Updates...
First off, update on the family we are wanting to help. It isn't June 1st yet, so you still have time to either purchase something (in which case, all profits go towards this so far anonymous family) or send a donation. In either case, you can email me if you need to contact me. After June 1st, I will let you know how the response was (several of you have placed orders/sent donations....I really don't know how many people read the blog, and some orders have come in that are in no way related to this story, but the profits from those orders are going to help this anonymous- so far- family as well....anyway, I say several, but I suppose that's relative to how many people read the blog. I'd say 10% of you have responded, but i may be setting the bar too high bc maybe not as many people read my blog as I think! ha)...ANYWAY, please take the time to respond with some sort of help. I know finances are tight-- of course we know and understand that-- you are reading a post by a woman who quit her job to stay home with a baby who incurs WAY more medical bills than the check she forfeited to stay home with him. But our community, our friends, and even total strangers, have rallied around us and helped us in so many ways. One of those ways has been financially, and with every penny that comes in (yes, pennies and other coins-- thanks to elementary schools in the community, as well as a coin war at my mom's school (props to you WHS!)), we are reminded of God's faithfulness, and of the goodness humanity still has. So would you consider being one of those "strangers"-- a good samaritan of sorts-- to this other family in need? Really, even $1, or $5, or whatever, will make a difference, I PROMISE! Here's a little more about the family, but I know even this will give some of it away, bc the world is too small for one of you to not know who I'm talking about when I give hints like this. This is an Oklahoma family. Tragedy came upon them really pretty suddenly with one of their children. The tragedy then became three-fold when they found out this same tragedy actually affects EACH of their children. I know some of you already know who I'm talking about, and I will go into more detail later, but please know I don't know the family at all so my details are limited. The prognosis is not good, and the only medical hope they have lies in another state, and would be semi-long term as far as uprooting goes. I'm about to spill all the beans so I will stop-- but I promise, this is a great, huge, desperate need, in my opinion. It seems an impossible feat, or it would to me, if I were sitting in their shoes-- impossible apart from God. But we are His hands and feet, so how can you help to meet this family's need? Whatever you can do, however small, BDawg and I are asking you to do it. I believe we are blessed when we sacrifice, but even if it isn't a sacrifice, and it's just something you are fortunate enough to be able to do, please do it! I don't ask a lot from my blog readers, normally I just try to keep you informed, hopefully make you laugh, and hook you up with some prizes when I have some (which I do, I have three sitting in my garage right now...), but right now, I am asking you to please consider giving, no matter how "small" you think your gift is.
Next update: OUR family. Ridge is doing so well at home this time. Four more days and we will be totally off the steroids (pray pray pray!!! Those four days will be scary and the ones after those, just watching to see if he bleeds, will be even scarier!). We had an upset yesterday when mobile Ridge got his central line pulled/stretched an unrealistic amount. I literally was about to hyperventilate-- breathing super fast and loud and totally freaked out in panic mode. BDawg rushed Ridge to the ER, where they xrayed and said it was still internally in place...the nurses/doctors/surgeon (i think) looked at the external part of the line and said it didn't look damaged, so they redressed it and sent him home. THANK YOU JESUS. I totally thought we'd be hanging out for ANOTHER holiday weekend in the hospital, awaiting a surgery date for a new central line. But thank the good Lord, no, we will not be sitting in the hospital this weekend. We did have a good friend take some pictures of our family in our backyard. I've mentioned it before, we are so blessed to have such talented friends! We have several photographer friends, all of whom are very good at what they do. So thanks to all of our friends! I will let you sneak a peek at some of those pictures after I see them myself!
Sawyer is doing well, as well. He's a mess-- all day long the other day,and often since then, he has called me Spits. Yep. He'll say, "what are you doin, Spits?" and so on...it becomes ridiculous- but it is sure funny! He also told me in the car, when i asked him to repeat himself (I said, "what did you say?" because i didn't understand something he said) and he replied, "nothing. nothing that concerns yoooouuuu." yeah. smarty pants. Smarty pants is getting new bedding for his bed- I ordered it this past week. Not for the twin bed in his room currently, but for the full size bed in our garage-- he's moving up to an even bigger bed!
BDawg might be getting Lasik this week. He's blind as a bat and his glasses broke and his backups are missing a nosepiece, so his newest broken ones are working-- with superglue. ha ha ha. I LOVE glasses-- on anyone. I understand they are annoying to those who have to wear them, but I find them aesthetically pleasing. But since i've known Bdawg, his momma has offered to help out with that procedure, and we've always declined, but it seems a good idea now, given our situation with Ridge and the fact BDawg goes to the eye doctor almost 3 hours away bc of some history with one of his eyes. And 3 hours away just isn't gonna work with Ridge's condition. So here we go! Pray for all of that bc this week might just end with me having a husband who can SEE...but is less aesthetically pleasing to my eyes. ha ha, no i'm totally kidding- i just don't recognize him without glasses. I mean, i KNOW who he is, but he just doesn't look like himself to me. I will learn.
As for me,I'm the same. Working on my jewelry, crochet, sewing....yep. Cooking breakfast more, super glad it's summer break for the hubs, and praying we stay out of the hospital as much as possible this summer. Let's kick this MLT in the B-U-T (t)....i know, two t's, but one sounded better.
Be a blessing today!
