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.

Home again!

I like to give ourselves at least 24 hours of being home before I report the news just to ensure that we stay put...which seems to be a rarity now-a-days. But it has now been over 24 hours and we are still home. Ahh yes, is all that I can say.

After leaving the PICU on Wednesday we were told that we would not be able to go home until at least the beginning to middle of this week. But as Saturday rolled around and Beckham regained his energy (and became his crazy self), it became apparent that the hospital would not be the best place for our little guy. So after some smooth talking, we were able to come home, but under the strict understanding that Beckham is extremely immuno suppressed and needs to be on complete lock down (and be extra careful because he left the hospital with his platelets at a 1). Beck is now a walking germ target with his T-cells being suppressed (from his Tacro/Prograf for anti-rejection), his B cells destroyed from the Rituxin, and everything that was drained out of him from the plasmapheresis. Actually, I was told that Rituxin and Pneumocystis pneumonia go hand in hand (great right...just what I wanted to hear). Because of this, Beckham has to take anti-fungals until he is off of Rituxin (which could be months). If you don't see us for awhile you will understand that we are not dead, just contained in home, but happy to be home all the while. We are at least able to take Beckham out into the outdoors for walks and so forth. Now if only the weather would cooperate.....

We will need to return to Iowa City frequently for blood draws to check his B cell levels, to see when more Rituxin will be needed, but hopefully we will not need to be there as inpatients (he still has his PICC line so this will make blood draws much easier). We can only hope for the best at this point and pray that in time Beckham's body will respond to the medicine, have the strength to fight off these antibodies that are invading his body, and stay healthy in the process. You can do it little guy. Kick these antibodies butts!

A great, big, HUGE thank you to my amazing friend Sandi, who went behind my back and started a fund for Beckham. Thank you does not do my gratitude justice, but until I can see her again and thank her in person (maybe we'll have to go have a girls night filled with Michael Jackson karaoke and annoying chick flicks) this will have to do. Also, thank you to all of those who have reached out to our family. Thanks to those who know us well and those who have reached out that have never even met us. We are so grateful, we have been so blessed to make so many new friends.

Kim, Gwen, Beck, and Nate

(BTW, Kim has a phone that works again!)

BABY BECKHAM DONATION ACCOUNT

Friends and Family of the Scadlocks:

What a crazy journey Baby Beckham has had in his first 20 months of life. A journey that we have all followed closely, prayerfully and tearfully. We have celebrated the milestones and gone through the sorrows and the setbacks, all the while amazed at the strength and commitment of Beckham's parents. It is not hard to see where Beckham get his strength from. What an amazing and loving family he was born into. What a lucky boy he is to have parents that are willing to sacrifice every second, every dollar, every ounce of sleep and energy they have for the love and care of their little boy. What an inspiration they have been to everyone who has followed their journey. Countless hours of prayers and blessings have been offered for the health and well being of the Scadlock Family. Support has poured out from friends, family and medical staff on behalf of Beckham and his parents. Nate and Kim have said many times that the have felt this outpouring of love and support and how it has helped them get through some of the toughest times of there lives. As I sat and pondered on all they had been through, I couldn't help but think there may be more I could do. I decided to open a donation account at Wells Fargo where friends and family could donate to Baby Beckham's account. I know that the expenses of Beckham's medical care are adding up and that any financial help would be greatly appreciated. Nate and Kim would be far too humble to ask for this help, so lets take this opportunity to pull together and make a difference for the Scadlock Family. I will keep a small reminder up on the right side of Baby Beckham's Blog. Please pass the word around and please donate any amount you can. Thank you for all your continued prayers, love and support for this wonderful Family.
Sandi and Denim Lyman
If you do not have a Wells Fargo near you have some other options. 1.Visit wellsfargo.com and click on Find Locations this will give you an address of a Wells Fargo near you. You can send a check to one of those addresses. Just make sure you specify in a note that you want it to go to the Donation account of Baby Beckham. Or 2. You can send it to me and I will deposit it into the account. My address is 152 S. 2875 W. Cedar City, UT 84720
A PayPal Account has also been set up. Just click on the DONATE button on the top right of the blog.

Update 4/23/09

This is Beckham's "get me out of here" face.

We made it out of the PICU today and are now settled into our room on the floor (the same room we had a couple of weeks ago). Beckham's platelets were at 6 today, which I have been told is basically the same as zero, but Beckham is a little too active for the PICU and now that he is done with the Plasmapheresis he is no longer PICU status. We'll miss you PICU staff! Thanks for everything.

Beckham will sure miss his little friend Jimmy from the PICU. Jimmy is currently waiting for a heart and has the help of the Berlin Heart to keep him alive at the present. One of my favorite comments from Jimmy was when he asked his mom if after he gets his new heart like Beckham, if his head will be broken also (because Beckham wears a helmet). His mom had to quickly correct him that Beckham does not have a broken head. I thought that was a great thought from a little 5 year old!

Cute little Jimmy, dressed up like Batman, with his Berlin Heart beside him. Keep this cute little guy in your prayers as well.

Beckham had a dose of Rituxin last night and is defiantly feeling the effects from this drug (flu like symptoms - aches, chills, nausia, etc). Rituxin destroys the "B" cells, and as of today Beck has zero "B" cells. The thought is that Beckham's antibodies are attached to his "B" cells, and in destroying them, it should hopefully rid his body of them. The reason that Beck feels so crummy from this drug is that when the "B" cells are destroyed they erupt, releasing the toxins they contain. The doctors will closely monitor his "B" cell levels and keep them at a minimum. The only problem with this drug is that it is very slow to work. That's alright. I'll take slow.

Beckham is still having pain episodes where he screams for hours at a time. I was grateful today that his transplant doctor walked in on one of his episodes and was able to see first hand how bad it really was. One thing that we have found that works to calm Beckham during these episodes is Benedryl. Who would have thought? Other than that, Beckham seems to be doing well. His FOS problem is much better....almost too much better, and because of that we can discontinue the Miralax. Beckham has shown that he is a true man lately as he is so proud of the fact that he can release gas loudly. He actually finds it so funny, that he strains to force out more gas. I found him tonight red in the face and was worried that something was wrong until I heard him pass gas and then laugh. Nice Beckham. What a true male he is.

Thank you so much for all of the continued support. I have been so touched at all of those who reached out to me, letting me know that they would drive or fly out here just so that I could have a break and get some sleep. I know that I will get sleep at some point soon. Nate is currently in Des Moines with Gwen, as she has a cold and cannot be near Beckham. I know that Beck and I can't wait to see them both again. Soon.

