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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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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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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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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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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