The first time Trenton had to have his platelets checked was on December 20, 2008. He had 10,000 platelets. Over the next year, he would dip to as low as they count (3,000). His little bruised body, huge blood blisters and that stupid blue helmet will forever be engrained in my memory.
But today the doctor came back and said "let's play the guess the number game!" That's always a good sign, you don't play games to say your kid is sick. I guessed 90,000 knowing he's been doing well. Nope, 200,000. I almost fell out of my chair. He sent us off with a word I've been praying to hear; cured.
He may still dip down over the next couple years, but we no longer have to go to the dreaded 7th floor of Children's Hospital. I can let him ride his bike and get a bunk bed and not worry, well, quite as much.
As we walk away (hopefully for the final time), I still see other kiddos with way worse illnesses and pray that they all get to hear that magical word too someday. I thank God that I never had to face what those parents are facing and that Trenton has always felt pretty good. He's oblivious as to why we're so happy, and that's ok. He's just looking forward to that bunk bed.
Friday, February 17, 2012
Monday, October 24, 2011
The long version
Many people have heard the very exciting story about how our beautiful boys came into this world. It was probably in passing or details may have changed in translation. So, if you care, here's how it all went down:
On Wednesday, August 17, I started to have contractions in the afternoon. Since I'd had a few false alarms before, I was skeptical, but warned Tyler who was working in Colorado Springs. As the afternoon progressed, I knew these were the real deal and by then my wonderful father-in-law was already on his way to relieve Tyler so he could come home. I also had my mom on her way over to hang with Trenton. When Tyler got home, off we go to St. Joe's! I was definitely feeling the contractions at this point, and needed to breathe my way through them. We arrive at the hospital and they go through the routine of setting up monitors, etc. They find that I'm only 2cm dilated, so send me to walk the halls and we are told to be back in two hours to be checked again. Well, we cheated and walked across the street so Tyler could get something to eat. I was so uncomfortable at this point and so ready to meet my boys!
So, two hours later, we are back in our triage room to be checked again. Still only 2cm dilated. So the doctor informs me they are sending me home. I start to lose it. How in the world are they sending me home?! She tries to be sweet and says it's hard to tell when you are in labor when it's your first. Which I strongly reply with "this isn't my first!" I somehow manage to tell her that I just have no idea when I'm supposed to come back when I'm having contractions every 3-5 minutes and they are sending me home. I will never forget, she says "when you are screaming and holding the side of the bed in pain, that's when you come back." Wow. The nurse made the mistake earlier of telling us how busy they were that night. We really feel that this had a lot to do with their decision. The nurse also told me she could tell I wasn't in active labor because I was laughing and smiling when I came in. Note to pregnant women: be a bit*#! and they will let you stay!
So, we leave the hospital at about 9:30pm and we go to my folk's house and pick up Trenton. I continue to cry. We get home, get Trenton settled and try to sleep. Tyler is able to knock out, but I continue to have contractions and can't even stand to lie down. I don't want to get too detailed, but probably around midnight I lose my mucus plug. I call the nurse at the hospital (which I could tell they didn't care for) and tell her. She says that's ok and ask if I'm resting in between contractions. If I could have reached through the phone and slapped her, I would have. In inform her, no, I couldn't possibly relax at this point. She says to try and pretty much hangs up.
Around 1:45 I am definitely in the "holding the side of the bed" kind of pain, so I wake up Tyler. He stumbles around for a minute trying to get his bearings and I inform him we need to leave ASAP. He calls my dad and says to meet us at the hospital and we'll hand Trenton over there as we don't think we have time to stop at their house. Dad and mom head to St. Joe's.
I have been going to the bathroom probably every 5 minutes, and the final time I just can't believe the pain and pressure I have, so I feel "down there." To my horror, I feel what I believe to be a head. Holy crap. I tell Tyler and he starts to try and get ready faster and I say (of course calmly as ever), "nope, call 911!" He does and the dispatcher tells him to check me out and to HIS horror, he says he can see a head right there. She instructs him to keep his hand in position to try and keep the baby in until the paramedics get there, which he does. I feel the strongest urge to push and can't. Let me just tell you, that hurts. Somehow Tyler has managed to get the dog outside and open the front door, so the firemen don't have to beat it down.
I think it was about 2 minutes into the 911 call that Tyler is screaming "when are they going to get here?!" I somehow managed to laugh and tell him to give them a minute, they don't have jets. At one point, Trenton wakes up to pee. I try to be as calm as I can, and Tyler strongly instructs him to go right back to bed, which he does. He goes right back to sleep (thank goodness). I think the paramedics took about 8 minutes to arrive. About 5 guys are in the room doing various things as I'm spread out on the bed screaming into pillows. Lovely sight I'm sure. They told us later they try to see if they can race me to the hospital, but quickly realize we don't have time. They put me in position and Mike (the main guy doing the actual delivery) says I can go ahead and push with the next contraction which I'm so excited to be able to do. With that push, Justin promptly arrives on scene. That was about 4 minutes after they arrived at 2:18am. Tyler "technically" cuts the cord but needs Mike to actually push his hands down. He holds our beautiful hairy baby and we are in complete shock. He is healthy and doing well, but barely makes a peep and just stares into Tyler's eyes.
At one point we realize we forget to tell my parents that we aren't headed to the hospital so Tyler calls my dad and can only manage to get out, "we already have one baby, come to the house!" I'm not going to say how quickly my dad drove from downtown to our house because I don't want to incriminate him.
We also realize we need help with Trenton, who did come out again at one point and chat with one of the paramedics. My lovely neighbor heard the firetruck and ambulances pull up, and knowing I was close to my due date, got dressed in case she was needed. One of the paramedics ran to get her and she kindly sat in Trenton's bed and snuggled him. She said he was a little weirded out, but doing fine.