Oh, on a last note, I have a broken cell phone so I cannot answer any calls or texts (obviously). You're welcome to e-mail me at: nate_and_kim@msn.com

Update 4/22/09

The last couple of days have been filled with déjà vu of my days with Gwen as a newborn. Gwen had a bad case of colic and would keep me up all day, all night, and leave me feeling that at any moment my sanity was going to snap (good thing she was super cute). It used to break my heart when I would watch her writhe in pain and I would have no way of helping. Beckham has brought those memories very close to the surface as he has continued to be in horrible, inconsolable pain. I have felt that same helpless, heart broken feeling watching him and my lack of sleep is only adding to my state of mind.

After an x-ray of his gut on Tuesday and then again this morning, it was determined that Beckham has a horrible case of FOS (full of sh*# - that's the doctors term and not mine, but I thought it was a great way to describe his problem). Beck's gut is so jam packed full of poop and gas, that he does not even have room to eat (hence his lack of appetite for the last couple of days). He has been given Miralax and suppositories to help with this problem, but that opens up a whole other problem of possibly causing bleeding. The possibility became a reality last night when Beckham had multiple diapers containing blood, and then a large bloody vomit. He is being watched very closely right now, but the doctors do not think that he has an internal bleed, but more like small fissures.

Because Beckham has been in such great pain, he has been given Ativan to help him relax. The only problem with this is that this little guy of course has the adverse effect and becomes SUPER hyper. All I can say is that it has been a LONG week, full of many sleepless nights. I almost reached my breaking point last night as the doctors came in to look at my writhing, baby in pain. I asked that the Plasmapheresis be stopped because his platelets have not gone up and it is not worth it to see Beckham in so much pain. We are not sure if the Plasmapheresis is causing his pain - it is more likely that it is from the Dex (sedative) they use during the treatment - but either way, I honestly can't watch him suffer like this anymore and I truly think that he needs a break. The doctors were wonderful about this and said that they will give him a break, but he will still get a dose of Rituxin tonight.

I should probably have written this when I was a little more rested, a little more calm, and a little more sane. I guess that I am just ready to see the light at the end of this tunnel, and have my little guy healthy and in our home. I know that this will be a long recovery, and I will give Beck all the time in the world. He's worth it...all of it! We sure love him to pieces and are so grateful that despite this whole process that he remains happy and full of spirit.

Update 4/20/09

I'd intended to do a post last night and tell you all about our weekend, but after finally getting Beckham to sleep, the option of sleep for myself looked way too inviting. But after tucking myself in bed and falling fast asleep for an hour, I kissed what was left of my night goodbye as Beckham had another agenda for us. Who needs sleep anyway? I guess I don't, because the boss (aka Mr. Beckham) obviously calls the shots in this place.

Beckham had a very quiet weekend filled with plenty of walks around the PICU, numerous visits to the fish tank so that he could say "shh" (shh is his word for fish), and a small rise in his platelets (Beckham actually hit the all time low in finally achieving zero platelets, and as of this morning they had were at 3). He was also able to make many new friends and capture the hearts of much of the staff as he made himself right at home wherever he went.

Plasmapheresis was started again yesterday and will continue through Thursday. Beckham seemed to respond well to the treatment yesterday, but as he woke up from the sedation he was completely inconsolable and writhing in pain. After Tylenol and a dirty diaper, Beckham, perked up and played the rest of the day until he fell asleep. He woke soon after (this is where we get to the point of my first paragraph) and was again writhing in pain - very strange for Beckham because he is a baby that has always been easy to console - and immediately threw up. I was able to get him to sleep after a half hour, but he woke up again in pain again. The doctor came in at this time and examined him and and was quite concerned with his behavior (shaking, pulling his legs to his chest, red skin, pulling at his lines). He was again given Tylenol and a glycerin suppository (sounds fun right?) and after about an hour he calmed down (with the help of an Elmo DVD, because who doesn't love to watch Elmo at 3:00 AM?). We're still not sure what is causing his pain, and if it happens again then we will need to take a closer look. His Nephrologist (he is the one in charge of the Plasmapheresis) seemed quite concerned with his pain and will discuss it with his team today. A thought is that it could be his magnesium levels that have decided to take a dive during these procedures. He is being given oral and IV magnesium to replace the loss.

I had a discussion yesterday with his Nephrologist about his thoughts on how successful or unsuccessful this treatment has been. He said that he could not give me a for sure answer on this because Beckham is basically a trial case and we are in the wait and see stage. He did however seem hopeful and made sure to let me know that he and the transplant team are not giving up, but are exploring every option. This means, Rituxin will be given again after his Thursday treatment (Typically, Rituxin should last in his body for a month, but the Plasmapheresis pulled out the dose that was given to him last week) and there is also talk of starting him back on Cellcept (an immuno suppressent that he took until August) to help with the ITP. I am not sure it that will actually happen, but I know that his Nephrologist would like this.

I wish that I had more positive news, but this is where we are for the time being. Continue to pray for our little guy. We have been so touched as we have learned of all of those out there that are praying, pulling and thinking of Beckham. Thank you is not enough, but it will have to do right now until I can find away to hug each of you.

Update 4/16 /09

Blurry picture, but super cute none-the-less. Do you like his new shiner under his eye? The doctor commented this morning that he looks like he has been in a cage fight!

Beckham made it through day 2 of Plasmapheresis and so far is doing fairly well despite his unchanging platelet level. The doctors were not looking to see a huge jump in his platelets already (because we have to remember that his body has to completely remake new platelets because the ones the anti-bodies destroyed are gone forever), and are still very hopeful that this line of treatment will work. We can only hope and pray for the same.

Beckham's body has tolerated this treatment in the best way it possibly can, having only minimal side effects - fever, chills, high heart rate. He remains in a constant sedated stated during the treatment, though waking up here and there because the Plasmapheresis drains the sedation out of his body almost as fast as they can give it to him. Because of this, his sedation dose has to constantly be increased. It is very strange to watch the whole process because you can literally see his plasma stripped from the rest of his blood (it is a yellow color, unlike his red blood). It also strips pretty much everything else out of his body and makes him completely immuno suppressed. We have to be very careful with him right now, and not expose him to any sort of illness because of this fact. For now, the doctors are going to give his body a break for a couple of days and then start up again at the beginning of next week.

