The tests keep coming. We're headed back up to Primary Children's tomorrow morning for a CT scan of Teague's brain. I called today because I was worried about how much pain he's still in, and they said he shouldn't be hurting this much 12 days after his surgery. He is needing pain meds more often now than he did when he was in the hospital. There, he was down to one dose a day. Now I have to keep it a-comin' or he's fussy, and it's a pain cry. All moms know the pain cry.
I'm also concerned that his little face is fat. Is it swollen or is he just gaining weight because he's eating heartily for the first time in his life? That's also actually another concern of mine. The kid doesn't have a "full" signal. Wants to eat all the time, even when he's got puppy belly. Maybe something got triggered in surgery. Even if it did, how could I complain? His life was saved.
Tomorrow's CT scan will show if the ventricles in his brain are the same, smaller, or larger than they were on April 21, the last time they checked. They'll also compare it to the pre- and post-op MRIs. If they're larger, it could mean that his CSF is not draining properly.
If you have more prayers in you, we need them. Teague might be able to handle another surgery better than I can. I just need to remember that if they need to drain fluid or put in a shunt, it will not be as serious of a procedure as what he's already had.
I'm starting to wonder, like Quinn, when the pestilence is going to hit.
Thursday, April 30, 2009
Wednesday, April 29, 2009
From Outy to Inny
Finally, Teague's ileus is subsiding. It's not gone, but he's doing better. His belly button had a little crater to it this morning (later in the day is fat time, just like when you're pregnant). I hope it will be all the way back in soon. He's still uncomfortable, but not near what he was yesterday. Or the past week, for that matter. That was pain.
It's strange how I was wondering, after all he went through, how he could possibly handle one more thing. This tummy trouble really bugged me. He spent three extra days in the hospital because of it. Did this child really need one more trial?
But the one good thing is that it diverted all of our attention away from the life-threatening reason he was there in the first place. I never had time to freak out over words like Neuro/Trauma Unit, craniotomy, tumor resection, chemotherapy, or any of it. It's kind of good that I knew the ending to the first volume of the scary book before I really, really read it.
Teague's attention was diverted as well. Only after we got home did he really start to complain about his head. I think that the healing bone must be what's painful. If we ask him about his owie, he points to the incision. He turns his head to the side when I change his diapers. But now, we can ease the aches with over-the-counter meds.
Teague really is becoming more each day the little boy he was before. But this time with an appetite. I never imagined that this child is not, in fact, a picky eater.
Tuesday, April 28, 2009
Terrified
Now I have time to wrap my brain around what we've been doing for the last 10 days. Cancer. And here's what's getting to me. They called it garden-variety ependymoma. ARE YOU KIDDING ME? You can use the term "garden variety" to describe things like the common cold or pot holes or cat poop, but not cancer.
To a surgeon, sure. He removes 80 brain tumors every year. He sees one that's in the same spot as Teague's every other week. To a pathologist, yeah. All they ever look at is scary crap that shouldn't be happening. But to me, cancer is not something that's part of everyday life. Garden variety, my butt.
Now I'm terrified. Every time I see that incision up the back of my kid's head, my heart sinks and I think, "Holy cow, he had his head cut open." Now I have more questions about the no-chemo thing. Now I'm ready to read, read, read.
That first follow-up MRI can't come fast enough. I can't bear to think that Teague might not be over this hurdle. I'm trying to think in the past tense. My kid had cancer. But I just don't know that for sure. I am not convinced that this is over, and I can't stand that. I don't want my little boy to suffer any more.
Teague, on the other hand, is improving. He's eating better and playing more, and only occasionally complains that his head hurts. He hates when I put ointment on the stitches (which are almost dissolved now). He'll point to his head and say, "Head," and I'll ask him if it hurts. He'll say, "No," because he doesn't like the Motrin. Rascal.
I think I'll try to pattern my attitude after his and enjoy life between MRIs. I'll get right on that once I'm done processing everything.
To a surgeon, sure. He removes 80 brain tumors every year. He sees one that's in the same spot as Teague's every other week. To a pathologist, yeah. All they ever look at is scary crap that shouldn't be happening. But to me, cancer is not something that's part of everyday life. Garden variety, my butt.
Now I'm terrified. Every time I see that incision up the back of my kid's head, my heart sinks and I think, "Holy cow, he had his head cut open." Now I have more questions about the no-chemo thing. Now I'm ready to read, read, read.
That first follow-up MRI can't come fast enough. I can't bear to think that Teague might not be over this hurdle. I'm trying to think in the past tense. My kid had cancer. But I just don't know that for sure. I am not convinced that this is over, and I can't stand that. I don't want my little boy to suffer any more.
Teague, on the other hand, is improving. He's eating better and playing more, and only occasionally complains that his head hurts. He hates when I put ointment on the stitches (which are almost dissolved now). He'll point to his head and say, "Head," and I'll ask him if it hurts. He'll say, "No," because he doesn't like the Motrin. Rascal.
I think I'll try to pattern my attitude after his and enjoy life between MRIs. I'll get right on that once I'm done processing everything.
Monday, April 27, 2009
Jail Break
Neuro/Trauma Unit room 2018, vacant.
Whew! We are home.
As soon as we pulled into the garage, Teague wanted to go to the park. So we didn't even go into the house or unload the van. We just walked a block and let him play. He is wobbly on his feet. Fell on his face at the bottom of the slide, which he never does, and he's not as good at climbing and walking as he usually is. Quinn is afraid it's neurological, but I think it's just because he's basically been in bed for the last 10 days. He's doing the newborn foal thing. We'll keep an eye.
When Dr. Kestle asked me this morning if I thought Teague would do OK at home, I almost started to cry. It has really worn all of us down being in the hospital, and I know Teague will recover faster now. I don't think he remembers what undisturbed sleep is (neither do I), and being in his own home will have a calming effect.