I feel a ton better after pushing Justin out, but the next contraction comes quick. I push one more time and our Brayden is born at 2:22. Again, very quiet but doing well. They freaked us out how quiet they were, but maybe they knew they better cooperate after putting us through all this. Tyler had handed Justin off to another paramedic to help me, but wasn't able to cut Brayden's cord. Actually, the paramedic couldn't even find his scissors so just whipped out his knife to cut it.
Tyler and I are just in complete shock and just keep giving each other this look like "did this really just happen?" The guys get me downstairs and onto a stretcher and both boys and I are put into the ambulance. Tyler decides he'll follow behind us and meet us there.
I'm actually feeling great at this point and in good spirits. The boys are doing beautifully and we are off to Parker Hospital. I joke with the paramedics on the way about everything and the fact that they are excited to have two babies because they never get to hold one!
Shortly after the ambulances pull away, my parents arrive. They have no idea what's happening, if Tyler had to deliver the boys, etc. Tyler just collapses into my dad's arm from all the emotions. They come inside to what I'm sure looks like a murder scene and are filled in the events of the evening. My dad drives Tyler to the hospital (again, I won't tell you how quickly, but they may have beat the ambulance) and my wonderful mother and neighbor proceed to start to clean up the disaster that is our bedroom.
We all arrive to the hospital and immediately feel like celebrities and are the talk of the hospital. The boys are checked out and continue to do great. I also get checked out and have to deliver the placenta (which the paramedics preferred be done at the hospital). After the initial chaos and millions of questions, I get to hold my beautiful boys and savor the moment. I think I'm still in shock at this point, but am feeling great!
We later have the joy of calling our friends and family and shock them with our story, whether they believe us or not. Two days later we are released and the boys "return" home and we start our lives together. We could not be more thankful for the paramedics, our parents, and neighbor for getting us through that night.
Sometimes people start to talk about all the things that could have gone wrong. I can't. My heart can't handle the thought. I just know God gave us two beautiful boys that we've been praying for for a long time. They are healthy and have an awesome story to tell the rest of their lives.
On Wednesday, August 17, I started to have contractions in the afternoon. Since I'd had a few false alarms before, I was skeptical, but warned Tyler who was working in Colorado Springs. As the afternoon progressed, I knew these were the real deal and by then my wonderful father-in-law was already on his way to relieve Tyler so he could come home. I also had my mom on her way over to hang with Trenton. When Tyler got home, off we go to St. Joe's! I was definitely feeling the contractions at this point, and needed to breathe my way through them. We arrive at the hospital and they go through the routine of setting up monitors, etc. They find that I'm only 2cm dilated, so send me to walk the halls and we are told to be back in two hours to be checked again. Well, we cheated and walked across the street so Tyler could get something to eat. I was so uncomfortable at this point and so ready to meet my boys!
So, two hours later, we are back in our triage room to be checked again. Still only 2cm dilated. So the doctor informs me they are sending me home. I start to lose it. How in the world are they sending me home?! She tries to be sweet and says it's hard to tell when you are in labor when it's your first. Which I strongly reply with "this isn't my first!" I somehow manage to tell her that I just have no idea when I'm supposed to come back when I'm having contractions every 3-5 minutes and they are sending me home. I will never forget, she says "when you are screaming and holding the side of the bed in pain, that's when you come back." Wow. The nurse made the mistake earlier of telling us how busy they were that night. We really feel that this had a lot to do with their decision. The nurse also told me she could tell I wasn't in active labor because I was laughing and smiling when I came in. Note to pregnant women: be a bit*#! and they will let you stay!
So, we leave the hospital at about 9:30pm and we go to my folk's house and pick up Trenton. I continue to cry. We get home, get Trenton settled and try to sleep. Tyler is able to knock out, but I continue to have contractions and can't even stand to lie down. I don't want to get too detailed, but probably around midnight I lose my mucus plug. I call the nurse at the hospital (which I could tell they didn't care for) and tell her. She says that's ok and ask if I'm resting in between contractions. If I could have reached through the phone and slapped her, I would have. In inform her, no, I couldn't possibly relax at this point. She says to try and pretty much hangs up.
Around 1:45 I am definitely in the "holding the side of the bed" kind of pain, so I wake up Tyler. He stumbles around for a minute trying to get his bearings and I inform him we need to leave ASAP. He calls my dad and says to meet us at the hospital and we'll hand Trenton over there as we don't think we have time to stop at their house. Dad and mom head to St. Joe's.
I have been going to the bathroom probably every 5 minutes, and the final time I just can't believe the pain and pressure I have, so I feel "down there." To my horror, I feel what I believe to be a head. Holy crap. I tell Tyler and he starts to try and get ready faster and I say (of course calmly as ever), "nope, call 911!" He does and the dispatcher tells him to check me out and to HIS horror, he says he can see a head right there. She instructs him to keep his hand in position to try and keep the baby in until the paramedics get there, which he does. I feel the strongest urge to push and can't. Let me just tell you, that hurts. Somehow Tyler has managed to get the dog outside and open the front door, so the firemen don't have to beat it down.
I think it was about 2 minutes into the 911 call that Tyler is screaming "when are they going to get here?!" I somehow managed to laugh and tell him to give them a minute, they don't have jets. At one point, Trenton wakes up to pee. I try to be as calm as I can, and Tyler strongly instructs him to go right back to bed, which he does. He goes right back to sleep (thank goodness). I think the paramedics took about 8 minutes to arrive. About 5 guys are in the room doing various things as I'm spread out on the bed screaming into pillows. Lovely sight I'm sure. They told us later they try to see if they can race me to the hospital, but quickly realize we don't have time. They put me in position and Mike (the main guy doing the actual delivery) says I can go ahead and push with the next contraction which I'm so excited to be able to do. With that push, Justin promptly arrives on scene. That was about 4 minutes after they arrived at 2:18am. Tyler "technically" cuts the cord but needs Mike to actually push his hands down. He holds our beautiful hairy baby and we are in complete shock. He is healthy and doing well, but barely makes a peep and just stares into Tyler's eyes.
