Happy 30th Birthday, Nate! You're sure getting old, but we still love you just the same!
Sunday, August 29, 2010
Saturday, August 14, 2010
Beckham & Baby update
Sorry for the lack in "update" posts on our hospital stay. We are home now (yeah), but we do not have the internet hooked up yet in our new place, so I am trying to update on my phone. If there are spelling and grammar mistakes, please ignore them!
Beckham was released from the hospital shortly after his Sigmoidoscopy and Endoscopy. His Sigmoidoscopy looked great with nothing alarming standing out with the camera. Biopsy's were taken anyway, just to make sure there was nothing unseen that could be affecting him. His endoscopy, however, came back abnormal, with a few things that were slightly alarming. They included swelling in both the esophagus and the upper intestines, and strange line indentations also in the esophagus. There are a few theories as to why these are in this body, but nothing will be determined until all of his biopsy's have come back. We should hopefully know those results by next week, so I will keep you all posted.
After Beck's Tuesday hospital release, I headed back up to the U of I hospital for another appointment for our new little addition. I have had two in depth ultrasounds over the last 2 weeks to check for heart and other defects, and I am happy to report that both have showed a healthy normal baby, and a health normal baby GIRL at that! And we are thrilled (especially Gwen). I will have another in depth ultrasound at 28 weeks to look again for anything suspicious, especially since Beck's heart defect was not picked up at his ultrasound when I was pregnant with him. Cross your fingers!
Hopefully we will have internet access for our next post, but until then, let's hope for no further hospital stays!
-Beckham & Co.
Beckham was released from the hospital shortly after his Sigmoidoscopy and Endoscopy. His Sigmoidoscopy looked great with nothing alarming standing out with the camera. Biopsy's were taken anyway, just to make sure there was nothing unseen that could be affecting him. His endoscopy, however, came back abnormal, with a few things that were slightly alarming. They included swelling in both the esophagus and the upper intestines, and strange line indentations also in the esophagus. There are a few theories as to why these are in this body, but nothing will be determined until all of his biopsy's have come back. We should hopefully know those results by next week, so I will keep you all posted.
After Beck's Tuesday hospital release, I headed back up to the U of I hospital for another appointment for our new little addition. I have had two in depth ultrasounds over the last 2 weeks to check for heart and other defects, and I am happy to report that both have showed a healthy normal baby, and a health normal baby GIRL at that! And we are thrilled (especially Gwen). I will have another in depth ultrasound at 28 weeks to look again for anything suspicious, especially since Beck's heart defect was not picked up at his ultrasound when I was pregnant with him. Cross your fingers!
Hopefully we will have internet access for our next post, but until then, let's hope for no further hospital stays!
-Beckham & Co.
Tuesday, August 10, 2010
A really "crappy" hospital stay
Excuse my lame attempt at humor in the title of this post. But sometimes you just have to make light of a really poop filled situation!
After an incredible Transplant Games experience (more posts to follow regarding the Games), we made it home and back to reality....or, in our case, this meant that we were back to a whole slew of boxes because of our recent move to Iowa City (I'll try to get to a post about our move as well). Now, for the record, I am NOT a fan of unpacking, and I was looking for every excuse in the book to put off the inevitable, and, sadly, I guess that Beckham took it upon himself to make sure I did not get to unpacking by unloading a whole load of crap - 17 poop filled diapers in one day -, vomiting, and spiking a fever. So, to make a long story short, Beckham, Gwen, and myself had to make a trek to the ER, where Beck was admitted (on Saturday night), and where he is still at today.
Now you might be wondering why I had to take my little Gwen to the hospital as well, and the answer to that is that Nate was at work in Des Moines, which is two hours away from Iowa City, and because we live in a new town where I don't know anyone to call to help me out. Moving bites! Also, you might be wondering what it is like to take a 4 year old and a 3 year old to the ER, while carrying a baby in my stomach, and the answer to that is....well....I sure hope that I NEVER have to do that again!
Now, back to the poop (since that is the main reason for this post...awesome). As of now, Beckham, tests negative to pretty much everything - c-diff (which he had 3 weeks ago), rotavirus, CMV, infection, virus, and so forth- and he has great labs with platelets at 415 and hemoglobin at 12.5. The only tests that have not come back is for a possibly parasite, but the doctors are almost positive that that will come back negative as well.
The plan for today is to do an Endoscopy and a Sigmoidoscopy, to check for something fishy going on in his insides. Beck will be completely out for this procedure...which I am SO thankful for. He has had 2 previous Sigmoidoscopy's, and both were while he was awake, and both were AWFUL to watch! Let's hope today's procedure goes very smooth.
That's it for now. I just heard an explosion from across the room and I have to run and change yet another poopie diaper!
-Beckham & Co.
After an incredible Transplant Games experience (more posts to follow regarding the Games), we made it home and back to reality....or, in our case, this meant that we were back to a whole slew of boxes because of our recent move to Iowa City (I'll try to get to a post about our move as well). Now, for the record, I am NOT a fan of unpacking, and I was looking for every excuse in the book to put off the inevitable, and, sadly, I guess that Beckham took it upon himself to make sure I did not get to unpacking by unloading a whole load of crap - 17 poop filled diapers in one day -, vomiting, and spiking a fever. So, to make a long story short, Beckham, Gwen, and myself had to make a trek to the ER, where Beck was admitted (on Saturday night), and where he is still at today.
Now you might be wondering why I had to take my little Gwen to the hospital as well, and the answer to that is that Nate was at work in Des Moines, which is two hours away from Iowa City, and because we live in a new town where I don't know anyone to call to help me out. Moving bites! Also, you might be wondering what it is like to take a 4 year old and a 3 year old to the ER, while carrying a baby in my stomach, and the answer to that is....well....I sure hope that I NEVER have to do that again!
Now, back to the poop (since that is the main reason for this post...awesome). As of now, Beckham, tests negative to pretty much everything - c-diff (which he had 3 weeks ago), rotavirus, CMV, infection, virus, and so forth- and he has great labs with platelets at 415 and hemoglobin at 12.5. The only tests that have not come back is for a possibly parasite, but the doctors are almost positive that that will come back negative as well.
The plan for today is to do an Endoscopy and a Sigmoidoscopy, to check for something fishy going on in his insides. Beck will be completely out for this procedure...which I am SO thankful for. He has had 2 previous Sigmoidoscopy's, and both were while he was awake, and both were AWFUL to watch! Let's hope today's procedure goes very smooth.
That's it for now. I just heard an explosion from across the room and I have to run and change yet another poopie diaper!
-Beckham & Co.
Monday, August 2, 2010
Video and Print of our meeting with the donor family...
Once we have some time we will put some of this experience in our own words, but until then here is a news story with video that was done on our meeting with the Campbell's.
"2 Families United by 1 Heart"
"2 Families United by 1 Heart"
And here is some reading...
Odessa File
Today Beckham runs his race...we will definitely keep things updated as we can (busy few days here in Madison).
P.S - Please excuse my HUGE pregnant body on the video!
P.S - Please excuse my HUGE pregnant body on the video!
Sunday, August 1, 2010
First hug!
We're busy here at the Transplant Olympic Games, but I wanted to break away and give you all a sneak peak into our happenings!
Beck got his first hug from his incredible donor mom, Holly. It was priceless, perfect, and worth the wait (and talk about a tear jerker...I still can't look at this picture without bawling).
Happy Birthday to my incredibe miracle three year old, Beckham! What a perfect present for you to receive for your Birthday! We love you!
Monday, July 19, 2010
An amazing fright....please read!
The last couple of weeks have been filled with a fair amount of stress as the hustle and bustle of getting our house ready to rent, packing for our move to Iowa City, and all of our other normal family obligations, have consumed our time, thoughts, and money. Through all of this we have felt an overwhelming urge to scream "can't we have a break?" or "are you serious?" when another thing goes wrong. But, luckily, we have been comforted and fueled by a knowledge that this will all end, that this will all be over soon, and that we have something so much bigger, so much more important, so exciting, and so....umm....amazingly frightening, coming up for our family.
In less than two weeks we will travel as a family to Madison, WI, where Beckham will compete (well, kiddie compete) in the Transplant Olympic Games, and where we will, for the first time, come face to face with the donor family of Beckham's heart, the Campbell's.
About a month ago I was able to speak to Holly - the donor mom of Beckham's heart - for the first time on the phone. I don't have the proper words to say how amazing and neat our conversation was, so the best word that I can use to describe it is "special." And boy was it special! Most of the conversation was filled with tears, which was to be expected (we are females!), but the best part was that Beckham was able to get on the phone and say a happy "hi Ha-wee (Holly)," and "hi Handy (Andy)," to both of the donor parents. It was awesome, to say the least!
Holly has been chosen to sing at the Opening Ceremonies for the Transplant Olympic Games, where they would like Beckham to be on stage while she does so (talk about a HUGE tear jerker). The song she has chosen is the last song that she sang to Jake before he was taken to give his precious life saving gifts, and a song that I used to sing to Beckham right after his transplant to comfort him through his pain episodes and drug withdrawals (we did not know before that we sang the same song to our sons). Please view the link to her video submission below. I hope it touches your heart as much as it has touched ours.
We can't wait to meet you, Campbell's! And while we know this is only the beginning of our personal meetings, I have come to a complete knowledge that our little family is so blessed and so changed to have your family as part of our lives, not only because you gave us the precious gift of Jake's heart that beats so strong in Beck's chest, but because you have given us a complete view of what this life is all about - love, endurance, acceptance, patience, and joy.
In less than two weeks we will travel as a family to Madison, WI, where Beckham will compete (well, kiddie compete) in the Transplant Olympic Games, and where we will, for the first time, come face to face with the donor family of Beckham's heart, the Campbell's.
About a month ago I was able to speak to Holly - the donor mom of Beckham's heart - for the first time on the phone. I don't have the proper words to say how amazing and neat our conversation was, so the best word that I can use to describe it is "special." And boy was it special! Most of the conversation was filled with tears, which was to be expected (we are females!), but the best part was that Beckham was able to get on the phone and say a happy "hi Ha-wee (Holly)," and "hi Handy (Andy)," to both of the donor parents. It was awesome, to say the least!
Holly has been chosen to sing at the Opening Ceremonies for the Transplant Olympic Games, where they would like Beckham to be on stage while she does so (talk about a HUGE tear jerker). The song she has chosen is the last song that she sang to Jake before he was taken to give his precious life saving gifts, and a song that I used to sing to Beckham right after his transplant to comfort him through his pain episodes and drug withdrawals (we did not know before that we sang the same song to our sons). Please view the link to her video submission below. I hope it touches your heart as much as it has touched ours.
We can't wait to meet you, Campbell's! And while we know this is only the beginning of our personal meetings, I have come to a complete knowledge that our little family is so blessed and so changed to have your family as part of our lives, not only because you gave us the precious gift of Jake's heart that beats so strong in Beck's chest, but because you have given us a complete view of what this life is all about - love, endurance, acceptance, patience, and joy.
Saturday, July 17, 2010
Beckham update
It's about time that I posted a "Beckham update" and let you all know how this little guy is doing. So to get right to the point, Beck is doing great....but it has sure taken a lot of time and a lot of meds to get to this point. I'll explain.
After Beckham finished his 4 weeks of Rituxin, we (and his hematologist) were hoping to see much less bruising and some signs that the med had done its job. Unfortunately, no such luck. In fact, his bruising was worsening, and to make matters worse, his iron levels were dropping like crazy. It was decided at that point to give Beck a couple more weeks to respond to the Rituxin, but in the meantime, receive 4 weeks of IV iron.
After 3 weeks of iron, Beck's iron levels had risen, but he looked terrible, with bruises from head to toe, and he was also starting to have trouble with bleeding from his PICC line (not a good sign). When I took him into hematology later that week (this was 3 weeks ago), it was decided to put Beckham back on steroids (boo) and to give him a dose of IVIG. Luckily, the steroid dose was only a 4 day "blast" - 4 days of a super duper high steroids - instead of the normal 2 to 8 week steroid protocol. This meant less moodiness and no weight gain!
