Saturday, October 10, 2009

Monthly Overnight Cytoxan/IVIG Complete

We are home! It went smoothly. Not as bad as I thought. We were put into our own room because of my flu symptoms. They took a lot of precautions. (I am feeling sooo much better by the way!) I was stuck in the room the entire time but no biggie. We spent two and a half hours up in clinic. Gary is doing very well strength wise. I told them that his skin was pretty clear all month until this last week. I noticed the heliotrope across his eyelids had made there return. His skin looked like he was having some disease activity or at least indicates that. I was slightly upset because the doctors and I had some miscommunication about medicine's given and doses. It is not easy keeping track of everything Gary has to take, but it is not rocket science either. They had added a blood pressure medicine last most month called enipril. The words CHANGE was used. Nobody explained that it was in addition to the blood pressure med he was already taking. Mid month I had called asked if I could reduce his steroid dose because of how great he was doing. I was informed I was already suppose to be doing the decrease. OK is it me or WHAT?! It doesn't take me long to remove myself from being upset or hysterical if you like. Everything happens for a reason. There is a reason for all this mess up. It does not matter that Children's has a news story in the media about a child that was given the wrong dose of meds and died. I felt more at ease after the senior attending came in and really didn't make a big deal out it. Gary's blood pressure is still more than mine, but I am still trying to figure out if it is a serious or something to really worry about.

I had gone down on his predisone by 1/2 teaspoon on Wednesday. It was one day I decreased it without really clearing it with them. They were fine with it but decided it would be better to stay at 5ml for the month. Because of the activity going on in his skin they decided to stop the lowering for now. They reminded me we had gone down quite a bit this past month and we can't rush it. RRROOOOAOAAARRRR! I know, I just need to be patient. I don't want this coming back and rearing its ugliness. At the same time, I think I have mention this before, its a double edge sword. Deal with the disease, or deal with the harmful effects of the drugs.

The Big Weigh In
So in my previous blogs I had mentioned how excited to see how much weight he had lost. He certainly looks slimmer. Nothing. Nada. He stayed the same in height and weight. I was disappointed and asked when is it going to come off. The doctor informed me he is still on a pretty high dose. Looks like he will stay there until this thing quiets down completely.

On our way out today he had his flu shot. The IV went the fine. He screamed and cryed. But we got it on the first poke. Well technically second because the IV nurse accidentally caught her glove on the IV has been pulled back to reach for the lab tubes and her glove caught it pulled back out. OOooppss.

Tonight Gary sleeps. He pulled me to bed at 6pm and just crashed. Poor baby. This picture should be nominated for Cutest Tushie in the Universe. Alright at least at Seattle Childrens.

Oh yes! I must add this in. Gary had no accidents at the hospital. We have been potty training for about 3 weeks now. The doctor warned me that he may have little trouble with all the drugs they give him. Nope he didn't! I am so happy about that. He even is sleeping in big boy underwear. I know, I am very brave. I figure what they hey, lets go for it.


  1. First off I am glad Gary's treatment went well Yay! Great News! Hope your feeling better! Secondly, at least ya got a private room huh! Ha! I feel ya completely on the meds thing, on nurse tells ya one thing, a doctor another and then they act like oh ya should be doing this other.... and your like well if ya'll would get on the same page we would.... HELLO....
    That pic of Gary is soooooo cute and funny! Hope his rash calms down.... Hang in there
    Summer :0)

  2. I am so glad that the overnight went well. I love the picture! I am with you on the adjusting of meds. I carry a calendar and write down the changes on the day with the doctor in the office. I think it makes them nervous, but at least I know we are on the same page. (at least at that moment!) I hate to hear about the rash, but they told us something interesting about the heliotroping. Kya does it when she is tired. No other rash or anything. They told us with as light complected as she is it could just be her. I wasn't sure if I bought it, but it seems to be. Kaysa gets dark circles under her eyes so I guess it could just be her sign.

    Well, we continue to pray for your family. Hang in there mama tiger!

  3. Thank you Summer!

    I wonder that myself but I am more on the side that I don't buy it. JDM has a very characteristic rash. I would say, yes, that is what he looks like when he is tired, has since he was a baby, BUT that is just not the case. We know our children. I know that even if I stand back and look you can see what almost resembles a line of purple eye shadow. Plus Gary had a very prominent purple vein in the heliotrope that looked like it might turn into an small ulcer like it did in the beginning. They also noted the increase gottrons papules on his fingers. He does however, look better since we have gotten home. There is a purple redness that a healthly child does not have that our precious JDM kids do. I mean I can see, yes maybe, but we know them the best! I love love love your input. I don't feel so alone when you give me your feedback. (((HUGS))))