Alisha
- alisha
- wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
Sunday, May 30, 2010
Sunday, May 23, 2010
get involved! you can do it!!! come on!!!
A few more days to get involved. If you'd like to see some of my newest merchandise, head over to crazydayphoto.blogspot.com
short post--
after living through and continuing on in the circumstance we've been dealt with Ridge, we have definitely experienced grace and generosity. and we have said we will never be the same because of it. when a need arises, we figured we'd be ready to meet that need in whatever way we were capable of, bc it has meant so much and will continue to mean so much that you have met our needs and continue to do so. i don't want to share too much bc this blog does get some traffic and i want to leave a little bit of a surprise element to this, but i do want my readers to know there is a family, who we do not know, but who is in desperate need of finances and a miracle. i will share what i know about them in a week or so. but here is what we are going to do. bdawg and i both feel deeply that we need to help. because i have quit my job and because we rely on the help and support of our friends, family, community, and perfect strangers, we don't have a lot of resources to financially help this family we are burdened for. so here's what we have pledged to do. i hope and pray God blows our minds with the response. we ARE going to do something for this family. i DO want it to be a surprise, so i am asking for some faith from you readers that this is something GREAT. your heart will break at this story and you will be challenged by this family's faith. so here's the deal-- everything i sell between 5/23 (today) and 6/1 (a week away, or a little over a week)-- all proceeds, every bit of profit, will go to this family. so if you are wanting some jewelry, baby items, customized signs, whatever, check out my facebook page, "Seesaw ridge productions", send me a message and let me know what you want. i'm talking custom orders, so you will have to wait awhile to receive whatever you buy. but i will invoice you, let you pay, get the profits totaled, reveal the story of this family, then get to work on getting your items shipped to you. if you would rather just donate, that's fine too. i'll send ya a free pair of earrings if that's the route you choose to take. email me if you don't have a facebook account-- seesawridgeproductions@yahoo.com
if you send me an email, i can get you our mailing address so you can send in your payment or donation. i can also invoice you via paypal if you prefer to donate/pay that way.
i promise, this story will break your heart, and you definitely want to be a part of this. i can speak from personal experience-- if you can donate $5 or $10 or $500 or whatever, EVERY penny counts. here's how i think about it-- if someone gives $5 to us, that pays for one day's worth of Ridge's prevacid, which he takes EVERY single day. Every little bit REALLY does count, so please know, there is no amount too small.
So here ya go, folks. a week, or 8 days, to get your GIVE on. let's see what we've got! be a blessing.
alisha
short post--
after living through and continuing on in the circumstance we've been dealt with Ridge, we have definitely experienced grace and generosity. and we have said we will never be the same because of it. when a need arises, we figured we'd be ready to meet that need in whatever way we were capable of, bc it has meant so much and will continue to mean so much that you have met our needs and continue to do so. i don't want to share too much bc this blog does get some traffic and i want to leave a little bit of a surprise element to this, but i do want my readers to know there is a family, who we do not know, but who is in desperate need of finances and a miracle. i will share what i know about them in a week or so. but here is what we are going to do. bdawg and i both feel deeply that we need to help. because i have quit my job and because we rely on the help and support of our friends, family, community, and perfect strangers, we don't have a lot of resources to financially help this family we are burdened for. so here's what we have pledged to do. i hope and pray God blows our minds with the response. we ARE going to do something for this family. i DO want it to be a surprise, so i am asking for some faith from you readers that this is something GREAT. your heart will break at this story and you will be challenged by this family's faith. so here's the deal-- everything i sell between 5/23 (today) and 6/1 (a week away, or a little over a week)-- all proceeds, every bit of profit, will go to this family. so if you are wanting some jewelry, baby items, customized signs, whatever, check out my facebook page, "Seesaw ridge productions", send me a message and let me know what you want. i'm talking custom orders, so you will have to wait awhile to receive whatever you buy. but i will invoice you, let you pay, get the profits totaled, reveal the story of this family, then get to work on getting your items shipped to you. if you would rather just donate, that's fine too. i'll send ya a free pair of earrings if that's the route you choose to take. email me if you don't have a facebook account-- seesawridgeproductions@yahoo.com
if you send me an email, i can get you our mailing address so you can send in your payment or donation. i can also invoice you via paypal if you prefer to donate/pay that way.
i promise, this story will break your heart, and you definitely want to be a part of this. i can speak from personal experience-- if you can donate $5 or $10 or $500 or whatever, EVERY penny counts. here's how i think about it-- if someone gives $5 to us, that pays for one day's worth of Ridge's prevacid, which he takes EVERY single day. Every little bit REALLY does count, so please know, there is no amount too small.
So here ya go, folks. a week, or 8 days, to get your GIVE on. let's see what we've got! be a blessing.
alisha
Friday, May 21, 2010
not quite a hippie...but different.
Well, finally, on Thursday, we had a great day. Wednesday was looking up, Ridge made it a little over 24 hours without getting blood. But that night, he had to get a transfusion. Thursday, he stayed at his post transfusion hemoglobin level of around 13.4 all day long. This morning, and this afternoon, he was still around that-- 13.2, actually.
So we begin tapering the steroid dose tomorrow. The last phase of the taper will be oral steroids, and those are easy to go home on. So word on the street is we'll be home Sunday or Monday, if nothing weird happens.
Thank the Lord! We are ready to be home. I'm getting used to being at the hospital, and that's just not normal!