After the steroid infusion, Beckham, seemed to respond well....until I decided to play "nurse" and mess with his PICC line, causing it to bleed like crazy and almost come completely out of his arm (seriously, I am mom of the century). This required me to run him into Nate's ER, where Nate tried desperately to save his PICC line, but we eventually had to take him back to Blank Children's Hospital for a new line placed (which they were luckily able to get in the same hole as his previous one - meaning no extra pokes!). Awesome, Kim, awesome!
The great news is that as of this week, Beckham, is finally showing signs of having his antibody under control. His bruising is very minimal and he is helmet-less! Yeah! He is, however, super immuno suppressed, and we are being as careful as always. Let's hope to keep this kiddo healthy so we can make our big move to Iowa City, and for our trip in a few weeks to the Transplant Olympic games, where we are going to meet the amazing donor family of Beck's heart. I guess that means lots of sanitizing wipes and hand sanitizer!
Until then....
-Beckham & Co.
Saturday, July 10, 2010
Happy Birthday, Gwen!
My beautiful, little girl recently turned 4....well, that is if you count June 18th as "recently." I know, I know - I am way behind on posts. Things are a little crazy in the Scadlock household with fixing up our place to rent, packing to move, taking Beck to his endless hospital appointments each week, and having to be on semi bed rest because I have Placenta Previa. Yikes! We're all doing great though, and I promise that I will update soon with a summary of the last couple of weeks. But for now, I have to do a little shout out to my 4 year old princess.
How did my little Gwen grow up so fast? I still remember when she was born and how excited we were to finally have a baby of our own. Nate, especially, was in heaven - he was able to sit in the hospital, holding his new born daughter, and watch the World Cup at the same time. To him, that was Heaven (such a typical male!). And now, 4 years later, she still brings us just as much excitement and joy.
Here's a couple pictures of her little party (I tried to upload a video of the party, but Blogger hates me right now and is not letting me. Sorry!).
Gwen's Scooby Doo cake. She loves Scooby Doo!
Gwen blowing out the candles (with a little help from Beckham!).We love you, Gwen! Thanks for being ours. You have no idea how much you have blessed us with in your four years of life!
Wednesday, June 16, 2010
Wednesday, June 9, 2010
Wow, what a Wednesday
It seems that our entire family had something happen today, something that could be explained as necessary, rarely ever happens, monumental, and life changing. I'll explain....
Necessary:
Beck was due to receive his last Rituxin infusion yesterday, but because of numerous (I don't use that term lightly) failed attempts by the hem/onc nurses, life flight, and even the PICC line team, to get a vein for an IV, his treatment was postponed until today. Beck is literally a walking pin cushion right now, and has almost as many needle marks on his body as he does bruises (and that is a lot, considering how many bruises he has!). Because of this, a decision was made to skip right over the IV and go for a PICC line instead. For this, they put Beckham out completely instead of just sedating him, and they only had to poke him once to get the PICC line in. Nice! Why did they not do a PICC line at the beginning of his treatments instead of waiting until his last one, you might wonder? Well, I wonder the same thing! I actually asked for a PICC line in the beginning, but was told that it was not necessary because they figured that it would be easier to get an IV in for each dose. I guess they should have listened to me and saved Beckham from getting poked around 30 times in the last 4 weeks. Poor kiddo.
Right now, Nate and Beckham, are in the hospital where Beck is receiving his last dose of Rituxin. They were supposed to stay overnight, but after some smooth talking by my husband, they are going to come home late tonight. The PICC line will be left in Beck's arm for awhile...and I am not complaining about that! Now all we have to do is wait and see if this treatment is even working. We have noticed a small lessening in the amount of his bruising (very small), and he does, once again, test negative for Hemolytic Anemia (whew!), so we do know that it is doing something positive. We still have a little way to go, though. We'll get there!
Rarely ever happens:
This might not seem like such a huge event, but for our little Gwen, this meant everything because it is something that rarely ever happens. Gwen had a play date today....and she loved it! Because of the fact that Beck has been too sick to be around other children for most of his life, we have had to do the same for our little girl. At first it did not seem to affect her, but as she has gotten older, she has wanted to play with friends so much more. Today, my awesome friend, Tiffany, came over to watch my kiddos for a little bit, and she brought her adorable son, Jakob, whom Gwen fell in love with. She was the happiest girl for the rest of the day after playing with him, and I know that this meant everything to her. Thanks, Tiff and Jakob!
Monumental:
Today was Nate's first day of school for his Nurse Practitioner doctorate (we're so proud of you, Nate)! He left a little after 6:00 AM to get to class in Iowa City (2 hours away), and then rushed home when he was done so that he could take Beck to the hospital.
Why, you ask, did I not take Beck to the hospital? Well, I have 2 very good reasons. 1 - I have a nasty cold and there is NO way that I would bring it into a hospital full of sick kiddos, and risk getting them sick or sicker. And 2 - I had an appointment that I could not put off because I was getting the below checked out.....
Life changing:
That's right folks, our big SURPRISE Scadlock baby #3 is scheduled to arrive at our house in December, and we are thrilled...and scared! Nate and I have talked about having another baby for a long time, but it seemed like whenever the subject was brought up, it would always end with, "well, let's just wait another year and see if Beck is stable then." After 2 years of this talk, we have come to the realization that Beck is probably not going to get totally stable, or stable like a normal child. And that's okay! So I just hoped and prayed that if there was another little one up there for us, that it would just surprise us....and boy, did it ever! We are all over joyed with this news...though I fear that Beckham will not like being displaced as the baby. He milks up being the baby with every chance we get (don't worry, we love it!)
I am being watched really closely right now and have already had 2 ultrasounds (with 2 or 3 more scheduled) and a slew of blood work to check for defects, not only in the heart, but blood and other disorders. So far everything looks normal. And we'll just hope and pray for the best.
So, at the end of a very long Wednesday, good night from all 4 (and 1/2) of us!
-Beckham & Co.
Necessary:
Beck was due to receive his last Rituxin infusion yesterday, but because of numerous (I don't use that term lightly) failed attempts by the hem/onc nurses, life flight, and even the PICC line team, to get a vein for an IV, his treatment was postponed until today. Beck is literally a walking pin cushion right now, and has almost as many needle marks on his body as he does bruises (and that is a lot, considering how many bruises he has!). Because of this, a decision was made to skip right over the IV and go for a PICC line instead. For this, they put Beckham out completely instead of just sedating him, and they only had to poke him once to get the PICC line in. Nice! Why did they not do a PICC line at the beginning of his treatments instead of waiting until his last one, you might wonder? Well, I wonder the same thing! I actually asked for a PICC line in the beginning, but was told that it was not necessary because they figured that it would be easier to get an IV in for each dose. I guess they should have listened to me and saved Beckham from getting poked around 30 times in the last 4 weeks. Poor kiddo.
Right now, Nate and Beckham, are in the hospital where Beck is receiving his last dose of Rituxin. They were supposed to stay overnight, but after some smooth talking by my husband, they are going to come home late tonight. The PICC line will be left in Beck's arm for awhile...and I am not complaining about that! Now all we have to do is wait and see if this treatment is even working. We have noticed a small lessening in the amount of his bruising (very small), and he does, once again, test negative for Hemolytic Anemia (whew!), so we do know that it is doing something positive. We still have a little way to go, though. We'll get there!
Rarely ever happens:
This might not seem like such a huge event, but for our little Gwen, this meant everything because it is something that rarely ever happens. Gwen had a play date today....and she loved it! Because of the fact that Beck has been too sick to be around other children for most of his life, we have had to do the same for our little girl. At first it did not seem to affect her, but as she has gotten older, she has wanted to play with friends so much more. Today, my awesome friend, Tiffany, came over to watch my kiddos for a little bit, and she brought her adorable son, Jakob, whom Gwen fell in love with. She was the happiest girl for the rest of the day after playing with him, and I know that this meant everything to her. Thanks, Tiff and Jakob!
Monumental:
Today was Nate's first day of school for his Nurse Practitioner doctorate (we're so proud of you, Nate)! He left a little after 6:00 AM to get to class in Iowa City (2 hours away), and then rushed home when he was done so that he could take Beck to the hospital.
Why, you ask, did I not take Beck to the hospital? Well, I have 2 very good reasons. 1 - I have a nasty cold and there is NO way that I would bring it into a hospital full of sick kiddos, and risk getting them sick or sicker. And 2 - I had an appointment that I could not put off because I was getting the below checked out.....
Life changing:
That's right folks, our big SURPRISE Scadlock baby #3 is scheduled to arrive at our house in December, and we are thrilled...and scared! Nate and I have talked about having another baby for a long time, but it seemed like whenever the subject was brought up, it would always end with, "well, let's just wait another year and see if Beck is stable then." After 2 years of this talk, we have come to the realization that Beck is probably not going to get totally stable, or stable like a normal child. And that's okay! So I just hoped and prayed that if there was another little one up there for us, that it would just surprise us....and boy, did it ever! We are all over joyed with this news...though I fear that Beckham will not like being displaced as the baby. He milks up being the baby with every chance we get (don't worry, we love it!)
I am being watched really closely right now and have already had 2 ultrasounds (with 2 or 3 more scheduled) and a slew of blood work to check for defects, not only in the heart, but blood and other disorders. So far everything looks normal. And we'll just hope and pray for the best.
So, at the end of a very long Wednesday, good night from all 4 (and 1/2) of us!
-Beckham & Co.
Thursday, May 27, 2010
Rituxin update #2
This week's Rituxin infusion went a lot smoother, with zero reactions to the drug, and zero hospital stays. I'll take that! Beck was pretty ticked through out the process, but soon learned that the infusion center has a HUGE stash of goodies, to which he took full advantage of. I'm really liking this "outpatient" experience, but it does make for a long day because it takes around 8 hours for the drug to go in. During that time, Beck would only watch one Wiggles DVD over and over again. I brought quite a few others to choose from, but he would only watch the same one. Next week I will be purposely forgetting that DVD!
The only "bummer" news that I have is that Beck has tested positive for AIHA (Hemolytic Anemia). Currently, his hemoglobin is at 9.0 (normal is 10.5 - 15.0) and his platelets are at 350. At least he is getting the right treatment for both the Glanzmann's Thrombasthenia, and the AIHA. Hopefully we will start seeing results soon!
One last thing to post is that we'll be on the radio today at 3:00 PM, telling Beckham's story for the Children's Miracle Network radio-a-thon for Star 102.7. You can listen on the internet at www.star1025.com.
-Beckham & Co.
The only "bummer" news that I have is that Beck has tested positive for AIHA (Hemolytic Anemia). Currently, his hemoglobin is at 9.0 (normal is 10.5 - 15.0) and his platelets are at 350. At least he is getting the right treatment for both the Glanzmann's Thrombasthenia, and the AIHA. Hopefully we will start seeing results soon!
One last thing to post is that we'll be on the radio today at 3:00 PM, telling Beckham's story for the Children's Miracle Network radio-a-thon for Star 102.7. You can listen on the internet at www.star1025.com.
-Beckham & Co.
Friday, May 21, 2010
Rituxin update
Snapped this on the way home from the hospital. He was chewing on the straw beforehand and then fell asleep. Love it!
The hard part now is waiting for results. With the treatment last year we could view his results with labs - platelets rising, hemoglobin rising -, but this time, Beck, already has normal levels, and we will just have to watch him physically for less bruising. BOO! 3 more Rituxin treatments are planned in the next three weeks (every Tuesday for a month) with the possibility of an IVIG treatment thrown in there. We are hoping to do all of this as an outpatient, and in Des Moines.
Just a couple of pics to show the effects of this disease:
I snapped this of his legs while on our daily walk. This only shows a portion of his legs, and trust me, they look much worse on the other sides!
