeding tube out Saturday and has been on full feeds since then. He also got his PICC line out on Sunday.

We had been waiting to talk to the neurologist since Thursday to hear about the results of his abnormal eye exam. FINALLY, the neurologist came to talk to Ian at like 8pm Sunday night.

Either way, the issue is that is that there is a delay in the brain getting the message, but the message is fully understood. It is possible that over time it'll all heal up, but a pediatric eye doctor will help, and we have him set up with one already. He also said that the eye test they do is just a pass/fail test like the ear test was in the NICU...meaning they can't tell what it means 100% or the extent. So, the eye doctor could tell us more if it hasn't corrected itself over time.

The hearing loss in the left ear is permanent, but there have been many major advancements in the realm of audiology in the last decade. The audiologists who ran the test said their machine, while advanced, it isn't sensitive enough to tell if the hearing loss is 100%. It is, at least, not doing a thing for Finnegan.

In addition to the hearing and "vision" issues, his left leg has what is called clonus. When the doctor checks your reflexes, he taps a spot, your limb moves out, the brain tells it to stop moving, and it stops. With Finn and his left foot, the brain isn't telling it to stop, so it keeps moving. I hadn't ever really seen him do that, so when I picked him up to feed him and his leg started shaking, I got a bit freaked out. I thought he was having a seizure, but the fact it was only in his leg caused all the doctors and nurses to think it was more the clonus than anything. The neurologist confirmed that. He might have to wear a plastic brace on his foot, ankle, and leg as he gets older to help with the clonus if it doesn't fix itself as his brain heals.

Remember the strokes? The neurologist also said that it is evident that his left side of the body was more impacted (weak) by the strokes, meaning that his brain has more healing to do in that effected area. He had another MRI because his downward gaze had gotten worse. This MRI did show that those areas are “inapparent". In other words, decreasing in size and not new. Finn’s first MRI (and ultrasounds from the NICU) showed extra axial fluid around the brain.Over the weekend his blood pressure started going down a bit, but it is still on the higher side of normal. Obviously, they'll continue to monitor that but as the week has gone on it has gotten better.

When Monday rolled around, we were all excited because we were told he could go home on Monday evening after all follow-up tests were done and everything else was organized. They did a short EEG Monday morning to see how much phenobarbytol he needs to go home on.

During “rounds” (which was not normal rounds because most doctors were away at a conference), the attending told Ian that Finnegan should be able to go home in a couple days. Obviously, this came as a HUGE shock. What was even more of a shock was that the EEG showed that Finn had a 30 second sub-clinical seizure. Sub-clinical means there were no outward signs. Finn’s Keppra dose was raised to compensate. This drug is apparently the wonder drug the epilepsy community has been waiting for. It’s very effective and very safe even at high dose levels. Dr. Taft (The neuro he saw in the PICU and that I really like) will be his neurologist, so he will work with Dr. Emm (his pediatrician) to monitor his levels of the seizure medication and check his overall development. We will probably have to go back and forth to Peoria often because that's where the majority of his doctors have their offices.

His more frequent downward gaze (sign of intracranial pressure) led the neurologists to recommend another MRI the next day to see if more fluid has been building up since the first MRI and to see what might be causing Finn’s gaze issues. In addition to having to do the MRI the next day, the doctors were concerned with Finn’s high platelet levels. They were just a smidge below the level where they would intervene with an aspirin regimen. We knew we’d be there at least another night.

The results from his second MRI let us know we’d be here at least until the end of the week. Finn’s second MRI showed that his strokes were decreasing which is great news, but it also showed the same extra axial fluid. This can be something caused by prematurity, something he would have had even if he were full term, or something intensified by the meningitis. The second MRI also showed hydrocephalus (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/). This almost never goes away on its own. Correction of hydrocephalus involves placing a shunt. This is a tube that goes from his brain’s ventricles that aren't draining on their own (lack of profusion), to a valve that opens at a given pressure level, to a tube that drains to his belly where the fluid reabsorbs. Finn will also have a second tube put in to drain the extra axial fluid so that its pressure doesn't cause the brain to collapse into the space the regular shunt drains. This second tube will go to a Y connector after the valve.

