Excuses, Beckham update, and a true story...

I know that it's been a while, but after over 2 weeks, I am finally back to blogging. But before I start I would like to thank everyone that contacted us, concerned because we have not posted anything in so long, and hoping that the absence was not a bad sign. I can reassure you that we have not been in the hospital and that Beck is doing well, but I can also say that our lack of blogging has been from other crazy mishaps that have happened to us (mishaps I'd gladly take in place of being in the hospital!). So here are a few our "lack of blogging excuses."

First: A few weeks ago Beckham had a great hospital visit in Iowa City. His transplant doctor was so impressed with how great he looked, acted, and how great his labs (platelets over 300, and hemoglobin over 13!)and ECHO looked. I went home that night, planning on updating the blog with the good news the next day, but was unable to do so because I dislocated my shoulder while playing with the kids at the park (seriously, all I did was reach for a plastic rock on the kiddie rock wall and my shoulder dislocated...so weird). Because of this, it was super painful to hold my arm up on the computer desk and type a post (I know...super wimpy!) and so my post was put off for a week. I am fine now and feeling great and obviously able to type on the computer.

Beckham during his ECHO. I had to document this because he actually fell asleep during it, which is something he NEVER does!

Second: We experienced a week of...hmm...well...it was just one of those "one thing after another" weeks that threw us for a loop and reminded us that we are normal humans that don't just deal with hospital stuff. It started with our dishwasher door breaking (because our little Beckham decided to sit on the door and break it) causing water to seep out all over our kitchen floor when it runs, then our bathtub cracking and sending water flowing through our ceiling and into the kitchen (lovely), then one of cars decided to stop working, and then our internet getting turned off for 5 days. Too much fun for one week right? I hope that was an adequate amount of excuses, but honestly, we're home and healthy, and that's what really counts!

Next, to just give a Beckham update, he is doing great and loving every second of being in his own home. He is currently on his last week of his steroid taper and is tolerating it better than in the past. He is experiencing steroid withdrawal symptoms (nausea, loss of appetite, shakes, mood swings), but they are much milder than the last time and we are sure hoping and praying that he will be able to get off of them and stay off of them for good this time. He is also loosing weight like crazy, at almost a pound a week, and he weighed in at 29 lbs today (that's a loss of eight lbs!). He actually looks like Beckham again and not the Stay Puff Marshmallow Man (I mean that in a loving way). I Actually hope that his weigh loss starts to slow down. I would love for him to keep some of his chub and not turn back unto his skinny self again. But other than that, he is doing great, but still severely immuno suppressed because his B-cells have still refused to come back.

THE RAPID WEIGHT LOSS OF BECKHAM:

One month ago

2 weeks ago

Yesterday

Lastly, I would like to share a story, a true story, that happened yesterday. My mom used to tell my younger brother and I (who are only 13 months apart - just like my kids) a story about how when we were toddlers we, instead of taking a nap, pulled off each others diapers and painted each other and the bedroom in our diaper contents. My brother and I would always laugh at that story, but my mom would not...and today, I understood why!

I put the kids down to nap today and heard them laughing about 15 minutes later (never a good sign). I then went upstairs, opened the door, and then heard Gwen say "he stinks." I then looked in Beck's crib and felt my felt my eyes pop out of their sockets. Beckham had stripped off his pants and diaper (his new favorite trick is stripping off his clothes and diapers. So much fun..ha ha!) and had panted all of his bedding, his crib, himself, and much of the wall with his diaper contents. Luckily, Gwen was not involved in this mess, but I am sure she would have been if I had not come up when I did. But suffice to say, I had a huge job of cleaning and disinfecting their room, something that I never want to do again! Don't worry though, I did NOT take a picture, for it was not something that I wanted to remember. Yuck! So, I want to officially apologize to my mom for what John and I did as toddlers. Please forgive us!

There you have it. I hope that I did not bore you with my excuses for not blogging, I hope that I gave you enough of an update of Beckham, and I hope that I did not gross you out too much with a Beckham poop story.

-Beckham & Co.

Utah Baby Guide article

I was contacted in January by the Utah Baby Guide and asked if I would be willing to write an article telling Beckham's story for their February magazine. Naturally, I said yes, and was excited to write something for the state where I grew up, but then was unable to do so because of Beckham's health. I was contacted again in June, and again, I said yes, but I asked if I could have a little time to finish, knowing that our lives might turn upside down again. Luckily, I was able to finish, and the magazine is now available.

Click here to view the website, and then click on the September 2009 magazine. Beck's article is on pages 46-50. If you are unable to view it for some reason, contact me and I will send you a copy of the article.

Thank you Utah Baby Guide for allowing us to share Beckham's story, and allowing me to do it in my own words!

-Kim

Oh, just a side note: at the bottom of page 47 there is an error. It is supposed to read:
"He was the first infant transplant patient ever (in the University of Iowa transplant program)that went home without any tubes, including feeding or breathing, and was even able to nurse and take a bottle (another first for an infant transplant patient)."
But instead, the part "that went home without any tubes" was left out.

Transplant Anniversary

It's always harder for me to find time (or to make time) to write a blog post when Beck is out of the hospital. It seems like I always have one more thing that I need (or want) to be doing instead of sitting in front of the computer, writing something about our small family. But a huge milestone was just made by our little Beckham, and I cannot let another day pass without sharing this with everyone, for it has now been over two years since our little guy received his precious gift of life, his new heart.

Most of my mornings are spent outside walking my two children in their double stroller. This is such a peaceful, stress relieving out for the three of us, giving us something to do besides sit indoors all day, trying to stay away from germs. Yesterday in particular was one of my favorite walks - the air was warm, there was a cool breeze blowing, the humidity was low, my children were not screaming at each other, and there was no one else to bother us. And as I pushed the stroller, while my children enjoyed their fruit snacks, I looked down at Beckham (who was laughing at himself) and this is what I saw:

Which soon escalated to this:


For those that don't know, my son has absolutely no liking for anything sweet, and I was only fooling myself to think that he would eat a fruit snack (which Gwen was happily scarfing down like a normal child), and not find other ways to put it to use. With this, Gwen and I had a big laugh (Beckham was also laughing at his new talent), and I grabbed my camera phone to record this moment in history. I then smiled and chocked back a few tears (I'm such a girl) because here my little boy sits alive, sticking fruit snacks up his nose, loving his life to the fullest, while an angel heart sits in his chest, giving him life with every beat.

We don't have the words to say how much we love our Beckham and the heart that beats in his chest, nor do we have the ability to fully express our gratitude to the Campbell family, who chose to donate little Jake's heart when he was taken from them. But we do have the opportunity to let Beckham live each day to the fullest, and never forget what we have been given. Because of this, I wanted to share some pictures of little Jake which the Campbell family has so graciously given us permission to do so, so that you can put a face with the heart that now resides in Beckham. One thing we know for sure is that this heart was so loved before if ever came to us, and we can only image how full Beckham must feel having it in his chest.

We love you Andy, Holly, Ben, and Alex. We are so grateful to have you in our lives, to share Beckham with you as he lives each day because of Jake and your selfless choice.

