Thursday, November 15, 2012

Regaining Strength

Since our last post, Finnegan has been on the mend. We've definitely had our set backs, but this morning Finnegan's shining smile and adorable little giggles reassured me that it will all be okay!

Last Friday Grandma and Grandpa Bruckner came over. We had a nice dinner, played Uno, entertained Finn, and overall had a great evening. It was hard to believe that it was already a week ago that Finn had his surgery.

This weekend Finnegan started to vomit while eating. This isn't your typical spit-up. We're talking projectile, large amounts of formula pukiness. AKA: No fun. He decided to throw up a couple times over the weekend, but he was still eating very very well. He also began doing this little wheezing sound whenever he would inhale, so we decided we'd talk to the doctor about it on Monday.

He had a scheduled appointment with his pediatrician on Monday. Here, Dr. Emm said he was pretty sure Finn had some sort of reflux going on, but didn't want to put him on medication for it until it looked like he really needed it. During that appointment we also found out Finnegan was gaining weight the way he needed to (he was up to 12 pounds 12 ounces...up 12 ounces from last week!). The doctor suggested we get him in to see his ENT to see what is going on with his vocal chords because of the stridor (squeaking noise during inhalation). He was assuming there was some sort of damage from the many attempts at intubation. Monday also meant Finnegan gets another blood draw. He was a lot more angry during this one than previous ones.
Monday evening he threw up two more times. The one time included throwing up his seizure medications.
Tuesday we went to see the ENT. They put a scope down his nose to check his vocal chords. Yeah, he wasn't too happy about that. The doctor said his vocal chords looked great (like we were surprised to hear that one), but he did show signs of moderate laryngomalacia which is literally translated as "soft larynx". What this means is that cartilage of the upper larynx is soft and immature (a word we are used to hearing when talking about Finnegan) and it collapses inward when he breathes in which causes a slight airway obstruction. This part of the larynx above the vocal chords which explains the high pitched squeaking we were hearing when he would inhale. This also can explain some of his feeding difficulties. His ENT said there really wouldn't be anything we should do for him because it is a mild case and almost all kiddos grow out of it by 1-2 years of age.

Tuesday Finnegan was a trouble-maker. He wasn't a happy boy at all. While I was tutoring Tuesday evening, Finn puked on Daddy for the first time. Needless to say, daddy was not happy, and both of us were concerned. After I got home Ian went to bed and I got Finn ready for bed and gave him his bedtime bottle and medicine. After I gave him his medicine, I set him down on my lap to get his burp cloth under his chin. He was looking away from me with his head faced outwards. As I went to turn his head toward me to tuck in the burp cloth, I noticed his neck was stiff and his eyes were fluttering. When I felt the rest of his body it was rigid as well. All signs pointed to a seizure. I put my hands on either side of his cheeks and tried to calm him. He turned his head and looked at me about 15 seconds later. I'm still not sure if it was a seizure or just Finnegan being stubborn, but either way I was a little panicked. Once he ate a little bit of his bottle, he started coughing. At first I just thought he took too much formula in at once so I sat him up a bit more and patted him on the back. A little spit up came out, so I wiped his mouth and realized that he still hadn't taken a breath in. His face turned bright red. I quickly went into mommy panic mode, but put him over my arm and hit his back as they taught us to in CPR class. He quickly began puking everywhere and took a big breath in. At this point, I knew I would not be sleeping. After my heart went back into my chest and Finnegan calmed down, I started puke clean up. Finn got a nice bath and snuggled up next to mommy. I sat him in his bouncy and took him into the bathroom while I took a shower. I didn't want to let him out of my sight. I sat up reading for a while and got up at every noise Finn made. At 1:30 am I got him a bottle and fed him without a problem. I relaxed a little but still went to check on him about every hour or so as my body would wake up or react to his noises. At 5am he woke Ian and I up coughing. It started out very dry and "barky" and then throughout the morning became a bit more "junky" and more frequent.