There are two things that are the most common complications from shunts. 1 - they fail and need to be replaced. 2 – infection. A resident neurosurgeon with the attending at his side drained Finn’s extra axial fluid (poked through his fontanel). It looked like mountain dew! The coloring is consistent with what would be expected after an infection. They did a culture on the fluid and it came back negative. This is good because that fluid communicates with CSF and if the CSF were infected, this fluid would be. That all means the surgery can go on. It’s scheduled for late Thursday morning, but the surgeon stopped by this evening and said that it will probably happen closer to 12pm. Had the fluid been infected, they would have waited. Since a common complication is infection, re-introducing already infected fluid to new parts of his brain isn't advised.

Placement of shunts is a common procedure for neurosurgeon to do, and this doctor has a very low infection rate. He’s also apparently a very rare find. I’m told most of them are good surgeons, but very bad at having a conversation. This one was very good.

After the surgery Finn’s stay is only expected to last 48-72 hours and then we go home!

Today hematology signed off on Finnegan’s case. No need to follow him unless his numbers (platelet) jump, and they gave guidance for when things should be checked. He was originally going to have blood draws 2x weekly for a CBC to check platelets, but I do not believe that is still the case anymore. We’re not sure what the new orders say for his discharge.

The neck sore he developed in the PICU kinda transformed and feels firm. The wound care nurse also said it looks different. They asked Dr Gray (his infectious disease doctor) to look at it. He checked it out and said it doesn't look to be anything active, so maybe just some scar tissue, nothing to worry about. Just to be sure, his pediatric attending ordered an ultrasound of the wound to just be sure it is in fact nothing to worry about. We’ll know more about those results probably tomorrow.

He is eating like a little piggy. His nurses comment on how much of a good eater he is! Ian also was the one to give him the meds this morning. He seems especially partial to the grape flavored Keppra.


They will do a repeat EEG to see if he's still having any seizure activity maybe on Saturday, otherwise they will do it outpatient if he gets discharged.

Ian got a Halloween crossword puzzle to do today and also was informed that they have a special Halloween dessert on the menu! We're bummed to spend Halloween in the hospital, but we have had fun with his costumes, and some of the nurses even dressed up!

It is a bit nerve wrecking that Finnegan will be going in for surgery tomorrow, but we know that this will help him in the long run. Even though he will have this shunt the rest of his life, we have heard numerous stories from families and friends about successes with shunts. We know Finnegan will thrive when he gets home, but we also know that we are in store for a plethora of doctors, therapists, and intervention.

So far we know he will be seeing:

• A physical therapist (He already has one through Early Intervention services)
• A developmental therapist (Already has one through EI)
• An occupational therapist
• A speech therapist (to monitor eating and eventually speech)
• A neurologist
• An audiologist
• An ophthalmologist
• His Pediatrician 
• His ENT to eventually get his tongue snipped (which the speech therapists at the hospital say            needs to happen)
• His Urologist to check on a possible hydrocele (will see next week)

Other doctors or teams that have been following Finn, but will stop before he leaves:

• Neuro Surgery
• PICC team
• Nephrology
• Hematology

     Yesterday, Finnegan got a visit from his Aunt Jenny and Cousin Kaylin. He hadn't seen Kaylin since July. :) During their visit, Kaylin and Uncle Ian colored pictures for Finn's room and worked on Kaylin's letters. She's so close to being able to write her name!

From our family to yours: Happy Halloween! :)

I have fallen in love with Ian all over again... He is the most amazing father.

Finnegan and his best friend and former NICU nurse, Brittany! :)

Please send some prayers to help Finnegan "soar" through his surgery tomorrow! :)

Complications become evident while moving closer to the exit door

Finnegan has been doing well, and on Tuesday they moved him from Intensive/Critical Care to Intermediate Care. Then on Wednesday he was transferred to the General Pediatric floor - the last stop before being discharged.

