CT/Shunt/Therapy plans

For the last few days, they have had Judah’s Intra Cranial Pressure (ICP) drain clamped to see if he can naturally drain/absorb it. We all thought he was because his ICP’s were reading so low and he was doing so well. At 4 am they took Judah down for a CT to ck on swelling and drainage of his spinal fluid from the brain in hopes of taking the ICP drain out. However, they found that I stead of draining it was actually just forcing its way out of the surgery wound into the area between the skin and skull. So he wasn’t managing his fluid. His fluid had just found an easier way out of the brain.
So tomorrow morning, if all goes well scheduling wise, they will put in a permanent shunt that will drain fluid from the brain to his belly internally. The surgery should only take an 1-2hrs and is minimal in risk. The Dr said it shouldn’t set him back any but instead give him the freedom to move around more and dive into PT/OT for quicker recovery.
We were at first sad about the prospect of another surgery but agreed that we need to move past this drainage issue and onto the talking/walking/treating the rest of the tumor issue. This affords us that.
We would appreciate continued prayers for Judah, surgery, recovery, us, and just being separated as a family. We miss Judah and Camilla Kate together.

Judah is going to need very intensive physical/occupational/speech therapy to fully recover and the logistics of that are complicated. Most of the Drs here think he needs inpatient therapy for 3-5 weeks but there is no inpatient therapy center in all of Tennessee that takes kids his age, the closest is Atlanta. One of the Drs thinks he can work something out here at Vanderbilt to get Judah outpatient therapy but in an intensive way – say 3 or more hours a day 6 days a week.
Being able to do therapy here would be much better for us as a family so we’re asking for specific prayers for God to open doors and make the therapy choices very clear and easy.
Thanks for all the encouraging words and prayers!

The surgery to put the shunt in will be tomorrow morning at 7:30am. Should be about an hour and a half and he’ll be intubated again but the tube will come out when the surgery is over. The process used to route the shunt to his belly will be pretty painful for Judah when he wakes up and he’ll have a total of 5 or 6 incisions (including the ones he already has) and every incision is an infection risk. So please pray for a flawless surgery, minimal pain and no infections!

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visits and progress

Judah has been working so very hard today. He sat up in bed, smiled and laughed while watching Brave, squished play-doh, sort of finger painted (he hates to have dirty hands), and then made Daddy and me feel like the funniest people in the world laughing and smiling while sitting in the rocking chair all by himself. The thing I noticed that was different about today vs yesterday is that when he was done working, he didn’t freak out. He didn’t flail and yell, he whined and then we put him in his bed and after some questions to figure out what he wanted, took a rest. Our Great God is providing comfort to our sweet frustrated little boy!
We had a ton of out of town visitors and Judah responded well to all of them. Thank you for making the drive to love on us and our boy.

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smiles and giggles make hearts full

And our God, merciful and playful has returned Judah his laugh. He is hearing our prayers and answering for His glory and our joy!
We put one of his favorite movies on and he started smiling. Then a few minutes later, laughing. Just now he sat off the bed and folded himself in half then laid back down. He’s thoroughly enjoying himself!!!

After a wonderful 3 hrs with smiling and laughing and even some words Judah crashed into an angry depression. We think he may have exhausted himself but after 2 hrs of only grunting and flailing we backed off and let him be. It is so hard to see him make such progress one minute, and then the next, backslide. He was again frustrated and cried in anger.
We prayed for Jehovah Jireh to provide patience and comfort to Judah and to us and then prayed our same prayer for supernatural healing of his vocal chords, swallowing system, tongue, mouth, and that connection between what he knows and how to say it. Please continue to pray with us and for us.
We are so grateful for the glimpse at our little boy and thank God for it. We want more!!!!

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Praise be to our Jehovah Rapha! We prayed for supernatural healing and He has come to our aid. Judah was, yesterday, unable to swallow or keep saliva in his mouth and today he is not only swallowing but in total control of his spot. No drooling!

Keep the prayers for supernatural healing of:
-voice box
-connection from cognitive to mouth (speaking what he knows)

Our God is mighty and has a glorious work to complete in Judah. He has carried us a giant step in the right direction. Keep praying for miraculous, quick and unexplainable healing.