-Kim, Nate, Gwen & Beckham

Update 8/15/09

Just wanted to let everyone know that we are home from the hospital and are mostly puke free. The doctors are still thinking that the reason for Beck's vomiting is steroid withdrawals and because of this, Beckham, has been switched from Prednisolone to Cortef, which is supposed to be much easier on the gut (but much worse in taste - you should see little Beck try to swallow this. Poor kiddo!). He will be slowly tapered off this over the next couple of months and then we will meet with Endocrinology again for evaluation.

On another note, the rest of Beckham's hematology labs came back and showed that he still tests positive for an antibody that is attached to his platelets (which was the reason for his ITP in the first place). This basically means that Beck would bounce right back to his ITP and Hemolytic anemia were it not for the steroids and Rituxin infusion. His transplant doctor is hoping that the destruction of his B cells from the Rituxin will be enough to keep his ITP and Hemolytic Anemia from returning once he is taken off of the steroids....but only time will tell. But, his B cells will remain destroyed (through more Rituxin infusions when needed) until he tests negative for the presence of an antibody, which could be for a year or more (who knows). It looks like it will be a long time before this little guy can venture into the outside world (or the rest of us!). Let's just all pray that Beck's system will remain strong with only the Rituxin and not steroids, because he has to come off of steroids. They are too much for a little guy like Beckham to be on for an extended period of time. He is already pushing his limits as it is (that is showing because of his inability to come off of them).

Oh, just to clarify my statement in my last post: the reason that the Des Moines Hematologist does not completely think that Beck has Evans Syndrome is because she believes that his Hemolytic Anemia and ITP were caused from his Tacro (anti-rejection med), which his transplant doctor disagrees with. Because Evans Syndrome is a reoccurring syndrome, and incurable, we will again have to wait and see if it returns and then, if it does, then they will know for sure that he has it. Make sense?

Thanks for all of the continued prayers for our little guy! They mean so much.
-Beckham & Co.

Update 8/12/09

I'm sure that the "update" title is usually an indicator of a hospital post for our little guy, so I'll just skip right to the point and say that Beck is back in the hospital for the same symptoms as his hospital stay a couple of weeks ago: puke, puke, and LOTS more puke. Yuck!

Beckham's very slow steroid taper began again last week and as it did, his body quickly showed signs of not being able to tolerate it with a loss of appetite and loads of puke. Yesterday his vomiting got out of control and we knew that he was destined for a stay at his second home....I mean the hospital, where he still remains and probably will remain for the rest of the week. The crazy part is that all of his labs in the ER were normal (except for showing that he was dehydrated): Hemoglobin - 12.9, Platelets (which did not clump) 290, WBC - normal (I can't remember the exact number), etc. Can you believe it? My baby boy....normal....who would have thought? All of this pretty much rules out a virus (hopefully) and the thought, again, is that his body is not tolerating being off of the steroids, but, just in case, the doctors are also ruling out everything else. This means blood work (to rule out CMV), GI doctors being called in for an abdominal ultrasound (which showed nothing out of the ordinary) and possibly more tests (looking for ulcers or other things that could have been caused by steroids), and the addition of the Endocrinology team.

Beck got a large dose of Cortisone at about 1:00 AM this morning and his steroid dose was increased with his morning meds to help with his nausea. This definitely seemed to do the trick as Beckham woke up at 5:00 AM as a crazy, hyper boy, ready to run down the hospital halls like a maniac. He was so crazy that we could almost not keep up with him with his trailing IV pole that was attached to his arm. After a while, he got so sick of being attached to the IV pole that he ripped his IV out of his arm again. Oh well. Lets hope he can keep up his fluid intake without the help of IV fluids.

The plan for now is to wait for the rest of his tests results and then go from there. The doctors are almost positive that Beckham is vomiting because of the steroid withdrawals, but they will make sure of the fact first. There is a test that can show if your body has whacked out cortisol levels (produced in the Adrenal Gland, which his steroids suppress), which would prove that Beck's vomiting is caused from his long term steroids use, but the test would for sure come back inaccurately positive because he has been on them for so long. But if Beck does not have issues anywhere else than the Endocrinologist would like to completely switch Beck from Prednisolone to Cortisone, and taper it slowly over months, which will be much easier on his body.

Also, I should mention that Beck had a consult with Hematology here in Des Moines and a couple of things came to light during that visit. 1 - That blood tests still showed that Beckham tests positive for an antibody in his system. 2 - That if he comes off of the steroids, he will run a HUGE risk of rebounding right back with the ITP and Hemolytic Anemia. 3 - The reason why his platelets always clump may be because his antibody is still attached to his platelets and cause them to clump. 4 - Beckham may not have Evans Syndrome even though he has most symptoms and criteria. And 5 - She (meaning the hematologist) believe (like the hem/onc docs in Iowa City) that Beck's ITP and Hemolytic Anemia was caused by his Tacro/Prograf (anti-rejection drug).

I think that I covered most of the needed information, but I could be wrong, but that could be because I spent most of last night in an ER, slept in a hospital bed with a crazy two year old that was attached to an IV that beeped all night, and was woken before 5:00 AM to a hyper kiddo that as ready to reek havoc wherever he went....and talk to his many friends on his Banana phone. So cute!

Scaddy's!

Hey everybody, this is Nate and (sometime next week between the 17th and the 20th) my parents are opening a new restaurant in downtown Salt Lake City called Scaddy's. It is a family owned and family ran establishment that is going to boast an amazing breakfast menu, continue the Legacy of the Wayneburger, and provide the freshest food in Salt Lake (everything made to order and even the fries will be home sliced in the store).

What can you do? Well until it opens you can help us get out the word.
First, by telling your own friends and family in Utah about Scaddy's.
Second, by becoming a fan on Facebook.

Scaddy's on Facebook

Then in the next week we will make sure and announce opening day with the hopes that all of our Utah friends will make the visit...you'll be glad that you did (If you aren't a Utah friend you are still invited, but we understand if you don't plan your summer vacation around this).

Where can you find it? I'm glad you asked...
1846 South 300 West...right by the 21st Street area Costco just off of I-15.

We are excited, Scaddy's is going to be great. And make sure to become a Facebook fan...next week we will be having contests giving away coupons for free food!

Scaddy's - Fresh Taste is Everything!

Two is he and he's home...Yipee!

Yes it's true, Beckham is both 2 years old and he's home to celebrate! What a guy right? Let's start with the hospital update first so that we can end with his birthday.

After a few days in the hospital, Beckham's vomiting lessened (he still pukes...but not as much) and most of his labs all came back as normal. We were still waiting on his Tacro level, but the doctors agreed that Beck (who was running around like a manic) was acting well enough that he could go home and that agree to call us later with the level. With this news, we did not hesitate and headed right home to hopefully enjoy a quite birthday weekend. So far all has been...umm...well...relatively quiet, despite a quick trip to the doctor because Beck's lower "male area" was severely swollen, and another quick trip to Iowa Radiology so that an ultrasound could be done to make sure that everything was alright with his "man hood." And as it turns out, Beckham has a severe case of FAT lining his lower area. We did not notice this before because his stomach was so distended and it hid his lower chubby extremities, and now that he has lost a couple of pounds it looks larger than it actually is. So all in all, there is nothing to worry about. Whew!