He's past the point of needing his vitals taken all the time, and while his tummy is still Buddha, he probably won't need it pumped again. They said if he has trouble I can just take him to his pediatrician. The G.I. doctor doesn't expect him to regress from this point, but to progress slowly. So the challenge will be to keep from feeding him as much as he wants to eat. We've given him some food and already, he's hurting. So we will slow it down. Quinn's got the kids over at the park again this afternoon.
Teague's first follow-up MRI is scheduled for August 3. That seems like such a long time to wait and I hope it's not a pins-and-needles thing for me. Probably just the days leading up to it will be hard. I'm hoping to have a normal summer until that point. I just pray that whatever cells may have been left behind will not grow. Time will tell.
Sunday, April 26, 2009
One in a Million
One in 1.4 million, really. That's the incidence of ependymoma (pretty rare, huh?), and it usually strikes infants and children under 5, little boys more often than little girls. Yeah, I've finally had a chance to read the pamphlets the oncologist gave us. Pamphlet also said that since you can't take extra tissue from around the cancer, there are always some cells left behind. That's why getting all they could see is called a gross total resection as opposed to a total resection. So here's hoping those left-behind cells just die.
It's finally sinking in that my kid has cancer. Well, hopefully had. I know, I'm on the slow boat here. There's just been so much to take in this last week. My head has been spinning. Plus, you can't get these doctors to say the C word. After Teague's first MRI, they said they suspected it was ependymoma, and I know that words ending in "oma" mean cancer, but no one said it. Then when we met Dr. Kestle, he was using words like "mass" and "growth." At one point I had to cut in, look him dead in the eye, and say, "We're talking about brain cancer here, right?" He said, "Most likely. We won't know for sure until we get a piece of it." I guess the euphemisms help it go down easier.
I've also been unable to fully absorb all the ways we've been blessed. I pray that the Lord will bring all these things to my remembrance so that I can record them and never forget. It's astounding, and I am only now beginning to have room in my mind to comprehend it all.
All I can say right now is that we have been comforted, guided, and protected by the spirit of God. One way that comes to mind is that when we met with Dr. Kestle for the first time and he stepped out to check O.R. availability, for a fleeting moment my thought was: We don't know this guy. We don't know anyone who has been to this guy. Shouldn't we do some research?
No sooner did that thought come than it was gone. The Holy Ghost said to me, "Give Teague to him. Hand him over." I felt no nervousness. I never had another thought of doubt. It's hard to describe the calm that has abided with me.
Evidently we were given a surgeon who's one in a million, too. How can I ever be grateful enough for that?
It's finally sinking in that my kid has cancer. Well, hopefully had. I know, I'm on the slow boat here. There's just been so much to take in this last week. My head has been spinning. Plus, you can't get these doctors to say the C word. After Teague's first MRI, they said they suspected it was ependymoma, and I know that words ending in "oma" mean cancer, but no one said it. Then when we met Dr. Kestle, he was using words like "mass" and "growth." At one point I had to cut in, look him dead in the eye, and say, "We're talking about brain cancer here, right?" He said, "Most likely. We won't know for sure until we get a piece of it." I guess the euphemisms help it go down easier.
I've also been unable to fully absorb all the ways we've been blessed. I pray that the Lord will bring all these things to my remembrance so that I can record them and never forget. It's astounding, and I am only now beginning to have room in my mind to comprehend it all.
All I can say right now is that we have been comforted, guided, and protected by the spirit of God. One way that comes to mind is that when we met with Dr. Kestle for the first time and he stepped out to check O.R. availability, for a fleeting moment my thought was: We don't know this guy. We don't know anyone who has been to this guy. Shouldn't we do some research?
No sooner did that thought come than it was gone. The Holy Ghost said to me, "Give Teague to him. Hand him over." I felt no nervousness. I never had another thought of doubt. It's hard to describe the calm that has abided with me.
Evidently we were given a surgeon who's one in a million, too. How can I ever be grateful enough for that?
Saturday, April 25, 2009
Himself
My toddler is acting like himself again. He really turned a corner yesterday. Perked up about 11 a.m., right about the time we got the good news that his final lab result for C-diff was back and it was negative. Good timing, because that meant that he could finally leave his room for the first time in more than two days. We walked around the hospital.
He's been playing with dump trucks, reading books, interacting with "Dooah" (Dora the Explorer) videos, and laughing at toots. That's the little boy I know. I didn't realize how much I've missed him.
He's still on clear liquids. We're taking it slow. His bowel sounds seem to be coming back, but sometimes the nurses can't hear anything because he screams when they come in. But I put my ear to his belly and heard a gurgle. Gives me hope. They're not letting us out of here until he's eating a regular diet and having real bowel movements.
We're keeping his appetite in check with sips of juice and berry-flavored Trident. He asks for a new piece of "gam" about every 10 minutes. And since walking is good for getting those bowels going, I make him go throw the old one away, give him a new one, and then send him back to the trash with the wrapper. It's a good game.
He's been playing with dump trucks, reading books, interacting with "Dooah" (Dora the Explorer) videos, and laughing at toots. That's the little boy I know. I didn't realize how much I've missed him.
He's still on clear liquids. We're taking it slow. His bowel sounds seem to be coming back, but sometimes the nurses can't hear anything because he screams when they come in. But I put my ear to his belly and heard a gurgle. Gives me hope. They're not letting us out of here until he's eating a regular diet and having real bowel movements.
We're keeping his appetite in check with sips of juice and berry-flavored Trident. He asks for a new piece of "gam" about every 10 minutes. And since walking is good for getting those bowels going, I make him go throw the old one away, give him a new one, and then send him back to the trash with the wrapper. It's a good game.