I eventually got through to his pediatrician's office and told them about the vomiting and the coughing and they said they'd talk to the doctor and get back to me. In the meantime, Finnegan had his Early Intervention Services Assessment for Developmental Therapy and Physical Therapy. This is also where they recommended any other services. Without much surprise, Finn is delayed. His Physical Therapist said that he is exhibiting the physical behaviors of a 1 month old, but it showing signs of older development (grabbing, holding onto things, bringing hands together). As we stretch him and loosen the joints and muscles, he should hopefully get back to normal. His Developmental Therapist also said he's delayed, but the fact he is attentive to noises, tracks a little (mostly just when he wants to), makes the consonant vowel sound of "ma", and can be soothed is a good sign. His plan for direct services from Early Intervention includes Physical Therapy and Developmental Therapy once a week. His DT will work with us and show us activities that we can do with him to stimulate his development. His PT will obviously work with us on positionings that will prevent him from getting too tight and obviously stretches. He will meet with an Occupational Therapist tomorrow to evaluate what services she thinks Finn needs. He will also meet with a Speech/Feeding Therapist in December to evaluate his needs in that area as well. So, on top of the four therapists, Finnegan has a case manager through Early Intervention, a Family Case Manager through the Health Department, and a Case Manager from the Insurance Company. All of them are female, and I ask Finnegan all the time how he gets all the ladies. When I asked him that yesterday while his Early Intervention team was here, he just smiled. ;)
Eventually, I heard back from the doctor's office. I insisted on having him come in because he cough was getting worse and he was having a hard time staying asleep because of it. At the doctor's office, we talked about breathing and what to look for again (which we were monitoring, but that cough was still bad). Since his cough was mix of dry and congested, the doctor decided to give him a steroid since croup is going around in the area. He also decided to put him on Prilosec and a different formula since the Enfamil AR wasn't cutting it. He's now on Enfamil Gentlease and he gets Prilosec every evening with some applesauce. As of last night, that was a hit! The doctor told me that if he throws up the steroids, to come back in for a shot of the steroid instead. Surprise surprise, Finnegan threw up his steroid. So, not even 2 hours after leaving the office, we went back so Finn could get a shot. My poor baby.

I went to tutor that evening and worried about Finn the entire time. I relaxed a little when Ian messaged me and said he was sleeping. He hadn't done much of that all day, so I was glad he was getting some rest. When I got home, Finn was still sleeping. After a while we woke him up to give him his medication and get him ready for bed. Ian set up the cool steam humidifier/vaporizer and I rubbed some baby vapo-rub on his neck. I was up with him a little bit throughout the night, but as his coughing subsided, mommy relaxed and slept a little bit.

When I woke up with him this morning, he was all smiles and giggles. It was a relief to see my little boy back to himself. He was still coughing a bit, but nothing like yesterday. He stayed up with me most of the morning, playing on his activity mat nearly rolling over and then sitting in his swing smiling at the birdies going around.
He finally fell asleep for a nap right as I was getting ready to take him for his blood draw. Of course! ;)
Next week he will go for his 6-month vaccinations (even though next week he will be 7 months already... hard to believe). Then, 4-6 weeks after those vaccinations they will repeat his immunological tests to see how his antibodies look. If they are still low, he will most likely be referred to an immunologist in Chicago.
This week was a challenge for another reason. After over 6 months of ups and downs, our new family will close on our first home tomorrow. I spent the week organizing homeowners insurance, switching over utilities, getting miscellaneous paperwork into the bank, and otherwise trying to make sense of all this craziness that goes with home-ownership. Since I spent most of the time worried about Finn, the fact that we are going to own a home (with the bank, of course) tomorrow it didn't hit me until I was on the phone with the City Hall getting our water bill transferred. She said that trash pickup was on Thursdays and to let her know if we didn't have a garbage can or recycling bin. I had a butterfly flutter in my tummy when I thought about having our garbage picked up at the curb. I was excited when I realized we got our own garbage can. It seriously must be the little things.

After quite the year, we are hoping that everything ends on a positive note with Finnegan and our new home. As Finn's pediatrician said, "You can't have any worse luck than you already have." ;)

Friday, November 9, 2012

Happy Homecoming!