Beckham also has a pretty nasty cough due to the fact that he was under anesthesia and sedation for awhile, causing fluid to build up in his chest. I had them do a chest x-ray on him yesterday to make sure that his lungs were still clear, and sure enough, they looked great (whew). Beck was also started on Rituxin. This drug is very similar to a chemo drug and has to be treated with a lot of caution. I was not even allowed to throw his diapers away in the normal trash because of the risk of spreading Rituxin. It also almost always causes side effects and at about 2:00 AM, Beckham started trembling, spiked a nasty fever, and again had abnormal heart rates. His Rituxin dose was lowered and he was given Benedryl and Pepcid to fight of his reaction. Rituxin suppresses the "B cells" in your blood stream, and because Beckham has abnormally high amounts of "B cells," the doctors think this would be a good treatment for him on top of the Plasmapheresis.

The rest of us are all doing well and are adjusting to the lack of sleep. Nate and I take turns sleeping at the RMD house with Gwen, giving us time to regain some of the sleep we have lost while staying with Beckham in the hospital. We continue to be hopeful that the treatments that he is receiving will be successful. Beck is remaining happy and cute though this whole thing (did you expect anything less?) and gets comments from everyone on how much they love this kiddo. He sure know how to leave on mark on every one's heart...which probably has to do with his amazing heart that keeps us all going.

Update 4/15/09

It's been another busy couple of days for our little family. Beckham and I made our way to Iowa City yesterday to meet with various doctors and draw labs (his platelets were at 2...big shocker), spend the night in the Ronald McDonald House, and have the central line and Plasmapheresis pushed back until today. Good thing Nate and Gwen arrived today to bring back my sanity and make us all feel like a family again.

Beckham woke up nice and early this morning (5:30. How sweet of him), giving me plenty of time to get ready for our 7:30 cath lab appointment for his central line. It took poking on both his right and left femoral arteries to get the line in (it looks like the right side is still blocked off from his clot in his leg from October), but the point is that they got it in with minimal bleeding. Beck was ushered off to the PICU soon after while still being under anesthesia so that he could remain still during the plasmapheresis which was to take place soon after. Five hours later, and a very agitated Beckham, the plasmapheresis was given. During the waiting period for the Plasmapheresis, Beckham, had found a way to fight off the anesthesia, a dose of Ativan, and a dose of Morphine (sounds just like him). A new way of sedation had to found for him called Dexmedetomidine. It worked pretty swell, given that Beckham fights off pretty much everything else.

It looks like we will not know if the Plasmapherisis worked for a few days. It will be repeated again tomorrow and all we can do is hope for the best. It has been said to me more than once that this treament is a "last stitch" effort to treat this ITP without something more drastic like a spleenectomy. I was also told that they have never treated a pediatic patient, who has ITP, with Plasmapheresis. Beckham is their trial child. Woo hoo!

For now, Beckham is not doing as well as hoped. He is highly aggitated from not being able to move his legs, his hemoglobin has dropped quite a bit so a transfusion is a big possibility, and his heart rate has been rather high. The doctors are not sure if he is having some sort of reaction to all of the meds and blood products that entered his body, or if it is something else. All I can say is that he is defininaty making my heart race also.

Thank so much for all of the prayer, thoughts, kind words, and well wishes. Please keep them coming. Beckham sure needs them. He has a long way to go.

The new plan

After labs yesterday, the results showed that Beck's platelets had only risen to 5. This was an expected result considering his appearance, because in my opinion, he looks worse than when we initially brought him into the hospital. His bruised and battered appearance, his countless petechiae, and his constant flow of blood from his mouth (I mean constant) are defiantly starting to make me uncomfortable and nervous with having him home. If it wasn't for his normalcy, despite his illness, I would have him back in the hospital. The one shinning point right now is that we have a definite diagnosis for our walking bruise. After weeks, waiting for tests results from Milwaukee, the results came back showing that Beckham defiantly has an antibody in his body attacking his platelets.

Because of all the above, a new plan of action has been decided between his various doctors. It looks like Beck and I (I being Kim) will check into the PICU (yup, we just couldn't stay away from the ICU) on Tuesday for a treatment called Plasmapheresis. This treatment is similar to dialysis, in the sense that ALL of his blood will be filtered outside of his body, but in Plasmapheresi, plasma (which contains the antibodies attacking his platelets), is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at a high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through (crazy stuff right?). The doctors do not know if they will do this process for 5 days or 7 days, but the hard part is that it will take hours each day, and during those hours Beckham will have to lay still. All I have to say about that is GOOD LUCK! Anyone who knows my children, knows that "still" is not part of their making.

For this new treatment, Beckham, will need a central line (to carry his blood outside of his body). Because of his huge risk of bleeding, his cath lab cardiologist wants him completely out for this procedure so that there is no risk of him moving, causing excess bleeding. Beckham will keep his central line through out the entire process, as well as his current PICC line. After the Plasmapheresis treatment is done, Beckham, will receive IVIG again and Rituxin. These will hopefully rid his body of any remaining, or newly formed anti-bodies.

Whoa...that's a lot of info and crazy procedures right? I'm definitely on the nervous side right now, but the fact remains that Beckham has to be treated for his ITP. It is a very serious, and scary condition; one that only effects about 100 people per million each year (so very rare, but of course my Beck has to be one of those 100). Beckham's transplant coordinator and I were talking and she was saying that she has seen other transplant kids get all sorts of illnesses, but she has never seen one transplant patient get EVERYTHING until she met Beckham. Silly boy!

Keep Beck in your prayers at this time. He sure needs it. Also, remember this little guy in your prayers as well. He has already received three major surgeries in his three short weeks of life and is fighting so hard to live.

Gotta run....Beckham has once again climbed on the table and is giving me that "look how naughty I am" smiles. What a guy.

Update 4/8/09

On Monday we were given the news that Beckham's platelets had risen a small amount to 6. This was not overly good news, but we'll take what we can get. Because of this, his Rituxin dose was once again canceled and labs were planned again for Thursday.

Beck woke up early yesterday morning, with his face covered in crusted blood (not an abnormal event right now unfortunately) and I reached for him and headed downstairs to clean his face, get his meds, and wait until he could eat breakfast (he has to wait a half hour after meds to eat). As we finally sat down for breakfast I pondered over my "clinically healthy"," but "serverally ill" child. It has been over a month and three treatments later and his platelets are lower than he begin with. Beckham, who acts perfectly well (despite his bruised appearance), is still very ill and unstable, with no end in site. It is hard not to feel that our lives are back to normal with being home, but then I look at my helmet head and remember that he is supposed to be in the hospital, not at home eating cereal and making me laugh. I had to quickly grab my camera and take a video of our little guy just to document how fun and normal he acts.

