The good and the bad news

Good news: After weeks and weeks of losing weight, Beckham's weight was finally up today to 26 lbs! His HH nurse weighed him twice just to make sure, and, sure enough, he really was up.
Bad news: His HH nurse also noticed that his lungs sounded pretty rotten today and sent us to the doctor.

Good news: After an x-ray today at the doctors office, Beck's lungs look pretty clear.
Bad news: Even with clear lungs he still has pneumonia. Crap.

Good news: It only took one poke to draw labs today, and the results came back super fast.
Bad news: The labs we're pretty crappy, showing that his platelets dropped again today to 50, and his hemoglobin was slightly down at 10. Bummer!

Good news: Beckham is now skinny enough to fit in his helmet again (there was no way we were going to squeeze his steroid cheeks in there from 6 months ago).
Bad news: He now has to wear his helmet again because of his low platelets.



Good news: We have managed to stay away from the hospital another day and we'll all enjoy our own beds tonight!
Bad news: If his platelets continue to plummet, then we will be headed back to our second home at the hospital.

Good news: We will meet with the pediatrician tomorrow morning for more labs and hope and pray that his levels have come up.
Bad news: We will have to meet with Dr. "I know everything, and don't listen to ANYTHING parents have to say" again (Beck's regular pediatrician was booked today (we love him) and we had to meet with another). All I can say is that it took everything inside me not to punch this new doctor or show him my middle finger (I know, super mature and lady like). He was one of those doctors that assumes they know everything about children, and treat the parents like they are idiots. He went as far as to tell me that Beckham's puking was just because "toddler's puke" and also, his diarrhea was just "toddler diarrhea." After he said that, I was tempted to invite him to come clean up Beck's multiple poops and pukes during the day, and then ask him to say that they were "normal toddler" stuff. Sheesh! Beck is not a normal toddler! I'll stop now before I get all worked up again (the "toddler" comment was only the tip of the ice burg on what he said to tick me off).

Summary:
Beck has pneumonia. Where he got it, or how he got it, we have no idea. He is now getting daily shots of Rocephin, 3 doses of oral antibiotics during the day, and breathing treatments. He is not being treated yet for his lowered platelets because his transplant doctor wants to see if they will rise on their own as he starts to get better. We still have no idea why he is vomiting and pooping up a storm. We have talked about doing another MRI to check his head, and that might happen sooner than later. We are thrilled to be home and we are praying to stay here!

This is how exhausted our little guy was at the end of the day.

-Beckham & Co.

Update(ish) 2/24/10

I know that the title "update" is usually intended for hospital stays, but currently we are at home, and the "ish" in the title is because we are fighting very hard to stay that way!

I wish that my lack of posting over the last couple of weeks was because everything was normal and uneventful, but, sadly, it is because I have been up to my ears in never ending puke and poop (I bet that paints a lovely picture) from our little guy. Beck has never really gotten over the stomach bug that was discussed in my last post. And while he did have periods (no longer than a few days) of being free from bodily explosions, they always returned and returned with a vengeance! Yikes! I'll do my best to summarize the last couple of weeks, but be warned that there will be a lot of puke and poop talk (how lovely).

1. A week after Gwen, myself, and Beck were over the stomach bug, I noticed that Beck was still acting a little off (with spontaneous puke and poops) and that his right eye was swollen and red, so I took him into his pediatricians office just to make sure he was alright. There, he was diagnosed with a mild eye infection, labs came back normal, we were sent home, and that was that.

2. That night, Beck was going through diaper after diaper, which continued through the weekend (along with vomiting) and he had NO appetite, and by Monday, his HH nurse was called in to do more labs and check his weight. The results were: his weight was down again, and his labs showed that he was quite dehydrated, but they did not explain why he was pooping and puking up a storm. She also took a stool sample and that came back normal. After talking to the transplant team in Iowa City, we promised to push fluids, and see them in a few days.

3. Before going to Iowa City, we were told to come with our bags packed and to expect to stay (never a good sign). Once there, Beck had an ECHO, a slew of labs, and was seen by the doctor. Labs showed that he was still dehydrated, his Tacro level (Prograf - anti rejection drug) was smoking high, he was CMV negative (phew!), and that his B cells are still suppressed from the Rituxin from last year, but are slowly starting to come back. His ECHO showed that his heart looked great and had no signs of rejection (which the doctor was concerned might be causing Beckham's symptoms). Because of all of this, Beck's Tacro was lowered, he was taken off of Bactrum (which he has been on since March to prevent bacterial pneumonia, caused from the Rituxin), and we were sent home. Yeah!