Not very clear (how do you get a 2 year old to hold still for a pic?), but it shows when he burst an entire blood vessel in his head.All of these Rituxin treatments will severally immuno supress our little guy, which means LOCK DOWN! Yeah (ha ha)! Truthfully, this is nothing new to us, but I was loving the fact that I could take Beck to the store and to church, and that we were hoping for a vacation to visit family and to meet the donor family at the Transplant Games. Big bummer. Oh well. There's always next year! And, who knows, maybe our Beckham with surprise us and do really well this time around. Here's to hoping and praying!
-Beckham & Co.
Friday, May 14, 2010
A new diagnosis
I guess that the title of this post says it all....and the "all" is not the best news.
When I last left off with a "Beckham update," he had just gotten out of the hospital after an IVIG treatment, and since then he has stayed stable and had pretty good labs with platelets and hemoglobin in mostly normal ranges (yeah). We were thrilled with this news, but I became concerned when he continued to bruise (and bruise like he did when his platelets were 10 or below), but the odd part was that while he bruised horribly, he had the ability to stop bleeding. He actually would bruise so badly that he would burst entire blood vessels (not normal and not good). I finally got fed up when his home health nurse drew blood on Monday and his labs once again came back normal. She agreed with me that he did not look normal , despite his lab results, and so I took the initiative and called his hematologist personally. Beck's hematologist (who is fabulous!) became concerned when I told her his symptoms and she asked us to come in immediately. Once there, she looked at Beck, called his transplant doctor, and then sent us right up to Iowa City for a special sort of blood test (platelet aggregation test). The blood test came back "abnormal," which basically means "positive" for a new diagnosis. And that is where we are now.
Beckham now has a new condition called Glanzmann's Thrombasthenia. From my understanding (and what the doctor told me), Beck's antibodies are getting smart and have learned to attack his platelets in a different manner - attacking the protein layer of his platelets instead of destroying the platelets themselves. This, again, is a very rare disorder, and a disorder that requires special treatments. The plan for now is to check Beckham into the hospital on Tuesday for a dose of Rituxin, which will be administered weekly for the next little while. There is the possibility of more treatments, but we will cross that bridge when we get there.
Beck is back in his helmet and has strict instruction to be VERY careful and avoid any sort of falls or situations that would cause further bruising. If he does bruise badly, than we are instructed to head strait the the ER. This is all fine and dandy except for the fact that Beck is NUTS and loves to jump, tackle, run, and just act like a normal boy. I guess that means good luck to us!
That's all the info I have for now. I will keep you posted on anything new!
-Beckham & Co.
When I last left off with a "Beckham update," he had just gotten out of the hospital after an IVIG treatment, and since then he has stayed stable and had pretty good labs with platelets and hemoglobin in mostly normal ranges (yeah). We were thrilled with this news, but I became concerned when he continued to bruise (and bruise like he did when his platelets were 10 or below), but the odd part was that while he bruised horribly, he had the ability to stop bleeding. He actually would bruise so badly that he would burst entire blood vessels (not normal and not good). I finally got fed up when his home health nurse drew blood on Monday and his labs once again came back normal. She agreed with me that he did not look normal , despite his lab results, and so I took the initiative and called his hematologist personally. Beck's hematologist (who is fabulous!) became concerned when I told her his symptoms and she asked us to come in immediately. Once there, she looked at Beck, called his transplant doctor, and then sent us right up to Iowa City for a special sort of blood test (platelet aggregation test). The blood test came back "abnormal," which basically means "positive" for a new diagnosis. And that is where we are now.
Beckham now has a new condition called Glanzmann's Thrombasthenia. From my understanding (and what the doctor told me), Beck's antibodies are getting smart and have learned to attack his platelets in a different manner - attacking the protein layer of his platelets instead of destroying the platelets themselves. This, again, is a very rare disorder, and a disorder that requires special treatments. The plan for now is to check Beckham into the hospital on Tuesday for a dose of Rituxin, which will be administered weekly for the next little while. There is the possibility of more treatments, but we will cross that bridge when we get there.
Beck is back in his helmet and has strict instruction to be VERY careful and avoid any sort of falls or situations that would cause further bruising. If he does bruise badly, than we are instructed to head strait the the ER. This is all fine and dandy except for the fact that Beck is NUTS and loves to jump, tackle, run, and just act like a normal boy. I guess that means good luck to us!
That's all the info I have for now. I will keep you posted on anything new!
-Beckham & Co.
Saturday, April 24, 2010
2010 C.A.R.E. 5K & 10K Run and Walk
Anyone in the mood to walk or run to raise awareness for organ donation? If so, please join us on May 1st at Centennial Park in Waukee, for the 2010 C.A.R.E. 5K & 10K Run and Walk, sponsored by My Angel Foundation. For info on the race and to register please click here. Please let me know if you sign up because I would love a walking buddy (I'm pushing the kiddos in the stroller) and Nate would love a running buddy.
Click here to view an article that I wrote (the same one that was published last year by the Utah Baby Guide) about Beckham, that is also on the My Angel Foundation website.
Hope to see you there!
-Beckham & Co.
Click here to view an article that I wrote (the same one that was published last year by the Utah Baby Guide) about Beckham, that is also on the My Angel Foundation website.
Hope to see you there!
-Beckham & Co.
Sunday, April 18, 2010
A few requests!!
Just a post to PLEASE ask for prayers and thoughts for some friends and family that could really use them!
This is my adorable brother-in-law, Devin. This picture pretty much sums up who Devin is and how he changes lives with just his smile. Devin was born with Cerebral Palsy, and has recently been in the hospital for the last couple of week battling an infection, a fracture that has required a surgery where screws and plates were placed in his hip, and horribly painful seizure that happen as often as every 3-4 minutes. Please remember him in your prayers! We sure love this little guy more than we can even express and can't wait to see his smiling face again!
This is our University of Iowa heart transplant buddy, Bryce (carepages.com - BryceDraisy). To put it plainly, Bryce rocks. He is one tough 12 year old who always has a smile on his face (at least he does whenever I have seen him!). Bryce is currently waiting for his second heart transplant because of rejection and many other issues with his first transplanted heart. He is on the LVAD for the second time and is having some serious complications. Please remember him in your prayers as well. Please also remember his family. He has one of the most amazing moms that I have ever met!
This is little Miracle Mason (isn't he one of the cutest little kids you have ever seen?). He is from our home state of Utah and just received his angel heart transplant on Easter Sunday. He is currently rejecting his new heart because of antibodies that he received treatment for before transplantation. He is receiving Plasmapheresis (the treatment that was so HARSH on Beckham) and many other treatments to try and stop his rejection. Please pray for this little sweetie. He received his transplant at Stanford, and I know that Mason and his mom would LOVE to get home to Utah and see the rest of their family.
Thank you all!
-Kim
Sunday, April 11, 2010
a BIG rise in platelets and a BIG thank you!
After labs were drawn on Thursday, and given Beckham's horribly bruised appearance, I was a little nervous that there might have been a drop in his slightly improved platelet count. Good thing I was very wrong (these are the moments that I love to be wrong), and very wrong at that, as his number that came back was 287!
The great news is that he, once more, responded to the IVIG, and that he will not have to have a more drastic treatment at this time. The good news is that his counts are high enough that he does not have to wear his helmet anymore. The not-so-good news is that he still looks pretty rough - covered in bruises and a very pale coloring - but, we'll be happy to take that in place of something else! Beck will actually continue to bruise for a little while because, even though his platelets are in normal ranges, his body is still behind and still thinks they are low. Weird, right? I was actually scared to take him and Gwen to the park yesterday because I did not want someone to see him and assume that he is abused instead of suffering from a blood disorder.
I couldn't end this post without saying a HUGE thank you to everyone that commented, called, text, e-mailed, and so forth about my last post! It meant more than I can say and then some! Please know that I have NO intention of going private or canceling this blog! I enjoy blogging too much (never thought I'd admit that!) and I think private blogs are a pain (no offense to my private blog friends!).
Thank you all again!
-Kim
The great news is that he, once more, responded to the IVIG, and that he will not have to have a more drastic treatment at this time. The good news is that his counts are high enough that he does not have to wear his helmet anymore. The not-so-good news is that he still looks pretty rough - covered in bruises and a very pale coloring - but, we'll be happy to take that in place of something else! Beck will actually continue to bruise for a little while because, even though his platelets are in normal ranges, his body is still behind and still thinks they are low. Weird, right? I was actually scared to take him and Gwen to the park yesterday because I did not want someone to see him and assume that he is abused instead of suffering from a blood disorder.
I couldn't end this post without saying a HUGE thank you to everyone that commented, called, text, e-mailed, and so forth about my last post! It meant more than I can say and then some! Please know that I have NO intention of going private or canceling this blog! I enjoy blogging too much (never thought I'd admit that!) and I think private blogs are a pain (no offense to my private blog friends!).
Thank you all again!
-Kim
Wednesday, April 7, 2010
Addressing an Issue
I am a little too lazy to write two blog posts in one day (way too much work, and way too much time on the computer)...but today is different. I posted a "Beckham" update this morning, letting everyone know about our hospital visit earlier this week, and I am now writing another post to address an issue that I feel could not wait until tomorrow.
I received and "anonymous" comment on a previous post that has deeply affected and hurt my feelings - I actually can barely type this post because my tears are blurring my vision and my hands are shaking so. The comment may not have been intended to hurt my feelings (or it may have), but it did...so much. Whoever wrote this comment, I am not trying to attack or single you out, I just want to address what you wrote and let you know how I feel about my sweet little girl. And since you wrote this as anonymous, I cannot contact you directly.
Here is the comment:
"Don't you have 2 kids? Sometime I feel like you forget about your other one and perhaps she might just be a bit resentful as she gets older and realizes life revolves around your son."
First off: I want to apoligize for ever leading any reader to think that my sweet and perfect daughter, Gwen, is any less important than Beckham. She has been the glue that has held us together through all that we have been through with Beckham. I know that she was sent to us specifically to guide us and lift us, and remind us that there is always hope in every situation. We love her more than we can even express...and she knows that! Actually, after I read the above comment this morning, I went to my Gwen and cried and hugged her and asked if she knew that I loved her. Her response was (with her adorable smile) "yeah mommy, I know that." She then ran to the counter to get me a tissue and said "here, this will make you feel better."
Second: I have tried to make it clear in both the title of this blog and the description that is below Beckham's heath info, that this blog is intended for the use of updating others on Beckham's health and that most of the posts will be about Beckham. This is why we started this blog in the first place - to let others know about Beckham because we do not have the ability to update everyone in person. I also write this blog as a journal for Beckham's health, and as a guide for other parents whose children struggle with similar issues.
Third: I want you to know that as a mother, and the mother of a chronically sick child, that I have made it my sole purpose to make sure that my Gwen knows that she is not and will never be second to Beckham because she was born healthy. Gwen, has suffered greatly through the last couple of years because she has to watch her brother suffer, has had to be separated time and time again from her parents because they are in the hospital with Beck, has had to stay inside, away from the outside world so that she does not bring in an illness, and has had to do endure everything over and over again. And through all of it, she has weathered it like no other. She is truly amazing. If I have failed to mention her amazing strength through all of this, I greatly apologize. A big part of why I have not posted more about Gwen through all she has been through, is because my heart is broken each time I watch her suffer, and writing it on the blog, along with all of Beckham's issues, is a very daunting task (to say the least).
I have debated if I should continue this blog or if I should go private. I do not want to do this, but I do not want anyone to think that I am not trying my hardest to make sure my Gwen knows that she is loved. My heart is truly broken over this comment and I want to make sure that everyone out there knows that it was NEVER my intention to give off the above impression. I am truly, truly sorry for doing so.
To my Gwen, I love your crazy, sassy, adorable self so much. Thank you for being mine. You make me smile even when I feel like there is nothing to smile about. I am so glad that I get to have you forever!