At one point we realize we forget to tell my parents that we aren't headed to the hospital so Tyler calls my dad and can only manage to get out, "we already have one baby, come to the house!" I'm not going to say how quickly my dad drove from downtown to our house because I don't want to incriminate him.
We also realize we need help with Trenton, who did come out again at one point and chat with one of the paramedics. My lovely neighbor heard the firetruck and ambulances pull up, and knowing I was close to my due date, got dressed in case she was needed. One of the paramedics ran to get her and she kindly sat in Trenton's bed and snuggled him. She said he was a little weirded out, but doing fine.
I feel a ton better after pushing Justin out, but the next contraction comes quick. I push one more time and our Brayden is born at 2:22. Again, very quiet but doing well. They freaked us out how quiet they were, but maybe they knew they better cooperate after putting us through all this. Tyler had handed Justin off to another paramedic to help me, but wasn't able to cut Brayden's cord. Actually, the paramedic couldn't even find his scissors so just whipped out his knife to cut it.
Tyler and I are just in complete shock and just keep giving each other this look like "did this really just happen?" The guys get me downstairs and onto a stretcher and both boys and I are put into the ambulance. Tyler decides he'll follow behind us and meet us there.
I'm actually feeling great at this point and in good spirits. The boys are doing beautifully and we are off to Parker Hospital. I joke with the paramedics on the way about everything and the fact that they are excited to have two babies because they never get to hold one!
Shortly after the ambulances pull away, my parents arrive. They have no idea what's happening, if Tyler had to deliver the boys, etc. Tyler just collapses into my dad's arm from all the emotions. They come inside to what I'm sure looks like a murder scene and are filled in the events of the evening. My dad drives Tyler to the hospital (again, I won't tell you how quickly, but they may have beat the ambulance) and my wonderful mother and neighbor proceed to start to clean up the disaster that is our bedroom.
We all arrive to the hospital and immediately feel like celebrities and are the talk of the hospital. The boys are checked out and continue to do great. I also get checked out and have to deliver the placenta (which the paramedics preferred be done at the hospital). After the initial chaos and millions of questions, I get to hold my beautiful boys and savor the moment. I think I'm still in shock at this point, but am feeling great!
We later have the joy of calling our friends and family and shock them with our story, whether they believe us or not. Two days later we are released and the boys "return" home and we start our lives together. We could not be more thankful for the paramedics, our parents, and neighbor for getting us through that night.
Sometimes people start to talk about all the things that could have gone wrong. I can't. My heart can't handle the thought. I just know God gave us two beautiful boys that we've been praying for for a long time. They are healthy and have an awesome story to tell the rest of their lives.
Change
Many things in my life have changed recently, so the blog might as well too! Trenton continues to struggle with ITP, but he's been strong and healthy and we are still hoping and praying that it will resolve itself in time. The sooner the better! But I thought I might as well include the newest members of our family in these updates as well. Of course, I don't have gobs of time these days, but I may update every now and then just to let you have a sneak peak at the craziness that is now my life.
Friday, August 12, 2011
Update (sort of)
After almost a year, Trenton was actually seen by the doctor today. There really hasn't been any reason to see him, since he's staying pretty status quo, but after the last dip, I guess the doc figured he better check him out. But today's numbers were much better, 85,000! I was happy with that!
Doc really had nothing terribly new to say. He still believes Trenton has a chance of just outgrowing this whole thing. He said if it continues at this rate for years though, we'd probably start looking at some other things to do. He's also going to e-mail a buddy of his who wrote many of the articles on ITP and see if he suggests anything different. I would love to hear what he says, but I'm guessing it'll be to sit and wait. We are good at that!
Trenton was so good today. I realized he must pay more attention at my prenatal appointments than I think. He held out his little arm just like I do to get my BP checked. And when the doctor wanted him to lay on the table (which he normally doesn't like to do), he just jumped right up and laid down. I'm surprised he didn't lift his shirt up though. He is such a trooper. He doesn't even flinch when they take his blood, he's most interested in the whole process. He just kept saying he's so brave, which he is! It's really quite adorable to see.
The doctor said there was someone else there recently diagnosed and he's a hockey player, yikes! I told him that's what I worry about, Trenton getting injured from running around, playing sports, etc. But he reassured me that his counts are high enough that we really don't need to worry about it. The only thing he would get concerned about is if we were in a bad car accident or something. But then he would worry about a lot more too! Even then, they would just give him a blood transfusion to get him through. So again, it just made me feel better knowing I don't need to worry too much.
So, we'll continue down this path till next time!
Doc really had nothing terribly new to say. He still believes Trenton has a chance of just outgrowing this whole thing. He said if it continues at this rate for years though, we'd probably start looking at some other things to do. He's also going to e-mail a buddy of his who wrote many of the articles on ITP and see if he suggests anything different. I would love to hear what he says, but I'm guessing it'll be to sit and wait. We are good at that!
Trenton was so good today. I realized he must pay more attention at my prenatal appointments than I think. He held out his little arm just like I do to get my BP checked. And when the doctor wanted him to lay on the table (which he normally doesn't like to do), he just jumped right up and laid down. I'm surprised he didn't lift his shirt up though. He is such a trooper. He doesn't even flinch when they take his blood, he's most interested in the whole process. He just kept saying he's so brave, which he is! It's really quite adorable to see.
The doctor said there was someone else there recently diagnosed and he's a hockey player, yikes! I told him that's what I worry about, Trenton getting injured from running around, playing sports, etc. But he reassured me that his counts are high enough that we really don't need to worry about it. The only thing he would get concerned about is if we were in a bad car accident or something. But then he would worry about a lot more too! Even then, they would just give him a blood transfusion to get him through. So again, it just made me feel better knowing I don't need to worry too much.
So, we'll continue down this path till next time!
Thursday, July 14, 2011
Ickiness
Totally forgot to write about Trenton's last blood test. Although I'm not sure anyone even checks this anymore. But it's a good outlet for me, so I will continue.