Friday, April 24, 2009
The Light at the End of the Tunnel
I brought going-home clothes for Teague four days ago. I knew it was premature at that time, but I'm getting stir-crazy now. If not for the ileus, he would have been released already. Yesterday at the latest.
Yet we remain. He has been really hurting with this bowel problem. That little gut is just not moving. Some days there have been no bowel sounds. And yesterday morning he had some Jell-O (they were letting him have clear stuff), and in the afternoon he passed the SAME Jell-O. I'm talking, watch-it-wiggle orange Jell-O in the diaper. Looked like it had just been dumped from the cup into the diap. Even stained his butt orange. His digestive system did absolutely nothing to that Jell-O. Freakiest thing I ever saw in a diaper.
His tummy has been in various degrees of distention since Monday, but finally today it's going down. His belly button has a little dip to it again, and this afternoon they started him on a sip of juice every 15 minutes. We'll see if he can do it.
I just want this kid better and home. I think he thinks we moved here.
Yet we remain. He has been really hurting with this bowel problem. That little gut is just not moving. Some days there have been no bowel sounds. And yesterday morning he had some Jell-O (they were letting him have clear stuff), and in the afternoon he passed the SAME Jell-O. I'm talking, watch-it-wiggle orange Jell-O in the diaper. Looked like it had just been dumped from the cup into the diap. Even stained his butt orange. His digestive system did absolutely nothing to that Jell-O. Freakiest thing I ever saw in a diaper.
His tummy has been in various degrees of distention since Monday, but finally today it's going down. His belly button has a little dip to it again, and this afternoon they started him on a sip of juice every 15 minutes. We'll see if he can do it.
I just want this kid better and home. I think he thinks we moved here.
Thursday, April 23, 2009
Love Notes
I want to take a minute to say how grateful I am for all of the words of encouragement and love from those who know us and even from those who don't. You can't underestimate the impact this has on our family. Your friendship sustains us, your kind words buoy us up, and your faith and prayers are calling down all the blessings the Lord has in store for our little boy. I have no doubt about this.
We got an especially cute bundle of cards and letters from our ward Primary (church kids 11 and under). Some were scribbled pictures, others were notes with sweet drawings on them: a kid in a hospital bed, two kids holding hands with a heart between, a big kid and a little kid on a swing, or just flowers. I want to share a few of these letters. Spelling remains unchanged exept that most of them spelled his name wrong. So that's the only thing I'll fix.
And Tyson wins the prize for, candor, originality, and making me laugh. Tyson's
letter was folded like a paper airplane. It read:
We got an especially cute bundle of cards and letters from our ward Primary (church kids 11 and under). Some were scribbled pictures, others were notes with sweet drawings on them: a kid in a hospital bed, two kids holding hands with a heart between, a big kid and a little kid on a swing, or just flowers. I want to share a few of these letters. Spelling remains unchanged exept that most of them spelled his name wrong. So that's the only thing I'll fix.
I am sore yor sik soon you git beder. (this one was from Hunter, and had a
drawing of a big kid giving a flower to a little kid in a bed.)
Dear Teague, Hi! How are you? I hope I can see you soon! I'm sorry you got cancer!
I'm very very very glad to see you soon. Sincerly, Delightra
I hope you feel better Teague. From Justin
Dear Teague, I hope you will get better soon! I'm sorry you are in the hospital I'm sorry you have cancer. SORRY. Sincerely Mackelti Smith
Dear Teague, Get well soon! You ARE such a brave boy! Mary Willford
Fem Kenyon I hop u b better
Dear Teague I hope you feel beter and not have brain toomer. Frome Taylor Webb
Teague are you sek you are sek I no that you are sek. Love you. Katelyn
Strickland. Katelyn love Jake S.
Teague, we love you.
And Tyson wins the prize for, candor, originality, and making me laugh. Tyson's
letter was folded like a paper airplane. It read:
Dear Teague, I hope you get better soon!!! You don't know what you'r going
throw! You could die. You rock so much. From Tyson
Can't beat that.
Mama Bear
The phlebotomists can go to hell. They kept waking my baby up last night, and for the first time since I've been here, I got snippy.
It's bad enough that the nurses come in every four hours to check his blood pressure, temp, and whatever else. They had been in at 8, and Teague went back to sleep. Then at 10, the door opened and the lights came on. And I don't mean the dim lights. Full ceiling lights. Finger prick, fill the vial, crying baby.
Five minutes later, it's, "Oh, sorry. That was supposed to be a vein. We'll get a false read from the finger prick." Starting over with the vein. By that time it was close to 11, so I just had the nurses do their midnight checks early so that Teague wouldn't have to be up again in another hour. They did. Love the nurses.
They gave him until a little after 4 a.m. to come back, so he got five nice hours of sleep. But he had trouble settling when they were done. He wanted to "wock-wock" (rock), so we were in the rocking chair for more than an hour. Finally at 5:30, he was back in bed.
At 6 a.m., on came the lights. I'm not kidding.
"What do you need?"
"I need to take more blood."
"You're going to have to wait until 8."
"OK; let me check with the nurse."
Go ahead and leave the obnoxious light on while you do that. Teague, of course, was crying, so I said, "He's already up. Just get the blood so you can get out of here."
They did.
Then I laid down the law for the nurses. Lab people can come and suck whatever blood they need, but they have to do it on the nurses' schedule. My baby already cries every time he hears the door open. We've got to economize the irritations.
I've started putting off their four-hour checks now, too, if Teague is asleep. He's not going to be able to kick this bowel problem if he's sleep deprived. His oxygen saturation has been normal the whole time he's been here, his blood pressure has been normal since Sunday, and his temp has been normal as well. Leave him the heck alone and check him while he's awake.
