Tuesday, June 22, 2010

The day we almost went home

Well, since his labs looked decent this morning (ANC of 700, Hgb of 11.4 and platelets of 381 - What? Are you sure that's my kid?) he was going to go home today. The doctor came in, said we could go, and was about to go over the maintenance plan while she was doing her exam. She said he felt warm. He was running pretty warm but his temps had all come up normal. She wasn't happy so she ordered a rectal temp and while we were waiting she watched his sats. He is tachycardic and his respiratory rate is slightly up. His nurse came in and said he looked paler than he did even an hour ago.  Everyone has taken his temp nine ways to Sunday and it is still coming up just over 99, BUT he feels really warm. Plus his heart rate and RR are still up, so here we remain. At this point I don't even want to go home. I want answers. There I said it. Even if it means being stuck here. What I don't want is to go home and then have to come back again like last time. He is also making a squeak sometimes when he inhales so she is going to see if ENT will look at him tomorrow, maybe the laryngomalacia is flairing up and has something to do with all this - who knows!  Every single viral and bacterial test so far has come back negative. The only puzzle pieces we have are a slightly cloudy chest x-ray and  low levels of IgM antibodies. It is not enough to get even a cloudy picture going. No one was really thinking that leukemia was the case anyway since he had started making platelets again, and while it is certainly nice to have that concrete answer we are no further along than before. And BTW he needed to be resucitated with the bag and an Atropine injection to boost his dropping heart rate after coming out of anesthesia yesterday.
I am very frustrated but please don't mistake that for ungrateful. Maybe tomorrow we will go home, and maybe we won't, and that's ok, because I want to take him home when it is safe to take him home.
ps - I have cute pictures and videos but my husband sent the wrong USB cord from home, so it will have to wait.


  1. Uugghh!! This is frustrating for you that nothing seems to be adding up. I agree that staying put is the best plan for right now because I think you would spend too much time worrying at home. This way if anything takes a sudden change, he is right there. Are you still in the big hospital or are you back in the satellite??? I think we will be hospital dwellers with you starting tomorrow. We should become texting buddies!!

  2. Needing to be bagged after anesthesia sounds so Down syndrome, I even had to chuckle a little! I agree, I hate being in the hospital but you don't want to end up back there again. Your lucky that your doctor was remembering those little things. I feel like I have to pull teeth at our hospital for them to take a second look at things that just don't seem right!

  3. Maybe he just has a crush on one of his nurses and just wants to hang out a little longer :)

  4. OK, I gasped at the fact that he had to be bagged after anesthesia and my friend Lacey above chuckled. yeah, we are on such majorly different levels!

    You guys are like the super hero moms!

    And what do you mean he sent home the wrong cord!!! You know it's all about the pictures!!!

    as always sending prayers!!

  5. Oh Stephanie is so funny!
    You are also lucky that you have 5 hospitals to choose from. Are they all that close?
    Thats a huge reason why we are moving. We have one childrens hospital, and that one serves all surrounding states. Plus it was number 1 in 1995, and now isn't even in the top 25, that tells me something! In Cali I have 4 childrens hospitals right in my area! Oh someday soon we'll be by good care!

  6. I hope this comment doesn't get posted twice...I just typed it once and then it disappeared....anyway...did you just add that part about him getting resucitated? I did not notice that the first time I was on here....but Oh my!!!

  7. I hope you get the answers you are looking for soon! As unfortunate as it is that you did not make it home, with all this uncertaitanty, you are so right in staying put! Poor Tomas:( We will continue to pray for answers and that you will be home soon!!