Thank you for all the prayers. Finnegan's surgery took about half the amount of time they allotted him for. He had a Ventriculo-Peritoneal Shunt (VP Shunt) inserted at about 11:10am on Thursday. At 11:50am, Ian called me at school to tell me the surgery was over. He has three incisions, all on his right side. His surgery was a little different than the picture shown below because Finnegan had two pockets of fluid pooling, one i his ventricle and one outside of the brain. This required the surgeons to add what is called a Y connector to the shunt. Let's break it down: Both incisions are about an inch away from his ear. The first is right behind his hairline and holds the valve and tube that goes to his brain in place (just as you see below). This tube drains the ventricles and goes through the valve. The Y connector is attached with the incision at the back of his head, and that connector allows for the draining of the extra axial fluid, bypassing the valve and joining the final tube that goes down to his belly. The last incision is to the right of his belly button right at his diaperline. This is a picture of the typical VP Shunt, but Finnegan's looks a little bit different. They were alternative giving him Tylenol, Motrin, and Tylenol 3 to help with the pain, but he was down to just Tylenol by Friday.

Illustration of a shunt system

Finnegan after his surgery.

It's going to take a couple weeks for his eye motion to go more back to normal. He's still looking down a lot and arching his neck so he can see a little bit more, but Ian has found that if we touch his nose or cover his eyes a bit he "resets" and looks back to even. Ian calls it his "reset" button. :) It is definitely possible that he won't ever be able to look up. He hadn't looked up since before this whole ordeal, but as the days go on he is slowly improving.

Cousin Kaylin likes pie! :)

Friday was my last day of my 9 week maternity leave gig. After the last three weeks of commuting to and from Peoria after school, I was ready for a break. Aunt Jenny and Cousin Kaylin came to visit again, and Finnegan spent his last night in the hospital. Aunt Jenny, Kaylin,

It felt like forever to get him discharged. The doctors came in to round and ordered his discharge. Finnegan just hung out, while daddy paced the room and hallway after taking a couple trips to pack the car. Hours later, everything came through and Finnegan was ready to go home. I gave the stinky boy a "bath" while we waited. Hours later, everything was in order, and Finnegan was ready to go home. Before packing him in his car seat, we stopped on the 3rd floor to say goodbye to his girlfriend Brittany in the NICU. We also got to see a couple of his former NICU nurses as well. Finn gave Brittany some happy birthday snuggles, and we put our little guy in his car seat for the first time in 3 weeks. I know it seems silly, but that was quite a moment. It was even stronger when we got to finally drive out of that parking garage with our little dude grunting and squeaking in the back seat. I must have driven out of that parking garage over 30 times in the past 3 weeks, and each time I left with an empty heart and an empty back seat. Ian and I both smiled and took a big breath in and out when we drove out and Finnegan was making his cute little noises.

On the way home I tried to program into my phone all of his doctor's phone numbers and organized all of his appointments into our family calendar. Since I knew there were a lot of things I needed to do for him, I wanted to have all my ducks in a row come Monday. I knew I had to schedule his EEG, schedule an appointment with his pediatrician, and schedule his re-evaluation with Early Intervention (physical and developmental therapy).

My boys :)
He did well at home over the weekend. We gave him Tylenol to help with his pain and over the week the amount of Tylenol he has needed has gone down, so we know he is healing up rather well! We put him back in our room (he had been sleeping in his crib for a couple nights prior to his hospital stay) for the night and he slept like a champ. We lucked out with medications, since I was sure he would be on a lot more: he takes phenobarbytol and Keppra 2 times a day. He's quite a pro at taking those meds, although we have had a couple instances where the Tylenol went in and the Tylenol went right back out.
I was very concerned that he wasn't eating as much and when he would eat he would get very frustrated. The speech/feeding therapist at the hospital wanted to keep Finn on a slow-flow nipple for his bottles because he had to relearn how to suck, swallow, and breathe in order to eat. As he would get hungrier, he would get more frustrated because nothing was coming out fast enough. To feed him 4 ounces, it took around 40 minutes. Since Early Intervention is having trouble tracking down a speech/feeding therapist for Finn and we didn't know when he'd see one, Ian and I decided to try Finn on the medium-flow nipple to see what he would do. We pay close attention to his breathing and the sounds he makes to ensure that he's not aspirating (or taking milk into the lungs). He's been doing so well with his "regular" bottles. We've even been able to get him back to eating 5 ounces of formula (what he was eating prior to his hospital stay).