It's bad enough that the nurses come in every four hours to check his blood pressure, temp, and whatever else. They had been in at 8, and Teague went back to sleep. Then at 10, the door opened and the lights came on. And I don't mean the dim lights. Full ceiling lights. Finger prick, fill the vial, crying baby.
Five minutes later, it's, "Oh, sorry. That was supposed to be a vein. We'll get a false read from the finger prick." Starting over with the vein. By that time it was close to 11, so I just had the nurses do their midnight checks early so that Teague wouldn't have to be up again in another hour. They did. Love the nurses.
They gave him until a little after 4 a.m. to come back, so he got five nice hours of sleep. But he had trouble settling when they were done. He wanted to "wock-wock" (rock), so we were in the rocking chair for more than an hour. Finally at 5:30, he was back in bed.
At 6 a.m., on came the lights. I'm not kidding.
"What do you need?"
"I need to take more blood."
"You're going to have to wait until 8."
"OK; let me check with the nurse."
Go ahead and leave the obnoxious light on while you do that. Teague, of course, was crying, so I said, "He's already up. Just get the blood so you can get out of here."
They did.
Then I laid down the law for the nurses. Lab people can come and suck whatever blood they need, but they have to do it on the nurses' schedule. My baby already cries every time he hears the door open. We've got to economize the irritations.
I've started putting off their four-hour checks now, too, if Teague is asleep. He's not going to be able to kick this bowel problem if he's sleep deprived. His oxygen saturation has been normal the whole time he's been here, his blood pressure has been normal since Sunday, and his temp has been normal as well. Leave him the heck alone and check him while he's awake.
Wednesday, April 22, 2009
Call Me Ileus
Teague is still having tummy trouble. He has eaten, though. Had a good dinner last night and a hearty breakfast this morning. Actually he pigged out at 4 a.m. and had regular breakfast at 9. But that belly keeps getting distended, and the poops are still runny. Something's not right. He walks like a pregnant lady and is very irritable.
The good thing is that today's nurse has been more vigilant about keeping the pain meds coming; we're trading off between Lortab and ibuprofen, and he's been a lot more comfortable and able to rest. And he had a good night last night (which means I did too). Funny how I'm calling being up only every 4 hours a good night. But seriously, it was like heaven.
He is back on clear liquids, so Jell-O was his dinner. He likes it, but keeps asking for crackers. They've sent stool samples to the lab to see if he's caught a bug, which I think he has. Since the labs aren't back yet, he's on precautions, which means that the nurses wear gloves, robes, and masks around him, and visitors have to, too, and are asked not to touch him. One of their suspicions is that his belly bug could be contagious, and until they know for sure, we're trying to prevent spreading. Parents are the only ones who don't have to mask up. I guess they figure we've already been exposed.
Quinn has been here all day, and I have needed that. I think I've hit a thresshold and I find that I keep "escaping" when my little guy gets upset. He hates having his blood pressure checked or his IVs messed with, and it's more than I can take today. I feel both guilty for leaving and relieved that Quinn is here to cushion.
The good thing is that today's nurse has been more vigilant about keeping the pain meds coming; we're trading off between Lortab and ibuprofen, and he's been a lot more comfortable and able to rest. And he had a good night last night (which means I did too). Funny how I'm calling being up only every 4 hours a good night. But seriously, it was like heaven.
He is back on clear liquids, so Jell-O was his dinner. He likes it, but keeps asking for crackers. They've sent stool samples to the lab to see if he's caught a bug, which I think he has. Since the labs aren't back yet, he's on precautions, which means that the nurses wear gloves, robes, and masks around him, and visitors have to, too, and are asked not to touch him. One of their suspicions is that his belly bug could be contagious, and until they know for sure, we're trying to prevent spreading. Parents are the only ones who don't have to mask up. I guess they figure we've already been exposed.
Quinn has been here all day, and I have needed that. I think I've hit a thresshold and I find that I keep "escaping" when my little guy gets upset. He hates having his blood pressure checked or his IVs messed with, and it's more than I can take today. I feel both guilty for leaving and relieved that Quinn is here to cushion.
Tuesday, April 21, 2009
The Results Are In
Great news: no chemotherapy is recommended for now. I can't even digest that. I've had so many emotions these last few days that I haven't fully felt the impact of all of them. I'm wondering if I've felt the impact of any of them, actually. I've just been managing the crisis. Turning into the skid. But I know that in a few hours, maybe days, when I fully understand what good news this is, I'll be ecstatic.
So here's the deal. The pathology report is that this is garden-variety ependymoma. Not anything that's more aggressive than usual. The oncologist told us that with I think she called it a gross total tumor resection (what the rest of us would call "they got it all"), the rate of recurrence is the same with or without chemotherapy. So they're going to err on the side of not poisoning my child.
Ependymoma will recur in about 1/3 of cases within the first two years. So we're going to have an MRI for Teague every three months for the next two years, and if it doesn't start up again during that time, they'll take it down to every four to six months for the following three years. That will get us to the magic five-year cancer survivor mile marker.
If it does come back, it's likely to be in the same spot, and they'll either hit it with the poison or do another surgery and then hit it with the poison. I'm not thinking about those things right now because there's a 2/3 chance I won't have to. And I don't have room in my brain to think past tomorrow anyway.
I am happy that for now my child can just heal from his surgery and go back to being a normal kid, this time with an appetite. But I'd be lying if I said I wasn't nervous about not doing chemotherapy. Sounds twisted, but I just think, if there's some in there, let's kill it. It's probably a good thing that they won't risk overtreating.
