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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this coming year will look, ummm, hard

We expected a relatively quiet day in which Judah would just be getting better but not much change or news would come our way, but no such luck.
First of all, we moved rooms again. No medical need for the move, just needed to shuffle some patients around for better nurse coverage.
Second we met with the oncologists about the chemo plan. We had previously discussed some of it in a hypothetical way so there weren’t any big revelations but it’s still scary. Since the tumor is low grade the chemo will be fairly low grade as well. He’ll be on it for a year, going in about once a week for treatment which takes a couple of hours. They’ll give him anti-nausea medication before the treatment to try and cut down on the side effects. He likely won’t lose all his hair but it may thin a little. He should still be able to go to pre-school in the fall. Because the medicines knock down the white and red blood cell counts he’ll be slightly more susceptible to colds and other infections and will tire out faster than he would normally. There’s an 85% chance that the year of chemo will stop the tumor from ever growing again. The scariest parts are the “possible but unlikely” side effects like liver damage, hearing loss, kidney damage, needing blood transfusions, etc. It’s also disheartening that the chemo won’t shrink or destroy the tumor that’s left in there, it only kills the parts that might still be growing. That means that any symptoms he currently has as a result of this tumor are likely permanent. We’ve yet to see him fully recovered from the surgery so we don’t know what symptoms may have been relieved by the surgery but the symptoms that could stick around are things like central sleep apnea, balance and coordination issues, troubles swallowing and managing secretions in the mouth and nose, and nystagmus/strabismus – a couple of eye related things he developed a few weeks before the diagnosis.
I (matthew) worry a lot about his spirit and his psyche through all this. He’s just gone through this major traumatic event, spent weeks tied to a hospital bed, days in pain and will soon start a treatment that will make him feel sick and tired for a solid year and there’s just no way he can understand all that. No way to help him grasp that things would have been much worse if we didn’t do all this. It’s just hard to feel like a parent at all when you’re powerless to protect your child or to help him understand things. Mentally I’ve always known that my job as a Christian parent was just to keep my kids alive and do my best to show them Jesus in my life. That at some point no matter what we did right or wrong the sin nature in them would break them like it does all of us and that brokenness would lead to (or, Lord forbid, away from) the Cross of Christ. I knew, in my head but maybe not completely in my heart, that ultimately my role in Judah’s life would have to be yielded up to the business God had with him. I just didn’t expect to so soon come to the point where I had to completely yield it. Where I’d be powerless to affect the direction, the quality or even the duration of Judah’s life.
The best I can do for Judah at this point is to keep praying that God be very close, very real, and very obviously present with Judah (and us) through this. That He keep protecting his mind and spirit, keep healing his body, keep showing the strength of His Mighty Hand through our family. And I can keep asking, begging even, all of you to pray likewise. And I’ll keep doing those things for the next year at least.
The last update is that the neuro docs are leaning towards putting in a vp shunt. That is essentially a permanent drain in his head that syphons off the excess spinal fluid when the pressure builds up and dumps it into his stomach. It sounds scarier that it is. It will be basically invisible, running under the skin of his scalp down the neck and into the body. It’s still another surgery and more recovery but it’d get him out of the ICU and ensure that he never has hydrocephalus problems down the road. So please pray for a clear direction on that.
Thank you all for your continued prayers. Judah is getting better. It’s just going to take a little time.

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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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Specifics to Pray

Here are some specific ways you can be praying for Judah during surgery tomorrow (Thursday 7/11):

Judah goes into surgery clam and unafraid.
That his happy and hopeful spirit is protected in the face of pain and changes he can’t understand.
Pray against the depression he’s been suffering since he’s been stuck in a hospital bed for a week, and probably another week to come.
Surgeon and surgical team are well rested, alert, surrounded and empowered by the Holy Spirit.
Anesthesia is precise and effective.
No long term residual side-effects to speech, breathing, swallowing mechanisms.
No cognitive damage.
No motor skills damage.
Majority of tumor comes out easily and without damaging surrounding tissue.
That the removal of tumor relieves Judah’s symptoms – apnea, nostagmus, facial paralysis, balance and coordination issues.
Swelling goes down quickly and the brain resumes normal flow of spinal fluid.
The tumor be very low grade/benign.
Judah resumes normal, unaided breathing quickly and maintains full control of his airway.
That the recovery team and nurses are both wise and kind.
As little pain as possible during recovery.
That the 5-8 hrs of waiting for Judah to come out of surgery be filled with a peace that only the Holy Spirit can give. That we will not be anxious or afraid but trust in God’s goodness.
For Wendi and I we’d ask prayer for strength for the days to come, hope in a glorious outcome, and faith that our sweet Jesus will provide what we need to get through this.