Ridge has been having some heart rate issues- he's been running too low. I've watched him as he's napping this time and things have been much more normal. Weird. Thankful for that! He had an EKG this morning, no results yet. Consensus is, until we see EKG results, that it is either related to some sort of interaction of the meds he's on or it could be a positional issue with his central line. Interesting to note, we de-accessed the port today, so maybe it had something to do with that. I just thought of that. Weird. As a matter of fact, that is very strange coincidence.....hmmmm....We are going to reaccess it in a bit, so we'll see what happens then. If it is an issue with his central line, we may have to do nothing, or we may have to pull it out a bit, or we may have to get it replaced. I'm trying to find images of a Broviac Catheter, which is what Ridge's central line is, but I don't want to post pictures of someone else's kid so you can google it yourself if you want. Anyway, it wouldn't be a small feat to repare/replace this. He had it replaced once before, but the surgeons took out the one he had, put a new one in the other side of his chest...this time, we don't HAVE another side of his chest to work with, bc the port is there. So we'd take this one out and put a new one in the same place. But I'm wasting time typing about it, because THAT is not happening, bc we are sure things are fine. So pray that we are right about that :)
I have been sporadically typing this, and my brain is kind of elsewhere now. But Ridge is much better. That's the jist of it all. He is starving bc of all the steroids he is on, and he is eating very well. He is moving on up past the baby food and to the table food, and we are figuring out what kind of milk he's gonna get...I'm still feeding him some, but he isn't very nice about it and he has six teeth and he's not as appreciative and friendly as one should be to their source of nutrition. So I'm still giving him bottles of breastmilk but we are figuring something else out to give alongside it. He has had some problems with pediasure, I am pretty sure bc it contains dairy. So our other options have been: try whole milk, try toddler formula, then try toddler soy formula. Well, trying dairy is tough because it upsets his stomach and no one gets any sleep at night. So whole milk and toddler formula are not what we really want to try. Soy formula is definitely an option, but formula is kind of expensive and Sawyer never had any and I would rather not give Ridge any if I don't have to (not knocking ya if you use it, do whatever you want-- this is just my preference). SO....since he is old enough to drink things other than formula or breastmilk, we've made a decision. A decision that is a bit unconventional and a decision that really wasn't given as an option in our dr. consults. But it won't hurt him, so we're doing it anyway. I have a friend, a couple years younger than me, who reads this blog, and who is a nurse pracitioner....and who is quite the momma. You can read about her cutie pies here. Anyway, after reading her blog all this time we've been in the hospital, I was exposed to the idea of....goat milk. I know, it's not THAT far fetched, but some of you are probably gagging. I just feel better about giving my kid an actual mammal's milk than something synthetic, if we can. Goat milk is comparable in some ways to breastmilk, and it is easier to digest than cow's milk, and while I didn't taste it, BDawg did, and he said it just tastes kind of like milk. Ridge didn't need any transition- I didn't have to mix part goat milk part breastmilk or anything...he just took it and loved it. And slept better that night. So we're rolling with it. He's had no stomach aches so far from it, and we did buy the kind fortified with folic acid, bc goat milk IS lacking in that department. It's not so weird that you can't buy it at Wal-Mart. So while it is maybe a tad unconventional, I feel much better giving that to my one year old than giving him toddler formula. Maybe that's just me, but that's how I feel, and I like being able to make those decisions. If he doesn't grow soon, maybe we will revisit the idea of a more "complete nutrition" like pediasure...but I don't think it's gonna be an issue. He loves to eat. He's gonna grow. And the boy likes goat milk. It's not as cheap as cow milk, but not too pricey, IMO, considering we buy organic cow milk anyway. I figure it will cost us about $1-$2 per day. But I might be wrong. We will see!
So there's something for you to think about. :)
Thanks so much for all the prayers. No doubt we've needed them, and no doubt we've felt them. I know they have been in abundance, and we ask you to pray as we begin tapering the steroids that Ridge would respond well and not become dependent upon them. We are ready for this bleed to be totally behind us, and to have some good breaks between this one and the next one-- how about...like...a PERMANENT break from bleeds...that's what we want. No more vaccinations for this baby, that's for sure! With every day, I feel a little bit more like a hippie, or something earthy....breastfeeding him still, giving him goat milk, no vaccines, homeschooling Sawyer (possibly/probably/we don't know), yeah yeah yeah. And it feels good.
So we begin tapering the steroid dose tomorrow. The last phase of the taper will be oral steroids, and those are easy to go home on. So word on the street is we'll be home Sunday or Monday, if nothing weird happens.
Thank the Lord! We are ready to be home. I'm getting used to being at the hospital, and that's just not normal!