-Kim
I received and "anonymous" comment on a previous post that has deeply affected and hurt my feelings - I actually can barely type this post because my tears are blurring my vision and my hands are shaking so. The comment may not have been intended to hurt my feelings (or it may have), but it did...so much. Whoever wrote this comment, I am not trying to attack or single you out, I just want to address what you wrote and let you know how I feel about my sweet little girl. And since you wrote this as anonymous, I cannot contact you directly.
Here is the comment:
"Don't you have 2 kids? Sometime I feel like you forget about your other one and perhaps she might just be a bit resentful as she gets older and realizes life revolves around your son."
First off: I want to apoligize for ever leading any reader to think that my sweet and perfect daughter, Gwen, is any less important than Beckham. She has been the glue that has held us together through all that we have been through with Beckham. I know that she was sent to us specifically to guide us and lift us, and remind us that there is always hope in every situation. We love her more than we can even express...and she knows that! Actually, after I read the above comment this morning, I went to my Gwen and cried and hugged her and asked if she knew that I loved her. Her response was (with her adorable smile) "yeah mommy, I know that." She then ran to the counter to get me a tissue and said "here, this will make you feel better."
Second: I have tried to make it clear in both the title of this blog and the description that is below Beckham's heath info, that this blog is intended for the use of updating others on Beckham's health and that most of the posts will be about Beckham. This is why we started this blog in the first place - to let others know about Beckham because we do not have the ability to update everyone in person. I also write this blog as a journal for Beckham's health, and as a guide for other parents whose children struggle with similar issues.
Third: I want you to know that as a mother, and the mother of a chronically sick child, that I have made it my sole purpose to make sure that my Gwen knows that she is not and will never be second to Beckham because she was born healthy. Gwen, has suffered greatly through the last couple of years because she has to watch her brother suffer, has had to be separated time and time again from her parents because they are in the hospital with Beck, has had to stay inside, away from the outside world so that she does not bring in an illness, and has had to do endure everything over and over again. And through all of it, she has weathered it like no other. She is truly amazing. If I have failed to mention her amazing strength through all of this, I greatly apologize. A big part of why I have not posted more about Gwen through all she has been through, is because my heart is broken each time I watch her suffer, and writing it on the blog, along with all of Beckham's issues, is a very daunting task (to say the least).
I have debated if I should continue this blog or if I should go private. I do not want to do this, but I do not want anyone to think that I am not trying my hardest to make sure my Gwen knows that she is loved. My heart is truly broken over this comment and I want to make sure that everyone out there knows that it was NEVER my intention to give off the above impression. I am truly, truly sorry for doing so.
To my Gwen, I love your crazy, sassy, adorable self so much. Thank you for being mine. You make me smile even when I feel like there is nothing to smile about. I am so glad that I get to have you forever!
-Kim
Update 4/7/10
I'm sorry for waiting so long to update on our little guy. We've had a busy couple of days and I have not found the time to do a quick update.
Short version:
We tried to do the outpatient hem/onc clinic for Beck's IVIG infusion, but ended up as inpatients anyway. After a few ups and downs, we are now home and doing well.
Long version:
I checked Beck into the outpatient clinic on Monday morning and everything was going great - only one poke to get an IV in, meds arrived on time, and Beck was doing well and tolerating everything thus far. But when they started to infuse the meds, Beck, let out a huge scream and grabbed at his IV site. After this happened over and over again, there was no choice but to pull his IV because, obviously, it was really hurting him. The good news was that he felt much better when the IV was pulled, the bad news was that after 8 attempts to place and IV, one was finally able to be put in his head (and that was with life flight placing the IV). By this time, it was the late afternoon and with the infusion of the IVIG was slated to finished around 7:00 PM, and the difficulty in placing his head IV (they did not want to lose this IV site and have to poke around for another one), it was decided to keep us in the hospital.
(This is Beckham after his multiple IV pokes. He took he a really great nap afterward!)
On Tuesday morning labs were checked and showed that Beck's platelets had risen to 87 (we haven't seen that high of a number in over 2 months!), with his hemoglobin hanging out in the 9's. With that, the hem/onc doctor decided to do only one more IVIG treatment (the original plan was to do 5 days of treatments) and then send us home later that day. Sadly, by the time the IVIG arrived, Beck had pulled his IV out and life flight had to be called back in for another round of poking around his body for a suitable vein. Luckily, another scalp vein was found, and our little guy was saved from become a pin cushion for the second day in a row. He finished treatment around 6:00 PM and we were sent home soon after. We won't know his platelet counts until tomorrow, but I will try really hard to keep you all posted.
A couple of side notes:
I did have a long talk with the hematologist about Evans Syndrome and what Beck's life will be like in the future. She did tell me that Evans Syndrome kiddos can live normal lives and can do most everything that others can do, but to expect lots of ups and downs in his labs, especially his platelets. She did say, however, that she still believes that his syndrome is related to his anti-rejection drugs. I actually rolled my eyes at this - not because I was annoyed, but because this is a NEVER ending debate between the transplant team and the hem/onc team - and told her that I don't know what to think. Only time will tell (though, I am leaning more towards Evans Syndrome in general than Prograf induced Evans Syndrome).
One thing the hematologist did suggest is that we try doing a monthly IVIG on Beckham, to try and stop the symptoms even before they start. I am actually taking this into consideration, but I first want to see how long it takes Beck to relapse after this last ITP episode. Our insurance is going to LOVE (ha ha) us if we decide to do a monthly IVIG because each IVIG dose is around $15,000. Yikes! All I can say, is that I am so grateful for insurance.
We'll keep you posted on any changes throughout the week.
Till then....
-Beckham & Co.
Short version:
We tried to do the outpatient hem/onc clinic for Beck's IVIG infusion, but ended up as inpatients anyway. After a few ups and downs, we are now home and doing well.
Long version:
I checked Beck into the outpatient clinic on Monday morning and everything was going great - only one poke to get an IV in, meds arrived on time, and Beck was doing well and tolerating everything thus far. But when they started to infuse the meds, Beck, let out a huge scream and grabbed at his IV site. After this happened over and over again, there was no choice but to pull his IV because, obviously, it was really hurting him. The good news was that he felt much better when the IV was pulled, the bad news was that after 8 attempts to place and IV, one was finally able to be put in his head (and that was with life flight placing the IV). By this time, it was the late afternoon and with the infusion of the IVIG was slated to finished around 7:00 PM, and the difficulty in placing his head IV (they did not want to lose this IV site and have to poke around for another one), it was decided to keep us in the hospital.
(This is Beckham after his multiple IV pokes. He took he a really great nap afterward!)
A couple of side notes:
I did have a long talk with the hematologist about Evans Syndrome and what Beck's life will be like in the future. She did tell me that Evans Syndrome kiddos can live normal lives and can do most everything that others can do, but to expect lots of ups and downs in his labs, especially his platelets. She did say, however, that she still believes that his syndrome is related to his anti-rejection drugs. I actually rolled my eyes at this - not because I was annoyed, but because this is a NEVER ending debate between the transplant team and the hem/onc team - and told her that I don't know what to think. Only time will tell (though, I am leaning more towards Evans Syndrome in general than Prograf induced Evans Syndrome).
One thing the hematologist did suggest is that we try doing a monthly IVIG on Beckham, to try and stop the symptoms even before they start. I am actually taking this into consideration, but I first want to see how long it takes Beck to relapse after this last ITP episode. Our insurance is going to LOVE (ha ha) us if we decide to do a monthly IVIG because each IVIG dose is around $15,000. Yikes! All I can say, is that I am so grateful for insurance.
We'll keep you posted on any changes throughout the week.
Till then....
-Beckham & Co.
Saturday, April 3, 2010
Attention Utah County readers...
As many of you know Nate's dad owns a restaurant in Salt Lake called Scaddy's. Well they just opened a new store in Lehi, UT.
Hope you can all make it out. The food is great.
You can find it at:
1750 W Main St
Lehi, UT
Also, you can become a fan on Scaddy's Facebook site.
To make it so this doesn't look like a completely unrelated advertisement I thought I'd put in a picture of Beckham showing his Scaddy's support when he was still on the steroids.
(We would have done an updated picture, but he has a pretty big shiner right now)
Hope you can all make it out. The food is great.
You can find it at:
1750 W Main St
Lehi, UT
Also, you can become a fan on Scaddy's Facebook site.
To make it so this doesn't look like a completely unrelated advertisement I thought I'd put in a picture of Beckham showing his Scaddy's support when he was still on the steroids.
(We would have done an updated picture, but he has a pretty big shiner right now)Wednesday, March 31, 2010
Teaser/The game plan
Beckham is a very typical 2 year old - naughty, rambunctious, sweet, playful, and a big tease. Apparently, and sadly, so are his platelets (except for the rambunctious and sweet part!) as they have chosen to drop again to 24. What teasers to raise to 48 and then plummet right back down. Not cool. Not cool at all. His hemoglobin is hanging out at 9 even, with a hematocrit of 27, and red blood cells at 3.4. Obviously his levels are not wanting to rise on their own (which I did not expect they would) so it's time to do something about it.
The game plan: IVIG! The reason for the IVIG: because I asked for Beckham to receive IVIG before we go all the way to Rituxin. I just wanted to try something a little less drastic and see if his little body will respond to it. Thus far, Beckham, has responded to IVIG 50% of the time. Not the best record, but it's better than zero! If he does not respond, then Rituxin will be the next drug of choice. The IVIG will be started on Monday (unless his levels come back super low on Thursday) and we are going to attempt to do them through an outpatient clinic. I'm a little nervous how this will go because it takes hours to infuse the IVIG, plus vitals have to be taken constantly to make sure that Beck is responding to them in a positive manner. It's not like we don't know the IVIG drill, as we have been though it multiple times before, but we have always been in the hospital, and it was always a little easier to contain this little guy and keep him occupied. On the bright side, we get to stay out of a germ filled hospital!
That's it for an update on Becks. We'll give you more info once it comes. On a different subject, I should mention that Nate and I finally changed our Utah phone numbers to Iowa numbers (it only took 4 1/2 years to do so). If you would like our new numbers please let me know and I will e-mail them to you. Thanks!
-Beckham & Co.
The game plan: IVIG! The reason for the IVIG: because I asked for Beckham to receive IVIG before we go all the way to Rituxin. I just wanted to try something a little less drastic and see if his little body will respond to it. Thus far, Beckham, has responded to IVIG 50% of the time. Not the best record, but it's better than zero! If he does not respond, then Rituxin will be the next drug of choice. The IVIG will be started on Monday (unless his levels come back super low on Thursday) and we are going to attempt to do them through an outpatient clinic. I'm a little nervous how this will go because it takes hours to infuse the IVIG, plus vitals have to be taken constantly to make sure that Beck is responding to them in a positive manner. It's not like we don't know the IVIG drill, as we have been though it multiple times before, but we have always been in the hospital, and it was always a little easier to contain this little guy and keep him occupied. On the bright side, we get to stay out of a germ filled hospital!
That's it for an update on Becks. We'll give you more info once it comes. On a different subject, I should mention that Nate and I finally changed our Utah phone numbers to Iowa numbers (it only took 4 1/2 years to do so). If you would like our new numbers please let me know and I will e-mail them to you. Thanks!
-Beckham & Co.
Saturday, March 27, 2010
Unexpected rise
While Beck looks worse than he has in the last couple of months in terms of bruising, his platelets actually rose slightly to 48 yesterday. This was very unexpected because, honestly, Beck looks really bad...almost as bad as he did last year when his platelets were below 10. I still find it a little hard to believe that they rose. Lets just hope and pray that this is only the start of his platelet rise and that when levels are checked again on Monday they will have risen even more!
Beck's other labs looked a lot the same with his hemoglobin hanging out in the 9's and everything else semi-stable. This is a good thing. A very good thing. And gives us hope that nothing else is brewing inside his little body. His behavior is also pretty stable with lots of energy and a good appetite. The only thing that is alarming is that his puking has returned and is become too frequent to be called a coincidence. I have already cleaned up 2 HUGE vomits today and am hoping that there will not be any more. If there are....well, lets just hope there is not (I don't want to write anything and jinx ourselves in the process!). And, also, I don't want Beck to vomit anymore because, Gwen, likes to stand over him while he pukes and yell "he's puking," and then make vomiting noises along with him (lovely).