So, Trenton went in for blood work last week and I was a little dismayed when the nurse called to tell me he was down to 56,000. Not cool. I have noticed more bruising, but I really did not think it would go that low.
She talked to our doctor and he wants to see Trenton in the next few months since we haven't actually visited with the doctor in about a year. She said it was up to me to come in before the twins are born or after. Hm, I'm thinking of NOT bringing two newborns into a hospital if I don't have to. So, I'll make an appointment in early August.
People keep asking me what else they are going to do. Really, I don't think anything. There's really nothing else TO do unless this continues until he's a several years older (ick), or his counts really drop (more ick). So I'm sure we'll continue to sit and wait and pray.
In the meantime, Trenton is very busy getting ready for his new baby brothers. He is so excited, it's really cute. He loves to pat my belly, feel them hiccup, sing songs to them and pick out things to buy. The cribs are up, which I thought would throw him, but it only made him more excited. He was a little disappointed that there's a crib in our room and he learned they won't share a room in the beginning. I'm sure he'll thank us later. I really think he's going to be an awesome big brother.
So, Trenton went in for blood work last week and I was a little dismayed when the nurse called to tell me he was down to 56,000. Not cool. I have noticed more bruising, but I really did not think it would go that low.
She talked to our doctor and he wants to see Trenton in the next few months since we haven't actually visited with the doctor in about a year. She said it was up to me to come in before the twins are born or after. Hm, I'm thinking of NOT bringing two newborns into a hospital if I don't have to. So, I'll make an appointment in early August.
People keep asking me what else they are going to do. Really, I don't think anything. There's really nothing else TO do unless this continues until he's a several years older (ick), or his counts really drop (more ick). So I'm sure we'll continue to sit and wait and pray.
In the meantime, Trenton is very busy getting ready for his new baby brothers. He is so excited, it's really cute. He loves to pat my belly, feel them hiccup, sing songs to them and pick out things to buy. The cribs are up, which I thought would throw him, but it only made him more excited. He was a little disappointed that there's a crib in our room and he learned they won't share a room in the beginning. I'm sure he'll thank us later. I really think he's going to be an awesome big brother.
Thursday, February 17, 2011
Caring
Trenton's platelet count is at 77,000. So, it seems as there has been no change since December. But I know better. Last month I was a little worried about him because of a few signs that we're used to seeing. But today it's the same count. My best guess is was a lot lower last month, and it's on it's way up again. But I don't know! That's the most frustrating part! I'm sure I'm just being hormonal and all, but I'm getting sooo sick of this. Well, to be honest, I've been sick of this for a long time, it's just surfacing again.
Tyler thinks I'm insane, but I still get this vibe from our nurse that I'm being paranoid and overprotective. She's got other kids to worry about that are dying and going through chemo and radiation and far worse things that little kids (or anyone for that matter) should have to go through. Trenton's not at that level. I know that and am very thankful for that. But he's still my baby and I want her to know that and not just ignore me. If you say you will call me later to talk about his test results, then do it!! Is that really asking too much?
OK, I think I feel better now. See you in two months when this all happens again.
Tyler thinks I'm insane, but I still get this vibe from our nurse that I'm being paranoid and overprotective. She's got other kids to worry about that are dying and going through chemo and radiation and far worse things that little kids (or anyone for that matter) should have to go through. Trenton's not at that level. I know that and am very thankful for that. But he's still my baby and I want her to know that and not just ignore me. If you say you will call me later to talk about his test results, then do it!! Is that really asking too much?
OK, I think I feel better now. See you in two months when this all happens again.
Sunday, December 12, 2010
Love/Hate
Trenton's count last week was 74,000. I'm probably not as excited as I should be. He's been looking really good lately, so I was totally preparing to hear a much higher number, maybe even something in the 100's. But, 74 is good. I keep telling myself that.
Tyler keeps reminding me that it's hard to compare when we are only doing checks every other month or so. He could be at a low point right now, and is heading up again. I sort of wish there was a machine that existed that I could check Trenton's blood myself at home, like a blood sugar test. Tyler thinks Trenton's finger would be poked raw from me doing it every day. He's probably right. It's just so hard not knowing what's going on inside your kid's body!
In the closet the other day, I found the helmet Trenton had to wear when when his counts were so low. I had a love/hate relationship with that thing. Looking at it brings back the memories of when this all started, two years ago this month. I looked back at the pictures of his little body just covered in bruises, and another where one entire side of his face was black and blue. It seems like an eternity ago. I debated holding on to the helmet as a memento. Is that morbid? Or is it a sign of how precious life is and how amazing it is that Trenton is well?
I did give it to our nurse last week, thinking another family could benefit from it. But kind of hoping no one will ever need it. But someone will, and I pray that God keeps them as safe as he has Trenton.
Tyler keeps reminding me that it's hard to compare when we are only doing checks every other month or so. He could be at a low point right now, and is heading up again. I sort of wish there was a machine that existed that I could check Trenton's blood myself at home, like a blood sugar test. Tyler thinks Trenton's finger would be poked raw from me doing it every day. He's probably right. It's just so hard not knowing what's going on inside your kid's body!
In the closet the other day, I found the helmet Trenton had to wear when when his counts were so low. I had a love/hate relationship with that thing. Looking at it brings back the memories of when this all started, two years ago this month. I looked back at the pictures of his little body just covered in bruises, and another where one entire side of his face was black and blue. It seems like an eternity ago. I debated holding on to the helmet as a memento. Is that morbid? Or is it a sign of how precious life is and how amazing it is that Trenton is well?
I did give it to our nurse last week, thinking another family could benefit from it. But kind of hoping no one will ever need it. But someone will, and I pray that God keeps them as safe as he has Trenton.
(Trenton saying goodbye to the now too-small helmet)
Sunday, November 7, 2010
Overdue Update
I was given grief today by an unnamed person, whom I will just call "dad," that I haven't posted anything in a while. So, here we go!