On to our birthday boy! First, a great, big, HUGE, Happy Birthday to our amazing baby....hmm....I mean toddler, for he is now 2 years old (can you hear me sniff as I write this?) and no longer a baby. Here's a couple of pictures of the big day. Note: the charger on our camera is broken and OF COURSE, it is not in stock in any stores in Des Moines, so I had to take the pictures with my phone. I apologize for the quality of the pictures in advance.

After a hearty dinner if Pringles....

Next came the cake.

Beckham has absolutely NO sweet tooth (fruit, cookies, cake, candy, etc.) and when we considered what to do about a birthday cake, we were a little stumped. The only idea we could come up with was a huge Oreo because Beckham will sometimes eat them. Guess how much he at of his piece of cake? ZERO! Now that's self control for you.

Beck opening his presents. He showed almost as much enthusiasm as his cake when it came to opening his presents. It was a good thing that Gwen was close by and showed Beck how a pro opens presents.

I could not get him to hold still long enough for a picture. I guess that's what you get when you take a picture with your phone!

And there you have it; that was about it for his birthday. I know that we look like lame parents for our party planning skills, but truthfully, I don't think that Beckham would have wanted it any other way. That's our little guy, our two year old, our living miracle, that we love so much and are so thankful that he is ours!

Update 7/29/09

This is Beck saying "Uh oh, I'm still in the hospital!"

After a slew of tests (blood work, urine analysis, and even a head CT scan) it looks like we might have pinpointed the reason for Beckham's puking illness (but then again, he is Beckham, and...well...you never know!). The thought is that Beckham's endocrine system is not handling him being off of the steroids, even though he was on a very slow, month long taper, and is causing him to be very sick. Because of this, he was started back on the steroids tonight and will be tapered off of them even slower than the last time. Let's hope and pray that this does the trick!

Beck's Tacro (anti-rejection med) level has also decided to whack out and rise sky high and he will have to stay in the hospital until the docs can get it under control. His transplant doctor believes that the rise is because of the lack of food in his body (from all of his vomiting) because Tacro is highly effected by food (that is why he has to be NPO for an hour before and a half hour after his meds). At least Beck was able to eat a little bit today and keep it down (woo hoo). Actually, when the nurses were putting in his IV today (because he literally ripped out his other IV and then laughed as he squirted blood all over the place) they had a good laugh because during the procedure Beckham was crying so hard that he let out a huge burp and all of the nurses rushed in to prepare for puke but instead said in unison "whoa, that smells like a hotdog." It was great! At least he kept it down right?

We're just glad that the staff at Blank Children's Hospital love Beck so much and treat him so well. They have been so funny as they hardly recognize our little chunk, and have commented that he still is just as cute. We sure second that thought! And speaking of a chunk, Beck has actually lost 3 lbs this week. Poor kid. At least he has the chunk to lose!

Let's pray that we can go home tomorrow! Wouldn't that be great?
-Beckham & Co.

and there goes our record....

Blast it all! Our amazing "home streak" has finally ended as our little guy is back in the hospital tonight (at least we were home for 10 weeks straight!). What a bummer, especially when this day started off with such a high as Beckham finished his LAST dose of steroids this morning.
DANG IT....is all that I can say (well, I can think of more choice words to use, but I will refrain!).

Beckham's appetite has slowly started to lesson over the last couple of weeks as his steroid taper has come to a close. We were very excited for this change, basking in the joy of not having to a child that was ruled (literally) by his stomach, until he started to completely refuse any sort of food or drink. At the same time, his lovely (ha ha) vomiting habit returned. It started out with him vomiting when he was angry and then escalated to when he would gag on his meds, and today it turned into a non-stop vomiting festival. With this, I knew that it was a bad sign and could hear the hospital calling our names as I talked to both his local doctor and the transplant team who both suggested it. So Beckham, Nate, and I, made our way to the emergency room (Gwen stayed here with my mom whom I can't thank enough for being here at the right time) to get to the bottom of what was wrong with this little man.

Once there, Beckham, in his usual fashion, greeted the triage room with vomit, and then greeted his other room in the same way. He was actually puking so hard that three doses of Zofran could not control it (poor kiddo!). And after 3 pokes to get an IV, blood was drawn which showed an elevated white blood count, hinting toward some sort of infection. What the infection is we don't know, and where he got it is even more of a mystery, for we never leave this stinking house except for walks!

For now we will just play the wait and see game, and pray that 24 hours of IV fluids will do the trick. The docs are going to be very thorough with Beckham because of his EXTENSIVE, CRAZY history, and will try to rule of everything. Until then, we can only hope that he will be in our home for his birthday on Saturday!

We'll keep you all posted! Keep our little almost-2-year-old in your prayers!

The Cardiology Scoop....

I know that I am behind quite a bit, but here's the scoop on Beck's cardiology appointment from last Friday.

Gwen, Beckham, and I, trudged up to Iowa City last Friday for a full day of labs and tests. As soon as we pulled up to the hospital, Gwen looked over and said "I find it! Yeah," in her super excited voice. She then remained excited as we walked inside, but threw a fit when she saw that we were going to the clinic and not getting a room on the floor. That was one of those moments that make you want to laugh and cry - laugh because of the humor of the situation, and cry because my little 3 year old is way too used to having a brother in the hospital. I did laugh however, and Beckham did the crying because he knew exactly what was coming.

After labs (which only took one poke!) and an ECHO, we saw his transplant cardiologist who gave us the following info:

-Heart looks perfect (yeah!)
-Hemoglobin was at 13 (Holy crap right? That is the highest it has ever been in his whole life!)
-Platelets clumped (big shocker there...at least we know he has some!)
-B cells are still destroyed from the Rituxin (and probably will not come back for at least 6 months....which means a lot more lock down...boo hoo)
-Blood Pressure is smoking high (whether from the steroids or his weight gain, we don't know) and we will need to increase his Enalipril dose and check his BP twice a day.
-We do not need to be seen again until September (yeah!)

That's about it in a nut shell. The appointment was, for the most part, positive and the best part is that we are still at home. Crazy! We love being home, even if the term "home" literally means "not leaving our home," for we are getting very used to our life in a bubble. It's worth it. Beckham needs to stay healthy and this is the best way to do so. One thing that his transplant doctor did say is that they know that Beckham does not react well to a virus - his blood clots, which caused his stroke, were caused by his Hand, Foot, and Mouth disease from last year, and his ITP was caused from the Rotavirus/Pseudomonas (which eventually lead to his Hemolytic Anemia and Evans Syndrome diagnosis) - and that we need to keep him away from any viruses. I GREATLY second that thought!

-Beck & Co.

a HUGE milestone(s)

Are you ready for this......it only took a year for us to accomplish this.....but....

Beckham has been out of the hospital for more than 6 weeks!
Way to go little buddy!

And, we now have a sumo wrestler instead of a baby.

Seriously, what ate my baby? Isn't it crazy what steroids can do to a little guy? Good thing that we are almost done with them.

Oh, and he has also learned how to cheat.

Those are some amazing milestones (more or less) don't you think?

Beautiful

I recently came across something that was just too beautiful to not share. I hope that the author will not mind that I am adding it to my blog and sharing it with all of you. It's taken from a recent post to an online transplant support group which I am a member of. I hope that it touches your heart as much as it did mine....