We'll keep you posted on lab results on Monday and so forth. Keep praying for our little guy. He (and the rest of us) sure feel the strength of every prayer that is offered in his behalf. Thanks!
Taken during a walk this week. It was cold and windy, but the kiddos enjoyed it so much that they curled up and went to sleep (obviously).
-Beckham & Co.
Beck's other labs looked a lot the same with his hemoglobin hanging out in the 9's and everything else semi-stable. This is a good thing. A very good thing. And gives us hope that nothing else is brewing inside his little body. His behavior is also pretty stable with lots of energy and a good appetite. The only thing that is alarming is that his puking has returned and is become too frequent to be called a coincidence. I have already cleaned up 2 HUGE vomits today and am hoping that there will not be any more. If there are....well, lets just hope there is not (I don't want to write anything and jinx ourselves in the process!). And, also, I don't want Beck to vomit anymore because, Gwen, likes to stand over him while he pukes and yell "he's puking," and then make vomiting noises along with him (lovely).
We'll keep you posted on lab results on Monday and so forth. Keep praying for our little guy. He (and the rest of us) sure feel the strength of every prayer that is offered in his behalf. Thanks!
Taken during a walk this week. It was cold and windy, but the kiddos enjoyed it so much that they curled up and went to sleep (obviously). -Beckham & Co.
Wednesday, March 24, 2010
Appointment update
After heading to Iowa City yesterday to meet with Beckham's cardiologist (transplant doctor), I am still feeling a little uneasy and unsure about our little guy. His labs showed that his platelets have dropped again to 26, but his hemoglobin is remaining slightly low but stable at 9.7. We are still home at the present and if we stay here I will be shocked (I promise I am not sounding like a Debbie Downer, just being realistic). This is all becoming too much like last year, and how ironic that it is happening at the exact same time. Sometimes I hate ironies!
Beck's labs will be checked again on Friday and if they have dropped to 10 or below then we will be starting a treatment, and sadly, the treatment of choice that his doctor would like to use is Rituxin (a type of chemo treatment). I was a little shocked by this news because I assumed that his doctor would choose a treatment that was not quite as drastic. While we did see results from Rituxin last year, we also had the result of ALL of his B-cells being destroyed, meaning that we were on complete lock down for the entire summer. Beck also had a nasty reaction when the Rituxin was being infused into his body - violent shaking all over his body, a high fever, and super high heart rate (the reason for this is because the med actually bursts the b-cell, releasing all of their toxins into his blood stream). I asked the doctor is Beck will have the same reaction when he receives Rituxin this time and his response was "probably." Yikes! One thing that his doctor does want to do is avoid steroids at all costs. I am okay with that. VERY okay with that! And I'm sure that Beckham is okay with that also.
I received a little incite into Evans Syndrome during this appointment as the doctor explained what is believed to happen with this disease: when a normal person gets an illness (or some sort of foreign antibody), the body's automatic response is to find and destroy that antibody, thus fighting the illness. But in the case of Evans Syndrome, the body instead mistakes the platelets, red blood cells, and sometimes white blood cells, for the antibodies and destroys them instead. Great, right? Aren't our bodies crazy?
That's it for now. We'll update again on Friday after we receive lab results. Till then, I am going to have a talk with Beckham's platelets and tell them that it is time for them to start behaving and rising to normal levels. They better listen!
-Beckham & Co.
Beck's labs will be checked again on Friday and if they have dropped to 10 or below then we will be starting a treatment, and sadly, the treatment of choice that his doctor would like to use is Rituxin (a type of chemo treatment). I was a little shocked by this news because I assumed that his doctor would choose a treatment that was not quite as drastic. While we did see results from Rituxin last year, we also had the result of ALL of his B-cells being destroyed, meaning that we were on complete lock down for the entire summer. Beck also had a nasty reaction when the Rituxin was being infused into his body - violent shaking all over his body, a high fever, and super high heart rate (the reason for this is because the med actually bursts the b-cell, releasing all of their toxins into his blood stream). I asked the doctor is Beck will have the same reaction when he receives Rituxin this time and his response was "probably." Yikes! One thing that his doctor does want to do is avoid steroids at all costs. I am okay with that. VERY okay with that! And I'm sure that Beckham is okay with that also.
I received a little incite into Evans Syndrome during this appointment as the doctor explained what is believed to happen with this disease: when a normal person gets an illness (or some sort of foreign antibody), the body's automatic response is to find and destroy that antibody, thus fighting the illness. But in the case of Evans Syndrome, the body instead mistakes the platelets, red blood cells, and sometimes white blood cells, for the antibodies and destroys them instead. Great, right? Aren't our bodies crazy?
That's it for now. We'll update again on Friday after we receive lab results. Till then, I am going to have a talk with Beckham's platelets and tell them that it is time for them to start behaving and rising to normal levels. They better listen!
-Beckham & Co.
Sunday, March 21, 2010
Platelet drop...but we're still home!
First off, thank you so much for the comments that were left on my last post. They meant so much and showed me how well supported my little family is during our hard times. I forget what amazing family and friends we have that carry and lift us through every trial. We are truly never alone. Thank you!
Second, I am sorry to have left you all on a limb without doing a further update this week on Beckham's health. I need to do better at updating more than just once a week. I should blame it on myself and my own laziness, but I am going to blame it on Hulu, which is my guilty pleasure. It's just too tempting to flip that on and get engrossed in a show instead of taking the time to write a post (please tell me that I am not the only one with a Hulu obsession?). But, I am going to make up for it now and give a detailed update.
Beckham had a pretty stable week for the most part with zero hospital stays, 2 blood draws, and even a little out of the house trip that was not health care related. His labs on Monday showed that his platelets had dropped down to 36 (yikes) and his hemoglobin was in the high 9's. This was not unexpected given his bruised and petechiae covered (red spots under the skin from blood that has leaked from the capillaries into the skin) appearance, but was still a blow because his platelets had been in the 70's the week before. I assumed at this point that we were headed up to Iowa City to begin treatment, but was proven wrong when his transplant doctor wanted to wait because he was, for the most part, stable. I'm not going to lie, I was a little irked at this point because I felt that platelets of 34 was not good (which it isn't) and that he needed to be started on a treatment. But after talking to the transplant team, I felt better and agreed to wait a couple of days and repeat labs again. When labs were drawn again, the results showed that his platelets had dropped only by 2 to 34 and that his hemoglobin was hovering in the low 9's. Still not great news, but still stable enough for us to stay home, but be super cautious in the process. We will head up to Iowa City on Tuesday for more labs and to meet with his transplant doctor and to discuss where we go from here. I promise to write another update at that time!
We have to, once again, pad Beckham's bed so that he does not harm himself when he sleeps. Pretty creative design, right?
As for some good news, we found a place to live in Iowa City! Yeah! After a day trip to look at a bunch a places (and let me tell you, there are some NASTY and expensive places that people try to rent out) we finally narrowed it down to two choices. Nate and I went back and forth, but finally decided on the place with the backyard - something that was our main criteria in the first place. We are excited to move (though we don't know exactly when), but now we have to go through the stress of figuring out what to do with our place here. If anyone is interested in a super cute two bedroom town house, please let me know!
I LOVE this picture. It is not only cute, but shows a milestone that we have waited for. Beckham has refused to sit down in a chair and eat since he lost his appetite a couple of months ago. He has also NEVER eaten pancakes. In this photo he is doing both!
Please keep our little guy in your prayers! He looks pretty rough right now with bruises from head to toe, and he keeps getting more because he never lets anything stop him.
-Beckham & Co.
Second, I am sorry to have left you all on a limb without doing a further update this week on Beckham's health. I need to do better at updating more than just once a week. I should blame it on myself and my own laziness, but I am going to blame it on Hulu, which is my guilty pleasure. It's just too tempting to flip that on and get engrossed in a show instead of taking the time to write a post (please tell me that I am not the only one with a Hulu obsession?). But, I am going to make up for it now and give a detailed update.
Beckham had a pretty stable week for the most part with zero hospital stays, 2 blood draws, and even a little out of the house trip that was not health care related. His labs on Monday showed that his platelets had dropped down to 36 (yikes) and his hemoglobin was in the high 9's. This was not unexpected given his bruised and petechiae covered (red spots under the skin from blood that has leaked from the capillaries into the skin) appearance, but was still a blow because his platelets had been in the 70's the week before. I assumed at this point that we were headed up to Iowa City to begin treatment, but was proven wrong when his transplant doctor wanted to wait because he was, for the most part, stable. I'm not going to lie, I was a little irked at this point because I felt that platelets of 34 was not good (which it isn't) and that he needed to be started on a treatment. But after talking to the transplant team, I felt better and agreed to wait a couple of days and repeat labs again. When labs were drawn again, the results showed that his platelets had dropped only by 2 to 34 and that his hemoglobin was hovering in the low 9's. Still not great news, but still stable enough for us to stay home, but be super cautious in the process. We will head up to Iowa City on Tuesday for more labs and to meet with his transplant doctor and to discuss where we go from here. I promise to write another update at that time!
We have to, once again, pad Beckham's bed so that he does not harm himself when he sleeps. Pretty creative design, right?As for some good news, we found a place to live in Iowa City! Yeah! After a day trip to look at a bunch a places (and let me tell you, there are some NASTY and expensive places that people try to rent out) we finally narrowed it down to two choices. Nate and I went back and forth, but finally decided on the place with the backyard - something that was our main criteria in the first place. We are excited to move (though we don't know exactly when), but now we have to go through the stress of figuring out what to do with our place here. If anyone is interested in a super cute two bedroom town house, please let me know!
I LOVE this picture. It is not only cute, but shows a milestone that we have waited for. Beckham has refused to sit down in a chair and eat since he lost his appetite a couple of months ago. He has also NEVER eaten pancakes. In this photo he is doing both! Please keep our little guy in your prayers! He looks pretty rough right now with bruises from head to toe, and he keeps getting more because he never lets anything stop him.
-Beckham & Co.
Saturday, March 13, 2010
A hard time
I'm not one to "blog" instead of writing an update or give a little glimpse into our lives, but tonight I wanted to use this website to write down a couple of thoughts, hoping to collect myself in the process.
This week has been tough as I watched Beckham closely, noticing how each day brought more bruises, more evidence that something was not right, and proof when his labs came back with lowered platelets again (which are continuing to decline). He does not have an illness at all that could be causing his decline in platelets, but then again, he does not have too. He has Evans Syndrome, which means that he can drop at any moment. Yikes. I'm not okay with that. I hate watching him suffer.
I spent hours this week researching Evans Syndrome, becoming FREAKED out with what I read (P.S - my advise to anyone is to NOT research stuff because it scares that crap out of you!), and becoming more scared for the future - scared for Beckham's health, scared that he will not get to experience things that a little boy should be allowed to experience, scared that this will effect his angel heart, scared of the treatments he will have to receive again, and just plain scared in general.
Bottom line: I'm having a hard time with this. A really hard time. A really, really, really hard time.
Right before I put the kiddos to bed tonight, I watched Beckham barely smack his back side against something, and a huge bruise immediately appeared (one of MANY bruises). I went to my room after the kids were down and had a meltdown. And after I composed myself I sat and thought and thought and thought and then I turned on my computer and watched this:
The new bottom line: I'm going to have a hard time with this....but that's okay. I'm supposed to have a hard time. And, I'm not alone, nor will I ever be. Beckham is worth every bit of this suffering. I love him more than words can express. He is mine, and Heavenly Father knew that he (and I) could handle this.
And I'm okay with that.