As far as radiation goes, it's the most effective treatment for ependymoma, but they don't do it in kids this little. Those little developing brains can end up with neurologic problems if they zap them with radiation. They like kids to be at least three years old, and Teague turned two exactly one month (to the day) before his surgery. So that's out.
I also had a fear that three months is a long time to wait to find out if there are any little stray cancer cells in my baby's brain that may be already growing. But the oncologist assured me that if there are, they wouldn't even be able to see them six weeks from now. So I can wait the three months for them to check again.
I know that my child is more blessed than I can comprehend. And that's a comment both on the goodness of God and the friedness of my mind.
So here's the deal. The pathology report is that this is garden-variety ependymoma. Not anything that's more aggressive than usual. The oncologist told us that with I think she called it a gross total tumor resection (what the rest of us would call "they got it all"), the rate of recurrence is the same with or without chemotherapy. So they're going to err on the side of not poisoning my child.
Ependymoma will recur in about 1/3 of cases within the first two years. So we're going to have an MRI for Teague every three months for the next two years, and if it doesn't start up again during that time, they'll take it down to every four to six months for the following three years. That will get us to the magic five-year cancer survivor mile marker.
If it does come back, it's likely to be in the same spot, and they'll either hit it with the poison or do another surgery and then hit it with the poison. I'm not thinking about those things right now because there's a 2/3 chance I won't have to. And I don't have room in my brain to think past tomorrow anyway.
I am happy that for now my child can just heal from his surgery and go back to being a normal kid, this time with an appetite. But I'd be lying if I said I wasn't nervous about not doing chemotherapy. Sounds twisted, but I just think, if there's some in there, let's kill it. It's probably a good thing that they won't risk overtreating.
As far as radiation goes, it's the most effective treatment for ependymoma, but they don't do it in kids this little. Those little developing brains can end up with neurologic problems if they zap them with radiation. They like kids to be at least three years old, and Teague turned two exactly one month (to the day) before his surgery. So that's out.
I also had a fear that three months is a long time to wait to find out if there are any little stray cancer cells in my baby's brain that may be already growing. But the oncologist assured me that if there are, they wouldn't even be able to see them six weeks from now. So I can wait the three months for them to check again.
I know that my child is more blessed than I can comprehend. And that's a comment both on the goodness of God and the friedness of my mind.
Tummy Trouble and Temper Tantrums
Last night was harder than the first night home with a newborn. It was Teague's first night on the floor, and he was awake every hour or two. While it was nice being in the same room with him, it was also frustrating. For a two-hour block, he fussed because he wanted a drink and couldn't have one.
He sat in my lap from about 11 p.m. to 1 a.m. crying, pointing to the sink, pointing to the bathroom, and pointing to Quinn's drink from earlier that we had neglected to hide. It was so hard. I cried with him. There was nothing I could do. And he wasn't just fussing. He was smacking my face and trying to get out of my lap, but I couldn't let him because of all the monitors he was hooked up to. He was pointing to the door. He wanted to get to the hallway and look for a drinking fountain. I think his frustration was exacerbated by residual pain, and when I had them give him more morphine, he settled. Who wouldn't, right?
Finally this morning we started ice chips again. He's also had apple juice. He is hungry and is asking again for pancakes. Plus, they're trying to trade off between morphine and Tylenol, and it might sound crazy coming from someone who doesn't like to be medicated, but I wish they'd just leave him on the morphine. He's been agitated all day. He wanted out of the room, so I walked the hallways with him for about an hour and a half. He didn't want a wagon. He didn't want a wheelchair. It had to be me and my back. It's wearing on me to see him like this.
Good news is, I know I've said before that Dr. Kestle said he is recovering ahead of schedule. When he did rounds yesterday and learned that Teague was walking, he was pleased (he even chuckled), and he said that most kids haven't even sat up in bed yet at this point. I know that Teague's recovery is an answer to all the prayers in his behalf. Thank you to all of you, even those who don't know us, for adding your faith to ours. The Lord is listening and sending blessings to this sweet little boy.
And I second Jessie's opinion of Dr. Kestle and told him so. Jes said, "I hope he makes millions of dollars." Kestle laughed and said that wasn't likely, but thanks. But what I mean is, because he learned how to do what he does, my kid is alive. Aside from schooling, training, and precise skill, I was thinking about how patient you must have to be to be a neurosurgeon. In Teague's surgery, 95% of that tumor was gone in the first hour and a half. Then they spent the next three hours on the last 5%. I'm just imagining a blob of sauce on a paper plate, and me having to carefully pick at it for more than three hours. Without damaging the plate. I don't even usually re-do a crooked nail I've hammered in.
He sat in my lap from about 11 p.m. to 1 a.m. crying, pointing to the sink, pointing to the bathroom, and pointing to Quinn's drink from earlier that we had neglected to hide. It was so hard. I cried with him. There was nothing I could do. And he wasn't just fussing. He was smacking my face and trying to get out of my lap, but I couldn't let him because of all the monitors he was hooked up to. He was pointing to the door. He wanted to get to the hallway and look for a drinking fountain. I think his frustration was exacerbated by residual pain, and when I had them give him more morphine, he settled. Who wouldn't, right?
Finally this morning we started ice chips again. He's also had apple juice. He is hungry and is asking again for pancakes. Plus, they're trying to trade off between morphine and Tylenol, and it might sound crazy coming from someone who doesn't like to be medicated, but I wish they'd just leave him on the morphine. He's been agitated all day. He wanted out of the room, so I walked the hallways with him for about an hour and a half. He didn't want a wagon. He didn't want a wheelchair. It had to be me and my back. It's wearing on me to see him like this.