"I have to share with you a most wonderful moment. When all is still, in the dark of night, while laying on my left side, I can feel my heart beating. Not every night, just ones that become special. I try not to breathe too deeply, for fear my body will shift and the feeling of the heartbeat will go away. As I lay there, feeling this wonderful sensation, I send a prayer up to my donor, thanking her for her gift of life to me. The greatest feeling in the world is the heartbeat of life it self. Thank you for letting me share this."

After being home for 6 weeks (we've almost past our record...cross your fingers) and enjoying every second of it (even if it involves a "terrible, horrible, no good, very bad day"), I have reflected not only on the miracle that have taken place in our lives, but the beauty of this whole experience. I don't have the words to express all of my feelings, or the skill in writing and articulating all of the emotions that continually run through my brain, but the above statement eloquently describes (as they pertain to Beckham) what I have struggled to say for so long.

Once our lives calmed (or calming, since we are not there yet), I found myself once again sitting and holding Beckham with my hand placed on his heart, feeling every perfect, smooth, rhythmic heartbeat. As I do, I'm reminded of what Beck's previous heartbeat felt like before his transplant, (I actually had mistaken his pumping heart for severe chest congestion (like from a patient with horrible pneumonia) until his doctor corrected me and said that it was his heart fighting desperately to live) and I can't believe the difference. It is indescribable....to say the least. What a difference a perfect heart makes.

The only words I can add to the above authors is my own, in that this heart is at home in Beckham. We love this heart and we are taking care of it, for it is what gives our son life. A wonderful happy life. Here's the proof:

Quick update:
Beck is slowly being weened off of the steroids (hallelujah) and should be finished with them at the end of July. We have sure noticed a huge change in his behavior since we started the steroid taper, and are loving it! Beck's appetite has still not decreased, and the proof is that he weighed in at 33.5 lbs this week (10 lbs gain since we left the hospital). He is now in the 98th percent of weight for his age (he is usually in the 3rd). He really is a chunk...but a cute chunk.

We will not know the status of his levels until next week when we have our appointment in Iowa City. We are sure praying that they have continued to move in the right direction. Until them we hope that we will not have another update, except for 4th of July festivites. Here's hoping and praying!

Oh, and on the lines of praying, please keep our cute transplant friend Bryce (you will have to sign up for Carepages (it's free) to view his info: BryceDraisey) in your prayers. He is waiting for his second heart and is extremely ill.

Happy 4th of July to everyone out there.
-Beckham & Co.

"Alexander and the Terrible, Horrible, No Good, Very Bad Day"

During the last two weeks much of my time has been spent crouched on the bathroom floor, reading a book to Gwen, and hoping beyond hope that she will inadvertently use the toilet in the process. Some of the time has been successful, and LOTS of the time has been a failure. What have I learned in the process? Well, mainly that potty training is hard, really hard. It's going to take time, lots of time. Good thing that we have lots of books, books that take me back to my childhood, and books that make me smile and remind me of what life is all about. Today I was reminded of one of those books that I recently read to her. It was almost a perfect match for the day that we had today, thus the title of this post. If you haven't read this book, please do. It's a must. In it, Alexander had a day where nothing seems to go right. That is just what happened here. Let me start at the beginning. You'll probably want to sit down. It might take a while......

One thing I love and hate about Nate's occupation is the LONG 12 hour shifts that he works three days (and sometimes nights) a week. Last night was one of his long shifts that left me and the kiddos home alone, which is usually not a problem but an enjoyable adventure, but unfortunately I was hit with a migraine - horrible pain, nausea and vomiting, and blurred vision - at the exact same time (lovely).

After getting the kids to bed and taking some migraine medication, I too went off to bed, but found myself restless and unable to relax because of the constant pounding of my blasted noggin. Around midnight I slowly started to relax, only to be awoken at exactly 12:00 by my alarm clock, blaring to life at top volume, lovingly set by one of my children (how sweet). This, of course, woke up Beckham, reminding him that he was always hungry, and making him demand Pediasure. And after getting him a bottle and tossing and turning for a few more hours, I was finally able to drift off to sleep around 2:30. My slumber was disturbed an hour later as I opened my eyes to my tiny 3 year old, demanding that she needed to sleep with me and I, of course, gave in and pulled her into bed with me, thinking that she would quickly fall back to sleep.

I was definitely WRONG...Gwen had another idea.

After pulling her into bed, Gwen quickly turned over to Beckham (who is in a crib in our room because of his steroid hunger during the night) and yelled for him to wake up, and then began laughing and playing on the bed. I sat her down immediately, explaining that it was "night night" time, only to hear Beckham yelling again and demanding more food (oh joy). I once again filled up a bottle of Pediasure and handed it to him to fill his stomach, but soon found him soaked from head to toe from a 10 lbs diaper (you moms know what I am talking about!). This called for the lights to be turned on, a complete diaper and clothing change for the little guy, and, of course, made Gwen even more hyper and ready to play. Mind you, this was all with my pounding head guiding the way. Yeah! But don't worry, I got Beck changed and Gwen did fall asleep...3 hours later (I should know, I was awake for it!).

When Beck awoke me at 9 AM, I turned to find Nate asleep next to me, He looked so exhausted from his crazy night shift in the ER that I forgot about all my exhaustion (yeah right) and quickly took Beckham downstairs to get him his meds - due a half hour earlier...oops. As I went to give Beck his meds, I noticed that one of the bottles was almost empty and required me taking out the stopper to get the last remaining drops. As I did so, I missed directed my aim and sent a fork piercing into my skin (smooth move Kim). I probably would have screamed out in pain if I hadn't smelled a foul odor and realized that Beckham had not only pooped, but blew out (literally) of his diaper all together. I won't go into further detail, but know that this was the blow out of blow outs that would make almost everyone sick, or make my brothers, Nate's brothers, and Haley (it's true) proud to call Beck their nephew. And with this, there is only one thing that I can do: stick him in the bath.

As I began peeling off Beck's clothes and starting the bath water, I heard my screaming, sleep deprived (I wonder why?) Gwen, come into the bathroom. She continued to scream as I bathed him, during which time I noticed something funny about Beck's left hand. His left pointer finger and much of the back of his hand was deep purple, almost black - from a bruise? from a blood clot? from a broken bone? I don't know - and causing him pain. I quickly grabbed him out of the bath and took him into my bedroom (with the screaming Gwen in tow) to show Nate, who agreed that something was not right and then went downstairs, found my phone, grabbed Gwen some milk to stop her crying, and then called the transplant team to talk about his hand. As I talked to his transplant coordinator about Beckham, Gwen, was silent until I heard a huge wail escape her mouth. I turned, expecting to see her throwing another fit, and found her covered in vomit (are you freaking kidding me?). My brain at this time was about to explode - from both the situation and my migraine - but didn't (whew), so I cleaned up Gwen and her puke.