As the afternoon wore on, Beck's lip started to bleed. Again, this is not an abnormal event (even a small cracker seems to cut his mouth open), but this time I could not seem to get the bleeding under control. After 1, 2, and 3 hours of bleeding (active bleeding), I decided that something had to be done and I called his HH nurse, who advised me to take him to the ER for a dose of platelets - which his body will just eat up, but they will give him just enough boost to stop his bleeding. I went to grab Beck and found him sound asleep on Gwen.

SO CUTE! What was even more cute was the fact that Gwen was allowing this.

I rushed Gwen to a friends house and then Beck and I made our way to the ER, where we were immediately rushed back (thanks to the fact the EVERYONE knows Beckham in the ER) to a room. By this time Beck's lip had magically stopped bleeding (seriously, go figure!), resulting in me feeling stupid for bringing him into the ER in the first place (the doctors told me that I should not feel stuipid because Beckham is truly sick and needs to be in the hospital). Labs were then taken (luckily he has his PICC line so he did not need to get poked) and tests were run, showing that his platelets had dropped down to 1. This was not a huge shocker given his extra bruised, petechiae covered body, and his endless bleeding from his mouth (the nose is taking a break from bleeding right now...how thoughtful!). And after a couple of hours and some smooth talking on my part - convincing them that even though he needs to be in the hospital he is just as safe at home - we were able to go home.

It looks like labs will be drawn again on Thursday and then we will make the trip to Iowa City on Tuesday for Rituxin. I can't see anyway of avoiding this medication now, because dispite the risk it poses for him, the fact remains that he needs it. We'll do what's best for Beck.

Bummer....

Becks platelets decided to take the plunge to 3 today. Big bummer, I know. We've all been a little sad all day about the news. One bright side, his hemoglobin has risen to 9.9 and his white blood count has lowered to 4 (a little low, but better than the 14 from Monday). For now we'll just wait until Monday and re-draw labs to see if there is any rise in his platelets. If they do not rise then we will go ahead with the Rituxin.

Platelets

After labs and our long wait, we have the results of Beckham's platelet levels. The long awaited number is....17. Can you believe it? His levels actually rose! It's a miracle! Nate and I were truly shocked by the news, especially because Beckham has been a bloody faucet all day from his mouth and nose (he currently has a cold and it is much worse than normal due to his extra immuno suppression from the steroids). Let's hope and pray that it stays that way and that his levels continue to rise. The plan now is to cancel our Iowa City trip for tomorrow as well as his dose of Rituxin, and give this little guy more time to heal.

Beckham celebrated his platelet rise by smearing Desitin all over his face and then falling asleep.

Still home!

Six days and we're still here at home. Beckham has been doing great and could not be more excited to be in his own environment. This kid is all about energy, hunger, and mischief the last couple of days. Energy, in not wanting to go to bed until 10 each night, fighting every nap, and waking up at the crack of dawn (and never tiring during the day). Hunger, as in he NEVER STOPS EATING! He eats so much during the day and has been waking up three times (you heard me right) to drink 3 8 oz bottle of Pediasure (thank you steroids). And mischief, to where he threw a bar a soap in the toilet, in which Gwen flushed it down, resulting in a plumber visiting our home. We also had a visit from Stanely Steamer after Beckham decided that multiple things needed to be rubbed and smeared into our carpet. All I can say is that I am grateful that my
mom was hear to help me during this whole time.

Check out the Buddha belly on our kiddo. Do you think he's gained weight or what? His weight started around 21 lbs, and now is almost 26 lbs.

Beckham has not had labs taken to check his platelets levels since he has been home, but he will get them taken tomorrow. Although his bruising does look much better and even his petechiae has lessened, we don't have much hope that they have risen to a higher level, but you never know with Beckham. Actually Nate, myself, and my mom have a little bet going to see who can guess closest to what his platelet levels will be. Nate's guess is 3, mine is 6, and my mom's is 20. Be sure to add your guess to the comments. We will get his levels back in the later afternoon tomorrow.

The plan for now is that if his platelets have not risen a substantial amount, then we will take him up to Iowa City on Tuesday to receive Rituxin. We are hoping that we can do that as an outpatient and not have to be admitted. Beckham still has his PICC line, so this should make it easier for blood draws and injections.

Wish us luck, cross your fingers, and say a prayer that this little kiddo's platelets have risen and that he will not need more drastic treatments!

Update 3/24/09

A very, unexpected thing happened today.

No Beck's platelets did not go up (they actually dropped to 2), no they did find out anymore answers to his ITP, and no he is not any better.

But in spite of it all, we were able to go home. Can you believe it? Either can we.

The crazy thing is that his platelets are even lower than they were when we were admitted, but the doctors agree that there is not much more to do for him right now than to give him time. The steroids will continue until next week and if there is no change in his platelets by Monday than he will start Rituxin. If that does not work than removing his spleen might be the only option. Lets hope and pray that that will not be the case.

For now, Beck and I are going to enjoy our own beds for the first time in 18 days. How nice does that sound? I am also going to start working very hard on padding down our house so that this kid does not make himself bleed. This is defiantly a HUGE risk right now....but what do you do? Keep a stir crazy, immuno suppressed toddler in a hospital for months at a time, or take him home and take extra careful care of him? I choose the latter.

Update 3/23/09

This past weekend has been much like the last two weeks - platelets dropping, no real answers, treatments with no responses, blah, blah, blah. Darn.

On Friday the lab was finally able to locate one cross-matched platelet donor (after literally weeding through hundreds of samples). It was given to Beck with the expectation that it would most likely fail, but with a "why not give it a try" attitude. Immediately after the platelets were infused, Beck's level came back at 8 (from the previous 1 that morning), with the same results of 8 coming back a half hour later also. To Nate and I this was some what uplifting news, until the doctors told us that for the platelets to be considered successful, his levels would have had to rise to at least 30. Bummer. At least there is still enough of the cross-matched platelets left to use in case of an emergency (unstoppable bleeding).

Beck's platelet levels fell to 6 on Saturday, 5 on Sunday, and 4 today.The hem/onc doctors are back to the antibody theory. The problem now is just figuring out how to treat and KILL these antibodies. He is still on the steroids for the time being, and will remain on them for a little while longer. I got to tell you that as cute as it is to see Beck with even chubbier cheeks and a bigger Budda belly from the steroids, it is no fun dealing with the mood swings that come with them. I was telling Nate the other night that we have traded Beck for a teenage girl. Soon he is going to start telling me that I am 'ruining his life', and that 'I never understand him.'