Things have been going pretty smoothly lately. About a month ago, I noticed a lot of the tiny red bumps on his belly, which is usually a sure sign of a low platelet count. I e-mailed our doctor to see what he wanted to do, and of course ordered the usual blood test.
I was really preparing myself to hear a low number so was again pleasantly surprised to hear he was at 103,000! I was really in shock and extremely grateful.
Trenton's been doing just fine, as he always appears to be, so we will just continue hoping that he grows out of this obnoxious disease. In the meantime, we continue to watch for signs, worry any time he bonks his head, and pray.
Things have been going pretty smoothly lately. About a month ago, I noticed a lot of the tiny red bumps on his belly, which is usually a sure sign of a low platelet count. I e-mailed our doctor to see what he wanted to do, and of course ordered the usual blood test.
I was really preparing myself to hear a low number so was again pleasantly surprised to hear he was at 103,000! I was really in shock and extremely grateful.
Trenton's been doing just fine, as he always appears to be, so we will just continue hoping that he grows out of this obnoxious disease. In the meantime, we continue to watch for signs, worry any time he bonks his head, and pray.
Friday, August 20, 2010
Blah
Trenton's blood count today was 42,000. I wasn't really surprised as I was starting to see signs a few weeks ago. So his numbers were probably even lower before, and now hopefully on their way up again.
But the doctor is starting to look concerned. He usually just jumps right into his usual schpeel (not sure how to spell that) of "let's keep sitting on it!" But he didn't really have that today. He was starting to bring up the next option, a chemo-like drug called Rituximab. It's typically used to help treat lymphoma, leukemia, etc. It's not supposed to have the super bad side effects that regular chemo does, but could still make him feel yuck. It's just scary to think about all the trips and IV's and sitting around in the clinic, etc. But, we aren't totally there yet. Apparently it's crazy expensive, so insurance companies aren't super willing to see it as necessary.
So the doctor said to call him the next time we can tell his counts are lower, and get him tested, to help his case that he really needs this. Then we'll decide what to do.
It's hard because you want to do anything possible, but you also want to protect your child from anything that will hurt him! So please pray that we have the wisdom to know what to do. Or just that his counts sky rocket and stay there. That would be much easier.
But the doctor is starting to look concerned. He usually just jumps right into his usual schpeel (not sure how to spell that) of "let's keep sitting on it!" But he didn't really have that today. He was starting to bring up the next option, a chemo-like drug called Rituximab. It's typically used to help treat lymphoma, leukemia, etc. It's not supposed to have the super bad side effects that regular chemo does, but could still make him feel yuck. It's just scary to think about all the trips and IV's and sitting around in the clinic, etc. But, we aren't totally there yet. Apparently it's crazy expensive, so insurance companies aren't super willing to see it as necessary.
So the doctor said to call him the next time we can tell his counts are lower, and get him tested, to help his case that he really needs this. Then we'll decide what to do.
It's hard because you want to do anything possible, but you also want to protect your child from anything that will hurt him! So please pray that we have the wisdom to know what to do. Or just that his counts sky rocket and stay there. That would be much easier.
Sunday, June 27, 2010
Not out of the wood yet
I never did hear back from our nurse about what she thought about Trenton being on steroids when he was last checked. So I just e-mailed the doctor and he replied right away, even while he was on vacation! So we brought him in last Friday to get his blood checked and have a quick visit.
Just when we thought this whole ordeal might be coming to an end, Trenton is back down to 54,000. He still looks good (for a crazy 2-yr old boy), and the doctor said he should, since 50,000 is kind of the magic number. Again, we will wait and hope that he continues to improve. We are getting pretty good at waiting.
The good/interesting thing is that all the dips he's been having, have continued to be higher and higher. You can see the chart at the top if you are more of a visual person. It helps me stays positive :)
Just when we thought this whole ordeal might be coming to an end, Trenton is back down to 54,000. He still looks good (for a crazy 2-yr old boy), and the doctor said he should, since 50,000 is kind of the magic number. Again, we will wait and hope that he continues to improve. We are getting pretty good at waiting.
The good/interesting thing is that all the dips he's been having, have continued to be higher and higher. You can see the chart at the top if you are more of a visual person. It helps me stays positive :)
Friday, May 7, 2010
Cautiously shocked
I'll start with a little background. Pretty much every spring Trenton gets a cough, or RSV, or brochciolitis or some other crappy lung thing. It happened this week...again. So, the nebulizer (or "the machine", a nickname I stole from my asthmatic brothers) came back to life and Trenton was put on a low dose of Prednisone for a few days. 2-year-olds on steroids can be a very scary thing.
When we first found out about Trenton's low platelet count, he was put on Prednisone. I guess it's the first line of attack. It didn't work. They tried it again later, it didn't work.
So, why am I telling you this? Because we got Trenton's blood checked today and I received a voice mail (which will probably remain on my phone for a while) that said Trenton's count is at 157,000.
Aaaaaahhh!
My parents say we should celebrate, but I'm still nervous. I'm nervous that when we stop the Prednisone tomorrow, the count will plummet again. Am I being a pessimist of a realist? Either way, he's at 157,000! I may let Trenton run around today without me running behind him with reached-out arms waiting for him to fall. I may release him from his plastic bubble!
The hematology doctor thinks we can wait a few months to get him checked again. He doesn't know about the Prednisone. I'm waiting to hear back from my nurse to see if she thinks it could have made that big a difference. Hearing what she says I think will make me either continue to cautiously celebrate, or really take a big sigh of relief that this freaky thing may be coming to a close. I just hope she calls soon.
Again, I can't thank everyone enough. I know people continue to pray all the time. I was just told a little friend of Trenton's still continues to pray for him in class, which almost made me cry! Obviously God cannot ignore that.
Stay tuned for the nurses' verdict...