With all of Finnegan's appointments and preparing to close on our first home next week, this week was definitely busy. I was so thankful to have this break in between subbing assignments to help get Finn's strength back and to take him to all of the many appointments he has. At the end of the month he'll go in for another EEG and another MRI the beginning of next month. But, this is what this week looked like:

Monday: Finnegan had an early appointment with his pediatrician. He weighs 12 pounds even which is still under the weight he was before going into the hospital. Otherwise, his incisions look good and he should be set to get his 6 month vaccinations next week. Based on the immunological tests Dr. Gray did before Finnegan's discharge, Finnegan is producing all antibodies, but not enough. Depending on how another blood draw after his next vaccinations go, Finnegan may be given extra vaccinations and then referred to an immunologist in Chicago to help identify why his antibodies were so low (whether it's a hereditary condition or due to his prematurity). Afterwards, we waited for about an hour to get Finn's blood drawn for his bi-weekly CBCs. Finnegan and I then spent the majority of the afternoon making phone calls and attempting to reorganize our lives. Finnegan decided to surprise us this week with a new trend...complete crankiness at around 3pm until around bedtime. There are little intermittent naps throughout, but nothing substantial. Our poor little pumpkin has just been through so much. I went back to tutoring this week (Tuesday-Thursday), so Ian got to deal with the majority of the Finnegan Irish Temper.

Tuesday Finnegan and I voted and ran around to do errands to get all of the paperwork in order for the bank so we can close on our first home next week! We're quite overwhelmed and it feels extremely surreal, but we are so anxious to begin that next chapter in our lives!
Finnegan screamed from the minute we walked into the polling place..
I'm trying not to think too much into it. :)

Our home as long as the closing goes well! :)

Wednesday Finnegan had an appointment at the pediatric urologist. Prior to his hospital stay, his pediatrician noticed a possible hydroceleDuring normal development, the testicles descend down a tube from the abdomen into the scrotum. Hydroceles occur when this tube does not close. Fluid drains from the abdomen through the open tube. The hydrocele becomes a problem with the fluid gets trapped in the scrotum ( Finnegan simply has fluid that moves from his abdomen to scrotum freely. The urologist said he doesn't want to rush into surgery with him (mostly because he doesn't need it now), but as he starts becoming more active, it is possible for the fluid to build up in the scrotum and become trapped. This causes the scrotum to swell and then develops a need for surgery. Since he is still rather immobile, the possibilities of him straining and blocking the canal is very minimal. We will come back in 3 months for another check-up and were told all the warning signs to look for in case the unlikely happened.

Yup, it's all back to normal!
From there, we ran a couple more house errands before coming home and hanging out with Grandma Doman for a couple of hours. Finnegan soaked up the grandma love and grandma soaked up the Finnegan smiles. That evening Finnegan's Physical Therapist came to reevaluate him, but Finnegan was not being very cooperative. She decided to come back Thursday morning so she could get a better assessment of Finnegan's range of motion.

We started out Thursday morning with Physical Therapy. His PT said that Finnegan is most likely so reluctant to work with her because he had been messed around with by so many strangers for the past week, he was weary of anyone that he could not recognized. The more I thought about it, the more it made sense. Even though we're not 100% sure how much Finnegan can hear or how well he can interpret what he sees, he knows who his mommy and daddy are and when a "stranger" is messing with him, he calms as soon as mommy and daddy are there (as long as he's still not totally in pain or pissed). So, for the remainder of his PT assessment, I held him while she worked on his range of motion in his arms and legs. Next week his other therapists will come to discuss their plans for Finnegan. The PT already said she will recommend weekly visits to work with him on building strength in his joints (specifically in ankles, wrists, and hips) and building more muscles (specifically in neck and arms). She mentioned that he was behind for a 3 month old (corrected age) in physical development (not being able to hold himself up or pick head up), but he is bringing his hands together and clasping them, which is a developmental milestone. The PT suggested that as he heals from his shunt surgery and the fluid equalizes, his head won't be so heavy.