Ridge has been having some heart rate issues- he's been running too low. I've watched him as he's napping this time and things have been much more normal. Weird. Thankful for that! He had an EKG this morning, no results yet. Consensus is, until we see EKG results, that it is either related to some sort of interaction of the meds he's on or it could be a positional issue with his central line. Interesting to note, we de-accessed the port today, so maybe it had something to do with that. I just thought of that. Weird. As a matter of fact, that is very strange coincidence.....hmmmm....We are going to reaccess it in a bit, so we'll see what happens then. If it is an issue with his central line, we may have to do nothing, or we may have to pull it out a bit, or we may have to get it replaced. I'm trying to find images of a Broviac Catheter, which is what Ridge's central line is, but I don't want to post pictures of someone else's kid so you can google it yourself if you want. Anyway, it wouldn't be a small feat to repare/replace this. He had it replaced once before, but the surgeons took out the one he had, put a new one in the other side of his chest...this time, we don't HAVE another side of his chest to work with, bc the port is there. So we'd take this one out and put a new one in the same place. But I'm wasting time typing about it, because THAT is not happening, bc we are sure things are fine. So pray that we are right about that :)
I have been sporadically typing this, and my brain is kind of elsewhere now. But Ridge is much better. That's the jist of it all. He is starving bc of all the steroids he is on, and he is eating very well. He is moving on up past the baby food and to the table food, and we are figuring out what kind of milk he's gonna get...I'm still feeding him some, but he isn't very nice about it and he has six teeth and he's not as appreciative and friendly as one should be to their source of nutrition. So I'm still giving him bottles of breastmilk but we are figuring something else out to give alongside it. He has had some problems with pediasure, I am pretty sure bc it contains dairy. So our other options have been: try whole milk, try toddler formula, then try toddler soy formula. Well, trying dairy is tough because it upsets his stomach and no one gets any sleep at night. So whole milk and toddler formula are not what we really want to try. Soy formula is definitely an option, but formula is kind of expensive and Sawyer never had any and I would rather not give Ridge any if I don't have to (not knocking ya if you use it, do whatever you want-- this is just my preference). SO....since he is old enough to drink things other than formula or breastmilk, we've made a decision. A decision that is a bit unconventional and a decision that really wasn't given as an option in our dr. consults. But it won't hurt him, so we're doing it anyway. I have a friend, a couple years younger than me, who reads this blog, and who is a nurse pracitioner....and who is quite the momma. You can read about her cutie pies here. Anyway, after reading her blog all this time we've been in the hospital, I was exposed to the idea of....goat milk. I know, it's not THAT far fetched, but some of you are probably gagging. I just feel better about giving my kid an actual mammal's milk than something synthetic, if we can. Goat milk is comparable in some ways to breastmilk, and it is easier to digest than cow's milk, and while I didn't taste it, BDawg did, and he said it just tastes kind of like milk. Ridge didn't need any transition- I didn't have to mix part goat milk part breastmilk or anything...he just took it and loved it. And slept better that night. So we're rolling with it. He's had no stomach aches so far from it, and we did buy the kind fortified with folic acid, bc goat milk IS lacking in that department. It's not so weird that you can't buy it at Wal-Mart. So while it is maybe a tad unconventional, I feel much better giving that to my one year old than giving him toddler formula. Maybe that's just me, but that's how I feel, and I like being able to make those decisions. If he doesn't grow soon, maybe we will revisit the idea of a more "complete nutrition" like pediasure...but I don't think it's gonna be an issue. He loves to eat. He's gonna grow. And the boy likes goat milk. It's not as cheap as cow milk, but not too pricey, IMO, considering we buy organic cow milk anyway. I figure it will cost us about $1-$2 per day. But I might be wrong. We will see!
So there's something for you to think about. :)
Thanks so much for all the prayers. No doubt we've needed them, and no doubt we've felt them. I know they have been in abundance, and we ask you to pray as we begin tapering the steroids that Ridge would respond well and not become dependent upon them. We are ready for this bleed to be totally behind us, and to have some good breaks between this one and the next one-- how about...like...a PERMANENT break from bleeds...that's what we want. No more vaccinations for this baby, that's for sure! With every day, I feel a little bit more like a hippie, or something earthy....breastfeeding him still, giving him goat milk, no vaccines, homeschooling Sawyer (possibly/probably/we don't know), yeah yeah yeah. And it feels good.
Monday, May 17, 2010
what will the lucky number be....
I don't really have a lot of wisdom or insight or really anything deep to share with you. We are pretty much just drained and tired of all of this, but I wanted to update you.