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Judah goes for a ride

Tonight our amazing nurse took us for a ride to a room made of windows. I don’t think Judah has seen the sky or trees in 2 wks and I was thrilled for him. I started talking about what we could see and then I asked him to pick something and try to say it.
I may have pushed him too hard after hearing him say Momma because he got really frustrated and started crying. And then I started crying. I hate this so much and this evening, I realized, this is probably harder on him than us. The little boy who could pronounce anything after hearing it once can’t say “tree”. And he shapes the words but just can’t figure it out. I asked God through mine and my sons tears, “What are you waiting for?” He has shown up consistently and carried us. And for some reason, that doesn’t feel like enough. We want a miracle!
Mumzy is staying with Judah tonight but before I left I prayed with him asking for our Jehovah Rapha, The Lord who heals, to supernaturally reach down and touch Judah’s vocal chords and mouth and tongue and swallowing system and heal them. That we know that all it takes is HIS touch, and Judah will be healed. And we know that our Jehovah Jireh, The Lord who provides, will provide us with the endurance, strength and patience we will need until we see God’s glory met through Judah’s supernatural healing.

Please join us in praying for supernatural healing of Judah’s:
-vocal chords
-swallowing mechanism
-tongue and mouth function
-frustration in not being able to do what he knows he should be able to

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real sleep please!

The PICU team decided to stop doing hourly cks 24/7 so for the first time in 2wks Judah will get to sleep for 4hrs straight! They did a ck at 8, he fell asleep around 8:30 and has been asleep solidly since. They will wake him at midnight for a brief neuro ck and give him more Tylenol and then he’ll get to sleep another 4 hrs in a row. I think this unsedated, natural sleep is what he really needs.

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to extubate or not to extubate…

The following is a collection of updates on the day the Drs were attempting to extubate Judah:

The plan is to extubate Judah tomorrow morning so they will lower the amount of work the ventilator is doing tonight. We ask for prayers that Judah picks up the slack and proves he’ll breathe on his own tonight and be ready to fully take over his breathing tomorrow morning.

So last night they lowered Judah’s vent and while the air was still assisting, he did wonderfully. When they switched him to the CPAP to see if he would initiate breathing, he didn’t. They said he just wasn’t breathing often enough. So for the time being, they will NOT be extubating him.

We’re doing another CPAP trial for about an hour then we’ll let him rest. Basically the CPAP means that the ventilator doesn’t start any breaths for him. Once he initiates a breath the machine will push a little because it’s hard to suck enough air down the tube but other than that his breathing is up to him. He’s doing a pretty good job. The doctors sat and watched him for a bit to get a feel for how he breathes. To us, it looked pretty normal for Judah. He doesn’t breathe steadily like most kids. He takes huge, infrequent breaths, so big that the machine keeps wigging out because it thinks it must be attached to and adult rather than a little kid. The more alert he is the more regular he breathes so we think that once they kill the sedation he’ll go back to his normal breathing pattern, which isn’t normal for anyone else but it has always kept his O2/CO2 balance in a pretty good place.
Keep praying that he’ll work hard to breathe and that he will be able to support his airway properly once they extubate.
Thanks everyone for your continued prayers!
This CPAP trial Judah got a passing grade! His breathing is unusual for sure but he did what he needed to do to keep his oxygen level up. The more alert he is the more regular his pattern. We have faith that once we get off the sedation completely, and extubate him, he’ll breathe more normally.
It’s official! Judah is extubated!!!!! He’s doing great and resting. Thank you for all the prayers. Keep praying he continues to do well.
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Letting him be and his sweet spirit