On the transplant teams advice, I trudged off to the doctor with both kids because Nate had to sleep during the day because of his overnight shift. Once there, both kids lost it - Gwen because she thought the appointment was for her, and Beck because he knows the appointment is for him - and I ended up carrying both of them most of the time (if you do the math right, you will realized that that is almost an extra 60 lbs I was trucking around). I'm sure my arms will be pretty sore tomorrow because the appointment lasted for more than 2 hours so that they doctor could make sure he was not missing anything with Beck. The results are that his finger is not broken, and they could not see a blood clot. It looks like Beck must have injured it at some point when we were not looking. Labs were also drawn and his hemoglobin is 10.5 (no kidding) and his platelets are 44 (lower than I was expecting, but the transplant team was not overly concerned by this).

As I drove home from the doctors I pondered over my crazy morning, looked back at my kiddos who both had a sucker in their mouth, and stopped at a fast food restaurant to get the kids something unhealthy to eat because they had had a hard morning. After ordering and receiving their food, Gwen, of course, lost it because she did not want "french fries," Beck cried because I could not get food back to him fast enough, and I smiled because I knew that when we got home, they were both going to go down for their nap.

It is now night, both kids are in bed, and Nate is home to help me. All seems forgotten. Was it a "Terrible, Horrible, No Good, Very Bad Day?" No....but it was defiantly not my favorite. And in the words of Alexander, "My mom says some days are just like. Even in Australia."

Three/Update/Father's Day

Again, I am trying to shove a whole bunch of info into one post. I guess you could say it is my way of multi-tasking.

First off: 3 was the big number for the week in 3 different ways.

1. Our little Gwen turned 3 this week. Yeah Gwen! I can't even begin to describe how much we love our little girl and how thankful we are to have her in our lives. She has literally been our saving grace with all that we have been through with Beckham.

Some fun facts about Gwen:
1 - She currently weigh's 5 lbs less than Beckham!
2 - Her favorite thing in the world right now is Scooby Doo.
3 - She has not yet mastered the art of potty training, but tries to coach everyone else when they are in the bathroom (sliding books under the door for them to read, continually uplifting them with phrases of "you can do it," and giving them a high 5 and an "alright, you did it!" when they leave the bathroom).

Gwen's anxious anticipation to blow out her candles.

...and she finally gets the chance.

After cake, presents, and playing, this is how Gwen ended up spending much of the night. She actually was not feeling too well, and the excitement of the day wore her out.

We love you Gwen! Happy Birthday!

2. Our next big "three" of the week is a HUGE milestone that we have just conquered.... Beckham has now been out of the hospital for more than 3 weeks! Can you believe it? We have not reached this mile stone since February, and to tell you the truth, WE LOVE IT! Now all we have to do is make it past 6 weeks. It has been almost an entire year since we have done that.

3. Our last "three," or something that includes a three, is that Beckham has reached 30 lbs! I'm not going to lie, 30 lbs is definitely adding more than just much needed weight, for Beck is seriously chubby right now....and serisouly cute. Here is the proof:

How many chins can one kid have? Oh, and yes, that is Desitin on his face again. Seriously, why does this kid feel like it needs to be on his face and not his butt?

On to the "update" portion of this post (are you yawning yet?). Beckham had labs drawn on Thursday which, of course, clotted and needed to be re-drawn on Friday. After 4 finger pokes, and three tubes of blood on Friday, I received a call once again from his home health nurse, letting me know that all of that blood had also clotted. She once again came right back and re-drew Beck's blood, but this time from a vein puncture. The results from that blood showed that his hemoglobin had risen to 9.4 (holy crap...that's basically normal for Beckham!), but his platelets had once again clotted. I am guessing that his platelets are basically normal as well because he stopped bleeding from the vein puncture almost immediately after she took the needle out! Crazy! I can't believe that I have a basically normal baby, but I LOVE it! Let's just hope that he stays healthy and does not catch something that will reverse his progress (not the easiest thing since the sick bug has been running through our house, and Beckham is a walking germ target with the steroids, Tacro, and destruction of his B-cells from the Rituxin).

Last, but not least, HAPPY FATHER'S DAY to my afro wearing (note: the afro was cut off soon after this picture), ridiculously good looking, incredibly dedicated, insanely hilarious, and kind hearted husband. Our kiddos couldn't ask for a better father and I couldn't ask for a better husband. We sure love all of you (even the afro!)

Update/Cardiology appointment/ Zoo visit

My mom called me worried, stating that it had been a long time since my last post, and wondering if we were still doing alright. Her inquiry was one of many, which reminded me how lucky we are to have such wonderful people continually concerned and checking up on the status of our little guy. I do apologize for the lack of posts over the last week (or longer) as I have been procrastinating due to the fact that labs seem to constantly change, and I keep waiting for more info. I have also been unable to post because it seems that every time I sit down to type, I am disturbed every couple of minutes by a little toddler, demanding more food (seriously. I have already gotten up 5 times since I started this post to feed my bottom-less pit). And I should also add that there is a lazy factor in there as well (just being honest!).

First off, we are still home. Woo hoo! This is not only a shock to our family, but to his doctors as well. They were definitely not thinking that Beck would make it this long without another hospital visit. Either did we!

Second, I'll give a Beck update (since I am sure that's what most people are curious about). For now, he is doing fairly well and staying stable. Stable is good! During his labs last week, Beckham's PICC line decided to kick the bucket, spring a leak and have to be removed (he had it for 3 months). What a bitter/sweet thing to happen (bitter because now he will have to have weekly finger pokes, and sweet because now I don't have to deal with the stupid thing!). Labs were still able to be drawn from the blood oozing from the hole where his line went into his arm (which only took 5 minutes to stop bleeding...how nice!), which showed that his hemoglobin had risen to 5.8 (small rise, but we'll take it) and his platelets were at 97 (holy smokes!). The doctors were all very encourage by the lab news, saddened by the PICC line news, but have no plans to have a new PICC line placed back in. Labs were checked again this week and showed that his hemoglobin has risen to 6.7 (yeah!), but his platelets were at 13. I literally felt my heart sink when I heard this news. It took three months to get to the 97, just to have it crash back down again. Good thing that my heart was able to recover the next day when I was told that the 13 was inaccurate (whew). The real number is still unknown, but it is definitely over 13. The lab only counted the platelets that had not clumped, and in order for them to clump in that fashion, he has to have a sufficient amount. The thought is that they are probably still around 97(ish). Cross your fingers!

Beck also had a cardiology appointment this week. The transplant team was very pleased to see the change in his color (still pale, but without the yellow tinge) and also pleased to see his HUGE weight gain. Beckham left the hospital at 23 lbs, and now weights 29 lbs. He is a chunk...and I don't use that term lightly. He also had a ECHO yesterday that showed that his heart is working great and tolerating the high doses of steroids and also his weight gain. Beck's transplant doctor is going to have a chat on Monday with the hem/onc team to see if we can start to lower his steroid dose. The plan for now is to be on the steroids for 8 weeks (he's been on them for almost 4 weeks), but we are hoping that this 8 weeks includes his steroid taper. Here's hoping! For now we will not see the transplant team until July.

This how I found Beck after his cardiology appointment. Do you see the size of his cheeks? Such a steroid face.