There was no sign of blood clots in his arms, legs, or abdomen, and after today's MRI of his brain, no blood clots were found there either. Of course this is great news. I was praying that he would not have blood clots because they would have been almost impossible to treat with his current 'faucet flowing' blood. Beckham has also added vomiting to his illness (thus the main reason for the MRI today). It looks like the vomiting might be a side effect from the steroids. Another addition to his illness is smoking high blood pressure. Enalapril was added back to his medication list to combat this problem.

One main thought by the hem/onc team is that Beck's Prograf (main anti-rejection drug) my be what is causing his ITP. He has been and is being weened off of all the other drugs that could be contributing except the Prograf. I know that his Transplant doctor is very confident that it is not his Prograf that is causing this, and I am getting the feeling that this has been quite the heated debate between the hem/onc and transplant doctor. I trust that they will both do what is best for Beckham and come to the right decision. I will also do what is best for my little guy.

Sorry that I can't give you anymore answers, because I don't have any myself. One thing that has been agreed upon is that maybe one thing that Beckham needs is just time. Time...in a hospital...full of other sick kids...and a crazy, stir crazy toddler...time...oh joy. I'm not crazy about the idea of living in this hospital for weeks upon weeks, but the one great thing is that the staff here is crazy about this little kiddo. I have had numerous nurses tell me that they fight over who gets to take care of Beck for their shift. Beckham is sure taking advantage of their adoration and walks around here like he owns the place. It's actually quite cute...especially with his new large Budda belly!

Let's hope and pray that one of these days his platelets will just decide to increase. I know he can do it. As always, thank you over and over for all of the support, prayers, and unconditional love for our family.

Update 3/19/09

Today was a much more quiet day than yesterday (whew). Beckham had labs in the morning that showed that his platelets had dropped to 2, which was expected with his blood loss when he got his PICC line and all of his blood draws. His hemoglobin had also dropped and it dropped low enough that he would require a transfusion. The thought was that he would get a platelet and blood transfusion at the same time, but the lab was having quite a hard time finding perfect cross-matched platelets. The doctors want to be extra, extra careful with anything foreign that goes in Beck's body and have been very careful with the donated blood and platelets. He will not receive the platelet transfusion until tomorrow, but he did receive blood. I can't tell you the color difference it makes it Beckham's appearance when he gets blood. It really is night and day.

One interesting thing that happened today is that Beckham's swollen neck lymph node decided to shrink some. It is still abnormally large, but much smaller and softer than it was yesterday. Very strange. The hem/onc and cardiology doctor seemed a little encourage by this news, but also confused, because this kid is such a mystery.

I stole this picture off of my sister in law's blog. Thanks Haley for coming and staying with us last week. I know that Gwen misses her "not Gwamma-Haywee."

Beck's D-dimer (a test to check for the presence of blood clots in a body) came back positive today. This means that somewhere in Beck's body is a blood clot (which we already knew from when he got his PICC line a month ago) or multiple blood clots. It's pretty strange that Beck could have blood clots when his blood is almost platelet free, but it also could mean that Beck's clots are responsible for the loss of platelets because clots basically eat platelets. A ultra sound was done on both of his arms and legs and it came back as normal - no clots. The doctors are now talking about doing tests (CT and/or MRI) on the rest of his body to check for other clots.

Beck's hem/onc doctor did tell me that he was going to put in a call to one of the best hem/onc doctors in the world, to see if has any sort of insight on what could be going on inside our little guy's body. How crazy is that?

As for now, we will continue with the steroid treatment and then the platelet treatment tomorrow. We will continue to keep you posted on anything. Thank you so much for all of your kind words from the last post, and thank you for agreeing that it would be a great idea to have a "screaming room" in a hospital. I'm sure that there are many out there who would benefit from this! Keep the prayers coming. They mean so much to our family.

Update 3/18/09

Sometimes I wish that the hospital had a room where you could go and scream as loud as you want, or a room with a large punching bag that you could beat out all of your frustration. I'll have to make sure to add these to the suggestion box on the survey you fill out after your hospital stay because those rooms would have really come in handy over the last couple of days. My head is spinning with a load of information that I hardly understand, so I will try my best to explain it to the best of my recollection and understanding.

On Tuesday Beckham's platelets decided to take a dive from 9 to 1, and the lump or lymph node in his neck decided to grow and harden. The reason for these...unknown, as usual. The hem/onc doctor is convinced that the lump is from a virus of some sort, and had a strep test done, which came back negative.

This morning Beck's platelets had risen a small amount to 4. This basically means nothing, but the underlining truth is that WinRho and IVIG were both unsuccessful. Dang it, dang it, dang it. Beck's poop was also the color of tar, which means it was full of blood (old blood). A lot of the blood was probably from him swallowing the blood from the sores in his mouth, but it could also be from bleeding inside his body that we are unaware about. Yikes.

I had a long talk with Beckham's hem/onc doctor today, who had a long talk with both Beck's transplant doctor and another cardiologist. They all agreed that the best way to approach Beck's condition is with an open mind and to rule out everything. I can't tell you how grateful this made me. It was like they read my mind. The hem/onc doctor is extremely baffled with Beckham's condition. He is even starting to wonder if this is all stemming from an antibody. His plan of action now is to start him on steroids (which he is getting as I type), give him a cross matched (giving him a platelet transfusion from the same blood type and serum ) platelet transfusion (which he thinks will fail, but he wants to check everything) and a run a whole slew of blood tests. His other thoughts for what is causing the ITP is a large blood clot somewhere that is sucking up the platelets, something wrong with his spleen (which would mean his spleen would have to be removed - not a good option for a transplant patient), an unidentified virus (that could be causing the swollen lymph node also), something called DIC (Disseminated intravascular coagulation), or Hodgkins or Non-Hodgkins lymphoma (though he highly doubts this because his bone marrow was free of cancer.). Along with all of these possibilities is other treatments and tests that the doc is planning on doing to Beck such as a drug called Rituxan (which the doctor does not want to do unless it is a last option because it's not reversable), a CT scan of his belly to look at his spleen, and a possibly biopsy of his lymph node (another thing they would do only as a last option).

I would try to give you more information on all of the above, but like I said, my head is spinning and I myself am unable to make sense of it all. For now, they have given Beck a PICC line (it took 6 pokes (it was sad, I was there!) and 2 doses of Versed, 1 dose of Ativan, and 3 doses of Propofol...which still did not relax him) and have drawn a lot for all of the test. It looks like this will be a busy week as each day has something planned for it. I'm just grateful that Nate will be back with me tomorrow and I will be able to see my little Gwen again. I sure hate being separated from them.

Please keep praying for little Beck. Even though he does not act it, he really is very sick. Thank you so much for all the continued support and thank you to all of those that have watched our Gwen for us.

Update 3/16/09

Good news for helmet head! He looks pretty cute don't you think?