4. By the weekend (that would be last weekend) his symptoms all returned with a whole lot more poop and puke, and he also developed a thick, mucous cough. On Tuesday, his HH nurse came to draw his Tacro level, a BMP, and CBC. His Tacro came back lowered, his BMP showed that he was much less dehydrated, and his CBC showed that his platelets had dropped to 97. Bummer! His WBC does not indicate an infection, so we still don't know what's brewing in this little guy. His EBV (Epstein barr - mono) test, however, came back slightly elevated - this does not mean that he has EBV, but we will watch it closely from now on.

5. Now we are playing the wait and see game. Labs will be checked again (Beck is a little pin cushion by this point) on Thursday, and if his platelets are still low then he will have to be admitted for IVIG treatments. I'm hoping that we make it at home until then. Beck is not sounding good with his cough, and the pukes are happening right and left. Actually, last night we were talking to Nate's family on the web cam, and Beck greeted them by vomiting all over. How sweet!

That's it for now. We'll keep you posted!
-Beckham & Co.

Vomit

I know, I know - great title to start a post, right? But, seriously, this was the best and most accurate way to describe this last week. And all I can say is YUCK!

This week was supposed to be full of appointments for our little guy (genetics, cardiology, neurology) since he was out of the hospital and over his RSV and lowered platelets. But instead, it was full of the stomach flu which hit our house in a HUGE way. Yuck again!

On Monday morning around 12:00 AM, I was awoken to the unmistakable sounds of heaving coming from the kiddos room. I ran in to find Gwen vomiting all over her bed, and I quickly grabbed her and rushed her to the bathroom. After a few more rounds of vomit, a good thorough clean-up, and lots of hugs, I put Gwen in bed with me and tried to drift off to sleep (Nate was at work at the time). I guess that I should have known better than to assume that I would be able to fall back to sleep because about an hour later I heard a loud wail come from the kids room and ran in to find Beckham sobbing. I picked him up and stuck him in my bed just in time to see him start the vomiting process. Luckily, I am a vomit expert (seriously...and sadly) and I was prepared with a bowl and a towel. As I caught his puke, of course, Gwen decided that it was time for her to start puking again, and I turned and caught her puke as well. Now, I don't know about you, but I think I deserve and award for catching two sets of puke at the same time. That really is talent! The puking lasted about another hour until Nate got home, at which time, I handed him a kid, and we each slept with one through out the night, and caught puke as it came. Yuck, a third time.

The kiddos stomach flu lasted for the next couple of days, and by Wednesday, I was puking my guts up as well (lovely). Yuck, a fourth time. I guess that I just could not let the kids take part in all the fun and not get involved, right? I am now feeling much better and so is little Gwen. Beck, on the other hand, is still a little queasy and sporadically pukes, and has no appetite (I actually just cleaned up his puke a half hour ago...so lucky!). We are hoping that this will soon end as he is down a pound (he weights 26 lbs as of today), and we want to avoid the hospital. Labs were drawn today and showed that his hemoglobin, platelets, and white blood count is stable - so great considering that he caught a virus so soon after his last one - but his electrolytes are a little on the low side, so we will have to keep pushing fluid.

On the upside of things (this has nothing to do with vomit), we did at least make it to one appointment - Genetics - which was extremely positive. The Genetics doctor was sure that, given Beck's huge history, that he would have some sort of underlining Genetics defect, but he does not. All of his tests came back negative for any sort of defect! There is still one more test to run, but the doctor is pretty sure that it will come back negative as well. If it does, she said that our chances of having another baby with Beck's heart defect is 1%, which if you add that to the 5% chance that everyone has of having a baby with a defect, that puts us at 6%. Wow! So great! No yuck to that! Now all we have to do is have the courage to have another baby. Hmmm.....easier said than done!

That's it for now from the land of vomit! Let's hope and pray that this next week will bring a much sweeter and more pleasant title than this one.

-Beckham and Co.