Last night they moved the tube that keeps Judah’s tummy empty (so he doesn’t throw up) from his mouth to his nose and added a feeding tube to the other nostril. This gave him a little more room in his mouth but I’m sure it’s still frustrating having all those hoses going down his throat.
This morning he’s very alert, answering yes or no questions, wriggling around, and getting comfortable. He even managed to get into one of his “resting poses”.
Since he was little anytime he’s sleeping in a semi-upright position he prefers have his legs criss cross apple sauceand his hands behind his head like some old James Dean photo. He kept lifting his arms this morning and they’d kind of swing around in the air never getting very far before we’d try to help him set them softly back down. We were assuming like most kids on ventilators he just wanted to pull at his tubes. When we finally left him alone at it for a minute or so he managed swing it up in to position and get his fingers behind his head, then he was comfortable. He didn’t have much luck with the right arm because its all tied up in IVs and such but he was happy with just one
A little later when his nurse was taking care of the usual “tending” a kid on a vent needs I was reminded just what an awesome God we have (and what a great little kid He gave me). Jesus knew before the beginning of time that Judah would go through this and when He built him He gave him the strongest, sweetest, most loving little spirit there ever was. The nurse told Judah she needed to brush his teeth, which he doesn’t like very much, and this kind hearted, compliant little boy with tubes coming out of every orifice, head swollen and achy and drugged enough that he can barely open his eyes, opened his mouth for her.
That’s my Judah. No matter how much he’s hated food or medicine his whole life he still opens his mouth, still complies with the people he knows love him and are doing what’s best for him. All his nurses and doctors have said he’s the best patient they’ve ever had and all have been amazed at his sweetness and spirit. God has glorified his name through Judah and continues to do so. He never wanted him to go through this but He knew he would, so Jesus made him special to be able to handle it well.
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1st Post Surgery Neuro Exam

So this evenings neuro exam was so encouraging. They asked him yes or no questions (did he want his Bubby and blanket, was his head hurting, did he feel better after the new medicine, was he ready for nigh nigh) and he shook his head or nodded. Then they asked him to wiggle his toes, give a thumbs up and he did!!!
He is resting now and will continue to do so as we wait for the swelling to go down so he can get off the ventilator.
We are so thankful that our sweet Jesus loves him so!

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Little boy for God’s glory

We got up on Wednesday, July 3rd, to take Judah to his MRI.  Our prayer was that the test would be clear and concise with definitive results giving us and the doctors direction to diagnosis and treat Judah. I was tense. Not because I thought they would find something but because anesthesia makes me nervous. So when the doctor came in 30 minutes into Judah’s scan and sat down, I knew we were about to be rocked to our core.  He said, “There’s a tumor in his brain and it’s putting pressure on his brain and brain stem.  We are going to move him to the PICU.” I fell apart.

In my heart, I screamed, PLEASE DON’T TAKE HIM FROM US! STOP!

Remember: My God is good AND my son has a terrible tumor in his head. These things are NOT mutually exclusive. My God is good and he will supply all my needs according to His great riches.

Let the beloved of the Lord rest secure in Him for he shields them all day long and the one the Lord loves rests between his shoulders. Deuteronomy 33:12

The following are excerpts of the updates I’ve sent out to our amazing friends, family, and church:

7/4 It’s been a LONG day.  We have a ways to go but we finally have some news.  The neuro surgeon here at Children’s was just here and went over Judah’s MRI (from this morning) with us.  He explained that the tumor is in the lower back of his brain, in a tear drop type shape, going down into the brain stem and possibly the spine. They couldn’t tell how far it went from this MRI they did today and said they will do another of the spine Friday morning to get a better look.He said the part of the tumor that is in the brain is pretty straight forward but the part going down into the brain stem and spine are more complex.  He wouldn’t really say more than that.  What he did say was that he thought the tumor is causing the apnea, coordination, and eye shakiness…So that’s something.We are in the PICU for the night and will more than likely move to “the floor” tomorrow if all goes well.  They have him on iv steroids to reduce the pressure in his brain and that will hopefully reduce the symptoms. They will do the MRI of the spine Friday and said that if he looks good we can go home Saturday. Surgery will more than likely be early next week.Thank you all for your prayers, emails, and texts! We have felt God’s covering and are overwhelmed by the support y`all have shown us. Emotions are still raw and we are obviously nervous but trusting. We KNOW that God has this. That He is bigger than this tumor and that He has plans for Judah. We will trust in the the Lord and not be afraid! Is.12:2

