Duke Trip

Today we traveled the 2.5hrs to Duke to meet with a new neurosurgeon. We have been searching for a local surgeon who would be willing to work with Dr. Warf in Boston.

We heard from the surgeon on Wednesday that our case file had been reviewed and that she would like to order the MRI (exactly as Dr. Warf recommended), but needed to see us in the office first. We weren't expecting to get much news as this appointment was more or less a formality to ensure that our insurance would cover the MRI the surgeon wanted to order.

It was a great appointment (well, except for the fact that our little guy has developed a tremendous phobia to white coats, paper covered exam tables and strangers, but can you blame him?). We LOVED, loved, loved the new surgeon. She was so kind and compassionate and spent so much time reviewing Pierce's case (including the time she and her nurse practioner spent reviewing his 142+ pg summarized chart).

She agreed with Dr. Warf that we need a detailed MRI before we determine what/if any surgical intervention is needed. You may remember that the only scans Pierce has ever have had been quick CT and rapid MRIs, meaning the picture quality isn't the best (think how hard it is to capture a non-sedated toddler on camera and you'll get the idea of why we haven't gotten a clear shot). And so, she has ordered the MRI to be done at Duke in the few weeks. We should have an appointment date soon. While I'm definitely nervous about Pierce being placed back on the ventilator for the MRI, I know this will be best for him and it's our next step to determine what's best for him.

The best part of the appointment was that this surgeon has no problem coordinating and working with Dr. Warf in Boston. She even stated that she'd fully support us going to Boston for the surgery and that she'd have no problem managing Pierce's care locally. Can I tell you how happy that made us?! To know that we finally have two surgeons, in agreement, like minded and willing to work together... nothing short of miraculous!

Thank you all for your prayers. Here's how you can pray for us in these upcoming weeks:
1. Pray that Pierce does not become symptomatic. Today the surgeon stressed to us how serious and emergent the symptoms could be if Pierce did start to be troubled by the fourth ventricle swelling. Let's just say they made the typical shunt failure symptoms (nausea, vomiting, headache) seem like a walk in the park. It's never easy to hear that your child could stop breathing or lose the ability to swallow and choke.... I'll be so glad when this isn't hanging over our head! So please, please pray that we never experience symptoms!
2. Pray that Pierce would tolerate the general anesthesia and the ventilator and that he would have no problem coming off. (I'm sure all my friends whose kids spent prolonged time on the ventilator will understand my nerves on that one!)
3. Finally, pray that the MRI would show that Pierce is a good candidate for the ETV procedure and that he would be able to have his shunt removed. This would be incredible as it would mean a life of shunt independence and one less lasting remnant of his extreme prematurity.

Thank you for continuing to pray for us and for continuing to follow us on this journey!
L

Neuro Update pt.3

We're back from our appointment with Pierce's neurosurgeon. Unfortunately we were still given the choice of choosing between 2 options, and even now have a 3rd option. (This doesn't make things easier when trying to decide.)

Pierce's surgeon feels like we could try the aqueductoplasty and ETV procedure (endoscopic), but we'd first have to turn up his shunt and cause his ventricles to swell. He thinks it's a long shot, but could have the most benefit in the long run if it works, because it would make Pierce shunt independent. However, this procedure is far more complicated and riskier to Pierce. The main risk is that he'd have paralysis in his eye, though the doctor could not tell me how big of a risk that is because they don't usually treat kids this way. The other risks are the fact that we'd be inducing hydrocephalus again (by turning his shunt up) and there's no way to predict how Pierce would handle this (it could cause extreme headaches, vomiting and intracranial pressure).

Of course, option 2 is to place another shunt. The surgery itself would be easy and straightforward, but long term, it almost guarantees more surgeries for Pierce. Having a complicated shunt system is not ideal and carries with it long term risks of infections (meningitis), and shunt malfunction.

We told Pierce's surgeon we were seeking Dr. Warf's opinion and he was open to hearing his input.

At this point, we will wait to do anything until we've had our consultation with Dr. Warf from Boston Children's Hospital. We really feel like this is the next step for us as neither doctor here can offer us a solution we feel comfortable with.

Fortunately, Pierce's fourth ventricle has not swollen significantly in the past 7 months. It's very enlarged and has always been, but does not seem to be rapidly increasing in size. This means that time is likely on our side. No one can say for sure when or even if Pierce will ever become symptomatic and this makes developing a treatment plan more difficult.