Beck has once again had quite a long couple of days, between 6 IV's (in 7 days...sad), 1 bone marrow biopsy, numerous visits from many different doctors, and multiple treatments attempting to bring his platelet counts up. You'd think that all of these would wear this little guy out, but that is definitely not the case, as he remains full of energy and fight.

The doctors decided to wait one more day and not check Beckham's platelet levels until this morning, thus giving his body a little more time to respond to the IVIG treatment. As labs were drawn this morning, we were greeting with some semi uplifting news of Beck's platelet levels rising from 2 to 9. This is still a very small number of platelets, but it's better than 2! This at least gave the doctors a little more hope that something might be fighting the anti-bodies in his body.

A few hours later Beck was taken to the procedure room for his bone marrow biopsy. I was so grateful that Nate arrived only a few minutes before the procedure so that he could be in the room with Beck and not me. I've seen enough pokes on this little guy, and this one was just a little more than I could handle. At least the procedure did not take that long, and Beck was semi-cooperative (with the help Morphine and Versed). Beck now has a pretty large and extensive bandage on his back to keep the bleeding under control.

5 hours later the Hem/Onc doc visited us to let us know that the major part of the biopsy examination was complete and Beck's bone marrow showed no sign of Leukemia. Nate and I let out a HUGE sigh of relief as she went on to explain that Beck does have ITP, his marrow did show that it is capable of producing platelets (which is a great sign), and the only explanation for their disappearance of the platelets is an antibody. She also went on to tell us that there were signs of a virus in his marrow - probably left over from the Rotivirus, or Pseudomonas bacteria - and that is probably what triggered the ITP in the first place. For now, treatment will be a few more days to see if his platelets rise even more now that he is finished the IVIG, if so, IVIG can be repeated once a month. If they do not rise, the next step will be steroids. If steroids do not work, a drug called RhoGAM will be given. I really don't want to go to the steroids or RhoGAM treatment, so I am praying that in time the IVIG will do the trick. Beck was also taken off of his medication 'Keppra,' that he takes for seizures. This medication does have a rare side effect of bone marrow suppression - which can cause ITP - but so does his Tacro (Prograf) and Valcyte (which he is no longer on). All things aside, his cardiologist and neurologist decided that it would be alright to take him off of Keppra because his seizures were because of his stroke, brain bleed and clot.

Beck still remains happy and unaffected by any of this in his behavior. His appearance still looks pretty scary. He has also started having out of nowhere nose bleeds and bleeding gum's - which was expected to happen, but still scary - and constant oozing bleeds from his lips. These side effects of low platelets should stop as his platelets rise.

Thank you SO much for all of your kind words, thoughts, and continuous prayers for our family. We know that we have a long road ahead of us, but a road worth traveling none-the-less. We're sure counting our many blessings today as we've held out cuddled our baby boy, thanking Heavenly Father for his life that never ceases to bring us joy.

One more day, one less on the platelet count...

...I haven't been doing these updates so I'm not sure where we left off, but we are currently at no rise in platelet count with just tomorrow to go on the IVIG therapy.

They will hold off from checking his count tomorrow and wait until Sunday. If there is a decent rise by then we will just wait out the storm. If we remain at status quo they will give Beck one more day and check counts on Monday morning. Another lab draw of low platelet counts would mean the need to seek out other reasonings behind the ITP.

So, no increase in counts would lead to a Bone Marrow Biopsy on Monday morning. That would give information about both stem cells and other immature cells. Two major reasons for that:

First, it has become necessary to look at Leukemia as a possibility. This test would tell us yeah or nay.

Second, if they find a decent number of megakaryocytes (thrombocyte (platelet) producers) they can be more sure that Beckham in fact has the ability to produce platelets, he just isn't in any hurry.

So all-in-all the situation still sucks, Beckham though is still fun and somewhat happy (except for the whole hospital thing), and we are still waiting for answers.

Update 3/11/09

After a rather long and restless night, Beck greeted us this morning with his usual happy smile, still unknowing that anything strange is going on in his little body. The doctor came in soon after that and was looking over his body and asked me if his neck had "always looked like that." I, confused to what he was referring to, took another look at his neck and gasped. The right side of Beckham's neck has a HUGE lump on it. The lump must be brand new because it is so large that you can't miss it. This of course stopped my heart (again) and sent me into panic mode. Beck was rushed off to ultrasound later that day, and it was determined that the lump in his neck was a swollen lymph node. Why it is so large is unknown, but a speculation is that it's because he had some sort of trauma to that area that is making it swell.

We also received the results of Beckham's platelets after 24 hours of receiving the WinRho. It had remained at 3 and this meant that he would have to be given IVIG. He was started on the IVIG tonight and will receive it for the next 3 days.

Beck's helmet also arrived today. It's actually kind of cute, but that is probably because it's on a toddler. I didn't take any pictures of it but I will make sure to do that tomorrow. Beck actually did well with keeping it on and only tried to pull it off once. He is supposed to wear it for quite a while and this means even when he sleeps. I'm not sure if I am going to do that to him. I would rather just cushion his crib.

The doctors are very hopeful that the IVIG treatment will be successful. The one thing that they do stress is that it will take a LONG time for Beckham's platelets to return to normal. There was another pediatric transplant patient in Des Moines that had ITP twice, and the first time it took him 6 months for his platelets to return to normal, and 2 months the second time. We are hoping that it will not take that much time in Beckham's case. He will go crazy in a hospital for that long. The thought is that we might be able to go home when his levels are between 20 and 40. The biggest concern in sending him home with platelets that low is that he will start bleeding and will be away from a hospital. Bleeding is such a huge risk. Beck cut his lip again tonight and sent everyone in a panic. Luckily they were able to stop it in 20 minutes. In some ways I feel like he would be safer at home because he will not be going so stir crazy.

Let's all hope and pray for a change with this IVIG treatment. We know how many people are out there praying for our little guy. We can't thank you enough for the support you have shown our family. It means so much.

Thanks again!
-Beckham & Co.

Update 3/10/09

Beckham and I spent another cooped up day in our little hospital room trying to stay entertained and avoid anything that could bump, bruise, or cut this little man. I am truly exhausted from this task and can't wait until Beckham can run free again.

After a set of labs this morning, Beck's platelets had risen a whopping 1 point to 3. This was quite a blow to the doctors, for they had hoped that after the WinRho treatment there would be more of a change. The plan now is to wait 24 hours and then check his levels again. If they have risen a large amount (which is not expected) then we will know that the WinRho worked and he will not need any further treatment. If they have not then he will be started on a treatment called IVIG (Intravenous immunoglobulin) which is similar to the WinRho, in that it is used to attack the anti-bodies that are attacking Beckham's platelets.