Good news is, I know I've said before that Dr. Kestle said he is recovering ahead of schedule. When he did rounds yesterday and learned that Teague was walking, he was pleased (he even chuckled), and he said that most kids haven't even sat up in bed yet at this point. I know that Teague's recovery is an answer to all the prayers in his behalf. Thank you to all of you, even those who don't know us, for adding your faith to ours. The Lord is listening and sending blessings to this sweet little boy.
And I second Jessie's opinion of Dr. Kestle and told him so. Jes said, "I hope he makes millions of dollars." Kestle laughed and said that wasn't likely, but thanks. But what I mean is, because he learned how to do what he does, my kid is alive. Aside from schooling, training, and precise skill, I was thinking about how patient you must have to be to be a neurosurgeon. In Teague's surgery, 95% of that tumor was gone in the first hour and a half. Then they spent the next three hours on the last 5%. I'm just imagining a blob of sauce on a paper plate, and me having to carefully pick at it for more than three hours. Without damaging the plate. I don't even usually re-do a crooked nail I've hammered in.
Monday, April 20, 2009
Little Pig, Little Pig, Here's Your Pancake
Teague finally got his pancakes today. After the yogurt, the first solid food he'd had. He downed it. Barely gave me time to stir it, and was impatient between spoonfuls. Then he drank some apple juice. And had some Nutter Butters.
That was right as they were releasing him from the PICU (hoo-freakin'-ray), and he held onto that bag of cookies all the way to his new room. Then he asked for the pancakes. So I ordered him some, thinking he may or may not eat them. Our friends Mindy and Stefanie were there, so while Teague waited for his food, Mindy held him so Quinn and I could go eat. We hadn't had a chance to, and it was about 11.
Stef said that Teague ate SIX little pancakes, and Mindy couldn't get them cut fast enough for him, so she gave him a little pile of Nutter Butters, which he was eating between bites.
For the first time in many days, I felt excited and happy. Might even say carefree. There is just something amazing about your child eating. Another thing I'll never take for granted again.
The magic didn't last, though. Within a couple of hours, Teague was having bowel trouble. Runny bowel trouble. (Gross, I know, but this is a medical update, right?) The little distended belly was rock-hard, and his inny was flat. So off he went to x-ray. No peristalsis. That kid was just leaking from the pressure, and there was lots of stool further up in his bowel. Nothing had moved from his stomach. This is apparently a side effect of sedation. His bowels are still asleep.
So now, he can't have any food or drink until that little system starts moving again. They're giving him a suppository to clean out the lower bowel, and they're pumping all that hard-earned breakfast out of his tummy. Rats. Quinn's with him. I had to leave. There's only so much I can take.
That was right as they were releasing him from the PICU (hoo-freakin'-ray), and he held onto that bag of cookies all the way to his new room. Then he asked for the pancakes. So I ordered him some, thinking he may or may not eat them. Our friends Mindy and Stefanie were there, so while Teague waited for his food, Mindy held him so Quinn and I could go eat. We hadn't had a chance to, and it was about 11.
Stef said that Teague ate SIX little pancakes, and Mindy couldn't get them cut fast enough for him, so she gave him a little pile of Nutter Butters, which he was eating between bites.
For the first time in many days, I felt excited and happy. Might even say carefree. There is just something amazing about your child eating. Another thing I'll never take for granted again.
The magic didn't last, though. Within a couple of hours, Teague was having bowel trouble. Runny bowel trouble. (Gross, I know, but this is a medical update, right?) The little distended belly was rock-hard, and his inny was flat. So off he went to x-ray. No peristalsis. That kid was just leaking from the pressure, and there was lots of stool further up in his bowel. Nothing had moved from his stomach. This is apparently a side effect of sedation. His bowels are still asleep.
So now, he can't have any food or drink until that little system starts moving again. They're giving him a suppository to clean out the lower bowel, and they're pumping all that hard-earned breakfast out of his tummy. Rats. Quinn's with him. I had to leave. There's only so much I can take.
Little Miracles and a Little Hannah Montana
Teague is improving and healing from surgery. Dr. Kestle told me he is ahead of schedule. The MRI was clean, confirming that they did get all of the tumor (what's visible, anyway).
Little guy spent a second night in the PICU. His sodium and sugar levels weren't right, so they needed to regulate that. They told me that when you mess with someone's brain, that can happen. He ate ice chips yesterday and drank a little Pedialyte last night. No food yet, but maybe he'll want some today.
The biggest miracle I see at this point is that it appears his brain was not damaged during surgery. This tumor was attached to his brain stem, right in the area that controls swallowing. While he hasn't eaten anything, he also hasn't been drooling, and he did fine on the ice chips. He is also speaking normally. He's very sore because they had to pull the muscles on the back of his head apart. Serious whiplash.
One little miracle is that last night he got his same PICU nurse that he had the night before, rockin' Bryan, who is the most attentive nurse we've had. Knowing that, I was able to sleep better than the night before. Not longer, just better.
Another little miracle: I went home for a few hours last night and hung out with my little Tatum. We watched an all-new Hannah Montana, the one where Lily and Oliver start dating. We'd seen that advertised earlier in the week, and we both thought it looked good. I know, I'm a nerd. But to be able to watch a show and snuggle my little girl, and eat some brownies the neighbors dropped off is one of those things I might previously have thought mundane. And singing that kid to sleep, I'll never take for granted again.
Then I hurried back to the hospital. Tired, but rejuvenated.
Little guy spent a second night in the PICU. His sodium and sugar levels weren't right, so they needed to regulate that. They told me that when you mess with someone's brain, that can happen. He ate ice chips yesterday and drank a little Pedialyte last night. No food yet, but maybe he'll want some today.
The biggest miracle I see at this point is that it appears his brain was not damaged during surgery. This tumor was attached to his brain stem, right in the area that controls swallowing. While he hasn't eaten anything, he also hasn't been drooling, and he did fine on the ice chips. He is also speaking normally. He's very sore because they had to pull the muscles on the back of his head apart. Serious whiplash.