Ridge came into the hospital two weeks ago this Wednesday-- May 5th. He was low on hgb, running about 7.7, so we got two transfusions, things looked good, we went home Thursday night, May 6th. Friday, May 7th, he was kind of on "observation" bc we just weren't sure things were okay. He had a great day but my insides just weren't settled about it yet, so I wasn't really surprised when later that night, he had a dark stool, we checked his hgb, and it had dropped about a gram and a half. So we brought him in, and by the time the ER finally did his CBC, his hgb was 8.0. Which meant he'd dropped 3 grams in about 12 hours. It was another 3 hours before he got his blood-- I think delays like that are ridiculous. He was obviously lower-- he was getting very pale, gaggy, and having super low desaturations on his oxygen levels. He needed the blood when we got there, way before 2:30 AM. So Friday night, May 7th, began a loooong road, that we are still walking. Ridge got three transfusions from 2:30 AM Saturday through that day. He got 3 more on Sunday. Those were all 10ccs/kilo, or 80 ccs of blood. Which meant in two days, he got approx. two to three adult sized transfusions, if my research is correct. On Monday, he got one 80 cc transfusion, one 120 cc transfusion, and one 160 cc transfusion, which meant in that day alone he got almost 2 adult sized transfusions. Until MOnday, his diapers had been mostly black. Monday, his diapers became more maroon. Tuesday, he got 2 160 cc transfusions, Wednesday I think he only got one 160 cc transfusion, Thursday maybe he got 2, Friday it all broke loose and he had 8 or 9 red diapers- he was pooping every single time he was awake. You haven't smelled stinky until you have smelled straight blood in a diaper. I won't complain about poop smell ever again, or I will sure try not to-- because this stench is enough to gag you multiple times over and permeate the entire room. It isn't pleasant to look at, and cleaning your child's dirty bottom is never fun, but it is so difficult to do so without crumbling when all you are cleaning is blood after blood after blood....and none of it is even his blood. He has cycled through all of the blood we've given him, more than once. I don't remember how many transfusions he had since last Thursday, but I believe the total from May 5th to today is 23. 23! We are talking about probably over 2500 ccs of blood. I am so weary of this. Last Tuesday, we also tried taking him off food/feeding and upping his octreotide. This is a standard treatment for GI bleeds, I think not only in MLT kids, but in older people too. Octreotide limits blood flow to the gut, so to cut off the blood flow to the gut and then feed it, which increases blood flow to the gut, you can do some damage/"kill" the gut/intestines, and if those organs die, there's really nothing you can do to fix it. So anyway, Ridge didn't eat from Tuesday to Sunday. We didn't see huge differences in doing that, which was disappointing, not only bc he couldn't eat, but bc it was supposed to work. It usually works to stop bleeds. So we had to decide what to do. Because things were so bad-- worse than ever before, other than the fact he wasn't vomitting, we decided to put him back on steroids. This is supposed to be a short term, 1 week mega dose. We are hoping and praying that it stops the bleed and that we are then able to back off of it. Please pray that with us. I do not want my son on steroids long term. I hate them. I don't want to make a decision today that will preserve his life now, but make it less normal later. But that is what we are having to decide, it seems. And any parent would do whatever it takes to save their child's life. So that's what we will do...but it is so hard to accept. Steroids have awful side effects-- not only the horrible swelling that we saw in Ridge when he was last on steroids, but they also cause his bones to be less dense, allowing for more fractures, and the possibility of less mobility. They can cause glaucoma. They can cause heart issues. They give him crazy high blood pressures. They severely lessen his immune system. We've learned this time around that we can no longer give him vaccines- even deactivated ones, bc that is what started this bleed. Which means, anyone, family or friend, who is not vaccinated against things like flu/swine flu/childhood illnesses, will not be allowed to be around Ridge, bc he will not have protection against those things-- and that's regardless of if he's on steroids or not-- we can't risk getting him immunized bc I don't want to ever watch him bleed like this ever again.
So pray. Pray the bleeding would stop. Pray this pulse dose of steroids would be effective and we wouldn't be stuck on them. Pray we wouldn't have to look at another drug to introduce to his body because I can't do it- the drug options that remain are not really possibilities in my opinion. I don't want them in my son's body. I don't want to have to have surgery to remove a part of his stomach, intestines, colon, or wherever this bleed is coming from. I don't want to make a decision today/in this time that seems correct, but fixes nothing, and in the end, I have to look at my son at age 10 or 16 or whatever and apologize for whatever side effects he has because I made the wrong decision when he was one and had a disease that he doesn't even suffer from anymore at that later age. Just pray that this would end. That God would heal him. That the bleeding would stop. That we'd have wisdom.
I just don't even want to type about it anymore. It is so frightening, frustrating, discouraging, disgusting, ugly, miserable, ridiculous, and for whatever reason...it is ours. So here we go, down another fork in this road. Please pray for us. Pray for Ridge. Pray that God would show his power to save, his power to heal, and that he would rescue our baby today, in this very moment.
Ridge came into the hospital two weeks ago this Wednesday-- May 5th. He was low on hgb, running about 7.7, so we got two transfusions, things looked good, we went home Thursday night, May 6th. Friday, May 7th, he was kind of on "observation" bc we just weren't sure things were okay. He had a great day but my insides just weren't settled about it yet, so I wasn't really surprised when later that night, he had a dark stool, we checked his hgb, and it had dropped about a gram and a half. So we brought him in, and by the time the ER finally did his CBC, his hgb was 8.0. Which meant he'd dropped 3 grams in about 12 hours. It was another 3 hours before he got his blood-- I think delays like that are ridiculous. He was obviously lower-- he was getting very pale, gaggy, and having super low desaturations on his oxygen levels. He needed the blood when we got there, way before 2:30 AM. So Friday night, May 7th, began a loooong road, that we are still walking. Ridge got three transfusions from 2:30 AM Saturday through that day. He got 3 more on Sunday. Those were all 10ccs/kilo, or 80 ccs of blood. Which meant in two days, he got approx. two to three adult sized transfusions, if