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

Update 2/23/09

I started this post earlier today after we were told that Beck would have to stay in the hospital until Friday. I am now finishing this post from home, with Beckham beside me. Quite a drastic change don't you think?

Beck is definitely on the mend, but not quite where we would like him. His blood is still testing negatively to the Pseudomonas bacteria (yeah!) but he will remain on the antibiotics until Friday, through a PICC line. We will make the trek back up to Iowa City on Friday to have the PICC line removed, and have a cardiology and neurology appointment. Hopefully by then we will have a more active, happy Beckham.

As for now he remains quite lethargic and calm. He not only is recovering from the Rotivirus and Pseudomonas bacteria, but his hemoglobin has dropped into the critical stage and the anemia has completely drained all of his energy. The doctors do not want to risk a blood transfusion when he is so extremely immuno suppressed, so he was given a shot in the hospital to help his body produce more red blood cells, and put on iron supplements. His hemoglobin did increase with the shot, but has since come down. The hope is that it will increase now that we are home and not having so much blood drawn. Cross your fingers!

Beck, though usually pale, now looks much worse with low hemoglobin. Either that or he just needs a tan!

We are now on super lock down again (not like that is anything new) and will need to remain extra careful with our little guy. Thank you a thousand times over for all of the prayers offered not only on Beckham' behalf, but for the rest of us as well. We sure felt them and are all feeling much better. I think that the Rotivirus is finally on it's way out of our door and I could not be more delighted!

Thanks again!
-Beckham & Co.

Update 2/19/09

I liked Nate's title of the last post of "Rotivirus 2, Scadlock's 0," because now it's up to Rotivirus 3, Scadlock's 0 (bummer). Yeah, that's right, Rotivirus has claimed another victim in our family; little Gwen now is chucking and squirting out of both ends. What can I say but when it rains it pours! At least I am feeling much better and am hoping that Gwen will be back to her normal crazy self tomorrow. Just make sure to steer clear of our family for a while. I am not going to spread this nasty bug on!

Now for an update on Beck:
Nate forgot to add the updates on Beckham in his post yesterday so I will try to summarize up both of the last days.

After reaching smoking high temperatures where Beckham had to be given Ibuprofen twice (transplant patients are not supposed to have Ibuprofen), his fever has finally broken after 8 days. His vomiting has stopped (or lessened) as well and if we could only get his diarrhea to do the same then we would be on our way out of here (maybe). I wish I could say that he was acting better, but the truth is that he is lethargic, grumpy, super clingy (he has to ALWAYS be held...secretly I love it!), and sleeps most of the time. I remember this stage when he had the Hand, Foot, and Mouth disease and know that it takes his body a long time to heal. I will be patient.

Beck's blood culture from Monday still had not re-grown the Pseudomonas bacteria after 48 hours (not sure if that is the same today). This is still very uplifting news, but the doctors tell me that it will take a full five days to see if it is truly gone from his blood. The doctors also swabbed his circumcision site and that did grow the Pseudomonas bacteria. What this means is that the bacteria is on his skin and maybe it gives us the answer to how he got it in his blood in the first place. Nate and I are kicking ourselves right now for getting the circumcision/hydrocele surgery. We were doing the circumcision so that it would not be a source of infection for Beckham. Guess we were wrong.

Beck also had a PICC line put in his arm today. I think my heart stopped when they told me that he was going to the "Cath Lab," but they quickly explained that it was for a PICC line. Whew! When the Cardiologist put the line in his left arm (the side that was effected by his stroke) his veins were blocked off and he had to use a wire to drill through the blockage. Yuck! Because of this blockage, Beck has to go back on the Lovenox shots in his legs twice a day. Double yuck! The cardiologist passed the news of Beck's blockage off to the neurologist (who happens to be his wife) and she came to see Beckham later. Beck's neurologist is a tiny, 100 lbs, sweet woman who scares the crap out of me...in the sense that I am always scared that she is going to give me bad news. She will keep checking on him, but for now she is alright with his behavior, but still convinced that he has some sort of clotting disorder.

Another fun adventure of the day is that Beckham's Tacro or Prograf (anti-rejection med) level has decided to shoot up to <30. His level is supposed to stay between 6-10, and for some reason a virus makes is shoot up, thus making him super immuno suppressed and unable to properly fight off this virus and infection with the little immune system he has. For now they will lower his dose a great deal and also take him off of the Valcyte he takes for CMV. His CMV might come back because of this, but the other illnesses are more important to get rid of.