Lastly, we made a break out of the house to visit the Des Moines zoo last week. The zoo sets aside one night a year for what they call "Dream Night," which is a night just for children with serious and chronic illnesses and their families. All I can say is that it was awesome. The zoo provided food, entertainment, crafts, opportunities to feed the animals (including a giraffe), gifts for the kids, and many more. Beckham was pretty grumpy through out the entire thing, but Gwen was in heaven. It w

Beck spent most of the night screaming in the stroller (except when he was eating!).

Gwen loved the princesses!

Gwen with Nate's sister Haley. We miss you Haley. Hurry back!

Still home to update!

After a whole week (and one day), Beck is still home (knock-on-wood) and is doing as well as can be expected, given the fact that he is still very ill. Since February, Beckham, has not been out of the hospital for more than two weeks. We are sure wanting to break that record. Wouldn't it be great?

Beck and Gwen out for a walk. Do you see him giving one of his rare semi-smiles?

Since being home we have had a great time keeping ourselves busy with lots of appointments for Beck, visits from our families, long walks outside in the beautiful weather, and trying desperately to keep 'Captain Angry' happy and eating. Beckham's steroid rage is in full force, and along with that, his appetite has also kicked into full gear. Beckham now has at least 3-5 8oz bottles of Pediasure a day, along with two during the nights (you can only image how many diapers we go through), and 3-5 meals. When he is not cursing the world, he is screaming for the fridge to be opened, or asking that he can be in his high chair to eat. Truthfully, it's been great to see his appetite back, as opposed to his complete appetite loss when his hemoglobin was so low. His Buddah belly is back, along with his adorable chubby cheeks. We can't help but smile every time we see....even if it is very hard to make him smile in return.

WARNING: The below picture is a little brutal!

Taken during Beckham's first haircut (despite his expression, he was actually really good during it). We needed to get rid of the 'Donald Trump' look (the long, comb-forward hairdo) so we gave him a nice buzz cut. As you can see, he was still bleeding from when he hit his mouth almost two days before. Can you see the color of his blood? Looks like Koolaid right?

Beck's hemoglobin has remained in the 5 range, with the highest being 5.5. His platelets were at 47 last week (I know, don't fall off your chair) and continue to climb. What thrilling news this is for us....now it' his red blood cells turn. His low hemoglobin still makes him quite weak and he prefers to be held much of the time. He also tires very easily (yeah, my heart breaks when I hear him huffing and puffing to climb the stairs) and needs to take frequent breaks. Of course he still finds plenty of time to torment his sister, color on the walls, and climb on the table.

Lot's of meds to add to his list. At this time last year he was down to two meds.

That's it in a nut shell. We will continue to take it day by day, and relish in the fact that we are home and loving it. Thank you for all of those that continue to reach out to our little family. We feel so blessed to have some many wonderful, kind hearted friends and family.

Much love!
-Beckham & Co.

Update 5/28/09

Little to update you on and lots of time....wait scratch that and reverse it....lots to update you on and so little time (remember that line from the original Willy Wonka?). Its been a crazy couple of days that have ended in me sitting in my own home with Beckham next to me. Unexpected right? It was sure unexpected for all of us and in all honesty a little frightening.

Beckham's hemoglobin has been going down slowly (5.5 yesterday and 5.2 today) and his platelets have been rising steadily (they are now up to 33), but unfortunately, for as much as I have looked forward to this, his platelets are not as important as his hemoglobin rising and we would prefer to see them rising just as fast...if not faster. Beckham's liver is also enlarged, causing me to freak out, but the explanation for this is that because of his large hemoglobin loss, his liver has taken a huge hit. It is not a large concern for the doctors, but his liver enzymes were checked and they are in the normal range (which they were not when he was admitted). All of his other labs looked relatively good as well, resulting in the decision for us to go home today. I was quite uneasy with this decision, especially given the fact that Beck's hemoglobin has been lowering everyday, and his threshold for receiving a blood transfusion is if he drops below 5. Because of all of this, I had a LOAD of questions for all of his doctors, making sure to mention all of my concerns. They were all very gracious, but all very unanimous that they think that they best place for Beckham would be in his own home and away from the germ filled hospital. I agree, but I know the odds of us ending right back there are quite high (not trying to be a Debbie Downer or anything) and I don't want to come even close to his hemoglobin dropping into a life threatening range again. The doctors are still shocked that Beckham lived through his hemoglobin dropping to 2.5, and even more that it did not send him into heart failure.

The plan for now is to have labs check twice a week and to return to Iowa City in two weeks for a check up. We will watch him very closely and have a very low threshold for taking him into the hospital. He had a big fall today and smacked his mouth pretty hard. He bled for quite sometime and ran the risk of us having to rush him back to the hospital, but we were able to get it stopped...I just hope, because of this fall, that this does not drop his hemoglobin below 5. Beck will also remain on steroids (oh joy) for at least a month.

I know that I have not made this post sound positive, but I do want to mention that I am thrilled to be home, just uneasy with how sick he has been, and continues to be. But it is worth it all to see the excited expression on his face when he saw us arrive at his home....even if it only lasted a few moments before his roid rage kicked in.

Update 5/24/09

As I am rubbing my eyes trying to keep myself awake, while listening to the Wiggles, while Beck refuses to go to bed (quite shocking as he has spent the last week sleeping most of the time.), I was reminded that I should probably do a quick update to let everyone know how our weekend has been.

Beckham's hemoglobin decided to drop down to 5.4 on Saturday (after his exciting 7.4 level on Friday). I talked to the doctors about this, asking if this was a bad sign, and was told that they actually think that the 7.4 level from Friday was probably inaccurate and that it is more realistic for him to be at 5. His level was at 5.8 today - a small climb, but we will take what we can get. A transfusion is still not planned, as the doctors want to continue to see if his body can replace his destroyed hemoglobin by itself. His platelet levels were also unavailable again on Saturday - even after the "special" way of collecting and running them off to the lab - due to the fact that the lab only runs this "special" test on weekdays. Lame. It was alright because for some reason his platelets were available today and the magic number was 29. Woo Hoo! Can you believe it?

Beckham still remain extremely tired, but making small improvements everyday. He actually walked around the room and out the door to a wagon today (the most he has walked in almost a week). He is also eating much better, throwing up only once a day, but preferring to only drink Pediasure most of the time. I did offer him some pizza yesterday which he gladly excepted, but screamed after almost every bite. I was a little concerned about this behavior, and when it happened again today, I took a look in his mouth a found many large white sores covering his tongue. Both the resident and his cardiologist looked at his tongue and were a little baffled if it was either thrush or something else. Either way, he was started on Nystatin tonight (which he surprising loves). Beck also finished his last dose of IVIG tonight and his steroids have started to be tapered down. Hopefully this will help with his "captain angry" behavior. It is so hard taking him for walks now because people stop to tell me how cute my baby is, only to have Beckham scream and scowl in their face in response (so sweet). I apoligize in advance if he has the same reaction to anyone else.

Thank you so much for the continued support for Beckham and the rest of our family. Thank you also to our Ward in Des Moines for the special fast that they held for Beck. We truly felt the strength from each of you.

Time for bed!
-Kim

Update 5/22/09

Just a few thing to report on for the day.

1. Beck's hemoglobin rose to 7.4 today! What is even better is that it rose without the help of more blood transfusions. We are sure hoping that this is due to the IVIG and the high doses of steroids that he is on at the present (even though his platelets did not respond to either).

