The Bruckners: 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!