When we first found out about Trenton's low platelet count, he was put on Prednisone. I guess it's the first line of attack. It didn't work. They tried it again later, it didn't work.
So, why am I telling you this? Because we got Trenton's blood checked today and I received a voice mail (which will probably remain on my phone for a while) that said Trenton's count is at 157,000.
Aaaaaahhh!
My parents say we should celebrate, but I'm still nervous. I'm nervous that when we stop the Prednisone tomorrow, the count will plummet again. Am I being a pessimist of a realist? Either way, he's at 157,000! I may let Trenton run around today without me running behind him with reached-out arms waiting for him to fall. I may release him from his plastic bubble!
The hematology doctor thinks we can wait a few months to get him checked again. He doesn't know about the Prednisone. I'm waiting to hear back from my nurse to see if she thinks it could have made that big a difference. Hearing what she says I think will make me either continue to cautiously celebrate, or really take a big sigh of relief that this freaky thing may be coming to a close. I just hope she calls soon.
Again, I can't thank everyone enough. I know people continue to pray all the time. I was just told a little friend of Trenton's still continues to pray for him in class, which almost made me cry! Obviously God cannot ignore that.
Stay tuned for the nurses' verdict...
Sunday, April 11, 2010
Good news and bad news
I'll start with the good news...Trenton got his platelet count a week earlier than expected, and they were almost doubled at 63,000! The bad news is WHY he got them checked early.
The craziness started late Saturday morning when Trenton was playing on our bed. Tyler just got done telling him to stop jumping, and I was cleaning the floors next to the bed. The I hear a loud thump and see Trenton on the floor next to me, whacking the back of his head. I grab him and he's freaking out. As I start to walk him to his room, he's doing the sucking in thing and I'm just waiting for the wail to come out, but I don't hear it. He goes totally limp in my arms, passing out. I start screaming for Tyler, and hand Trenton to him. As I'm trying to figure out how to use a phone, and remember the number for 911, I'm thinking my son is paralyzed or dead, but then he's starts crying. He was probably only out for about 5 seconds, but it felt like an eternity. Worst...feeling...ever. I was just completely shaking and freaking out. Tyler actually did really well! It's a good thing that at least one of us can have a level head at certain moments.
Trenton is crying pretty good, but we decide to just call the doctor. Tyler talks to them while Trenton and I cuddle on the bed. He seems to be in pain, and kind of out of it, but doing OK. The doctor says just to watch him, but to bring him in right away if he throws up or acts really lethargic.
So we continue cuddling, Tyler goes to grab some Tylenol (thinking he must have a massive headache) and he just starts screaming again, then he throws up. Off to the ER! I realized it's hard to change clothes while shaking!
At Children's, the doctors and nurses are great, and very quick. After checking him out and talking to the hematologist, they decide to do a head CT since his counts were so low, and they would just feel better if they could rule out a brain bleed. Normally, they probably would have just watched him for a couple hours, but ITP butted it's way in again.
The CT was pretty rough, having Trenton squished into this little head thing, just screaming. But he eventually gave in and did really well. Tyler did great too, having to hold his hands and try to soothe him. While waiting for the results, they decide to get his counts checked while we're there, so they have an idea of where he is now. They were worried it was pretty low, since his belly is covered in petechiae.
The rest of the time was good news. The doctor told us that the scan looked great, and his counts were even up! She said he probably just has a concussion and to watch him really close the next couple days. Oh, and to take it easy. Yea, two-year-olds don't understand what that means. Trenton was already doing better, happy as usual, and ready to run.
I did have to wake him up during the night, to make sure that he would wake up. He just kind of looked at me, like "what the crap are you doing to me?" I took that as a good sign.
He did great the rest of the day, and had a blast today with all his cousins. You would never have guessed he had a concussion the day before. It's amazing how quickly they can recover.
I really felt like Trenton was covered in prayers. The word spread quickly, and I just feel like everyone is so concerned about him and loves him. It's nice to know he (and we) are so supported, and that God continues to take care of our little crazy man.
Hopefully the next count is done as just routine!
The craziness started late Saturday morning when Trenton was playing on our bed. Tyler just got done telling him to stop jumping, and I was cleaning the floors next to the bed. The I hear a loud thump and see Trenton on the floor next to me, whacking the back of his head. I grab him and he's freaking out. As I start to walk him to his room, he's doing the sucking in thing and I'm just waiting for the wail to come out, but I don't hear it. He goes totally limp in my arms, passing out. I start screaming for Tyler, and hand Trenton to him. As I'm trying to figure out how to use a phone, and remember the number for 911, I'm thinking my son is paralyzed or dead, but then he's starts crying. He was probably only out for about 5 seconds, but it felt like an eternity. Worst...feeling...ever. I was just completely shaking and freaking out. Tyler actually did really well! It's a good thing that at least one of us can have a level head at certain moments.
Trenton is crying pretty good, but we decide to just call the doctor. Tyler talks to them while Trenton and I cuddle on the bed. He seems to be in pain, and kind of out of it, but doing OK. The doctor says just to watch him, but to bring him in right away if he throws up or acts really lethargic.
So we continue cuddling, Tyler goes to grab some Tylenol (thinking he must have a massive headache) and he just starts screaming again, then he throws up. Off to the ER! I realized it's hard to change clothes while shaking!
At Children's, the doctors and nurses are great, and very quick. After checking him out and talking to the hematologist, they decide to do a head CT since his counts were so low, and they would just feel better if they could rule out a brain bleed. Normally, they probably would have just watched him for a couple hours, but ITP butted it's way in again.
The CT was pretty rough, having Trenton squished into this little head thing, just screaming. But he eventually gave in and did really well. Tyler did great too, having to hold his hands and try to soothe him. While waiting for the results, they decide to get his counts checked while we're there, so they have an idea of where he is now. They were worried it was pretty low, since his belly is covered in petechiae.