2. Platelets once again clumped together during his blood draw, thus making it impossible to get a current level. I asked the question about whether or not this is concerning for his platelets to continually clump, and was told that it is strange, but not totally abnormal. I wasn't very comforted by this answer and asked that Beckham not be released from the hospital (just in case it happens sooner than later) until a they get a current platelet level. Tomorrow they will draw his blood a different way and rushing it to the lab to make sure that they get a current level.

3. Beckham still remains extremely lethargic and sleeps most of the day. When he is not sleeping he is yelling at everyone and their dog, and cursing (baby cursing) them into the next milleneum. I'm a little scared that with all of this steroid anger, that his eyebrows will stay perminantly in a "v" shape from all of his scowles. I was however, told today by the hem/onc doctors that his anger is a good sign and that we should also be seeing an increase in appetite. I sure wish the latter was the case. Beckham still has no appetite and what he does eat (which is usally Pediasure...nasty) he vomits.

4. Beck did get an ECHO of his heart just to make sure that everything was working as it should, and that nothing was effected from his loss of red blood cells (which was a high possibility), and sure enough, his ticker is looking amazing and working like a dream. I know that I have said this many times before, but Beck sure has one amazing, perfect heart.

With all of the these, the possibility of going home is something we all would love, but we are sure being extra cautious at the same time - not to go home too soon, just to be rushed right back (which has happened many times). Beck still has a long way to go, and his body is not recovering from this with the same vigor that it has in previous times. I am still a little worried about how weak and lethargic he remains, and trust me, I have brought that up to each of his doctors (I should just change my name to queen paranoid), but he is in the right place, and I can only imagine what his body is trying to recover from and the amount of time it will take him to get back to his crazy self.

Thank you a million, trillion times for all of the prayers and kind thoughts our way. Especially thank you to all of the people who have reached out to us who have children, or know of children who have suffered from the same, or similar illnesses as Beckham. It has helped so tremendosly. I have talked to his doctors about all of these cases and I am know that they have helped them.

-Beck & fam

Update. Thursday - May 21st

Hello. Us again.

Beckham had a very lethargic day, but his hemaglobin raised to 6.5 and we moved from the PICU to the general floor. We are continuing the IVIG and 'roids for now.

Kim was interviewed on the radio by Ken and Coline from Star102.5 in Des Moines for a Children's Miracle Netwok fundraiser in which she told Beck's story. It was going well until there was a large crash and bang. It was caused by Gwen the Destroyer who somehow managed to crash down their whole kids zone play area and then some. We got calls from friends in Des Moines listening and heard the take down...they said they immediately thought 'Gwen' before the radio dude could even say over the air, "Wow, it looks like Gwen just managed to take down our whole kids area for our listeners wondering what that was". If you know her this story doesn't surprise you.

So hopefully things go well for Beck's levels tomorrow...we will let you know.

Thanks for all your support.

Update 5/20/09

I had a great picture add to this post that was taken earlier today and completely explains without words how Beckham's day has gone, but I am unable to post it with this laptop (Nate has the good laptop with him at the Ronald McDonald House), so I will try to do the same without it. Beckham had a very stable, positive, angry, sluggish, and hopeful day. I'll explain...

Stable: He remained very stable, with labs indicating that the course of action the doctors have chosen to fight both his ITP and Hemolytic Anemia are indeed doing something...whether this continues is still unknown, but we're are remaining very hopeful.

Positive: Beckham's blood transfusions were stopped last night with the plan of checking his hemoglobin in 12 hours to see what his body would do with the new red blood cells (his levels were at 5 at that time). When labs were re-checked tonight, they indicated that his hemoglobin had stayed the same at 5. This was just what the doctors wanted to see, as did Nate and myself. There was actually a wave of cheers from the doctors, nurses, and us, when these results were revealed. Platelet levels were unavailable again due to the fact that they once again clumped in the process. I asked if this was concerning that they continually clump, and was told that this is expected with such low hemoglobin, but I was also told that in order for platelets to clump there has to be at least 20 to do so. At least we know his level is above 20! We'll take that!

Angry: Beckham is now once again full of "roid rage," as his high steroid doses have kicked in, causes him to once again act like an angry teenager, blaming everyone for his problems and taking it out on anyone who crosses his path. We have lovingly nicknamed him "captain angry" during these steroid periods. His steroids have also once again kicked his appetite into gear, which is very welcome because Beck has refused to eat for almost 3 days.

Sluggish: With this little increase in his hemoglobin, Beckham wants to once again move around and act like a normal 21 month old, but is unable to because of the weak state of his body. He did have much more energy than the last couple of days, but he is still quite weak and unable to walk without support. He once again spent most of the day curled up in the recliner watching movies (and making demands to anyone who walks past him).

Hopeful: After it was discovered that Beck's hemoglobin had remained stable at 5, the doctors had discussed transferring us to the floor, but soon decided against it because 5 is still quite a low number and his is still very ill. Tomorrow is the planned date for us to move to the floor if he remains stable and his levels do not drop. We are filled with hope at this news, and can't wait for the next step to be news of taking our little buy and going to our home in West Des Moines.

With all of these things aside, we still understand that Beckham is a very sick baby, with lots and lots to recover from. We also know that this will not be something that he will be cured from completely, but will most likely reoccur multiple times in his lifetime. Of course this is not an easy fact to swallow, and we have cried many tears over this fact (you should see my swollen eyes for proof...thank goodness for make-up!), but I know that Beckham wants to fight, and he wants to live. He is worth every tear, every hospital stay, and every penny that we have....and not just because he is freaking cute!

Lots of love!
-Beckham & Co.

Update 5/19/09 (evening)

To give the best description of what is now going on with Beckham, I will start again from last night....

After being admitted to the hospital in Iowa City yesterday for vomiting, fever, and lethargy, it was decided to wait until today to do any labs. At about 1:00 AM, I asked if Beckham could receive fluids in his PICC line because of his loss of fluids from vomiting, and his refusal to eat or drink anything. Because of this, they had to run tests to determine how dehydrated he really was (to give the proper amount of fluids) and when the nurse pulled blood from his line, his blood was the color and consistency of red Koolade (a very bad sign). The thought was maybe that his PICC line may not be drawing correctly, so they poked his finger and received the same results of diluted blood. They did however get enough blood to see that his hemoglobin was at 2.5, which is a VERY CRITICAL level. He was immediately rushed to the PICU at this time to await more test results and so forth.

This shows how weak he has been the last coupleof days.

Since that time, results have come back showing that Beck now has an antibody attacking his red blood cells, as well as his platelets. It is unknown if it is the same antibody, or if this is something new, something that has been happening for a long time, or if this was caused from his body reacting to the blood transfusions from last week. Either way, this does not change the fact that Beckham now has a condition called Hemolytic Anemia. The Hemolytic Anemia and the ITP combined create a disorder called Evans Syndrome. This again is a very rare disorder that Beckham's transplant doctor has never seen in a heart transplant patient. It will also be a chronic disorder from now on, and will probably be something that will flair up on and off through out his life. The doctors are completely baffled, especially when it seems that his platelets are starting to make a very slow recovery (FYI - platelet levels were not checked today because of the consistency of his blood causing them to clump together). I did ask the question as to whether this was a very bad turn for Beckham, and it was explained to me that the Hemolytic Anemia is much worse than the ITP, and is not something that he could go home with. His transplant doctor is going to research this very carefully and contact other physicians concerning this matter, while involving the hem/onc doctors in everything.