I was also told today that Beck is only a small step away from the PICU (Great. That's just what I wanted to hear). We love the PICU staff and know they are incredible in what they do, but we do not want Beck to be back there as a patient. For now we will stay on the floor, but if Beck were to start bleeding then we would have to go to the PICU because he bleeding could not be stopped without major treatment. To help prevent this, Beckham was fitted for a helmet today. He should get that sometime tomorrow. I bet that he is going to love it...ha ha!



We'll let you know of any changes tomorrow. As for now Beck is fighting sleep (like usual) and needs to be held, but remains happy, and completely unaffected by his platelet problem. So strange.

Night!
-Kim

Update 3/9/09

I will try to update this to the best of my 'understood' medical ability. This is always the hard part of being here without Nate, and having to use my unschooled medical knowledge. Though I will say that I have had a pretty amazing crash course in medicine over the last 19 months...so much so that the doctors don't even try to dumb down their explanations for Beckham's medical conditions.

Today was a day filled with lots of information. The best part is that we now have a game plan, but still no official diagnosis to what is going on inside Beckham's little body. We did at least get to meet with the hemotology/oncology doctor here, and he was able to give us his expert reason for Beck's platelet problem. His theory is that Beck does not have Heparin-induced Thrombocytopenia, but Idiopathic Thrombocytopenia or ITP. Idiopathic basically means that the reason for Thrombocytopenia is unexplained...but in this case they think that the unexplained reason is that Beckham's body has actually built up anti-bodies against his own platelets and the antibodies are attacking and eating his platelets. Crazy stuff right? The doctors next theory is that Beckham's ITP is not caused by cancer! Whew! This has always been a fear in the back of my mind because all of his symptoms (low hemoglobin, low platelets, and low WBC) are symptoms of cancer. The only way to truly test that Beckham has ITP is by obtaining a bone marrow sample. The doctors do not want to do this right now (whew again) because of the risk it will be to him.

Today...well tonight, they tested the ITP theory in another way by giving his body a platelet transfusion and seeing what his body did with it. The thought was that his platelet count would increase some, but go back down within 8 hours. 1 hour after the transfusion was done, his levels were checked and guess where they were? If you were thinking higher you are super wrong. They actually had gone down to 2. This indeed proved that his body QUICKLY ate up the platelets and that he probably has ITP. They are now going to start a treatment with an immunoglobulin called WinRho, which is used to attack the antibodies that are attacking the platelets in Rh positive individuals. Crazy again right? Man, it's like the battle for middle earth is being fought inside our little Beckham's body. They will check Beckham's levels 8 hours after the WinRho to see if it had any affect on his platelets.

Again, Beck remains completely unaffected by this illness except in his horribly bruised appearance and his inability to stop bleeding. The hematologist/oncologist actually saw first hand how bad his bleeding was when he was here today because Beckham hit lip on a bottle (not very hard) and immediately started gushing blood that we could not get stopped for an hour. The doctors exact words when he saw this were "we are going to stop this bleeding." He sure look like meant it.

Holy cow...I never thought in my whole life that words like Idiopathic Thrombocytopenia or immunoglobulin, would become part of my everyday vocabulary. These, along with all the terms I use for his cardiac and neurologic disorders and care, make me quite the medical nerd. This is all thanks to our walking medical mystery, that is in my arms, refusing to fall asleep without being rocked. I guess this is my queue to sign off. Gee I love this medical miracle!

Keep praying for Beck. He sure needs it.
Lots of love.
-Us

Update 3/8/09

We've had a busy, yet long couple of days here at the hospital. Not much progress has been made by our little guy, but we still have plenty of good and bad news to share. I'll start with the bad news since it's always nicer to end with something good.

Bad news:
#1 - As of yesterday Beckham's platelets dropped from 10 to 5. This was a frustrating turn, but not completely unexpected. When labs were re-drawn this morning, they had once again dropped to 4. Beck is really starting to show the drop with so much petechiae, that it looks like millions of bloody freckles covering his whole body. He has also started to bleed excessively when he has blood draws. Just this morning he had a finger poke blood draw that took him a half an hour to stop bleeding from. This is a huge concern, and makes it vital that week keep him from injuring himself, causing more bruises or cuts. If he does start to bleed excessively he will have to be given a platelet transfusion to stop the bleeding. The transfusion will only boost his levels for only a couple of hours before they are 'eaten' up by the rest of his body.

#2 - One of Beckham's test results checking for anti-bodies from blood thinners came back negative this morning. When his cardiologists told the hemotologist about this, he was not surprised because that test is not very 'sensitive' to the anti-bodies. The other test checking for anti-bodies will not come back until the end of the week. I sure hope it comes back positive. The cardiologists did say this morning that with Beck's low platelet count, low hemoglobin, and low white blood count, there might be something else that is causing all of this. His hematologist on the other hand is very confident that Beckham has heprin-induced thrombocytopenia. Hopefully we will know more tomorrow, and hopefully his platelets will have risen some. Hopefully.

The good news:
#1 - Beckham is happier, more active, and eating better than he has in the last couple of months. If he didn't look so bad, you would never know that something was wrong with him. He is even saying new words such as "thank you" and "bite." He is so active that I am pulling my hair out trying to keep him entertained in a small hospital room. I was finally given the clearance to take him out of the room and for a walk in a stroller. This has been so great, except for the constant stares from people, wondering if my child was in a horrible car accident or is being abused because of his bruising. I love when they give him this pitied look, which Beck responds to with an emphatic "hi there." They then have no idea how to respond, and they smile, wave, start to walk away, to which Beck again responds with another emphatic "bye there." It's super cute.

#2 - Beck also had an IV placed this morning. It took only one poke, draws blood, and does not seem to bug him. Yeah! To bad it's on his head and has to be held on with a netted hat. The hat just makes him look more like an abused, car accident patient.

#3 - Nate passed his nursing boards! Wait to go Nate. You're a rock star in our book.

Again, the game plan is still to stay in the hospital until his platelets come back up. We are sure praying hard for that to happen. It needs to happen soon for this kiddos sake because he is going crazy in this hospital. As strange as it sounds, it was so much easier to take care of him when he has the Rotivirus and Pseudomonas bacteria because he just laid around. It's not easy to take care of a crazy 19 month old that is super sick and does not even know it!