my research is correct. On Monday, he got one 80 cc transfusion, one 120 cc transfusion, and one 160 cc transfusion, which meant in that day alone he got almost 2 adult sized transfusions. Until MOnday, his diapers had been mostly black. Monday, his diapers became more maroon. Tuesday, he got 2 160 cc transfusions, Wednesday I think he only got one 160 cc transfusion, Thursday maybe he got 2, Friday it all broke loose and he had 8 or 9 red diapers- he was pooping every single time he was awake. You haven't smelled stinky until you have smelled straight blood in a diaper. I won't complain about poop smell ever again, or I will sure try not to-- because this stench is enough to gag you multiple times over and permeate the entire room. It isn't pleasant to look at, and cleaning your child's dirty bottom is never fun, but it is so difficult to do so without crumbling when all you are cleaning is blood after blood after blood....and none of it is even his blood. He has cycled through all of the blood we've given him, more than once. I don't remember how many transfusions he had since last Thursday, but I believe the total from May 5th to today is 23. 23! We are talking about probably over 2500 ccs of blood. I am so weary of this. Last Tuesday, we also tried taking him off food/feeding and upping his octreotide. This is a standard treatment for GI bleeds, I think not only in MLT kids, but in older people too. Octreotide limits blood flow to the gut, so to cut off the blood flow to the gut and then feed it, which increases blood flow to the gut, you can do some damage/"kill" the gut/intestines, and if those organs die, there's really nothing you can do to fix it. So anyway, Ridge didn't eat from Tuesday to Sunday. We didn't see huge differences in doing that, which was disappointing, not only bc he couldn't eat, but bc it was supposed to work. It usually works to stop bleeds. So we had to decide what to do. Because things were so bad-- worse than ever before, other than the fact he wasn't vomitting, we decided to put him back on steroids. This is supposed to be a short term, 1 week mega dose. We are hoping and praying that it stops the bleed and that we are then able to back off of it. Please pray that with us. I do not want my son on steroids long term. I hate them. I don't want to make a decision today that will preserve his life now, but make it less normal later. But that is what we are having to decide, it seems. And any parent would do whatever it takes to save their child's life. So that's what we will do...but it is so hard to accept. Steroids have awful side effects-- not only the horrible swelling that we saw in Ridge when he was last on steroids, but they also cause his bones to be less dense, allowing for more fractures, and the possibility of less mobility. They can cause glaucoma. They can cause heart issues. They give him crazy high blood pressures. They severely lessen his immune system. We've learned this time around that we can no longer give him vaccines- even deactivated ones, bc that is what started this bleed. Which means, anyone, family or friend, who is not vaccinated against things like flu/swine flu/childhood illnesses, will not be allowed to be around Ridge, bc he will not have protection against those things-- and that's regardless of if he's on steroids or not-- we can't risk getting him immunized bc I don't want to ever watch him bleed like this ever again.
So pray. Pray the bleeding would stop. Pray this pulse dose of steroids would be effective and we wouldn't be stuck on them. Pray we wouldn't have to look at another drug to introduce to his body because I can't do it- the drug options that remain are not really possibilities in my opinion. I don't want them in my son's body. I don't want to have to have surgery to remove a part of his stomach, intestines, colon, or wherever this bleed is coming from. I don't want to make a decision today/in this time that seems correct, but fixes nothing, and in the end, I have to look at my son at age 10 or 16 or whatever and apologize for whatever side effects he has because I made the wrong decision when he was one and had a disease that he doesn't even suffer from anymore at that later age. Just pray that this would end. That God would heal him. That the bleeding would stop. That we'd have wisdom.
I just don't even want to type about it anymore. It is so frightening, frustrating, discouraging, disgusting, ugly, miserable, ridiculous, and for whatever reason...it is ours. So here we go, down another fork in this road. Please pray for us. Pray for Ridge. Pray that God would show his power to save, his power to heal, and that he would rescue our baby today, in this very moment.
Wednesday, May 12, 2010
the hospital makes me fat
i am addicted to zingers. all you people who love us, do NOT send me boxes of these-- not to be nice, or a friend, or to play a sick joke. i can NOT stop eating them....the vending machine has 3 flavors, and i don't care which ones are available, i love them. disgusting. we eat like trash up here, and sometimes, i like it. i like it when people bring us good food too- so thanks if you've done that, ever before. we aren't being forced to eat zingers and cornnuts, i'm just choosing to do that. i sicken myself.
ridgers understands food now. he is NPO, meaning no food/drink, and has been for the past 27 hours. his octreotide has been increased to stop his bleeding, but the bleed continues. his platelets are ridiculously low. he does seem to be responding better to his transfusions, so that is good news. we have not been in a place this dark with the disease in about 8 or 9 months. the boys are supposed to celebrate their birthdays in style on saturday. i guess we'll party it up here at the hospital. if you were invited (sorry if you weren't. i guess now you are), i guess don't show up at my house. someone will be there, but it won't be the party crowd. so head our way. so he understands food- as in, when i was eating my hospital food, he watched me take every bite until i had to just stop bc it was too hard to eat in front of him since he can't have even a nibble. oh my heart.
got some cool news about a study in an MLT girlie-- have requested the study be done in Ridge. will keep you posted on if we find anything of any value that will help us to control his bleeding better. i am excited to at least try this. i am wary of new meds, and this would be one way to curb that suggestion for a while. i'm ready to be done with this ridiculousness and get a normal life back.
this has been a hard week. taxing on emotions and on spirits and on relationships and some things that have been bad/stupid/ugly/ridiculous haven't even had to do with ridge's disease, or even really ridge. no details are really available/i shouldn't post about this really....but suffice it to say when people are vicious or snooty or tattly or whatever towards people we love, it gets on my nerves.
ridge is waking. gotta go.
thanks for the prayers. i see a zinger on the bed-- maybe i will eat it. i can't say no.