One little miracle is that last night he got his same PICU nurse that he had the night before, rockin' Bryan, who is the most attentive nurse we've had. Knowing that, I was able to sleep better than the night before. Not longer, just better.
Another little miracle: I went home for a few hours last night and hung out with my little Tatum. We watched an all-new Hannah Montana, the one where Lily and Oliver start dating. We'd seen that advertised earlier in the week, and we both thought it looked good. I know, I'm a nerd. But to be able to watch a show and snuggle my little girl, and eat some brownies the neighbors dropped off is one of those things I might previously have thought mundane. And singing that kid to sleep, I'll never take for granted again.
Then I hurried back to the hospital. Tired, but rejuvenated.
Sunday, April 19, 2009
Just Some Boogers
At about 10 this morning, I let our nurse know that I was starting to lean toward having the MRI tomorrow instead of today because my kid is so hungry. They were still working on getting all the radiology people to come in and do it since it's not a weekday, and I was really starting to waver on what was the most important thing: nourishment or testing? At 10:30, they told me that it shouldn't be long, and I said that if it was, I was going to have to say no to the MRI today. Not trying to be rude, but I couldn't wait around. Thank heaven they got it underway. Teague went in about 11:30.
I held my babe for the hour prior to the MRI. I was glad he wanted me to. He was starting to hurt, so while we waited for his next dose of morphine to kick in, I rocked him and sang. He didn't want his usual favorites, but he calmed when I sang a made up one. The only words were, "You are my son, my little son." Then he picked his nose and had a few boogs. Surely the nursing staff can't deny the man that.
I held my babe for the hour prior to the MRI. I was glad he wanted me to. He was starting to hurt, so while we waited for his next dose of morphine to kick in, I rocked him and sang. He didn't want his usual favorites, but he calmed when I sang a made up one. The only words were, "You are my son, my little son." Then he picked his nose and had a few boogs. Surely the nursing staff can't deny the man that.
One More MRI to Come
Teague will have another MRI today to give a clear picture of whether they got all of the tumor, like we believe they did. The bummer is, Teague has not eaten in days and is asking for pancakes. Weekend MRIs are not really on a schedule; they depend on when staff can make it in, and since Teague will have to be sedated for the procedure, no pancakes yet. The good news is, they're keeping the morphine constant, so he's groggy enough that I can distract him from the hunger. He says his tummy hurts.
He is still in the PICU. His blood pressure was high during the night, but they got it under control with medication. This could be because of post-op swelling on his brain and/or the steroids he's on to control that swelling. If his blood pressure stabilizes today without medication, he can go to a regular room tonight.
I had expected him to look like a train wreck when he came out of surgery, but he doesn't. The swelling in his face has gone down, and he seems to be getting some color back. He is very groggy from the morphine, and he doesn't like all the tubes and lines coming out of his little body. Having those removed will be another thing that will be nice about him getting more stable and moving to the floor.
I talked to one of his surgeons this morning. He said once pathology is back (probably mid-week) we will know how aggressive we need to be with chemotherapy. If this tumor was an aggressive one, they will want to start him right away without healing time from his surgery. I'm bracing for that.
In the meantime, my new home is the hospital. Mom brought me some clean clothes, and I had a shower. And they gave me a bed last night, so I got some sleep.
He is still in the PICU. His blood pressure was high during the night, but they got it under control with medication. This could be because of post-op swelling on his brain and/or the steroids he's on to control that swelling. If his blood pressure stabilizes today without medication, he can go to a regular room tonight.
I had expected him to look like a train wreck when he came out of surgery, but he doesn't. The swelling in his face has gone down, and he seems to be getting some color back. He is very groggy from the morphine, and he doesn't like all the tubes and lines coming out of his little body. Having those removed will be another thing that will be nice about him getting more stable and moving to the floor.
I talked to one of his surgeons this morning. He said once pathology is back (probably mid-week) we will know how aggressive we need to be with chemotherapy. If this tumor was an aggressive one, they will want to start him right away without healing time from his surgery. I'm bracing for that.
In the meantime, my new home is the hospital. Mom brought me some clean clothes, and I had a shower. And they gave me a bed last night, so I got some sleep.
Saturday, April 18, 2009
Successful Surgery
Teague got out of surgery at about 3:30, so it took about 5 hours. The surgeon said that he was able to get all of the tumor that he could see, and that the initial frozen sample looks like ependymoma, a cancer that grew from the lining of the 4th ventricle in Teague's brain. It was attached to the brain stem, right on the part that controls swallowing, but we're optimistic that it was not damaged.
Because this tumor was keeping his CSF from draining properly, the doctor told us that he would have a tube coming out of Teague's head for a few days and gradually let the fluid drain the way it's supposed to, with a 50% chance that it wouldn't and he would need a permanent shunt. Good news: Teague came out of surgery with no tubes coming out of his head. Dr. Kestle said it looked like it was going to drain properly, so he sewed him up.We'll know in 3 - 4 days exactly what kind of cancer this is and we'll talk to an oncologist at that point to determine what kind of chemo we'll do for our little boy.
I know he has a long road of feeling sick and being pricked and prodded ahead of him, but I know that the Lord has watched over him and held him in his hands today. The results of this surgery are better than we expected. Teague needed no blood products, his hematocrit and all his vitals stayed steady throughout the procedure, and he came to so fast that they had to give him a little sedative before we could even get from the waiting room to the PICU because he was mad, wanted his mama, and was trying to climb out of the bed.He's got a big zipper up the back of his head, and he'll be very sore because they made an incision from the base of his neck to the middle of the back of his head, pulled the muscles apart, and cut a pumpkin-top out of the base of his skull so they could dig around in his brain.