This week has been tough as I watched Beckham closely, noticing how each day brought more bruises, more evidence that something was not right, and proof when his labs came back with lowered platelets again (which are continuing to decline). He does not have an illness at all that could be causing his decline in platelets, but then again, he does not have too. He has Evans Syndrome, which means that he can drop at any moment. Yikes. I'm not okay with that. I hate watching him suffer.
I spent hours this week researching Evans Syndrome, becoming FREAKED out with what I read (P.S - my advise to anyone is to NOT research stuff because it scares that crap out of you!), and becoming more scared for the future - scared for Beckham's health, scared that he will not get to experience things that a little boy should be allowed to experience, scared that this will effect his angel heart, scared of the treatments he will have to receive again, and just plain scared in general.
Bottom line: I'm having a hard time with this. A really hard time. A really, really, really hard time.
Right before I put the kiddos to bed tonight, I watched Beckham barely smack his back side against something, and a huge bruise immediately appeared (one of MANY bruises). I went to my room after the kids were down and had a meltdown. And after I composed myself I sat and thought and thought and thought and then I turned on my computer and watched this:
The new bottom line: I'm going to have a hard time with this....but that's okay. I'm supposed to have a hard time. And, I'm not alone, nor will I ever be. Beckham is worth every bit of this suffering. I love him more than words can express. He is mine, and Heavenly Father knew that he (and I) could handle this.
And I'm okay with that.
Sunday, March 7, 2010
Week recap
After a pretty busy week, I am finally finding time to sit in front of the computer and write an update. For starters, I wanted to say that we are still home and out of the hospital! Yeah! I figured that it's always great to start off with great news instead of dragging it out until the end.
Here's a recap of the last week:
1. My last post left off with Beckham's platelets in the 50's, his hemoglobin at 10, and the diagnosis of pneumonia. Today, I can report that his platelets are at 120 (lower than the normal range, but we'll take it), his hemoglobin at 10.5 (low end of normal), and his pneumonia has cleared up. Yeah again! It has taken this whole week for Beck's platelets to finally climb (and climb on their own without the help of meds!), and because of this he is covered in bruises again. All that I can say is that a crazy two year old + low platelets + always having to stay inside = lots and lots of bruises! Yikes.
This is how covered in bruises he is over his entire body.
2. We (Beck and myself) only had one ER visit with his low platelets (I consider that a HUGE milestone!) because I could not get his finger to stop bleeding and also because he had bloody poop. It took 5 hours to get a pin size cut to stop bleeding (with the aid of a clotting gel), but we were able to make it home without being admitted.
3. With Beckham's platelets and hemoglobin dropping with his last couple of illnesses, it is now confirmed that his does, in fact, have Evans Syndrome. This is a big blow...but not something that was unexpected because there was a huge chance that this was the case. We still do not know what the future holds for our little guy, or if we are to expect his counts to drop with every illness, but we do know that this is our reality and we will take it happily. We'd do anything for this little guy. I just wish that I knew someone else who has this illness or knows someone with this. I have never met anyone that is familiar with this illness, and I would love to chat and ask questions with someone. Anyone out there know someone with Evans Syndrome?
4. I had a small surgery done this last week to remove a tumor from my chest, which came back benign for cancer (big yeah!). I am doing great and counting my blessings!
That's it for now. The rest of us are doing great and looking forward to the warm weather that I know will eventually come. My kiddos are so board and out of things to entertain themselves. Here's the proof:
-Beckham & Co.
Here's a recap of the last week:
1. My last post left off with Beckham's platelets in the 50's, his hemoglobin at 10, and the diagnosis of pneumonia. Today, I can report that his platelets are at 120 (lower than the normal range, but we'll take it), his hemoglobin at 10.5 (low end of normal), and his pneumonia has cleared up. Yeah again! It has taken this whole week for Beck's platelets to finally climb (and climb on their own without the help of meds!), and because of this he is covered in bruises again. All that I can say is that a crazy two year old + low platelets + always having to stay inside = lots and lots of bruises! Yikes.
This is how covered in bruises he is over his entire body.2. We (Beck and myself) only had one ER visit with his low platelets (I consider that a HUGE milestone!) because I could not get his finger to stop bleeding and also because he had bloody poop. It took 5 hours to get a pin size cut to stop bleeding (with the aid of a clotting gel), but we were able to make it home without being admitted.
3. With Beckham's platelets and hemoglobin dropping with his last couple of illnesses, it is now confirmed that his does, in fact, have Evans Syndrome. This is a big blow...but not something that was unexpected because there was a huge chance that this was the case. We still do not know what the future holds for our little guy, or if we are to expect his counts to drop with every illness, but we do know that this is our reality and we will take it happily. We'd do anything for this little guy. I just wish that I knew someone else who has this illness or knows someone with this. I have never met anyone that is familiar with this illness, and I would love to chat and ask questions with someone. Anyone out there know someone with Evans Syndrome?
4. I had a small surgery done this last week to remove a tumor from my chest, which came back benign for cancer (big yeah!). I am doing great and counting my blessings!
That's it for now. The rest of us are doing great and looking forward to the warm weather that I know will eventually come. My kiddos are so board and out of things to entertain themselves. Here's the proof:
-Beckham & Co.
Thursday, February 25, 2010
The good and the bad news
Good news: After weeks and weeks of losing weight, Beckham's weight was finally up today to 26 lbs! His HH nurse weighed him twice just to make sure, and, sure enough, he really was up.
Bad news: His HH nurse also noticed that his lungs sounded pretty rotten today and sent us to the doctor.
Good news: After an x-ray today at the doctors office, Beck's lungs look pretty clear.
Bad news: Even with clear lungs he still has pneumonia. Crap.
Good news: It only took one poke to draw labs today, and the results came back super fast.
Bad news: The labs we're pretty crappy, showing that his platelets dropped again today to 50, and his hemoglobin was slightly down at 10. Bummer!
Good news: Beckham is now skinny enough to fit in his helmet again (there was no way we were going to squeeze his steroid cheeks in there from 6 months ago).
Bad news: He now has to wear his helmet again because of his low platelets.
Good news: We have managed to stay away from the hospital another day and we'll all enjoy our own beds tonight!
Bad news: If his platelets continue to plummet, then we will be headed back to our second home at the hospital.
Good news: We will meet with the pediatrician tomorrow morning for more labs and hope and pray that his levels have come up.
Bad news: We will have to meet with Dr. "I know everything, and don't listen to ANYTHING parents have to say" again (Beck's regular pediatrician was booked today (we love him) and we had to meet with another). All I can say is that it took everything inside me not to punch this new doctor or show him my middle finger (I know, super mature and lady like). He was one of those doctors that assumes they know everything about children, and treat the parents like they are idiots. He went as far as to tell me that Beckham's puking was just because "toddler's puke" and also, his diarrhea was just "toddler diarrhea." After he said that, I was tempted to invite him to come clean up Beck's multiple poops and pukes during the day, and then ask him to say that they were "normal toddler" stuff. Sheesh! Beck is not a normal toddler! I'll stop now before I get all worked up again (the "toddler" comment was only the tip of the ice burg on what he said to tick me off).
Summary:
Beck has pneumonia. Where he got it, or how he got it, we have no idea. He is now getting daily shots of Rocephin, 3 doses of oral antibiotics during the day, and breathing treatments. He is not being treated yet for his lowered platelets because his transplant doctor wants to see if they will rise on their own as he starts to get better. We still have no idea why he is vomiting and pooping up a storm. We have talked about doing another MRI to check his head, and that might happen sooner than later. We are thrilled to be home and we are praying to stay here!
This is how exhausted our little guy was at the end of the day.
-Beckham & Co.
Bad news: His HH nurse also noticed that his lungs sounded pretty rotten today and sent us to the doctor.
Good news: After an x-ray today at the doctors office, Beck's lungs look pretty clear.
Bad news: Even with clear lungs he still has pneumonia. Crap.
Good news: It only took one poke to draw labs today, and the results came back super fast.
Bad news: The labs we're pretty crappy, showing that his platelets dropped again today to 50, and his hemoglobin was slightly down at 10. Bummer!
Good news: Beckham is now skinny enough to fit in his helmet again (there was no way we were going to squeeze his steroid cheeks in there from 6 months ago).
Bad news: He now has to wear his helmet again because of his low platelets.
Good news: We have managed to stay away from the hospital another day and we'll all enjoy our own beds tonight!
Bad news: If his platelets continue to plummet, then we will be headed back to our second home at the hospital.
Good news: We will meet with the pediatrician tomorrow morning for more labs and hope and pray that his levels have come up.
Bad news: We will have to meet with Dr. "I know everything, and don't listen to ANYTHING parents have to say" again (Beck's regular pediatrician was booked today (we love him) and we had to meet with another). All I can say is that it took everything inside me not to punch this new doctor or show him my middle finger (I know, super mature and lady like). He was one of those doctors that assumes they know everything about children, and treat the parents like they are idiots. He went as far as to tell me that Beckham's puking was just because "toddler's puke" and also, his diarrhea was just "toddler diarrhea." After he said that, I was tempted to invite him to come clean up Beck's multiple poops and pukes during the day, and then ask him to say that they were "normal toddler" stuff. Sheesh! Beck is not a normal toddler! I'll stop now before I get all worked up again (the "toddler" comment was only the tip of the ice burg on what he said to tick me off).
Summary:
Beck has pneumonia. Where he got it, or how he got it, we have no idea. He is now getting daily shots of Rocephin, 3 doses of oral antibiotics during the day, and breathing treatments. He is not being treated yet for his lowered platelets because his transplant doctor wants to see if they will rise on their own as he starts to get better. We still have no idea why he is vomiting and pooping up a storm. We have talked about doing another MRI to check his head, and that might happen sooner than later. We are thrilled to be home and we are praying to stay here!
This is how exhausted our little guy was at the end of the day.-Beckham & Co.
Wednesday, February 24, 2010
Update(ish) 2/24/10
I know that the title "update" is usually intended for hospital stays, but currently we are at home, and the "ish" in the title is because we are fighting very hard to stay that way!
I wish that my lack of posting over the last couple of weeks was because everything was normal and uneventful, but, sadly, it is because I have been up to my ears in never ending puke and poop (I bet that paints a lovely picture) from our little guy. Beck has never really gotten over the stomach bug that was discussed in my last post. And while he did have periods (no longer than a few days) of being free from bodily explosions, they always returned and returned with a vengeance! Yikes! I'll do my best to summarize the last couple of weeks, but be warned that there will be a lot of puke and poop talk (how lovely).
1. A week after Gwen, myself, and Beck were over the stomach bug, I noticed that Beck was still acting a little off (with spontaneous puke and poops) and that his right eye was swollen and red, so I took him into his pediatricians office just to make sure he was alright. There, he was diagnosed with a mild eye infection, labs came back normal, we were sent home, and that was that.
2. That night, Beck was going through diaper after diaper, which continued through the weekend (along with vomiting) and he had NO appetite, and by Monday, his HH nurse was called in to do more labs and check his weight. The results were: his weight was down again, and his labs showed that he was quite dehydrated, but they did not explain why he was pooping and puking up a storm. She also took a stool sample and that came back normal. After talking to the transplant team in Iowa City, we promised to push fluids, and see them in a few days.
3. Before going to Iowa City, we were told to come with our bags packed and to expect to stay (never a good sign). Once there, Beck had an ECHO, a slew of labs, and was seen by the doctor. Labs showed that he was still dehydrated, his Tacro level (Prograf - anti rejection drug) was smoking high, he was CMV negative (phew!), and that his B cells are still suppressed from the Rituxin from last year, but are slowly starting to come back. His ECHO showed that his heart looked great and had no signs of rejection (which the doctor was concerned might be causing Beckham's symptoms). Because of all of this, Beck's Tacro was lowered, he was taken off of Bactrum (which he has been on since March to prevent bacterial pneumonia, caused from the Rituxin), and we were sent home. Yeah!