After the excitement on Sunday from his extubation, Finnegan has been taking it easy. From Monday-Tuesday he was usually found sleeping like an angel when he is not whimpering or crying about being hungry (when the nurses have listened to his stomach, they often say it is growling), waving his arms around, or doing everything he can to look at everything in the room but you. Oh, he also really loves holding onto his plastic connector rings. We often joke with him that he is pumping plastic instead of iron. He's got to get his strength up one way or another!

If Finnegan thought things would be easier once he was extubated, he was wrong (and well us too!). Finnegan had a LOAD of visitors on Monday including a speech therapist to work on swallowing, a physical therapist, and his Grandma Bruckner and Godmommy!


One of the best parts about Monday was the yummy Irish food at Kelleher's Pub with Finn's visitors and my one-on-one snuggles with Finnegan. After the disappointment of not being able to hold him on Sunday, I finally was able to hold my little peanut after 7 days of watching him fight for his life. I felt so surreal to have him back in my arms. He felt so huge compared to what I remembered, even though he has lost some weight from being in the hospital and not eating like he usually did. We hung out with daddy for a little while before daddy went home. I worked with Finnegan on sucking a pacifier, since he needs to reacquaint himself with sucking while we watched Easy A on television. I realize it's not the most family friendly movie, but it was the best I had at the time! We must have snuggled for about an hour before I was starting to fall asleep. His nurse and I weighed him before putting him to bed for the night. He currently weighs 5.5kg or 12 pounds 2 ounces which is about half a pound under what he weighed when he was admitted. So, overall, not bad! It's just hard to think that at nearly 6 (or 3 corrected) months old, Finnegan is 4 pounds lighter than his cousins and friends that are only 2 months old! What a little nugget! :)

Finnegan has still been struggling with his blood pressure, so they have been giving him medicine to help control his spikes of high blood pressure. His resting BP is at the high end of normal, mid-to-upper 110's. They have also been monitoring his potassium levels, and since they have lowered his Lasiks, he has not needed extra supplements of potassium.

I started back with my GED tutoring job this week, so my time with Finn was a bit more limited, but it felt nice to get back into the "old" routine. Plus, it was easier leaving him when I knew daddy was with him!

Finn and Aunt Jenny

On Wednesday Finnegan was officially 6 months old. I'm still in disbelief that he is 6 months old. I can't even really remember what our lives were like before Finnegan. It's amazing how quickly we can adapt to life changes. Wednesday was also exciting because he got moved from the Intermediate Care wing to the General Pediatric floor. That was quite a shock to the system when they told us he would only be checked on for vitals, etc. every 4 hours or so. The dropping of constant monitoring is a tough thing to go through.. "but what if" keeps cycling through your mind. It's a whole other world up here. It also took us a bit getting used to the "baby cages". The babies are in a basic hospital crib, but it is like a canopy bed and the sides of the "canopy" come down on all sides so more mobile patients cannot "escape" or get in trouble if parents aren't around. It's a standard procedure in children's hospitals, but it was really...shocking. Needless to say, we won't be leaving Finnegan. We also got some amazing news that Finnegan could possibly be discharged Sunday/Monday if he was on full bottle feeds and completely weaned off of methadone (pain med). I like to joke that Finnegan is our baby drug addict, but it is quite serious to make sure he doesn't go through withdrawal since he has been on some heavy sedatives and pain killers over the past week and a half. He also needed to be off of the oxygen to go home, but that came off Thursday evening!

Finn and Cousin Katie

They started him on bottles on Thursday. He ate about 4 oz from a bottle every other feeding and would get angry whenever the bottle left his mouth. He's now up to eating every feed from a bottle, but he had some struggles with spit up today. They started giving him an antacid 2x a day to help with any acid reflux. Once he is on 100% bottle feeds for 24 hours they will take out his feeding tube.