Oh, one more thing. Just thought I'd mention a great "Kim" moment of the night: As I changed Beckham's stinky diaper tonight, put away his wipes, and threw out his diaper, I noticed that his Desitin tube was missing. I searched everywhere for it, even in the garbage, to no avail. About a half hour later I picked Beckham up and stuck him on my lap and noticed a huge lump in the leg of his pajamas. I freaked out, thinking that this was a blood clot (because he had been favoring that leg a few minutes earlier), and as soon as I unzipped his PJ's, the Desitin tube fell out. Duh Kim. We really need to get out of this place is all I can say!

We'll continue to keep you posted as always!
-Beckham and Fam

Update 3/6/09

Here we are again back in the hospital in Iowa City, but at least this time I was able to drive Beckham myself instead of traveling by ambulance. Beck is once again sick enough that he needs to be closer to the transplant team and other specialists and we cannot do that in Des Moines. Maybe our next step should just be moving to Iowa City...but I bet the moment we do, Beck will all the sudden not have any hospital visits. That's just his style.

After two days of blood draws (the first set clotted), Beck's labs came back with crazy low platelets. Crazy low meaning 10, which is almost nothing (a normal person should have a level of between 150-400). His platelets are even lower than they were around the time of his stroke and multiple blood clots. The thought behind his low platelets is that he has a condition called Idiopathic Thrombocytopenia, that derived from his body building up antibodies to Heparin blood thinner products (Lovenox included)....meaning, after he was taken off of the blood thinners the first time, his body built up antibodies and is now rejecting them by lowering his platelets. Make sense? They are doing extensive testing in the morning to see if he tests positive for the antibodies. When I asked if this happens to other transplant patients, I was assured that this is common (more in adults that children though).

The dark purple bruises cover a lot of his body, but the small red dots (petechiae) cover his entire body (top of his head, thumbs, neck, back side, feet, so forth).

Right now Beck is actually super happy, super hungry, and super cute (minus the millions of bruises that completely cover his little body). I think this is the one thing that comforts me and the doctors right now. If he didn't look so bad (and he really looks bad), you would think that he was back to his normal self. The biggest obstacle right now is keeping him from getting anymore bruises. How are you supposed to do this with a toddler with a HUGE head (he got that from Nate's side of the family!), that continually loves to bang it on everything to express himself? Here is their solution:

If you can't tell, that is seizure bumper pads with pillows on top of them, covered with multiple blankets. This better help!

The plan is to be in the hospital until his platelets come up. How long this will take, we don't know. A platelet transfusion is not an option right now because if his body has antibodies, than he will probably just reject the platelets.

Keep our little man in your prayers. Thanks for all of your continued support. We have sure felt it!
-Family Scads

No more blood thinners?

Beck loves to keep us all on our toes (my toes are pretty sore at this point) and this week has been his usual. Though acting happy and energetic, and eating like it was the end of the world, Beckham has managed to send my heart into hyper mode again.

On Sunday while Nate was working, I gave Beck his morning Lovenox shot. As I did so, Beckham cried out in pain (not unusual), but this time it was a true pain filled cry. I picked him up and cuddled him, dressed him, and went along with our day. An hour later I went to change his diaper and found this:



I know that it's a little hard to see in the picture (it was taken with my phone...I have misplaced our camera), but it you cannot tell, his leg bruised badly and swelled with a golf ball sized lump underneath the skin. Beck was also limping and favoring his leg at this time. This freaked me out and I called Nate at work and sent him a picture of Beckham's leg. Luckily he works at and ER and was able to show the staff he works with. They all agreed that I probably just hit a vein and tried to comfort me, saying that he was going to be just fine. This did not comfort me. I felt like the worst mother ever!

Over the next couple of days his bruising continued all over his body. It got to the point where he would barely brush against something and a large, dark purple, bruise would appear. He was also covered head to toe in petechiae (a small red or purple spot on the body, caused by a minor hemorrhage - in Beck's case it was caused by thrombocytopenia or low platelet count). This freaked me out even more because right before Beckham's stroke he was covered in petechiae. I immediately took him to his pediatrician, who took one look at Beck and called his doctor in Iowa City. He was immediately taken off of his Lovenox shots, hoping that this was the source of his bruising. I probably would have freaked out more if it hadn't been for the fact that he had labs last week that showed his platelet count to be in the normal range.



Again, I am sorry for the clarity of the above photo, as it was also taken with my phone. It will at least give you an idea of his bruising.

For now, he will remain off of the blood thinners, and we will watch him closely. At least he is acting like his happy crazy self again.

Update 3/1/09

It's been almost a week since Beck was released from the hospital and it seems like he is finally beginning to get his strength back. He will now walk again, but is extremely cautious and takes quite a few breaks in between every 10 steps. He is also talking again and smiling non-stop. What a great thing this is to have our little guy back. From what the doctors have told us, an infection in your blood stream is a very serious infection and completely drains your body and takes so much to fight it off. You add that the Rodivirus and his circumcision/ hydrocele surgery and you have a really bad combination. Poor kiddo is all I can say!

Nate and I took Beckham up to Iowa City on Friday for a slew of appointments (my mom was still here to watch Gwen thankfully). Labs were first, and let me tell you that it was sure nice that Beck still had the PICC line to draw from so that they he did not have to be poked half a dozen times to get the right amount a blood. After labs, the transplant team saw him. They were extremely pleased with how much better he looked in comparison to the beginning of the week. They are hoping that this illness is the kicker that will get us over this hump. So are we! As for now, their plan is to hopefully not see him until April, and in the meantime, we need to work on increasing his hemoglobin (which has gone up a small amount). We will have to keep trying to get Beck to take the Iron supplements and Iron vitamin. This is not an easy task as the vitamin tastes like a mouth full of blood and the supplement tastes like you are chewing on an iron bar. Nasty! I've tried flavoring it, adding it to food, giving with liquid...you name it, I've tried it. If you have any suggestions, I'd love to hear them!

We also saw neurology on Friday. They gave us the news that Beckham for sure has some sort of clotting disorder. We do not know what his disorder is, but not matter what, the treatment would be the same of blood thinners. I hope that this does not mean that he will have to get shots twice a day for life...but it could. Aspirin treatment is not an option right now for Beckham since he is so small, but hopefully in the future he will be able to take that instead of Lovenox shots, which he will remain on until we meet with hematology again. All in all, the neurology team was very pleased with Beckham, but they want to have another MRI done in April to make sure that he has not signs of hyrocephalis, and to get him off of his seizure medicine.

Beck is now PICC line free and doing well. We sure want it to stay that way. Since August, Beck has not been out the hospital longer than 6 weeks. We are determined to beat that record!

Happy March to everyone. Bring on the warm weather is all that I can say!
-Us