I think that is it for the update on Beck. I'll let you know if there is more. As of now they are deciding if they want to send him back to Blank Children's Hospital in Des Moines to finish out his antibiotic's (once he is feeling a little better) or if they want to just send him home with the PICC line and Nate and I can take care of it ourselves. Truthfully, I am okay with either. I just don't want to go back to the hospital once we are home.

I know that the last 6 months we have had a lot of "update" posts and a lot with not-so-good news. I know it is not so easy to read and trust me it is not easy to write. I know that our little guy and the rest of our family has been through so much. And I know that it seems never ending. But in the midst of it all is an amazing inspiring story and a life that has touched and changed each of us for the good. I know it's been hard, but I know that it has been worth every second. Beckham is worth every bit of suffering that we have endured. Heavenly Father loves him, we love him, and you love him.

Take care!
-Beck & fam

Rotavirus 2, Scadlocks 0

So, now Kim has the bug too.

She asked me to do a quick update, usually when she does so I respond with a soft "k" and then put it off until she just does it herself. Well, Herself now has Rotavirus, is sick out of her mind, and is hanging out in a hospital with our lethargic sick baby.

Gwen and I are still in Des Moines and we've decided it is safer for now if Gwen stays away. This is getting too similar to August when all of us but Kim had hand, foot, and mouth. Kim's mom also came to help watch Gwen with the hopes I can work and not be fired from the job I just started in January and now have already taken off 4 or 5 sick days for Beckham.

Kim also wanted to make sure I mention that Beckham's infectious diseases physician is aptly named Dr. Gross.

Think that is all for now.

Us

Update 2/17/09

The ambulance ride. The netting on Beck's head is to help hold his scalp IV in place. Note the DVD's in his hands. This kid loves movies!

Guess where we are? If you guessed home then you are sadly wrong (don't I wish). Actually, we are in Iowa City, tucked in tight to a new hospital room. Beckham was brought here by ambulance today and I was the lucky one that got to accompany him. I've never ridden in an ambulance before...I never want to ride in one again.

On top of the Rotavirus, this morning I was informed that Beckham's blood had grown a bacteria called Pseudomonas. This is not happy news. From what I'm told - not being the health expert as Nate - it's a pretty nasty bacteria that can cause many different symptoms and makes itself resistant to antibiotics. Because of this, the doctors are treating Beckham with three different types of strong antibiotics, hoping to trick and kill this bacteria. As of today - after 24 hours of antibiotics - his blood did not grow the Pseudomonas bacteria again. This is uplifting news, but they will repeat the tests tomorrow to find out if we get the same results. For now, he is being treated by the Infections Disease doctors, thus being the main reason for our transfer to Iowa City.

I'm not going to lie...Beck is super sick. He can't keep anything down and shoots continuously out of the other end. I won't go into more detail (not that you want more), but know that this illness has really effected him negatively. For now, he sleeps most of the time, as he hardly has the energy to hold up his head (so sad). Surprisingly, he still has enough energy to demand a movie and throw a HUGE fit when you put in the movie he does not want. What a kiddo! That's our Beckham.



Please keep Beck in your prayers, as he has a long way to go. I do not know how long I will be up here with him. My mom is flying into Des Moines tomorrow to help out with Gwen so that Nate can work and study for boards (thanks mom, you're the best!). We will keep you informed on everything.

Thanks again!
-Kim

Update 2/16/09

Whew....where to begin. Sometimes our lives feel like we are running in circles, never seeming to get out of the same old cycle of home, hospital, and home again. I know we'll get there...just one day at a time I guess.

If you couldn't read between the lines, Beck is back in the hospital. After being home for only 3 1/2 days, his fevers were getting out of control and he added vomiting to the mix (guess he just felt like we didn't have enough excitement to deal with). We headed the ER Sunday afternoon, to which Beckham greeted the waiting room by filling it with vomit. Luckily, everyone is VERY familiar with him and immediately ushered us back to a room. From there, Beck had a load of blood tests, an x-ray, and then was admitted. It was a nice thing that I was 100% positive that he would be admitted and packed ahead of time.

