Friday, December 3, 2010

I shop at Aldi's because...

there is only one kind of whatever it is you need/want. No choices, no decisions. It is this one or nothing. I love it. Here's why:
 Tomas started running a fever the night he got all those vaccinations. This paralyzed me. A while back the pediatrician told me not to give him Motrin/ibuprofen because of his platelet issues. Well, now can I give him Tylenol/acetaminophen due to his liver issues? In the end I went with the Tylenol - how bad can one dose be? But really, does everything have to be this involved?
By morning the fever was back, which opens up a whole other can of worms. It is called neutropenic precautions and fever protocol. I am supposed to call in every fever Tomas has to the CCBD (center for cancer and blood disorders) clinic, and if it is after hours I am supposed to bring him to ER for any sustained fever over 100.4 or any single temp over 101. Well his temp had been 100.5 for about 12 hours at that point but at least it was during office hours. The dilemma was that I was pretty sure it was from the vaccines and didn't feel like having the CCBD tell me he needed to come in for labwork and possible IV antibiotics. So here I sat for most of the morning fighting with myself about the fever. Is it from being sick, or is it from the vaccines, do I call, do I not call. I split the difference and called the pedi, who told me it probably was from the vaccines (whew!) BUT that I needed to call the CCBD anyway (why I didn't see that one coming I'll never know).
I called them around 11, and when I hung up the DME called and wanted to service Tomas' O2 compressor that afternoon. Fine, my husband was out that morning but would be back in the afternoon. I had to leave the house by noon to get to a 1pm GI appt. But it was now 10 mins till noon and no call back from CCBD yet, and Tomas still had a low fever and just looked under the weather. Another dilemma! Do I go, or not go. I really needed to talk to the GI and get things moving and sorted out. This time I decided to cancel since Tomas was tired and just feeling blah. By the time I called though it was 12 and the office was shut for lunch, we are the first appt. afer lunch and there is no way for me to cancel until 1. So I felt bad and decided to go. One problem, my husband wasn't back from his errands yet which meant the girls had to go with me. Called him on the way and told him the compressor guy was coming in the afternoon, met him at Walgreen's (getting flu shot) so I can give him the girls and then they needed to hurry back to the house. CCBD called while I was driving and said to monitor his fever and call if it didn't resolve, and to come in right away if his labs came back with an ANC under 800. He had labs drawn the day before but I didn't have the results yet.
Ok, girls were handed off and I went on to the GI office. The three of them got home just 5 minutes before the oxygen guy showed up, so that all worked out.
I am so glad I went.
He is such a conundrum of a doctor. Absolutely abhorrent at calling back, including calling other doctors back; but, oh so frank and straightforward at the office. I told him that the immunologist thought Tomas' illnesses were due to nutritional deficiencies. He said to simply look at Tomas tells you he is not malnourished. She is saying that because he is on a blended diet and it is an easy thing to blame, as opposed to digging deeper to find the problem. And by saying it is dietary, it kicks the ball back into GI's play and she is off the hook. Even if none of that is true, you've just got to love a doctor who can be that honest. I asked about the calcium results on Tomas' labwork (it has been low the last few draws). The immunologist thought he needed more calcium. I told the GI he was getting tons of calcium. He gets 5 grams per kilo and normal dietary guidelines are under 4. He said it is not from his diet it is because he is leaking antibodies out all over the place, after all his antibodies are only at 50% of normal. He said there is no way that Tomas' diet has anything to do with his health. If he were eating the things he gets through the tube by mouth no one would have anything to say about his diet. On a side note here, if he were only getting formula by mouth at two years old everyone would be up in arms at his diet. I fail to see how the method of delivery changes that, but it does. Very few doctors are supportive of a blended diet, mostly because they think parents can't get it right - but take a look at how your average oral-eating toddler eats - I don't see many docs ordering parents of those kids to ONLY give them Pediasure, as it is nutritionally balanced. But I digress...
Anyway, diet not an issue. Great, neither I nor the pedi thought so, now what? Turns out there is a new blood serum test to check for the disorder we all think Tomas has. The Mayo clinic in Rochester, NY runs it and I can just have him drawn here at my local lab. Awesome!!! It has a high false negative, so if it comes back as a no Tomas will still have to have the liver biopsy, but if it comes back positive, then we are done and do not have to go piercing organs (doctor's words). The GI said to leave him on J feeds for now, even though we are not sure if that is complicating getting a diagnosis. Honestly, no one knows how much Tomas having been on continuous feeds for most of his life is masking whatever is going on. We do know that for many varied reasons every time we try to bolus feed him we end up back on J feeds. He said that switching to G feeds, even continuous, would be too dangerous right now. The stomach doesn't empty constantly, even with normal motility, it fills and then dumps, rests and dumps, etc... We have no way of knowing if Tomas' hypoglycemia is from the stomach dumping and his body producing too much insulin, or if it is from his bodies inability to pull sugar stores from the liver during the times the stomach is not emptying. So crazy.
One other thing we discussed was the bloody discharge from Tomas' stomach and bloody seepage from around his stoma. The GI said it is probably granulation tissue in the stoma path and the only way to fix it is to remove the tube, cauterize the tissue, and replace the tube. I asked if we really needed to do that and he said, "Nope, we have much bigger monsters to chase, especially since he is not anemic." Unfortunately that was before I got the results of the previous day's labwork. Turns out Tomas is anemic and his hemaglobin is lower than it has been in the last 14 months. I'm not sure if I want to pursue it though. He is only slightly anemic and the whole removing the tube, replacing the tube thing is really traumatic for him. Luckily, he gets labs done often enough that I can keep and eye on it and pursue if necessary. And to finish off a very informative day his ANC was 1200!!! Woohoo - no add on trip to CCBD!!! His fever is still off and on, but the pedi said the vaccines could cause a low fever for up to a week, and with an ANC of 1200 I do not have to worry about him going septic in a matter of hours. What a relief.

Part of the beauty of this blog is it allows me a "mental unload". Typing it all out gets it out of my head and helps me put an order to all the information I get thrown at me. Before I find the time to sit and type all this stuff out my brain just sort of bounces all over the place. But seeing it here, and reading it in some sort of (I hope) cohesive manner helps so much. Thanks everyone for listening, and thanks even more if you can have the time to comment. I know how hard it can be to keep up with all our blogging families, so a very simple and heartfelt thankyou.


  1. Unload away.I get it and I send you prayers and love from a far.And ... there is that ever present gorgeous smile of your little guys.Despite it all,the child just keeps on smiling.You do the same,okay momma?

  2. Exactly, unload away. Thats what its for, and the people who don't like it, don't have to read! I love getting it out on paper to look over again!

  3. Yeah - most of that went right over my head. But love the pictures of your cutie pie regardless!

  4. We read the mountain of medical/technical stuff and then see that wonderful little face..... You know it helps us too!

  5. Whatever it reaction? Damn! I agree with Eunice, I love the pics!