Again, we thank our dear friends and family for all of your prayers. We know that our Heavenly Father has heard each one. Thank you for your fasting, your faith, your prayers, and your love. We feel every molecule of it.Must go check again on my toddler. He was having a little sleep, so I took advantage of the window of opportunity to update. All of our love and thanks.
Because this tumor was keeping his CSF from draining properly, the doctor told us that he would have a tube coming out of Teague's head for a few days and gradually let the fluid drain the way it's supposed to, with a 50% chance that it wouldn't and he would need a permanent shunt. Good news: Teague came out of surgery with no tubes coming out of his head. Dr. Kestle said it looked like it was going to drain properly, so he sewed him up.We'll know in 3 - 4 days exactly what kind of cancer this is and we'll talk to an oncologist at that point to determine what kind of chemo we'll do for our little boy.
I know he has a long road of feeling sick and being pricked and prodded ahead of him, but I know that the Lord has watched over him and held him in his hands today. The results of this surgery are better than we expected. Teague needed no blood products, his hematocrit and all his vitals stayed steady throughout the procedure, and he came to so fast that they had to give him a little sedative before we could even get from the waiting room to the PICU because he was mad, wanted his mama, and was trying to climb out of the bed.He's got a big zipper up the back of his head, and he'll be very sore because they made an incision from the base of his neck to the middle of the back of his head, pulled the muscles apart, and cut a pumpkin-top out of the base of his skull so they could dig around in his brain.
Again, we thank our dear friends and family for all of your prayers. We know that our Heavenly Father has heard each one. Thank you for your fasting, your faith, your prayers, and your love. We feel every molecule of it.Must go check again on my toddler. He was having a little sleep, so I took advantage of the window of opportunity to update. All of our love and thanks.
Teague's Marathon
We handed Teague off to the anesthesiologist at 9 a.m., a little later than we had expected, but the SLC Marathon slowed traffic, so one of our surgeons was delayed. Who decided to have the start of a huge race right here at Primary Children's and U of U Medical Center?
Anyway, the Lord has sent the Comforter to be with our little boy. Little Mr. Stranger Danger let me hand him right to the doctor, and he willingly disappeared down the hall. It was a big consolation for me, and knowing that he would be masked and conked within minutes was good. Dr. Anesthesia said it would take him about 45 minutes to get all Teague's lines in, so surgery is probably starting about now (10 a.m.).
We feel an overwhelming strength from all of your prayers, and I don't know how to put that feeling into words. When I woke up this morning, I felt no need to ask the Lord for anything. I could feel that there have been so many pleas on our boy's behalf, and all I could do was thank my Heavenly Father for so many who have added their faith to ours. I know that he blesses us more when we look out for each other. I don't know how to thank you.
I also thanked Him for doctors who have worked and studied hard to be in a position to help our baby boy. We met Dr. Kestle, our neurosurgeon, not even 24 hours ago, and we've trusted him to cut our child's head open and operate on his brain. Another blessing of comfort and direction from the Lord. We feel absolutely at peace with it.
The surgery will last into the afternoon, and we should get periodic updates. I will post again tonight.
Quinn and I both feel your love and the strength of your prayers. Thanks for the outpouring. Even if we can't respond individually, we have read every word of our e-mails and Facebook messages. ~Sara
Friday, April 17, 2009
Prayers for Teague
Friends and family,
I apologize for the group e-mail, but time is of the essence. We found out today that Teague has a brain tumor, and he will undergo surgery at Primary Children's Medical Center early tomorrow morning to remove this growth and will be in the hospital for 5 to 7 days. Please pray for our baby.
Teague has been nauseated for the last four weeks; he started throwing up intermittently and then more often. His pediatrician ordered an MRI, which was this morning. They found the tumor and sent us straight to Salt Lake to meet with the neurosurgeon.
The tumor is about 1" in diameter and is sitting between the brain stem and cerebellum. It's preventing the cerebral spinal fluid from draining properly, so he's got some hydrocephalus as well. That and the tumor have been causing the nausea.
The neuro expects it to be one of four cancers, but we won't have the pathology back until late Tuesday. At that point, we can meet with an oncologist to talk about chemotherapy. He also said that, depending on the consistency of the tumor, he may need to leave a sliver to keep from damaging the brain stem. Either way, he said that if he leaves a cm or less, the curability with chemo is the same. So I'm all for not having damage.
I will post updates from time to time as I can. In the meantime, we need your prayers. Let's combine our faith on this little boy's behalf. We love you and thank you.
Sara
I apologize for the group e-mail, but time is of the essence. We found out today that Teague has a brain tumor, and he will undergo surgery at Primary Children's Medical Center early tomorrow morning to remove this growth and will be in the hospital for 5 to 7 days. Please pray for our baby.
Teague has been nauseated for the last four weeks; he started throwing up intermittently and then more often. His pediatrician ordered an MRI, which was this morning. They found the tumor and sent us straight to Salt Lake to meet with the neurosurgeon.
The tumor is about 1" in diameter and is sitting between the brain stem and cerebellum. It's preventing the cerebral spinal fluid from draining properly, so he's got some hydrocephalus as well. That and the tumor have been causing the nausea.
The neuro expects it to be one of four cancers, but we won't have the pathology back until late Tuesday. At that point, we can meet with an oncologist to talk about chemotherapy. He also said that, depending on the consistency of the tumor, he may need to leave a sliver to keep from damaging the brain stem. Either way, he said that if he leaves a cm or less, the curability with chemo is the same. So I'm all for not having damage.
I will post updates from time to time as I can. In the meantime, we need your prayers. Let's combine our faith on this little boy's behalf. We love you and thank you.
Sara
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