That brings me to the third option: do nothing. Because Pierce isn't symptomatic, we could wait and see if he ever becomes symptomatic before treating him. While Pierce does have balance problems, it's hard to say whether or not they're a result of his earlier brain bleed or from this new problem. The surgeon today said he does feel like this needs to be treated at some point, but it is not urgent. We are just thankful we have more time to search for the best option for Pierce.

We trust that God has led us to Dr. Warf for his opinion and are hoping that he will be able to bring more clarity and wisdom to this situation. Our consultation (via telemedicine) will be on Wednesday, January 16th. Please continue praying that both the surgeons involved and us would have wisdom and guidance on the best solution for Pierce.

Also, while you're praying for Pierce, would you please pray for our friend Bella? Bella is a former 24 weeker who had a bleed almost identical to Pierce's. She was treated with the ETV instead of a shunt and is going tomorrow for a MRI as they think her ETV has failed. She has surgery scheduled for this Thursday and until they see the MRI, they won't know for sure what surgery she will be having-- shunt placement or ETV. Please pray for her and for her family as this is a scary time for them. Her mom, Becky has been such a dear friend and we've spent many hours on Skype swapping stories/experiences/tears.

Many thanks for your continued prayers!

Neuro update pt.2

Not a whole lot to update tonight as we are on the eve on our appointment, but I wanted to update you on a couple of things.

#1. Tomorrow at 215 pm we will meet with Pierce's neurosurgeon to discuss what course of treatment he recommends considering his initial recommendation was completely different than the second surgeon's opinion. Please pray for clarity and wisdom for us and for the surgeons involved.

#2. Because of the differing of opinions and the complexity of Pierce's case, we have decided to seek an opinion outside of Charlotte. We are hoping to have a teleconference (via the internet) with Dr.Warf from Boston Children's Hospital on January 16th. Dr. Warf pioneered the technique that the second surgeon wanted to attempt on Pierce. Because of his vast experience (he's known as the world's leading specialist in treating pediatric hydrocephalus), we've decided we can't go wrong with a consult from him. Please also pray that he would have wisdom as he reviews Pierce's case.

We so appreciate your prayers during this difficult decision making time. We see how the Lord is working and leading us and hope to share one day the many things that are transpiring throughout this time. Just know that we so appreciate the support and love you are all showing and we are so humbled by how many care for us and our boy.

With love,
The Franks Family

Neuro update pt.1

Today we had our first big neuro appointment. This time, we met with a new surgeon (same practice).

Here's the basic rundown (I'll omit the neuro babble that 98% of our readers wouldn't care to know anyways):
1. We have 2 options:
    a) We can go with the traditional shunting approach that Pierce's current surgeon has already recommended. This would mean that they would place a second shunt cathether into Pierce's fourth ventricle and convert his shunt into a Y-connection. The surgeon today said that this is the conventional method for treating a trapped fourth ventricle and that 80% of neurosurgeons would want to treat Pierce in this regard. However, shunting carries with it a 40-50% chance of failure and infections, malfunctions. Fourth ventricle shunts are notorious problem makers.
   b) We can go with a more aggressive, endoscopic procedure that has a chance (about 50% by his calculation) of allowing Pierce to live independent of a shunt. This procedure carries more risks during the actual surgery as it is far more complicated and complex. But in the long run, the risks to Pierce are significantly decreased because he will no longer be shunt dependent.

2. The basic summary from today was that although we have 2 options, neither one is a sure fix. Both surgeons are recommending different treatments, but both agree that something must be done to treat this. The fourth ventricle shunt has a high chance of shunt failure within the first year. The endoscopic procedure carries more risks for Pierce (chance of damage to certain parts of the brain during surgery) and only has about a 50% chance of working, meaning Pierce would then have to have a shunt placed. But long term, the endoscopic procedure, if it works, could provide Pierce with the best quality of life (no shunt revisions, infections, etc.). With either procedure, Pierce has about a 50% chance of needing another brain surgery within the first year. In the surgeon's words, "it's really just a coin toss." Thank goodness we know that our God is Sovereign.

Perhaps the best part of today's appointment was the fact that the two surgeons are going to have a conference meeting to discuss and plan what would be best for Pierce. They are both recommending something different at this point, and that is very difficult.