7/5 After another long day of testing and scans we are finally laying down to rest. Judah’s swallow study came back normal so he is finally getting to eat and drink on his own!  He ate enough for both of us at lunch and between complaining that his tummy hurt (because he had eaten too much)he begged for gummy bears.  He’s been a trooper and we are so proud of him.Now the tougher part:The 2nd MRI showed that the tumor is also present on the C1 and C2 of his spine. This is much more complicated than we initially thought and are struggling with the decision of where/who should be removing this thing from our little boys head. We have had the blessing of my dad (general surgeon), my brother-in-law (OBGYN at Vandy), and my brother (pastor in Memphis) calling in favors with colleagues, friends, and friends of friends to get us second opinions at both Vandy and Le Bonheur. Both doors are open to us. This is where you all come in. PRAY FOR DIRECTION! We don’t want to do anything without God having a say first.  We believe that God is living and speaking to his people so we ask that tonight and tomorrow morning you talk to God on Judah’s and our behalf. Where does God want Judah to be?  And share it with us.  We will be praying and seeking and reading His Word with you.To echo Tae, thank you for being a praying people!

Here is where I want to add in God’s favor for us. The details of the mountain moving that my family has accomplished can only be attributed to God’s amazing hand. My dad and brother-in-law drove the MRIs to Vanderbilt Friday afternoon to meet with a pediatric radiologist friend of Josh’s. He called his best friend, who happens to the head of pediatric neuro surgery at Vanderbilt, who called 2 other pediatric neuro surgeons and they all looked at the scans together. FAVOR. The surgeon said, “My goal is to give his parents back their son the same way he was before surgery. I will not do anything to detrimentally effect who Judah is.  We will find another treatment plan if that is necessary.”  I do not need to tell you what a relief that was to hear.  So Matthew and I spent Friday night and the better part of Saturday praying, talking, reading His Word, praying more, reading your responses and praying into them, talking some more and during this time several things happened. First, Matthew felt an overwhelming peace that when choosing between Vanderbilt and Le Bonheur, there was no WRONG choice.  That God’s plan was in motion and that HE would equip the surgeon to fulfill HIS plan.  The pressure was off.  Second, The events that occurred in the above paragraph.  Most doctors don’t put themselves out for anyone, let alone total strangers.  This was 4+ drs/surgeons, who were not working, on a Friday night, taking time away from their families, lives, holiday weekend plans, to spend 2 hrs with my Dad and brother-in-law looking over my son’s brain tumor and discussing it with heart.  They wanted to give us back our son. This was the among the very few times over the last yr where someone who had the power to help him, made the effort, nay, wanted to help him.  As a mom, it was almost enough to make me load Judah in my car and drive him to Nashville myself!

Another email excerpt:

With the news that the tumor is in the brain on the brain stem and in the C1 & C2 we have decided to go to Vanderbilt.

Thank you to all who prayed for direction and then shared it with us!…We feel an amazing peace about our decision to transfer to Vandy.
The transfer will happen sometime tomorrow and the surgery is looking to be Wednesday or Thursday.  When things are more certain, I will let you all know.The big prayers right now are:1) That the tumor will NOT grow any (and even shrink) until the surgery so no emergency actions have to be taken.2) That the transfer to Vanderbilt stays on schedule (which we have heard is near impossible), goes smoothly, that the “red tape” is minimal, that insurance pays for the transfer, and we get checked into Vanderbilt PICU before dinner. That Matthew and Judah stay calm on the ride from Children’s to Vandy.

Thank you for covering us in prayer. We feel it.

~The Thacker Family

The Holy Spirit has saturated us with his comfort and peace and though no one would ever want to be where we are, I am so grateful that the God of the universe is ALSO the the God who created my son precisely, gave him his precious voice and imagination, AND loves us so much that He gave up His son for mine. He loves Judah more than we do. He has plans we do not know and cannot understand.  I do not know what will happen through all of this.  What I do know with all my heart, is that MY GOD IS GOOD!  He will empower us to get through this, whatever is to come.

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16 

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