On Thursday, Aunt Jenny and Cousin Katie came for a visit. It was so awesome spending time with two of the most amazing women in my life. It was absolutely refreshing. Finnegan also started to find his little voice again. From Thursday-Saturday he started crying, talking, and squealing like he did before his began his hospital stay. He's still a bit congested, but he sounds A LOT better. He's still getting his breathing treatments and his vest treatment, so that helps a lot!

Since it was nearing the end of the week and most procedures aren't able to be done over the weekend, his care team set him up with a plethora of tests to be completed between Thursday and Friday. Thursday he was given a visual EEG to test his vision (duh) and Friday he was given a hearing test. Neither test produced very good news. Finn's vision test showed abnormalities. We're still not 100% sure what that means, but his neurologist should be by sometime this weekend to explain things in more depth. From what the report read, it seems as though he can see, but his brain was not reacting quickly enough to light changes, like there was a time lapse between when a light was shined and his brain responded/acted.

His hearing test was even more disconcerting. Consistent with his previous hearing tests, Finn's right ear is perfect. Previous hearing tests also were inconclusive regarding his left ear. Results from his most recent test showed that his left ear was not doing very much. The audiologist said he has permanent hearing loss in his left ear. The extent of the loss and the reasoning behind it are currently unknown. He could have been born with this hearing loss or it could be from the meningitis and the antibiotics used to treat it. In another month we will do a follow up test. The audiologist assured us that he shouldn't have issues with speaking but that localizing sounds and overall awareness will be hindered. As he gets bigger we can explore the world of hearing aids, but right now we're just trying to come to grips with it. Of all the things that could have possibly gone wrong as a result of the meningitis, and his severe prematurity, I would say that so far we're pretty blessed; however, it's still heartbreaking. Throughout my pregnancy and Finn's first 6 months of life I have dreamed up what his life would be like, how perfect he would be, and all that he would be able to accomplish. I'm not saying he won't be able to do any of the things I dreamed up, but it is yet another struggle for Finnegan to overcome. No one likes to see their babies struggle. I was just praying that this last hospital stay would be the end of his severe health struggles.

He started crying when the mobile stopped. He's that cute. The blanket he  is using in his prayer blanket from the hospital, made by a group from St. Patrick's Catholic Church in Bloomington which happens to be our home parish. :)

Finn has quite the road ahead of him. The hardest part of all of this recovery is having to pay closer attention to his milestones and development. I worry that I'm going to turn into one of those moms that freaks out at every little thing my baby does. I'm so scared that the vision abnormality and hearing loss are not going to be the only two things we have to be concerned about with Finnegan. God, please help us to understand your plan for our little man.

I don't think I know how to thank everyone for all the prayers. It's overwhelming when people tell me their church is praying for Baby Finn. When I think about the amount of people who are keeping Finn in their prayers, I want to cry for joy. The words "thank you" are not enough, but they are all we have. We are so humbled by the caring you and your friends and family have shown for Finnegan and us. From the dozens of churches, family, friends, and even to the father of Ian's sophomore/junior chemistry teacher... people very close to us and people we have never met: from the bottom of our hearts, thank YOU! We would like to let you know again just how much we believe in the power of prayer. Whether you call it prayer or well-wishing, you have made the difference in Finnegan's life.

We know that Finn will have a rough road ahead of him: re-learning muscle strength, compensating for hearing loss in his left ear, overcoming his abnormal vision (other than knowing he is not blind, we're not sure what the extent is), and any other sequelae, neurological or otherwise, that might not yet be clinically evident. We are overjoyed and eternally grateful to know that he has at least survived to have the chance to battle these things. Things could have ended way worse. Many, many, many people, including family, have not only survived life-threatening diseases... even diseases that don't have a known origin or name, they have done well. If they can do well, so can Finnegan.

The amazing view from Finnegan's room. These two windows are a whole wall in his room. It is absolutely breathtaking.

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.

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!