We would really, really appreciate your continued prayers as this is not an easy situation for us. How do you decide between two brilliant neurosurgeons? How do you know when to seek a third opinion?

We go back on Tuesday to meet with the surgeon and hear what they've come up with in terms of a plan. Please, please pray that God grants both men wisdom as they review Pierce's case. Pray that God gives Nik and I wisdom as we ultimately have to decide which approach to go with.

Most importantly, I'd like to pray, and ask all of you to pray, that God would supernaturally intervene and heal Pierce's brain and that no surgery would be needed. I know it's a bold prayer to pray, but I strongly believe that we should ask, knowing that whatever the outcome, God is at work to make all things work together for ours and Pierce's good. This, after all won't be the first bold prayer we've prayed over Pierce :)

Thank you for the many prayers you've already said. Please continue and ask others to join us in praying for Pierce.

Pierce was happy to leave the neuro office today.  The combination of strangers, tables with white paper, and white coats made him a hot mess! Lets just say he screamed every time the neurosurgeon even glanced his way.

With love,
The Franks Family

Quick update and how you can pray

First of all, thank you so much for the sweet messages, fb posts, and phone calls we've received. It is so encouraging to know that there are so many of you walking this journey with us! Secondly, we wanted to give everyone a quick update.

Unfortunately we don't know much more than we did on Friday.
Here's what we do know:
1) Pierce's fourth ventricle is trapped and has grown in size since the last scan. Fourth ventricle entrapment is rare, but does occur in 3-4% of shunt cases. The fourth ventricle sits deep in the middle of the brain, just over the brain stem.
2) Pierce's doctor has reviewed the scan and would like to place a second shunt catheter into this ventricle to drain the fluid.
3) Unless Pierce's condition worsens (he's asymptomatic now), we will go in on January 8th for a pre-op appointment to discuss the surgery
4) We have decided to seek a second opinion as this shunt surgery is more involved than the first (because of the position of the ventricle). Fortunately, we are at a large and highly regarded neurosurgery practice and have been blessed to be surrounded by brilliant surgeons 


Here's how you can pray:
1) That God will give Pierce's neurosurgeon wisdom as he reviews Pierce's scan and decides the best course for surgery.
2) Pray also for wisdom for the other neurosurgeon we've requested a second opinion from. He comes highly regarded and is notorious for being more aggressive with surgeries in hopes to avoid shunts. We are hoping that Pierce will be a candidate for a newer, more advanced procedure that would allow him to avoid a second shunt catheter.
3) For Pierce to remain free of symptoms giving us more time to sort through our options.
4) Finally, for peace and wisdom for Nik and I. The neurosurgery world is full of gray areas and we've learned that quickly. Pray for wisdom and clarity as we seek the best option for Pierce.

Thank you so much for your continued prayers for us!

unexpected news...

Today we took Pierce for a rapid-series MRI to check on the status of his shunt. Nik went through the MRI with Pierce and said it was so pitiful because it was so loud and Pierce was terrified of the sounds. But we're so proud of our brave boy who laid still with Dadddy while they got the pictures they needed.

We really felt confident that things were going well- no infections, no symptoms to point to a malfunction and his head growth has been tracking normally.

So we were taken back by the unexpected results: 4th ventricle enlargement. This basically means (and we're still processing it all, so I may not get this right) that Pierce's fourth ventricle, the one that sits deep in the brain, is not draining properly and that it has become trapped. 4th ventricle enlargement can affect balance and coordination, which may explain some of the reason why Pierce has had a hard time getting coordinated in his motor skills (though we'll never really know if it's related to this or just his extreme prematurity).

What this also means is that we're likely headed in for round 3 in brain surgery. Pierce's neurosurgeon is out on vacation this week (go figure) so we will have to wait until next week to see what his recommendations are, but we were told that these results most likely mean surgery in the near future.

While we are so saddened by the thought of our boy enduring yet another surgery, we are trusting in God's plan and know that He is still at work.

Would you please pray for us to have peace during this time? Also pray that Pierce would not become symptomatic during this waiting period.

One more note: last week I (Lindsay) had the opportunity of sitting down with Eric from New Life 91.9's morning show to share our story. Our segment will air tomorrow morning shortly after 7am. If you're out of town, you can listen online by going to their website: http://www.christiannetcast.com/listen/player.asp?station=wrcm-fm

Thank you for walking this journey with us. We are so grateful for all of you.

Love, Nik, Lindsay and Pierce