4. By the weekend (that would be last weekend) his symptoms all returned with a whole lot more poop and puke, and he also developed a thick, mucous cough. On Tuesday, his HH nurse came to draw his Tacro level, a BMP, and CBC. His Tacro came back lowered, his BMP showed that he was much less dehydrated, and his CBC showed that his platelets had dropped to 97. Bummer! His WBC does not indicate an infection, so we still don't know what's brewing in this little guy. His EBV (Epstein barr - mono) test, however, came back slightly elevated - this does not mean that he has EBV, but we will watch it closely from now on.
5. Now we are playing the wait and see game. Labs will be checked again (Beck is a little pin cushion by this point) on Thursday, and if his platelets are still low then he will have to be admitted for IVIG treatments. I'm hoping that we make it at home until then. Beck is not sounding good with his cough, and the pukes are happening right and left. Actually, last night we were talking to Nate's family on the web cam, and Beck greeted them by vomiting all over. How sweet!
That's it for now. We'll keep you posted!
-Beckham & Co.
I wish that my lack of posting over the last couple of weeks was because everything was normal and uneventful, but, sadly, it is because I have been up to my ears in never ending puke and poop (I bet that paints a lovely picture) from our little guy. Beck has never really gotten over the stomach bug that was discussed in my last post. And while he did have periods (no longer than a few days) of being free from bodily explosions, they always returned and returned with a vengeance! Yikes! I'll do my best to summarize the last couple of weeks, but be warned that there will be a lot of puke and poop talk (how lovely).
1. A week after Gwen, myself, and Beck were over the stomach bug, I noticed that Beck was still acting a little off (with spontaneous puke and poops) and that his right eye was swollen and red, so I took him into his pediatricians office just to make sure he was alright. There, he was diagnosed with a mild eye infection, labs came back normal, we were sent home, and that was that.
2. That night, Beck was going through diaper after diaper, which continued through the weekend (along with vomiting) and he had NO appetite, and by Monday, his HH nurse was called in to do more labs and check his weight. The results were: his weight was down again, and his labs showed that he was quite dehydrated, but they did not explain why he was pooping and puking up a storm. She also took a stool sample and that came back normal. After talking to the transplant team in Iowa City, we promised to push fluids, and see them in a few days.
3. Before going to Iowa City, we were told to come with our bags packed and to expect to stay (never a good sign). Once there, Beck had an ECHO, a slew of labs, and was seen by the doctor. Labs showed that he was still dehydrated, his Tacro level (Prograf - anti rejection drug) was smoking high, he was CMV negative (phew!), and that his B cells are still suppressed from the Rituxin from last year, but are slowly starting to come back. His ECHO showed that his heart looked great and had no signs of rejection (which the doctor was concerned might be causing Beckham's symptoms). Because of all of this, Beck's Tacro was lowered, he was taken off of Bactrum (which he has been on since March to prevent bacterial pneumonia, caused from the Rituxin), and we were sent home. Yeah!
4. By the weekend (that would be last weekend) his symptoms all returned with a whole lot more poop and puke, and he also developed a thick, mucous cough. On Tuesday, his HH nurse came to draw his Tacro level, a BMP, and CBC. His Tacro came back lowered, his BMP showed that he was much less dehydrated, and his CBC showed that his platelets had dropped to 97. Bummer! His WBC does not indicate an infection, so we still don't know what's brewing in this little guy. His EBV (Epstein barr - mono) test, however, came back slightly elevated - this does not mean that he has EBV, but we will watch it closely from now on.
5. Now we are playing the wait and see game. Labs will be checked again (Beck is a little pin cushion by this point) on Thursday, and if his platelets are still low then he will have to be admitted for IVIG treatments. I'm hoping that we make it at home until then. Beck is not sounding good with his cough, and the pukes are happening right and left. Actually, last night we were talking to Nate's family on the web cam, and Beck greeted them by vomiting all over. How sweet!
That's it for now. We'll keep you posted!
-Beckham & Co.
Saturday, February 6, 2010
Vomit
I know, I know - great title to start a post, right? But, seriously, this was the best and most accurate way to describe this last week. And all I can say is YUCK!
This week was supposed to be full of appointments for our little guy (genetics, cardiology, neurology) since he was out of the hospital and over his RSV and lowered platelets. But instead, it was full of the stomach flu which hit our house in a HUGE way. Yuck again!
On Monday morning around 12:00 AM, I was awoken to the unmistakable sounds of heaving coming from the kiddos room. I ran in to find Gwen vomiting all over her bed, and I quickly grabbed her and rushed her to the bathroom. After a few more rounds of vomit, a good thorough clean-up, and lots of hugs, I put Gwen in bed with me and tried to drift off to sleep (Nate was at work at the time). I guess that I should have known better than to assume that I would be able to fall back to sleep because about an hour later I heard a loud wail come from the kids room and ran in to find Beckham sobbing. I picked him up and stuck him in my bed just in time to see him start the vomiting process. Luckily, I am a vomit expert (seriously...and sadly) and I was prepared with a bowl and a towel. As I caught his puke, of course, Gwen decided that it was time for her to start puking again, and I turned and caught her puke as well. Now, I don't know about you, but I think I deserve and award for catching two sets of puke at the same time. That really is talent! The puking lasted about another hour until Nate got home, at which time, I handed him a kid, and we each slept with one through out the night, and caught puke as it came. Yuck, a third time.
The kiddos stomach flu lasted for the next couple of days, and by Wednesday, I was puking my guts up as well (lovely). Yuck, a fourth time. I guess that I just could not let the kids take part in all the fun and not get involved, right? I am now feeling much better and so is little Gwen. Beck, on the other hand, is still a little queasy and sporadically pukes, and has no appetite (I actually just cleaned up his puke a half hour ago...so lucky!). We are hoping that this will soon end as he is down a pound (he weights 26 lbs as of today), and we want to avoid the hospital. Labs were drawn today and showed that his hemoglobin, platelets, and white blood count is stable - so great considering that he caught a virus so soon after his last one - but his electrolytes are a little on the low side, so we will have to keep pushing fluid.
On the upside of things (this has nothing to do with vomit), we did at least make it to one appointment - Genetics - which was extremely positive. The Genetics doctor was sure that, given Beck's huge history, that he would have some sort of underlining Genetics defect, but he does not. All of his tests came back negative for any sort of defect! There is still one more test to run, but the doctor is pretty sure that it will come back negative as well. If it does, she said that our chances of having another baby with Beck's heart defect is 1%, which if you add that to the 5% chance that everyone has of having a baby with a defect, that puts us at 6%. Wow! So great! No yuck to that! Now all we have to do is have the courage to have another baby. Hmmm.....easier said than done!
That's it for now from the land of vomit! Let's hope and pray that this next week will bring a much sweeter and more pleasant title than this one.
-Beckham and Co.
This week was supposed to be full of appointments for our little guy (genetics, cardiology, neurology) since he was out of the hospital and over his RSV and lowered platelets. But instead, it was full of the stomach flu which hit our house in a HUGE way. Yuck again!
On Monday morning around 12:00 AM, I was awoken to the unmistakable sounds of heaving coming from the kiddos room. I ran in to find Gwen vomiting all over her bed, and I quickly grabbed her and rushed her to the bathroom. After a few more rounds of vomit, a good thorough clean-up, and lots of hugs, I put Gwen in bed with me and tried to drift off to sleep (Nate was at work at the time). I guess that I should have known better than to assume that I would be able to fall back to sleep because about an hour later I heard a loud wail come from the kids room and ran in to find Beckham sobbing. I picked him up and stuck him in my bed just in time to see him start the vomiting process. Luckily, I am a vomit expert (seriously...and sadly) and I was prepared with a bowl and a towel. As I caught his puke, of course, Gwen decided that it was time for her to start puking again, and I turned and caught her puke as well. Now, I don't know about you, but I think I deserve and award for catching two sets of puke at the same time. That really is talent! The puking lasted about another hour until Nate got home, at which time, I handed him a kid, and we each slept with one through out the night, and caught puke as it came. Yuck, a third time.
The kiddos stomach flu lasted for the next couple of days, and by Wednesday, I was puking my guts up as well (lovely). Yuck, a fourth time. I guess that I just could not let the kids take part in all the fun and not get involved, right? I am now feeling much better and so is little Gwen. Beck, on the other hand, is still a little queasy and sporadically pukes, and has no appetite (I actually just cleaned up his puke a half hour ago...so lucky!). We are hoping that this will soon end as he is down a pound (he weights 26 lbs as of today), and we want to avoid the hospital. Labs were drawn today and showed that his hemoglobin, platelets, and white blood count is stable - so great considering that he caught a virus so soon after his last one - but his electrolytes are a little on the low side, so we will have to keep pushing fluid.
On the upside of things (this has nothing to do with vomit), we did at least make it to one appointment - Genetics - which was extremely positive. The Genetics doctor was sure that, given Beck's huge history, that he would have some sort of underlining Genetics defect, but he does not. All of his tests came back negative for any sort of defect! There is still one more test to run, but the doctor is pretty sure that it will come back negative as well. If it does, she said that our chances of having another baby with Beck's heart defect is 1%, which if you add that to the 5% chance that everyone has of having a baby with a defect, that puts us at 6%. Wow! So great! No yuck to that! Now all we have to do is have the courage to have another baby. Hmmm.....easier said than done!
That's it for now from the land of vomit! Let's hope and pray that this next week will bring a much sweeter and more pleasant title than this one.
-Beckham and Co.
Tuesday, January 26, 2010
Update 1/26/10
This is Kim posting again. I finally am at a place where I am able to access Blogger and post an update. But guess where that place is? It's at home (and not just me, but Beckham is home, too!).
After another dose of IVIG last night, Beck and I were promised that if his platelets went up again we would be able to go home today. And sure enough, they went up, and went up a lot....231 to be exact! Wow! Now the key is to keep them that way. Labs will be checked again on Friday just to make sure that nothing fishy is going on. Everyone cross your fingers and keep them cross until then.
Thank you so much for all of the prayers, e-mails, calls, babysitting, and much more, that was done for our family over the last couple of days. We have felt so loved and cared for. I have been somewhat of a wreck as I pondered on the fact of watching Beck relapse with his ITP. I knew that this was a possibility, or more likely, I knew that it would happen, given his Evans Syndrome...but I still HATED and feared the thought of it. Any mother would. It's part of our job! But please know that all of your kindness helps more than we can express. Thank you. I'm sure that if Beckham could speak to each of you he would say the same. Though, it might come out as "Wiggles," since that is all he says, demands, and watches these days.
This is how Beckham fell asleep on the way home from the hospital. Love it.
After another dose of IVIG last night, Beck and I were promised that if his platelets went up again we would be able to go home today. And sure enough, they went up, and went up a lot....231 to be exact! Wow! Now the key is to keep them that way. Labs will be checked again on Friday just to make sure that nothing fishy is going on. Everyone cross your fingers and keep them cross until then.
Thank you so much for all of the prayers, e-mails, calls, babysitting, and much more, that was done for our family over the last couple of days. We have felt so loved and cared for. I have been somewhat of a wreck as I pondered on the fact of watching Beck relapse with his ITP. I knew that this was a possibility, or more likely, I knew that it would happen, given his Evans Syndrome...but I still HATED and feared the thought of it. Any mother would. It's part of our job! But please know that all of your kindness helps more than we can express. Thank you. I'm sure that if Beckham could speak to each of you he would say the same. Though, it might come out as "Wiggles," since that is all he says, demands, and watches these days.
This is how Beckham fell asleep on the way home from the hospital. Love it.-Beckham & Co.
Quick Update
We'll let you know more as we know more, but Monday's platelet level actually went up back into the 100s so we may be headed in the right direction already. They will draw another level today and if it continues to rise this may go from a big scare (similarities to last year's long ride) to a short hospital stay...obviously we are praying for the latter.
Sunday, January 24, 2010
Update 1/24/10
So Kim can't get on here to update her blog. At the hospital her blog is blocked probably because of all the scandalous things she writes on here so this is Nate's little sister Haley.
