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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Swallowing

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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prayers (and a happy birthday wish) granted

There are a few good updates today (and a happy birthday wish for Wendi!). The oncologist came by yesterday to confirm that as they suspected it is a grade 1 pilocytic astrocytoma, which means it’s slow growing and extremely unlikely to spread anywhere else. Basically, if you’re going to have a brain tumor that’s the best type to have. Praise Jesus!
We’re seeing improvements. Judah has moved his face muscles more today, moving his lips and tongue. I even got him to snarl at me when I was being particularly aggravating. He’s been pretty agitated all day, but who can blame him. I’d be pretty angry too. More eye movements and head motion. God bless Mumzy’s hearing loss because it’s enabled her to find ways of communicating with him that no one else had found. And he’ll actually make an effort at high fives and fist bumps with Uncle Josh when everyone else just gets grunts. He let the speech therapist read to him for 30 minutes and she had him turning the pages. Started off with angry swats but by the end he was turning them gently and deliberately.
The neuro Drs also said they could try “clamping” his EVD (brain drain as we affectionately call it) which means they are seeing if he can self-regulate his spinal fluid. If he does well they could take the EVD out in the near future with no need for a shunt.
Things are getting better. He’s still got a long road ahead (as do we) and there are a lot of unknowns that we may still have to face. Keep the prayers up, they’re working!

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waiting for significant change is hard

They prepared us for all of this. They told us he may lose his ability to talk or swallow or breath. I (wendi) was like the mom on the play ground who refuses to believe HER CHILD would ever hit another child. And now, here we are, 1 wk post-op and he is doing better but he isn’t better. He can’t/won’t talk. At first Matthew and I convinced ourselves it was his sore throat from the ventilator. Then is was all the sedation. Then his lack of natural sleep…Now, we don’t know. He can’t/won’t swallow. He will cough, clear his throat and then, instead of swallowing, he holds it in his mouth. We have to use the suction and clean it out. But he is breathing like a champ! The apnea seems to have gone away for now and that is a HUGE answer to prayer. So maybe 1 out of 3 ain’t too bad.
It seems bad though. I spent the evening here with him last night. I climbed in his bed (against PICU rules) and prayed to my God for healing. My child, who loves language and speech, and the art of pronunciation, will only, for now, communicate in grunts and swats. I prayed that God would give him back to us the way he was before the surgery. After all, He created him. That sweet little voice with big, big words was hand picked by our Savior for Judah. And I just want to hear it.
We spent yesterday afternoon pestering him by mispronouncing dinosaur names. Foolishly, I thought that if I irritated him enough he would just shake out of it and correct me.
They say it will take time. That he is improving slowly. That it may take a lot longer than we originally thought but “let’s give him the time”. Now they are talking about sending him home on a feeding tube. He isn’t showing any swallowing improvement. No talking improvement. What a thing to say in passing. Like it is of no real consequence how he goes home.
Judah is strong and strong-willed. Qualities both Matthew and I have. He will fight. He’s been in the PICU for over 2 wks now. His little spirit is so depressed. I refuse to believe that a broken spirit, feeding tubes and no communication, from the joyous, giggly, imaginative boy who LOVES to communicate, are part of God’s plan.
I finished my prayer last night begging God to do a glorious work in Judah. And restore his talking and swallowing. Do it fast. Cause, for no better reason than we are drowning, hope is harder to cling to, and this waiting for a significant change is so hard.

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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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slow day in the picu

Today has been a slow day. There have been no real improvements or setbacks. Judah has been a little more alert but still isn’t talking other than the occasional “noooo”. He will swat at you when he’s tired of you messing with him. But really only with his right hand. His left hand seems to be less active and fidgety.
The neuro team came by today and said they want to wait awhile until they put in the shunt. The Dr said they are not in a rush to take the drain out since he’s got a ways to go on the swallowing, coughing, and talking.
We are feeling pretty down about his slow recovery. Please pray for both patience for us and a speedier recovery for Judah.

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Low Grade Juvenile Pilocytic Astrocytoma (jpa)

The oncologist came by this morning and told us that, while the full pathology won’t be back until Wednesday, they could say conclusively that it is low grade! That’s a great thing. It means it grows slowly if at all, has relatively no risk of spreading and responds well to chemotherapy. Another answered prayer.

Judah is doing ok today. He’s super tired and grumpy, but responding well to all the pokes and prods he’s subject to. The physical therapist came by for a while and even tried moving him from the bed to my lap in a rocking chair. He didn’t like that though and fussed and fought until we moved him back to the bed. The respiratory therapist came by with the Coughilator, which looks and acts a lot like a vacuum cleaner. It pushes air into his nose and mouth then sucks it back out kind if forcing him to cough. He didn’t like that either. Poor little guy just wants to sleep but they have to wake him up every hour for neuro checks.
Hoping he’ll be more alert tomorrow.

 

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