ridgers understands food now. he is NPO, meaning no food/drink, and has been for the past 27 hours. his octreotide has been increased to stop his bleeding, but the bleed continues. his platelets are ridiculously low. he does seem to be responding better to his transfusions, so that is good news. we have not been in a place this dark with the disease in about 8 or 9 months. the boys are supposed to celebrate their birthdays in style on saturday. i guess we'll party it up here at the hospital. if you were invited (sorry if you weren't. i guess now you are), i guess don't show up at my house. someone will be there, but it won't be the party crowd. so head our way. so he understands food- as in, when i was eating my hospital food, he watched me take every bite until i had to just stop bc it was too hard to eat in front of him since he can't have even a nibble. oh my heart.
got some cool news about a study in an MLT girlie-- have requested the study be done in Ridge. will keep you posted on if we find anything of any value that will help us to control his bleeding better. i am excited to at least try this. i am wary of new meds, and this would be one way to curb that suggestion for a while. i'm ready to be done with this ridiculousness and get a normal life back.
this has been a hard week. taxing on emotions and on spirits and on relationships and some things that have been bad/stupid/ugly/ridiculous haven't even had to do with ridge's disease, or even really ridge. no details are really available/i shouldn't post about this really....but suffice it to say when people are vicious or snooty or tattly or whatever towards people we love, it gets on my nerves.
ridge is waking. gotta go.
thanks for the prayers. i see a zinger on the bed-- maybe i will eat it. i can't say no.
Sunday, May 9, 2010
i haven't pulled an all nighter in a long time. it was funner in college.
yes, i said funner. i know, more fun is more correct. or correct, period. i'm just saying....
so here's the low down to get you up to speed--
Tuesday, Ridge had his 1 yr dr appt. In size, he is off the charts...small. He weighs about 16 lbs, and is 26 inches long. perspective check: he is 1 yr old, and can wear 6-9 mo. clothes. Am I freaked out? no, bc i can't make him 25 lbs overnight. i'm just giving you the report. according to checklist information, he is behind in the facts that he can't walk, doesn't point, doesn't drink from a sippy, can't speak (except for mama), and probably some other stuff. i'm extra not concerned about that, since he's like 5 months delayed on opportunity for those things anyway, since he spent 5 formative months in a hospital bed. but now you know.
Tuesday, he got one immunization. I'm not necessarily pro or anti vaccines. Ridge can't get live vaccines because of his steroid therapy. So we got one shot. He's supposed to get his final HepA at 15 mos of age. IDK if that will happen, bc.....Wednesday, we found ourselves in the hospital with a hemoglobin of 7.7. He was given blood once on Wed. and once on Thurs. and Thurs. night, we went home. Record short stay for us. Friday morning, his hgb was still 11, which is what it was when we left the hospital. Friday night, a diaper caused concern, we checked hgb, it was 9.6. To the ER we went. at 11:30 pm, hgb was already 8.0. He didn't receive his blood until 2:30 AM, and I am certain he was close to 6.0 then, bc he was getting gaggy/vomitty, which happens when he is low. So we were up till about 2:30 AM Friday night/Sat morning, then he started getting blood and the four of us went to sleep at the hospital (don't worry about sawyer being up at the hospital, awake that late. he was partying it up with some leftover baby shower food that one of our favorite nurses got him. he was happy as can be to be eating cookies at 2 AM). I had to get up at 4:30 the next morning bc I was participating in a craft show that day in Noble. So I pretty much got zero sleep, which hasn't happened in forever. I wake up 1823487910 times every night to feed the baby or to his monitor going off, but I sleep off and on from about midnight to 9 AM, so i'm good. but an all nighter like that was bru-tal. Anyway, Ridge got the blood that night. He got blood again Saturday morning around 10 AM, he got blood again yesterday evening around 7 PM, he's getting blood now at 10:45 AM on Sunday. The bleeding isn't over. This is by far the worst he's been in months and months. No vomit yet, but he's wanted to at least once, and he did gag up a little bit of banana that he was eating, and up with the banana came red blood. I can't stand it when it comes up. It's gross enough and disturbing enough and wrong enough when it comes OUT, but when it comes UP, I just can't deal with it. I CAN, and I DO, but I hate that.
So why the bleed? If you haven't gathered yet, this disease is rare. It is random. And we don't know for sure why he ever starts to bleed. He HAS been immunized before, but dynamics were different/med doses were different, so I tend to think this immunization was the culprit (It wasn't a live vaccine, we know he can't have those)....but I could be way wrong. So anyway, he is on transfusion number 6 since Wednesday.
Lord, I am ready for the day that we don't spend so much time in the hospital. But I am thankful that we don't have to live in the hospital anymore. No matter where we are, my prayer is for Ridge to no longer have these bleeding issues.
The other night, I got to share Ridge's story/God's story with a group of ladies (freaked out much? 350+ of them! I was NER-VOUS!). The following evening, my friend Kelly, whom I have never met in real life, but right along with my friend Andrea, whom I have also never met in real life, I consider a lifesaver and someone who is an instant friend and who one day I hope to meet in real life, when our kiddos are stable enough to travel without us (me?) fearing-- ANYWAY, run on sentence....restart: My friend Kelly and her husband shared their daughter's story (of living with MLT) with their church youth group. One thing she told me, later, on FB, was this : It is hard to recap it all. I feel like I barely survived it the first time. YOu know what I mean? Man I do not want to go back to where we have been.
