sleepy and sore

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

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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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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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