Tag: crushcancerroundone

smiles and giggles make hearts full

Posted on by Wendi Thacker

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!!!!

Swallowing

Posted on by Wendi Thacker

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.

Judah goes for a ride

Posted on by Wendi Thacker
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

prayers (and a happy birthday wish) granted

Posted on by Wendi Thacker

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!

waiting for significant change is hard

Posted on by Wendi Thacker

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.

real sleep please!

Posted on by Wendi Thacker

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.

slow day in the picu

Posted on by Wendi Thacker

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.

Low Grade Juvenile Pilocytic Astrocytoma (jpa)

Posted on by Wendi Thacker

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.

 

to extubate or not to extubate…

Posted on by Wendi Thacker

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.

Letting him be and his sweet spirit

Posted on by Wendi Thacker
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.