A to the men! I don't know how we made it through the first year with Ridge, but we all survived. Right now, times are bleak. But she is so right- I do NOT want to go back to where we have been. Thank you, Lord, for bringing us this far. Carry us some more, bc today is a dark day for us.
Have a happy Mother's Day (I know, kind of bleak way to wish you happy mother's day, but I truly mean it....moms have the hardest jobs ever.)
so here's the low down to get you up to speed--
Tuesday, Ridge had his 1 yr dr appt. In size, he is off the charts...small. He weighs about 16 lbs, and is 26 inches long. perspective check: he is 1 yr old, and can wear 6-9 mo. clothes. Am I freaked out? no, bc i can't make him 25 lbs overnight. i'm just giving you the report. according to checklist information, he is behind in the facts that he can't walk, doesn't point, doesn't drink from a sippy, can't speak (except for mama), and probably some other stuff. i'm extra not concerned about that, since he's like 5 months delayed on opportunity for those things anyway, since he spent 5 formative months in a hospital bed. but now you know.
Tuesday, he got one immunization. I'm not necessarily pro or anti vaccines. Ridge can't get live vaccines because of his steroid therapy. So we got one shot. He's supposed to get his final HepA at 15 mos of age. IDK if that will happen, bc.....Wednesday, we found ourselves in the hospital with a hemoglobin of 7.7. He was given blood once on Wed. and once on Thurs. and Thurs. night, we went home. Record short stay for us. Friday morning, his hgb was still 11, which is what it was when we left the hospital. Friday night, a diaper caused concern, we checked hgb, it was 9.6. To the ER we went. at 11:30 pm, hgb was already 8.0. He didn't receive his blood until 2:30 AM, and I am certain he was close to 6.0 then, bc he was getting gaggy/vomitty, which happens when he is low. So we were up till about 2:30 AM Friday night/Sat morning, then he started getting blood and the four of us went to sleep at the hospital (don't worry about sawyer being up at the hospital, awake that late. he was partying it up with some leftover baby shower food that one of our favorite nurses got him. he was happy as can be to be eating cookies at 2 AM). I had to get up at 4:30 the next morning bc I was participating in a craft show that day in Noble. So I pretty much got zero sleep, which hasn't happened in forever. I wake up 1823487910 times every night to feed the baby or to his monitor going off, but I sleep off and on from about midnight to 9 AM, so i'm good. but an all nighter like that was bru-tal. Anyway, Ridge got the blood that night. He got blood again Saturday morning around 10 AM, he got blood again yesterday evening around 7 PM, he's getting blood now at 10:45 AM on Sunday. The bleeding isn't over. This is by far the worst he's been in months and months. No vomit yet, but he's wanted to at least once, and he did gag up a little bit of banana that he was eating, and up with the banana came red blood. I can't stand it when it comes up. It's gross enough and disturbing enough and wrong enough when it comes OUT, but when it comes UP, I just can't deal with it. I CAN, and I DO, but I hate that.
So why the bleed? If you haven't gathered yet, this disease is rare. It is random. And we don't know for sure why he ever starts to bleed. He HAS been immunized before, but dynamics were different/med doses were different, so I tend to think this immunization was the culprit (It wasn't a live vaccine, we know he can't have those)....but I could be way wrong. So anyway, he is on transfusion number 6 since Wednesday.
Lord, I am ready for the day that we don't spend so much time in the hospital. But I am thankful that we don't have to live in the hospital anymore. No matter where we are, my prayer is for Ridge to no longer have these bleeding issues.
The other night, I got to share Ridge's story/God's story with a group of ladies (freaked out much? 350+ of them! I was NER-VOUS!). The following evening, my friend Kelly, whom I have never met in real life, but right along with my friend Andrea, whom I have also never met in real life, I consider a lifesaver and someone who is an instant friend and who one day I hope to meet in real life, when our kiddos are stable enough to travel without us (me?) fearing-- ANYWAY, run on sentence....restart: My friend Kelly and her husband shared their daughter's story (of living with MLT) with their church youth group. One thing she told me, later, on FB, was this : It is hard to recap it all. I feel like I barely survived it the first time. YOu know what I mean? Man I do not want to go back to where we have been.
A to the men! I don't know how we made it through the first year with Ridge, but we all survived. Right now, times are bleak. But she is so right- I do NOT want to go back to where we have been. Thank you, Lord, for bringing us this far. Carry us some more, bc today is a dark day for us.
Have a happy Mother's Day (I know, kind of bleak way to wish you happy mother's day, but I truly mean it....moms have the hardest jobs ever.)
Saturday, May 1, 2010
winner!!!
while it is sooooo true that we love her, this contest, i promise, was soooooo not rigged- sawyer picked this name out of a clump of wadded up papers with names on them.....
the cute scrapbook goes to momma of 3, one of our favorite people....
VANESSA!
congrats, friend. let me know if you want me to mail it, and where, or if you want me to bring it next time i see you. whatever is fiiine by me. fb or text me your address if i'm mailing it, though.
lots of you played that time-- thanks! i have one more prize ready but i will keep finding more! :)
the cute scrapbook goes to momma of 3, one of our favorite people....
VANESSA!
congrats, friend. let me know if you want me to mail it, and where, or if you want me to bring it next time i see you. whatever is fiiine by me. fb or text me your address if i'm mailing it, though.
lots of you played that time-- thanks! i have one more prize ready but i will keep finding more! :)
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