Judah got to try some yogurt for the first time since the surgery! Swallow study this afternoon will tell us if he can go back to eating regular food.
Judah passed his swallow study so he gets Chic-Fil-A for dinner tonight! We got to drive him around the hospital in a wagon with no wires and no nurses and he got a couple of stuffed animals from the gift shop. His speech is getting better his strength is growing and he’s in a better mood. Thank you for your continued prayers and praise Jesus for a happy and healing little boy!
What a day this has been! Judah wakes talking, plays hard, eats yogurt, passes his swallow study, gets out of the PICU for a wagon ride, and then comes back to his room for some Chic-Fil-A only to be told he will be moving to the floor soon!!! Praise Jesus for such a wonderful, hope restoring day.
Thank you for being a praying people.
He is now comfortably resting!
Judah had a couple of naps today and during each of them he had a “desat”. That’s med-speak for his blood losing it’s oxygen saturation level. I put it in quotes (and yes I’m a little bitter) because I don’t actually believe either of the occasions were a real loss of oxygen in the blood but false positives inherent to the way this is measured. I made my case to the docs but out of an abundance of caution they took him off the list to move to a normal hospital room and decided to keep him in the PICU. We’ll pester them again tomorrow.
Otherwise he had a fantastic day today. He said a bunch of words today – honey, piglet, owl, brave, stuck, rabbit, bubby, my sister and parasaurolophus. None of them are perfect but the speech therapist says that his lips seem to be functioning well but his tongue’s not all there yet. He was super active, fighting dinosaurs with me (matthew), kicking his feet, sitting up on his own and batting both arms at a balloon. The PT/OT people had him up walking though not really holding his own weight up and he actually interacted willingly with them.
The next 6 days are likely to be frustrating and hectic. Judah’s oncologist wants to start chemo as soon as possible. While his tumor is the lowest grade and slow growing, it’s location means that any growth could have potential long term complications. So chemo starts Wednesday. Monday morning he’ll have his port put in (yes, another surgery with anesthesia), Tuesday he’ll have a bevy of tests to get some baselines before he starts chemo. Wednesday he gets the first treatment, followed every Wednesday for 10 weeks, then a two week break, then 4 weeks on and 1 off for a year.
Our problem is therapy. We had hoped they would be able to work something out were he could get pretty intensive outpatient therapy at Vandy but it’s not going to be ideal. For one they don’t have speech therapy so we’d have to find some place else for that. Second they would be wedging him in wherever there are openings in whomever’s schedule had an opening so there would be no routine or chance for a therapist to build report with him. It would be a different therapist at a different time every day for weeks and probably only an hour a day. There are other therapy centers that offer all three types, O/P/S, but they don’t take insurance and while their rates are lower than places that do take insurance we’d still be paying a ton out of pocket for the amount of therapy he needs.
Judah’s becoming more like his old self everyday but still needs lots of prayer. Prayer for continued healing, prayer for him to have patience for the dozens of people poking and prodding him and making him do stuff all day, prayer for a working therapy plan (and a way to pay for it), prayer for yet another surgery, prayer that chemo has few if any side effects and that it is effective in stopping the tumor permanently, prayer to get out of the PICU, prayer to get out of the hospital, prayer that Wendi and I have patience with the docs, nurses, bureaucracy and insurance companies and prayers for a long road ahead.
Last night was a long night. Judah has been having a lot of breakthrough pain and its keeping him awake and grouchy. It would make me the same way. He trying so hard to be brave and we are very proud of him.
He was approved to move to the hem/oc side of the floor yesterday but there weren’t any beds and as of this morning, there still aren’t any. We are so ready to get all these wires off and have more freedom.
Prayers are needed for:
-Pain management
-Moving to the hem/oc floor
-Continued healing of swallowing mechanism (we are hoping he can pass a swallow study before discharge so he doesn’t have to go home with a feeding tube)
-Continued healing of connection between what he knows and what he can say
-Healing of speech
-Bravery and strength during PT/OT
Well the surgery went great! Judah is on his way up from recovery now and will probably be in the PICU through the night. Cross your fingers that all goes well and we can move to the floor tomorrow!
And on another note, Matthew went to a barber shop and got his head shaved today to match Judah. He walked into the barber and asked him to shave his head and the barber said, “why would you do that?” So Matthew politely told him that his son was having brain surgery and his head would be shaved when he got out so he was going to match it. The barber, who felt terrible, said, “open mouth insert foot.” HAHA!
He looks so different but his head is actually really well shaped for a bald head, :)Judah thinks Daddy’s head has a funny feeling!
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!
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.
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!!!!
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.
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
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!