After PT, Finnegan helped mommy apply for jobs, and then we made our way to Finnegan's eye doctor appointment. It's always reassuring when you walk into the doctor's office and the nurse/receptionist says, "Are you sure you're supposed to be seeing Dr. So-and-so today?" Apparently, his appointment was scheduled, but no one seemed to know why he was there or have any of the background information about why the appointment was made. So, after waiting for over 30 minutes with a very active little boy in a waiting room full of people, we got to see the doctor. He even said he wasn't sure why they sent him there because it seemed as if all the problems with Finnegan's vision reside in the brain as his eyes all look perfectly healthy. I told the doctor I would rather like to know that his eyes are healthy than just assume it's in the brain, and he did he version of an exam to test for attentiveness to light. Bluntly put, Finnegan didn't pass. When the light was shined in Finn's eyes, his pupils contracted (well, kind of because his eyes were dilated), but he did not flinch or otherwise scrunch his eyes like most people do when light is shone directly into the eye. Moreover, when the light was moved side to side, Finnegan did not follow it or see to recognize that it was there. The eye doctor was the same one he had seen in the NICU, so he knew Finnegan, and felt bad that he couldn't give better answers or any answers. Finnegan sees his neurologist next month, so hopefully we can learn more then.

Afterwards, we went home and waited for the Home Healthcare nurse to come to administer Finnegan's first dose of Synagis (medication used to prevent RSV). He was approved for 5 doses of this monthly shot. It is quite an involved process which includes getting an accurate weight (he was up to 12.25 pounds), taking vitals before administering the shot, waiting 20 minutes, and then rechecking vitals. Finnegan is usually a champ when it comes to getting shots. He cries, but then seems to come right out of it. This shot was heartbreaking. Apparently the medication burns as it is injected. Finnegan screamed for 5 minutes. Everything I tried (hugging, bouncing, snuggling, pacifier, bottle, swaddle) didn't work. Little tears were streaming out of his eyes. I barely could hold it together. After everything this little guy has gone through, the one shot that will really help him from getting another life-threatening illness causes him so much pain. It's more than worth it if it means Finnegan stays healthy, but it was hard.

Today, Finnegan and I go for his second blood draw, clean up a doggy mess (yay carpet cleaning!) and getting ready for Grandma and Grandpa Bruckner to come over for dinner and snuggles. Let's just hope Finnegan's Temper doesn't sneak up before I have a chance to get everything else done! ;)

Thursday, November 1, 2012

Going for surgery

Finnegan goes in for surgery this morning. He'll have a shunt placed to drain fluid from his brain's ventricles as well as pockets of extra axial fluid sitting on top of the brain. As far as brain surgeries go, this one is pretty low on the complicated scale. It's comforting to know that others have had this same thing done, multiple times, and are all doing well.

I felt a strange sense of calm driving into Peoria this morning. The sky was dark, but the moon was shining through the light and fluffy clouds that looked like a warm soft blanket God was wrapping Finnegan in to keep him safe and comfortable before, during, and after his surgery.

This surgery, and his recovery afterwards, should wrap up all of Finnegan's hospitalization needs caused by the meningitis. He should come home sometime this weekend or Monday depending on how his recovery goes. Once home, Finnegan will have a large entourage of early intervention specialists and practiced s
pecialist doctors to follow and help him grow as the physically and mentally strong courageous Finnegan we all know him to be. Christine and I will continue to post updates as time flies by on the blog ( so you can follow his next chapter... the one that, God willing, will not include mention of hospitalization.

Thank you for your prayers as we wrap up this unexpected chapter in all of our lives.

May God bless and keep Finnegan safe and be with him during and after surgery; bless his surgeons, O.R. staff, and followup caregivers, guiding their actions for the best possible outcome; and give comfort and blessings to everyone thinking of and praying for Finn. Amen.

Saints Mary, Joseph, Nicholas, Francis, Patrick, Vitus, Luke, Expedite, Hernandez, Michael & Raphael the Archangels, Agatha, Camillus, Cosmos & Damian, and Infant of Prague, pray for us.

Guardian Angel of Finnegan Michael Bruckner, pray for him.