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.