What's that you say? Abnormal?

>> Wednesday, July 24, 2013

I'm taking a shower, minding my own business and the phone rings.

Let's go back to Arkansas first.

After we got settled into the EEG at Arkansas Children's Hospital, and we started the IVIg, life seemed pretty surreal.

Here we were, south of the Mason Dixon getting the treatment, that for over a year, I had been trying to secure for Bug. It didn't seem to be real. Not sure why, I always get what I want. Phhfft.

The first night was uneventful and the second was as well but the third...sucked. Turns out Bug was constipated. I had realized it the evening of the second infusion and made the comment that we MIGHT want to help him out in that department. I didn't follow it up though and so on the third day he ate a HUGE breakfast and no lunch. He slept.  Uh oh. That evening he didn't touch his dinner and I started to worry it was the IVIg. Then, he puked. A lot. It was his breakfast. I didn't worry about the IVIg when I saw it was mostly his breakfast. He was NOT digesting it because he was 'full up'.

So we tried to give him Miralax. I told Glenn: You might not want to give him so much so fast, I am not sure he is done. Glenn looked at me and gave him another syringe. It came back to haunt him. Not that I am happy about that but...giggle.

The next two days were pretty mellow only Bug started almost saying things. We thought it was our imagination at first but then he kept doing it...of course he kept seizing too. That part I wish we had left in Arkansas but we can be patient for a few more months.

We left it with: They will set up the IVIg with PCMC and call us about the test results (hint, hint), then we may arrange to come back in two months or so. Thanks all around and two days home.

Driving through Colorado all I kept thinking was: Cannabis. I wonder.

That was over two weeks ago. We have heard nothing since then.

Until today.

I got out of the shower and answered the phone, it was Meg from Arkansas Children's Hospital. She was letting me know that his labs were abnormal. What was that you said? Abnormal? NOTHING has ever been abnormal before. Hooray!

SO, with these abnormal values, Dr. Frye likes to verify them with another test. OK. We can do that. More blood coming right up! Well, not immediately. They will fax the test to AMFOHO and then we will go give them another sample (please don't be urine, please don't be urine).

I asked about the IVIg while I had her and she said she would find out and get back to me. She thought they had faxed it, and I am sure they probably did, PCMC is just that way sometimes. Sad to say: we are used to it. But, get back to me, she did. The email asked me where we wanted the IVIg done. Oh hooray! And yet...poor Bug a boo.

Can't wait for the re-do and the results! A few more weeks! Eeek.

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