Update 7/29/09

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

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

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

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

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

and there goes our record....

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

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

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

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

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

The Cardiology Scoop....

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

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

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

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

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

-Beck & Co.

a HUGE milestone(s)

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

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

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

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

Oh, and he has also learned how to cheat.

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

Beautiful

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

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

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

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

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

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

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

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

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