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

VP Shunt Surgery

Pierce is resting well and recovering from his surgery. Things went very well. The good news is that Pierce was able to come off the vent shortly after surgery (before we were even able to see him). He did (for the first few hours after surgery) have a significant amount of bradys/desats (heart rate and o2 saturation drops), which caused him to turn blue. That's never fun to witness. BUT, general consensus says it was due to the anesthesia and pain meds that they pumped in to him. Just to be safe, Pierce is spending the night in the Pediatric ICU. Depending on how well he does tonight, he may be able to go home tomorrow.

On a fun note, we've had a bit of a mini-NICU reunion, with lots of old friends. P was able to see some of his favorite nurses, nurse practioners and doctors- all of whom came to visit him as soon as they heard he was here. We feel so blessed to call this amazing team "friends" and are forever grateful for how well they cared for Pierce while he was in the NICU.

Please continue to pray that P will be comfortable and rest easy. His blood pressure has been elevated all day and they're thinking that may be due to pain. Pray that this subsides and that everything will be on "go" tomorrow as we hope to get discharged. Also pray for continued healing and protection against any infection.

Thank you all for your continued support. It means so much.

Love,
The Franks

Surgery is Over

Lindsay, Pierce's nurse, and Dr. Peeler just came in and told us that Pierce's surgery was over and he did perfect. All his stats remained steady the whole time. Now just continue to pray for a recovery that surpasses all of our expectations.

We listened to this song by Shane and Shane while Pierce was being operated on. (There are a couple of errors on the lyrics in the video, but you will catch on :))

He is the radiance of the glory of God and the exact imprint of his nature, and he upholds the universe by the word of his power (Hebrews 1:3)


\



Grace and peace,



Nik, Lindsay, and Pierce

surgery scheduled to take place at 2 today

We just learned that the PDA ligation surgery will occur at 2 today. Please, please pray that Pierce does well and that his recovery is much easier than we are preparing for. Also pray for Dr. Peeler, the cardio surgeon who will be performing the surgery. And for Dr. Keuser, the neonatologist who will be taking over after the surgery.

Pierce is doing well this morning and we praise God that He has granted Pierce three good days while we've waited for this surgery to occur.

Much Love,
Lindsay, Nik and Pierce

Gearing Up for Surgery

Here is a little pic of Pierce resting in his favorite position. (He wears the Kango cap strictly for aesthetics)

This is a name tag that we think was made by one of Pierce's, Rebecca. She denies having anything to do with it, but we highly doubt that :). She takes really good care of Pierce.

As many of you know, today Pierce is having surgery to close his PDA. We have a peace and a strong confidence that the doctors made the right decision. We spoke with someone who has worked in the NICU and she told us that when she was pregnant, she told her family that if she were to have a pre-term baby, she would not let the doctors give indomethacin to close the PDA. She has seen many things go wrong with the use of that drug. So needless to say, we are glad to be escaping such a controversial treatment. And we took this as another confidence booster that surgery is the best route today.

Again, we have a peace about today and we ask that you continue to pray for Pierce today. The surgery is to take place sometime between 1:30-3:00. Dr. Ben Peeler will be performing it. Pray that the surgery goes flawlessly, that Pierce's lungs incur no damage, and that Pierce will easily recover from this. The next couple of days will probably be pressing for us as Pierce will likely get worse before he gets better. He doesn't have to, but chances are he will. Pray on our behalf for endurance and continued peace and confidence in the Lord.

Some pre-surgery thoughts:

The steadfast love of the LORD never ceases; his mercies never come to an end. (Lamentations 3:22)

With the Father "there is no variation or shadow due to change." (James 1:17)

I have set the LORD always before me; because he is at my right hand, I shall not be shaken. (Psalm 16:8)

And we know that for those who love God all things work together for good, for those who are called according to his purpose. (Romans 8:28)

He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? (Romans 8:32)

No, in all these things we are more than conquerors through him who loved us.
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:37-39)

But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind. For that person must not suppose that he will receive anything from the Lord.(James 1:6-7)

In my distress I called upon the LORD; to my God I cried for help. From his temple he heard my voice, and my cry to him reached his ears. (Psalm 18:6)

Now may the God of peace himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ.
He who calls you is faithful; he will surely do it. (1 Thessalonians 5:23-24)

Grace and Peace,



Nik, Lindsay, and Pierce

PDA surgery

Nik and I were unable to meet with the surgeon today, so we will meet with him before the surgery. God has granted us peace that this is the right decision for Pierce. We know we have to do this in order for our little guy to get better. Pray for Dr.Peeler (the surgeon), pray for the entire medical team, pray for Pierce and of course, for us. At this point, all we know is that the surgery will take place sometime between 1-3pm and that it the actual procedure will likely take 30 minutes or less. We have been told to expect Pierce to get sicker before he gets better. We are praying and trusting God that this He will sustain Pierce and that He will see him through this hurdle. We are also praying for an easier recovery than expected. We will keep you guys updated as soon as we know more.

Much love,
Lindsay, Nik and Pierce

Next hurdle: the PDA

Nik and I were able to stay home last night(yeah!) as Pierce had a great night/morning. We were called in today to meet with the Dr to discuss what we should do about the PDA (open duct near his heart/lungs). Here is the report: the Drs. had hoped to be able to administer a medicine to close the PDA, but Pierce has not proven to be a candidate. At this point in the game, they feel it's best to do something as opposed to just leaving it open. In more or less words, they need to act in order for him to get better. That being said, our only option is PDA surgery. We are waiting to go in and meet with the pediatric cardiothoracic surgeon (we are so thankful to be at a hospital that offers such highly trained, specialized doctors) and will let you all know what he says. We know at this point that Pierce's surgery will be sometime tomorrow, that it will take about 30 minutes (the actual surgery) and that it is likely to cause him to get sicker (it's kind of like a catch-22...he has to get sicker in order to get better and that there is a long list of risks involved (including death). It's hard to make this decision when he is seemingly stable... kind of like a "why rock the boat?" mentality, but we are trusting that God is guiding the doctors and that this is the best choice for our son. Please be in prayer as we meet with the surgeon. Both Nik and I have a peace that this is the best option and we are trusting that God will continue to sustain Pierce's life. Pray that Pierce will not develop an infection (main risk in the surgery) and that his immature lungs will be able to tolerate this procedure. We will be updating later tonight as we know more details.

As we met with Dr.Keuser today (same Dr. who woke us up on day 4 when Pierce's potassium levels were so high), he did mention that most 23-weekers die within the first week and that perhaps "God has a bigger plan for Pierce's life." We know that this is true as we have seen His hand demonstrated throughout these last 12 days. While the doctor was very quick to inform us that Pierce is by no means "out of the woods," we are rejoicing in how far He has carried us and trusting that He will bring our son through these trials and raise him up to be a healthy, strong man one day.

Love,
Lindsay, Nik and Pierce