After getting settled in our room and debriefing the residents, I made it clear that EVERYTHING needed to be ruled out as a factor for Beck's illness - mainly brain and heart. They agreed and then went on to tell me that in the x-ray done earlier that night, his heart was larger than the x-ray done the week before. Naturally this scared me to death and I freaked out! They took us down for a CT scan soon after and did a EKG of his heart. The CT of his brain came back normal. Can you believe that? Normal! This means that his clot and bleed can no longer be seen in his brain. A big sigh of relief was made that it was not his brain, although this still left the heart to think and worry about. His EKG came back irregular...but they expected irregularity with a transplanted heart, and went on to order and ECHO for the next day. On top of everything else, Beckham at that time had started to have numerous, stinky, dirty diapers in a row. Think about it...multiple dirty diapers and a fresh circumcision equals a bad combination and lots of pain. Ouch, ouch, ouch! All I can say is that not much sleep was had here last night.

A cardiology visit and an ECHO the next day showed a normal heart (whew) and no signs of rejection (whew again). We gave another big sigh of relief, but still had no idea what was wrong with him until the results of his stool sample came back positive for Rotavirus. If you are unfamiliar with this, it is a virus that causes fever, diarrhea, and vomiting, and can last 3-9 days. Most children are vaccinated against this virus, but Beckham cannot have it because it is a live vaccine. All we can do now is wait it out until it has ran it's course and Beckham will probably have to stay in the hospital while it does. He refuses to eat, and the little bit he drinks he vomits. He is on IV fluids and we are doing our best to keep him comfortable. Right now all he wants is to be held and cuddled 24/7 and we are doing our best to make this possible.

Please keep our little guy in your prayers, that this virus will not attack his body the way the Hand, Food, and Mouth virsus did. Thanks for all the continual support!

-Beckham & Co.

Heart Day

Beckham is at home and doing relatively well, while still suffering from unexplained fevers, male pain, and a wounded pride over the fact that we would dare let someone operate on his manhood (we're so sorry litte buddy). Despite all of this, he is healing and staying out of the RSV filled hospital (whew). We are doing our best to keep him comfortable with pain meds, constantly cuddled by Nate or myself, and continually watching his favorite entertainers The Wiggles. I'm sure he is going to milk this surgery for all of the sympathy he can get, and fortunately we are all to happy to oblige. He sure deserves it!

A great, big Happy Valentines Day to everyone out there. Nate and I have never been great at the romantic part of Valentines Day (for our first Valentines Day together, Nate gave me a workout video. For some it would have been insulting, but for me it was perfect!) and have never really known how to celebrate it properly. It's a great thing that Valentines Day is also the national Congenital Heart Defect Awareness Day, because we are a lot better with that.

Some interesting info....

-CHD's are the number one birth defect and the number one cause of infant death related to defects.

-1 in 100 babies born will have a CHD.

-1 in 10 of those babies will have a fatal defect.

-Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

-In the U.S., nearly twice as many children die due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

These are all facts that are not easy to stomach, but they are a reality for families such as ourselves. We can only hope and pray for more research, more answers, more funds, and more lives saved. If you would like more info click here.

The main purpose for this post is to write a little note on Valentines Day about the amazing heart that continually touches our lives, and gives us a reason each day to thank our Heavenly Father for the precious gift of life. This heart that was born to a precious little baby Jake, was well loved and cared for by his parents, older brother and many others, that refused to stop beating when a life was cut short, and that now beats in Beckham's chest and continues to never give up.

We love this little heart and are so grateful for the choice that the Campbell Family made to donate Baby Jake's heart so that our Beckham could live. Not a day goes by when we do not think about Jake. He is the first thing we think about in the morning as we get Beckham's AM meds ready, and the last thing we think about when I get his PM meds ready....but that is just the beginning. We think about Jake every time Beckham smiles, laughs, cries, hugs, kisses, plays, and acts like a normal baby. He is the reason that Beckham does all of these, and many more. He gave our baby life, and continues to do so, despite all of his struggles.

Our hearts will always ache for the Campbell family and their loss. We are so grateful to have them as a part of our lives, sharing all of Beckham's milestone, with Jake's heart guiding him on his way.

Please remember on this Valentines Day to become an organ donor. I know what a hard concept this is, and hope that this will never become a reality for anyone, but until we can grow hearts and other organs in a laboratory, this will be the reality. Organs are greatly needed. Only about 30% of the children who need a heart transplant receive one in time. For more info on organ donation click here.

