shaved heads on cute round heads

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!

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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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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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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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