The rest of the time was good news. The doctor told us that the scan looked great, and his counts were even up! She said he probably just has a concussion and to watch him really close the next couple days. Oh, and to take it easy. Yea, two-year-olds don't understand what that means. Trenton was already doing better, happy as usual, and ready to run.
I did have to wake him up during the night, to make sure that he would wake up. He just kind of looked at me, like "what the crap are you doing to me?" I took that as a good sign.
He did great the rest of the day, and had a blast today with all his cousins. You would never have guessed he had a concussion the day before. It's amazing how quickly they can recover.
I really felt like Trenton was covered in prayers. The word spread quickly, and I just feel like everyone is so concerned about him and loves him. It's nice to know he (and we) are so supported, and that God continues to take care of our little crazy man.
Hopefully the next count is done as just routine!
Friday, March 12, 2010
Nearly perfect
I took the day off today to take Trenton to Children's for lab work and see the doctor. His last count was 81,000 so I had dreams of him hitting 100,000. I had a plan if he did. I was going to surprise people with the number. Go to Papa's office and put a sticky note on Pastor Sam's door next to all the other notes. Then we'd go surprise daddy at work. Post it all over the internet, send texts.
Yea, that didn't happen. The doctor came in and told us that he dropped down to 34,000. He was so sweet and just kept saying how sorry he was. He still is holding on to the hope that Trenton will get better on his own, and does not want to do any treatments right now. He said if he dips to 10,000 we'll have that conversation. He knows how hard this is, and says this is the crappy part of this disease, that it's so up and down. He also said he was so hoping to see him hit 100.
I left the office feeling pretty defeated. I tried to prepare myself a little bit, because we saw signs of it dipping. But I secretly thought that if I'm prepared to hear a low number, I'll be that much more surprised when it's super high! It's weird how our minds work.
But, we still had all day to hang out, so we took advantage of the awesome weather. We went to the zoo for a little while, then went downtown to have lunch with Tyler. When we got back home, we both took naps, then we went for a long walk with the dog. Followed by leaf raking and chalk drawing. Could have been a really awesome day if the number 34 didn't keep coming into my head.
I'm trying really hard not to feel sorry for myself, or for our family. There are so many worse things that could happen, and we are certainly reminded of that when we are at Children's and see all the other kids going through chemo. And I was reading this other family's blog about their little girl losing her battle with cancer. I still have my son, he's thriving, he doesn't know he's sick. I'm just so sick of it! I just keep praying for the day I can surprise everyone with the news. I'll keep planning.
Yea, that didn't happen. The doctor came in and told us that he dropped down to 34,000. He was so sweet and just kept saying how sorry he was. He still is holding on to the hope that Trenton will get better on his own, and does not want to do any treatments right now. He said if he dips to 10,000 we'll have that conversation. He knows how hard this is, and says this is the crappy part of this disease, that it's so up and down. He also said he was so hoping to see him hit 100.
I left the office feeling pretty defeated. I tried to prepare myself a little bit, because we saw signs of it dipping. But I secretly thought that if I'm prepared to hear a low number, I'll be that much more surprised when it's super high! It's weird how our minds work.
But, we still had all day to hang out, so we took advantage of the awesome weather. We went to the zoo for a little while, then went downtown to have lunch with Tyler. When we got back home, we both took naps, then we went for a long walk with the dog. Followed by leaf raking and chalk drawing. Could have been a really awesome day if the number 34 didn't keep coming into my head.
I'm trying really hard not to feel sorry for myself, or for our family. There are so many worse things that could happen, and we are certainly reminded of that when we are at Children's and see all the other kids going through chemo. And I was reading this other family's blog about their little girl losing her battle with cancer. I still have my son, he's thriving, he doesn't know he's sick. I'm just so sick of it! I just keep praying for the day I can surprise everyone with the news. I'll keep planning.
Monday, March 8, 2010
All things potty
Lately I feel like my life is revolving around the toilet. No, I'm not sick, we are in the throws of potty training. But I'm really not complaining because it's been a while since I've had to change a dirty diaper. I know everyone says this is so hard. I think we lucked out! About a week or so ago, this little toilet shaped light bulb must have gone off in Trenton's head because he decided he wants to go on the potty all the time. He has been going a little bit for a few weeks, but would never tell me BEFORE he had to go. But he's done so well! And he loves picking out his underwear every morning. We just got him a bunch of new ones with Disney characters. Last night he actually woke up yelling "Goofy!" I hope it was a good dream and Goofy wasn't picking on him or something!
Anyway, sorry for the potty talk. But that's been our life. Trenton continues to do well. I have noticed a few more bruises and things, but sometimes I think I'm just psyching myself out. We get him checked on Friday, so I'm really anxious to see the results. Last time they went this high, we were crushed by a huge drop. So I'll be very happy if it's anything higher than 81,000.
I just can't wait until I don't have this lingering fear following me all the time. When I don't worry about every bump and bruise, or have to inspect every owie thinking it could turn into something worse. Or does every parent do that?
So stay tuned on Friday, I try to post the results as soon as I can. I am taking Friday off though to take Trenton to the clinic. Then I think we'll goof off a bit. Hopefully with a celebratory lunch!
Anyway, sorry for the potty talk. But that's been our life. Trenton continues to do well. I have noticed a few more bruises and things, but sometimes I think I'm just psyching myself out. We get him checked on Friday, so I'm really anxious to see the results. Last time they went this high, we were crushed by a huge drop. So I'll be very happy if it's anything higher than 81,000.
I just can't wait until I don't have this lingering fear following me all the time. When I don't worry about every bump and bruise, or have to inspect every owie thinking it could turn into something worse. Or does every parent do that?
So stay tuned on Friday, I try to post the results as soon as I can. I am taking Friday off though to take Trenton to the clinic. Then I think we'll goof off a bit. Hopefully with a celebratory lunch!
Friday, January 29, 2010
81!
81,000! Need I say more?