As far as the RSV goes Beck is doing quite well. His lungs are still clear and it doesn't seem to be bugging him as much. The bigger problem that they are concerned about is that his platelets have decreased to 87 and that's a huge drop in just one day. They are thinking that his ITP is rebounding which they knew was a possibility if he got sick again. He is once again covered in bruises and those little red blood freckle things all over his body (I don't know what they're called, so Kim can tell ya when she updates again). Because of this they started IVIG again. They aren't doing steriods because that would just make him sicker when he's RSV positive.
The cute little guy gets to wear his helmet again which he isn't so excited about. While the RSV has knocked out some of his energy when I was talking to Kim he still seemed to be pretty active. He was biting open a dvd cover and then pinched his lip in it and gave himself a bloody lip, which is so helpful with his lowered platelets! OH I almost forgot but they are still in Des Moines, they will be able to stay there as long as Beck's platelets stay above 50.
Please keep this family in your prayers!
Haley
As far as the RSV goes Beck is doing quite well. His lungs are still clear and it doesn't seem to be bugging him as much. The bigger problem that they are concerned about is that his platelets have decreased to 87 and that's a huge drop in just one day. They are thinking that his ITP is rebounding which they knew was a possibility if he got sick again. He is once again covered in bruises and those little red blood freckle things all over his body (I don't know what they're called, so Kim can tell ya when she updates again). Because of this they started IVIG again. They aren't doing steriods because that would just make him sicker when he's RSV positive.
The cute little guy gets to wear his helmet again which he isn't so excited about. While the RSV has knocked out some of his energy when I was talking to Kim he still seemed to be pretty active. He was biting open a dvd cover and then pinched his lip in it and gave himself a bloody lip, which is so helpful with his lowered platelets! OH I almost forgot but they are still in Des Moines, they will be able to stay there as long as Beck's platelets stay above 50.
Please keep this family in your prayers!
Haley
Saturday, January 23, 2010
Update 1/23/10
Our first "update" of the new year, and how I wished that we could make it through a whole year without using that title. Bummer.
My blogging has been slacking the last couple of weeks as I have been on vacation in Utah (I'll save that for another post), our bathroom had an unplanned remodeling (that will be for another post also), and we've had a huge, crazy ice storm. But now I am back and posting, not because I am sharing fun, everyday events, but because Beckham is back in the hospital.
While I was in Utah, Gwen had a mild cold that passed onto Beckham by the time I returned. Beck seemed to be tolerating the cold just fine until the last couple of days when his snot turned green and ran non-stop, his coughing began, he ran a low grade fever, and then yesterday his eyes started oozing out a yellow/greenish slime (great info to share, I know). I knew there was only one thing I could do at this point, and last night Beck and I trudged off to the ER. Once there, the doctor walked in and greeted Beck, telling him how excited she was to see him looking so well, and then asking him for a "high five." Beck was NOT thrilled to see the doctor and he responded with a firm "NO FIVE!" and then turned away from her. What a kid! At least the doctor did not take offense, but instead examined him and diagnosed him with pink eye and sent us home with eye drops. Truthfully, I was a little uneasy with this diagnosis and I asked if labs could be run just-in-case, but the ER doctor (she's so sweet by-the-way) said that she was nervous to run labs on Beck because she would probably find something she didn't like and make us stay. I agreed (reluctantly) and headed home.
Later that night, or I should say the next morning (2:00 AM), Beck woke up screaming bloody murder and when I went to get him he was smoking hot with a fever of 103.4. I once again bundled him up and headed to the ER, this time demanding labs and tests be run. It's a good thing I did because two important things were found. First: that Beck was positive for RSV (which is ironic since he had his Synagis (RSV prevention and aid shot) shot earlier that week), and Second: that his platelets had dropped to 125 (normal ranges are 150-450). He was admitted right then and that is where we are at this time.
In summary, Beck's RSV is not a very severe case. His lungs are clear and he is not having trouble breathing. He is, however, receiving IV antibiotics and IV fluids. And while the doctors are concerned that he has RSV, they are a little more concerned about his platelets (me too!). The plan for now is to keep him overnight again and check his platelet levels again tomorrow morning. If his platelets have risen then we can go home. If his platelets have dropped again then we will be looking at more hospital time and a consult with hematology again (to see if he is relapsing with the ITP, or his Evans Syndrome). If his platelets drop below 50 then he will be sent up to Iowa City.
Please keep our little guy in your prayers.
Thanks so much!
-Beckham & Co.
My blogging has been slacking the last couple of weeks as I have been on vacation in Utah (I'll save that for another post), our bathroom had an unplanned remodeling (that will be for another post also), and we've had a huge, crazy ice storm. But now I am back and posting, not because I am sharing fun, everyday events, but because Beckham is back in the hospital.
While I was in Utah, Gwen had a mild cold that passed onto Beckham by the time I returned. Beck seemed to be tolerating the cold just fine until the last couple of days when his snot turned green and ran non-stop, his coughing began, he ran a low grade fever, and then yesterday his eyes started oozing out a yellow/greenish slime (great info to share, I know). I knew there was only one thing I could do at this point, and last night Beck and I trudged off to the ER. Once there, the doctor walked in and greeted Beck, telling him how excited she was to see him looking so well, and then asking him for a "high five." Beck was NOT thrilled to see the doctor and he responded with a firm "NO FIVE!" and then turned away from her. What a kid! At least the doctor did not take offense, but instead examined him and diagnosed him with pink eye and sent us home with eye drops. Truthfully, I was a little uneasy with this diagnosis and I asked if labs could be run just-in-case, but the ER doctor (she's so sweet by-the-way) said that she was nervous to run labs on Beck because she would probably find something she didn't like and make us stay. I agreed (reluctantly) and headed home.
Later that night, or I should say the next morning (2:00 AM), Beck woke up screaming bloody murder and when I went to get him he was smoking hot with a fever of 103.4. I once again bundled him up and headed to the ER, this time demanding labs and tests be run. It's a good thing I did because two important things were found. First: that Beck was positive for RSV (which is ironic since he had his Synagis (RSV prevention and aid shot) shot earlier that week), and Second: that his platelets had dropped to 125 (normal ranges are 150-450). He was admitted right then and that is where we are at this time.
In summary, Beck's RSV is not a very severe case. His lungs are clear and he is not having trouble breathing. He is, however, receiving IV antibiotics and IV fluids. And while the doctors are concerned that he has RSV, they are a little more concerned about his platelets (me too!). The plan for now is to keep him overnight again and check his platelet levels again tomorrow morning. If his platelets have risen then we can go home. If his platelets have dropped again then we will be looking at more hospital time and a consult with hematology again (to see if he is relapsing with the ITP, or his Evans Syndrome). If his platelets drop below 50 then he will be sent up to Iowa City.
Please keep our little guy in your prayers.
Thanks so much!
-Beckham & Co.
Sunday, January 3, 2010
A new rule
I often sit and think about how much I have learned in life, how each experience gives me a new perspective and outlook, and how rules come about because you either fail or succeed. You all know what I mean and I'm sure that you all have a long list that you are thinking of right now. Here are a few of ours:
*Learning that Nate is SUPER grumpy if he does not eat, and making a rule that he HAS to eat ALL the time!
*Learning that, no matter what, I cannot sew. I just can't! And making a rule that I either contact my mom or my mother-in-law for ALL of my sewing needs.
*Learning that my little Gwen will speak her mind, no matter where we are, causing me to enforce a rule for Gwen to have "inside" and "outside" words and voices. Example: Gwen and I were in Target the other day doing some shopping, and right when I walked into the isle filled with people, Gwen, decides to yell at the top of her voice "it's a fart." And then when we walked down another isle, she looked over at a cute little girl (who did nothing to Gwen) and yelled "I don't like her!"
*Learning that Beckham can strip down to his birthday suit in a matter of seconds, and making the rule that he ALWAYS has to wear a onesie to help him stay partially clothed (and even then, he is able to find away to strip down to nothing). It's a good thing that we are not able to take him out because he would greet everyone with ALL of his glory!
And of course, our newest learned, rule:
*Nate is NOT allowed to cut Beckham's hair because it will turn out looking like a child on chemotherapy!
Note that he is, of course, in a onesie!
*Learning that Nate is SUPER grumpy if he does not eat, and making a rule that he HAS to eat ALL the time!
*Learning that, no matter what, I cannot sew. I just can't! And making a rule that I either contact my mom or my mother-in-law for ALL of my sewing needs.
*Learning that my little Gwen will speak her mind, no matter where we are, causing me to enforce a rule for Gwen to have "inside" and "outside" words and voices. Example: Gwen and I were in Target the other day doing some shopping, and right when I walked into the isle filled with people, Gwen, decides to yell at the top of her voice "it's a fart." And then when we walked down another isle, she looked over at a cute little girl (who did nothing to Gwen) and yelled "I don't like her!"
*Learning that Beckham can strip down to his birthday suit in a matter of seconds, and making the rule that he ALWAYS has to wear a onesie to help him stay partially clothed (and even then, he is able to find away to strip down to nothing). It's a good thing that we are not able to take him out because he would greet everyone with ALL of his glory!
And of course, our newest learned, rule:
*Nate is NOT allowed to cut Beckham's hair because it will turn out looking like a child on chemotherapy!
Note that he is, of course, in a onesie!-Beckham & Co.
Wednesday, December 30, 2009
Accepted!
I know that I am WAY behind on my posts, so I'll try to catch-up this week with the blog. At least I can use the holidays as an excuse, right?
But, first off:
Nate, Beckham, and the rest of us, will be trading in our Utah Utes gear for something a little less red and a little more BLACK & YELLOW! Something that looks a little more like this:
That's right, Nate has been officially accepted to the Doctorate of Nursing Practice (Nurse Practitioner) program at the University of Iowa, and we could not be more thrilled (seriously!). This is something that we have hoped and prayed for, for a long time - to stay in Iowa for Beckham's health care and to get Nate accepted into a top DNP program. Nate is thrilled by this news.....though he is dreading going back to school again. His program will start in June, and we will be looking at moving to Iowa City soon.
Way to go Nate! We're so proud of you!
But, first off:
Nate, Beckham, and the rest of us, will be trading in our Utah Utes gear for something a little less red and a little more BLACK & YELLOW! Something that looks a little more like this:
That's right, Nate has been officially accepted to the Doctorate of Nursing Practice (Nurse Practitioner) program at the University of Iowa, and we could not be more thrilled (seriously!). This is something that we have hoped and prayed for, for a long time - to stay in Iowa for Beckham's health care and to get Nate accepted into a top DNP program. Nate is thrilled by this news.....though he is dreading going back to school again. His program will start in June, and we will be looking at moving to Iowa City soon.Way to go Nate! We're so proud of you!
Sunday, December 13, 2009
7 years....and counting!
7 years ago today, Nate and I were married. And even though we don't look like it (the picture was taken at the end of our wedding day, showing how tired we were), we were happier than words could explain...and that has never changed. I sure love the heck out of this guy, and can't wait to spend eternity with him! No matter what we go through, Nate, you're mine, and I'm yours.
-Kim
Thursday, December 10, 2009
Iowa blizzard
Iowa (along with most of the rest of the country) experienced a monstrous snow storm this week, resulting in a monumental (that was the exact word used by the news) blizzard. And guess what responsible parents took their children outside to play in it? Yup. That would be us. Here's some shots to show just how much our kiddos loved playing outside in the weather.
Who says you can't have buckets of fun when the wind chill is -20?
Iowa blizzard = freezing. Check out the size of the snow drift in the driveway behind Beckham? It was at least 3 feet!
And here is the snow drift when we opened our front door. Our place is on the lucky side of the street that only got a foot snow blown at it.
Who says you can't have buckets of fun when the wind chill is -20?
Iowa blizzard = freezing. Check out the size of the snow drift in the driveway behind Beckham? It was at least 3 feet!
And here is the snow drift when we opened our front door. Our place is on the lucky side of the street that only got a foot snow blown at it. All I can say is that it's a good thing that we love living in Iowa!
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