Update 5/28/09

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

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

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

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

Update 5/24/09

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

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

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

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

Time for bed!
-Kim

Update 5/22/09

Just a few thing to report on for the day.

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

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

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

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

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

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

-Beck & fam

Update. Thursday - May 21st

Hello. Us again.

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

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

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

Thanks for all your support.

Update 5/20/09

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

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

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

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

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

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

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

Lots of love!
-Beckham & Co.

Update 5/19/09 (evening)

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

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

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

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

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

Our "Mr. Casual"

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

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

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

Thank you as always!
-Us

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

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

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

Please keep Beck in your prayers.
-Kim

Cyclicality

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

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

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

Yes I agree, Kim should probably write our updates.

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

I should go to bed.

Update 5/16/09

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

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

Quick Update...

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

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

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

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

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

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

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

Tchau.

Update 5/5/09

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

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

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