Judah’s Life verse and Matthew and I picked for him when he was born is

Psalm 91:14

Because he holds fast to me in love, I will deliver him;
I will protect him because he knows my name.
When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him and show him my salvation.

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Post Surgery Notes

So he’s back in his room and looks pretty rough but I cannot express the joy to lay my eyes and hands on him!
They weaned his sedation to do a neurological exam. All limbs moved, pupils are slow but reactive. They said that is ok considering he is post op and highly sedated.
He will remain intubated and sedated until after the MRI tomorrow. They said if he can handle it (pray he can) they will turn the ventilator off and let him breath on his own tonight.

Judah had a reaction to a pain killer and was fighting the ventilator. The medical team was calm and fast and got him breathing again. He’s back on medicine that worked before. Seems to be good now.
Just came up to take him down for a 2 hr post op MRI. They will be looking at how the brain is reacting now that the tumor is gone, fluid movement, swelling, etc. We still aren’t sure if they will extubate him later today or not. We are praying they will at least try…
He has been moving a lot today, arms, legs, neck, opening and closing his eyes. He’s drugged enough to not feel anything and is mostly out of it. He did respond to my voice when I got close and talked to him, opening his eyes and reaching for my face. That’s one of the reasons we are hoping he will be ready to be extubated. We want to talk to him and hear him make some noise too.
Back from MRI. There is still a lot of swelling in the brain stem so they have decided not to extubate yet. They said they will reassess Sunday. 
Other than what the MRI showed, he seems to be doing well.
Pretty disappointed that he will be sedated and tubed for 2 more days.
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Judah’s surgery day: hr by hr

Below you will find a collection of updates and prayers from the day of Judah’s partial brain tumor resection:

They moved the time up a little, now at 9:30 CDT. While the surgeon’s part will only be about 5-6 hours, the prep and finish up will mean he’s gone from us for 7-8 hours.
We just got down to surgery holding. He says he’s so hungry. Then he told us what he wants us to order him when the nurse says he can eat. Bacon, strawberry yogurt, a banana, and a carton of milk. So sweet. He was so sad when we told him we couldn’t go with him into surgery. He said, I want you to be with me when they take the ball out. But our Sweet Jesus is going before us because he just fell asleep!
The nurses just came and wheeled him back to surgery. Surgery won’t actually start for an hr or so as they prep him. He stayed asleep for theist part, waking only when we kissed him and told him we loved him. Our God hears our prayers for peace and no fear for our little boy.
Started the surgery at 10:18am
Just got the call that they are opening his head now.
Just got an update. Vitals are good, working on the tumor. Everything is going fine.
Dr. Wellons just came out and told us he’s out of surgery! He said he did really well. They got most of the tumor in the 4 ventricle but were unable to get any of the tumor in/above he brain stem or spine. When they tried to get the tumor that was growing from the brain stem the 9 nerve reacted (swallowing) and the 12 nerve reacted (tongue). Shortly after, Judah’s heart rate jumped. That was their sign to stop.
Dr. Wellons said his goal was to ‘debulk’ the tumor, get the tissue to pathology, create paths for the spinal fluid, and cause minimal disruption to surrounding tissue. He said he met all those goals barring the part of the tumor growing out of the brain stem.
We are elated that this part of the journey is over and praising God for his steadfast love and faithfulness. He has shorn us up from the beginning and will continue to do so.
Please continue to pray:
That there are no residual side effects from the surgery
That when they wake him in a little bit, he will be able to move all of himself
That he will be able to control his breathing, swallowing, and speaking tomorrow
Thank you all!
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