I got to talk to the doctor today, briefly (it's a long story why only for a short time). He was very excited and thought Trenton looked great. He said he wants to continue checking counts, and just waiting. He doesn't want to do anything unless Trenton dips below 10,000 which hasn't happened in a while. So we will wait about 6 weeks and check him again. I'm keeping my fingers crossed for over 100,000!
I was very happy when we were leaving the hospital, but I was quickly reminded how fragile life is. Trenton and I were walking behind this couple on our way to the car. I have to admit I was getting a little annoyed by how slow they were going. As Trenton and I passed them, I noticed her giant pregnant belly. Oh fine, I guess she's allowed to walk (waddle) slow. When they got to their car, the man grabbed her and gave her the biggest hug. They stood there for a while, the woman just melted into the hug. I can't imagine what news they might have just heard about their little unborn baby, but it must have sucked. I almost started crying for them, and have been thinking about them ever since. I can only hope and pray they be comforted and God will take care of their little one like he has mine.
I got to talk to the doctor today, briefly (it's a long story why only for a short time). He was very excited and thought Trenton looked great. He said he wants to continue checking counts, and just waiting. He doesn't want to do anything unless Trenton dips below 10,000 which hasn't happened in a while. So we will wait about 6 weeks and check him again. I'm keeping my fingers crossed for over 100,000!
I was very happy when we were leaving the hospital, but I was quickly reminded how fragile life is. Trenton and I were walking behind this couple on our way to the car. I have to admit I was getting a little annoyed by how slow they were going. As Trenton and I passed them, I noticed her giant pregnant belly. Oh fine, I guess she's allowed to walk (waddle) slow. When they got to their car, the man grabbed her and gave her the biggest hug. They stood there for a while, the woman just melted into the hug. I can't imagine what news they might have just heard about their little unborn baby, but it must have sucked. I almost started crying for them, and have been thinking about them ever since. I can only hope and pray they be comforted and God will take care of their little one like he has mine.
Prayers
Trenton has an appointment this afternoon to get a blood test. He's been looking pretty good, so please pray hard that his numbers are outstanding!
I'll post the results as soon as I can.
I'll post the results as soon as I can.
Wednesday, January 27, 2010
No news
I have no news! Just thought I would say that. It's been about 5 weeks since we've gotten Trenton's blood count. I can tell when it's time to get him checked again because everyone I know is asking how his counts are. Which is amazing on it's own! I still continually get people telling me they are thinking about Trenton and praying for him. How cool is that??
I did just e-mail the doctor to see what he's thinking. I feel like I'm being a pest, but I'm afraid they've kind of forgotten about him. Again, I know he's not deathly ill, but he's the cutest, sweetest little guy in the world, so you'd think they should all care about him as much as I do, right?!
I'll keep you all posted!
And I shouldn't say we have NO news, we do have a new nephew! Isaac deRidder was born yesterday. He's super cute (duh) and he and Chris are doing very well. Trenton thought he was pretty cool, and just kept staring at him. He just loves all his cousins, which is so fun.
Also, we recently took a quick trip to Telluride. Here's just two of my favorite pictures:
Monday, December 21, 2009
Good Times
What a great week so far...and it's only Monday!
Trenton's count is at 56,000. I was quite surprised by this as I knew he took a dip a few weeks ago. So hopefully that means he jumped right back up, and will continue to climb.
After going to Children's this morning, we got to go to the zoo with a bunch of cousins! Rick and Sara are in town, so I've taken most the week off work. Trenton has been so excited to just hang out with the family.
A few of the highlights so far:
Trenton's count is at 56,000. I was quite surprised by this as I knew he took a dip a few weeks ago. So hopefully that means he jumped right back up, and will continue to climb.
After going to Children's this morning, we got to go to the zoo with a bunch of cousins! Rick and Sara are in town, so I've taken most the week off work. Trenton has been so excited to just hang out with the family.
A few of the highlights so far:
Monday, November 23, 2009
Sorry Dad
Sorry, I was getting grief for not posting in a while. But there hasn't been a whole lot to report. I realized it's been a while since Trenton got his blood count, so I brought him into Children's last week to get checked. We had to wait an exceptionally long time for some reason, but luckily they have lots of great toys and they brought out the little plastic car again. Otherwise, I don't think we would have made it.
Anyway, he got his blood work done and he's up to 45,000! Not too shabby. I really thought (and of course, hoped) that it would be much higher. He doesn't have a lot of bruising and the petechiae are gone. But it's still up, and I'm very happy about that. Or at least that's what I keep telling myself.
I finally convinced Tyler to take some pictures of our OWN kid, and the wait was certainly worth it. Here's our little monkey:
Anyway, he got his blood work done and he's up to 45,000! Not too shabby. I really thought (and of course, hoped) that it would be much higher. He doesn't have a lot of bruising and the petechiae are gone. But it's still up, and I'm very happy about that. Or at least that's what I keep telling myself.
I finally convinced Tyler to take some pictures of our OWN kid, and the wait was certainly worth it. Here's our little monkey:
Monday, October 26, 2009
Surprising
Trenton's count is at 36,000 today. I was expecting a lot worse! He's been pretty bruised lately, and has had a lot of petechiae on his stomach, so I was really waiting to hear some pretty low numbers. Being sick can also lower his counts, so I was worried this last cold he had may have hurt him too. But he's hanging in there!
Tyler and I just got back from Texas last night, so Trenton was able to stay with Papa and Grandma DeRidder for a few days. He seemed to have had a blast. I can't show any pictures because the only one's I received he was naked!
As soon as Tyler is done with some wedding photos, I'll start pressuring him to take Trenton's 2 year pictures. So I'll be sure to post those :)
Tyler and I just got back from Texas last night, so Trenton was able to stay with Papa and Grandma DeRidder for a few days. He seemed to have had a blast. I can't show any pictures because the only one's I received he was naked!
As soon as Tyler is done with some wedding photos, I'll start pressuring him to take Trenton's 2 year pictures. So I'll be sure to post those :)
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