2/12/09

It's surely been a looooong couple of days and I can hear my bed and Beck's crib calling us from inside this hospital room. We can't wait to heed their cries, but for now we will have to wait.

To give you a short explanation, Beck's surgery was successful but he is now back in the hospital. Shocked? I'm sure you aren't. He is Beck, and always seems to want to keep us on our toes.

To give you a long explanation....Beck and I (Kim) headed out to Iowa City for his 8:00AM scheduled surgery on Tuesday. They wanted us there at 6:30AM, which meant that we had to leave around 4:00AM (oh joy) to get there on time. After arriving at the hospital, the process was pretty simple - check-in, wait, meds, wait, meeting with miscellaneous doctors, and more waiting. They had given him a does of Versed before the surgery (which usually has minimal effects on him) and Beck became one happy, loopy baby. While we were waiting to go back to the OR, Beckham was on a bed in the post-op room and swaying back and forth in a drunken sort of manner. Another couple was watching him in his loopy state and looked at me in a questioning manner, to which I responded, "he's a little stoned right now." I realized right after my comment, that that was probably not the best response because they both gave me an almost offended look. I guess I should have responded "I'm sorry, my son is under the influence of an anesthetic and is suffering from its effects." Hmmmm...next time, I guess. All in all, the surgery was a success, Beckham's bilateral hydrocele's were fixed, and he was circumcised.

Beck and I headed home a few hours later, with a sheet of symptoms that they did not want him to suffer from post-op. Of course, Beck did not have one, but all of the symptoms (fever, not peeing, horrible pain) on the sheet and soon after returning home, we had to make the trek the ER here in Des Moines. The ER soon admitted him and we were placed in a room surrounded by RSV kiddos (I can hear all of the other heart mom's cringing as I write this). Right now is the peak of RSV season and this is exactly the place where we do not need to be! Yikes.

As for now, we are hoping to be released today. We will see about that because we were supposed to be released yesterday, but as the nurse was filling out the discharge papers, Beck spiked a fever and broke out in a rash. Go figure.

We'll keep you posted as usual. Thanks for all of your thoughts and prayers. We will make it to our beds at home soon enough!

Update 2/5/09

Just a few things that we thought we'd update everyone on....

First - It looks like we might have an answer for all of Beckham's ear infections! For those that don't know, Beckham has chronic ear infections where he will get an infection, take antibiotics, and a week later it's back (no lying). It has been this way for most of his life (poor little guy). We saw an ENT (Ear, Nose, and Throat doctor)when we were in Iowa City and they suggested for Beckham to get tubes in his ears. Beck was not in the best health at that time and we decided to wait until his condition was more stable. After 2, or 3, or maybe 4 more ear infections, I had had enough and took him to a ENT here in Des Moines. The doctor took one look in his ears and said that he does NOT need tubes, but that his infections are not related to his ear drums. His diagnosis was Severe Dermatitis of both the inner and outside ear, and even behind his ears. Most of the time this can be treated with a 5 day dose of ear drops and then it's gone, but in Beck's case (because he always has to make it a little more exciting for all of us) he will probably have to have a steroid ear drop every other day for the next year. Crappy, I know, but it is working! His ears have never looked better than they do now.

Second - No more blood thinners, which means no more shots in his legs twice a day! Yeah! That's all I have to say about that!

Third - Beckham's surgery for his circumcision and hydro-seals/hernias has been scheduled for February 10th. As much as I hate the thought of Beckham having another surgery, I feel better that we get to take him home after. It's supposed to be an outpatient surgery, but the bad part is that it's in Iowa City, which means two hours of driving home after he's just had his man parts operated on. Ouch! Big ouch! Please remember to keep him in your prayers on that day. We'll keep you posted on the results of his surgery.

That's it for now. Have a great rest of the week!
-Beckham & Co.

What do you do.....

....when you're on semi-lock down in your house, and it's so cold outside that it makes the INSIDE knob on your front door look like this,

and the temperature gauge in your car, in the middle of a sunny day, reads this (with a wind chill of -30)?

I'll show you....

1. Lot's of dress-up (or in Gwen's words, "Mommy, I Tinkerbell")

2. Beckham being naughty

(Beck getting into the lotion and eating it...umm yummy)

3. Painting

4. Beck being naughty again

(this time he ate a marker)

5. And plenty of sister and brotherly love. Gotta love it!