As of today, Beckham has been started back on IVIG, given high doses of steroids, and is receiving very small amounts of blood at a time - large amounts of blood given at once will cause him to go into heart failure when his hemoglobin is so low. He is tolerating it as well as can be expected. He was so weak and frail this morning, unable to even hold his head or arms up, and by this evening (after the first round of blood) he was able to reach for us, and of course, demand a movie. This was actually a welcomed demand for us as parents. He is also on oxygen to make sure that his body is getting the right amount of O2 to all of his organs due to his lack of red blood cells which usually do the job.

Our "Mr. Casual"

The plan for now is to continue with more IVIG and steroids, and possibly Rituxin. Another thought is to also start him on a drug called Rapamune (another immuno suppressant). The problem that this drug poses is possibly sending Beck into rejection of his heart. Because of this, the doctors will have to walk a very fine line between his Prograf and Rapamune, to make sure that he does not go into rejection.

All of this together makes Beck's condition "critically stable." He looks so bad right now, with pale skin with a yellow tinge, and bruises still covering his body. I think this is the worst part - having to physically see how ill he really is. We had somewhat of a 'cloud' around us when he only had ITP, because he could still act normal. But now it is completely different because we can see that he truly is a very sick baby, and our hearts are broken watching him go through this.

Please remember to keep him and the many medical professionals working with him in your thoughts and prayers.

Thank you as always!
-Us

Update 5/19/09 PICU....again

I have been up almost the entire night, so I will try to write to the best of my abilities.

Beckham had a fairly normal weekend filled with play and happiness, but on Sunday his coloring looked off and he was quite fussy, began vomiting, and had a fever. Our immediate thought was that he had caught something while in the hospital last week, so we decided to wait until Monday and book an appointment with his pediatrician. During the appointment, his pediatrician took a look at him and said that he needed to be hospitalized, and after talking to Beck's transplant coordinator it was decided that he should probably come to Iowa City instead of Des Moines. We were checked-in to a room on the floor and labs were run. The first set showed some concern, but his CBC labs (the ones that show platelet and hemoglobin levels) came back abnormal, and stating that his blood was diluted. After 3 more attempts at this level, with the same results, it was determined that his hemoglobin was at 2.5 (critically low) and that he needed to be in the PICU. This is where we are at now. I don't have a lot more info at this point, but I will keep you posted as we find out more.

Please keep Beck in your prayers.
-Kim

Cyclicality

Often times people speak of the revolving nature that our lives, jobs, and interests follow. In health care it is often times found one manner of care or a specific intervention will be presented as 'new' though it was tried, tested, and deemed unfounded many years ago. Then with our human nature it will be revived as "the new standard" which will last until it is once again found to be tried, tested, and unfounded as a standard of care.

Beckham also has found a very specific circle in which he follows. Health leads to viral/bacterial illness which leads to mechanical malfunctions (platelets, clotting disorders, etc) which leads to hospitalization which leads to health and then the pattern promptly continues.

All of this is a completely unnecessary manner to inform everybody that we are back in Iowa City. I'm quite positive a pattern could be formulated which correlated hospitalizations and our mainstay at the edge of insanity. Or maybe while we are at home we just walk a little closer to the line of sanity and we fell off that edge long ago. The latter is more likely or we probably wouldn't be doing so well.

Yes I agree, Kim should probably write our updates.

Anyway, Beckham has been vomiting, febrile, and lethargic. The lethargy is most worrisome because anybody that knows Beckham knows that he isn't one to sit still very long. So we are here tracking down the latest virus/bacteria/etc to hit the poor little guy.

I should go to bed.

Update 5/16/09

Happy to say that we are ALL home again in one piece. Beck is now full of blood, full of energy, and ready to destroy the house again (nothing new). I'm sure that it won't take to long for him to archive this goal...the walls and pantry door have already been exposed of his artwork. Now all we have to do is keep his fingers out of his nose...easier said than done.

We will be heading to Iowa City on Wednesday for more labs that will let us know how he is doing, and where we stand with his antibodies, and platelet progress. We sure feel hopeful after our last hospital visit and his continual platelet climb. We will continue to pray that we keep seeing the same results (minus the low hemoglobin).

Quick Update...

UPDATE: If you read my post (this is Kim) earlier today, it has been deleted because I have to now eat my words about my husband "never updating the blog." In my haste to write a quick update today (I know...excuses, excuses) I only looked at the length of the previous post, and not the content. I did not realized until later that Nate actually did an update. Oops. My bad. Read below for Nate's actual post.

...sometimes we feel like Debbie Downer updating this blog, but here we go again.

Tuesday night Beckham started bleeding from both nostrils (Gwen maintains her innocence) and we could not get the bleeding to stop. Having a child that insists that a finger from each hand needs to be digging for gold during the hemorrhaging did not improve the situation.

Eventually we decided that an ER visit was probably our best option, so Kim took him to the Blank ER where his nose was packed and labs were drawn. Good news is that his platelets were still at 16 - Bad news is that his hemoglobin was down to a lethargy inducing 6.5 which along with a random fever delivered a couple of nights in a luxurious hospital suite.

We should break out tomorrow should all go well tonight, he is now on his third Packed Red Blood Cells transfusion. Another bit of good news is that his platelet count came back at 20 tonight, a high so far. That number was the original benchmark that the staff in Iowa City gave us before we could go home, I'm glad they didn't follow through with that.

But as previously mentioned, we should be home tomorrow, so yeah!

If you would like to end the reading of our posts with a true Debbie Downer jingle salute I provide this link for the sound effects (just click play).

Tchau.

Update 5/5/09

After a quick trip up to Iowa City (if you call 4 hours (there and back) of driving for a 15 minute blood draw quick) we got the news that Beck's platelets have made a jump to 19. That's right, 19! Can you believe it? Neither could we. Now we are only hoping that this is not another quick platelet spike like the last time, but the beginning of a trend...and trend that keeps going up and up. The other lab results showed that his hemoglobin is still quite low (a blood transfusion is still not quite needed), his magnesium is back to normal (thanks to his new magnesium supplement), his "B" cells are still destroyed (so no Rituxin this week), and his IMG levels are back up (meaning that he will need another IVIG treatment soon).

We will continue to hang out at home, as Beckham is still so extremely immuno suppressed and can't be around others. We are actually making the best of the time we spend inside with me potty training Gwen (don't get me started....ahhhh!), trying to teach Beckham to say "mommy" (to which he smiles and says "no" or "daddy." I honestly have no idea why he refuses to say "mommy" when he says almost everything else and even puts words together like "get down," or "here you go"), and enjoying the warm weather that mother nature has finally agreed to send us. Staying inside is never easy, but truthfully we are just fine with it. At least we are at home right?

Thank you over and over for all of the continual prayers on Beckham's behalf, for we have truly felt all of them, and continue to feel them.