WBC - 9.9
Hemoglobin - 14.3
Platelets - 305k
Weight - 39lbs
Height - He's only grown about 1cm in the past year
We are in the BASS Center (formally called the Day Hospital) which is a brand new wing on the first floor with fancy, clean, large rooms. He is here for IVIG, Zenopax, and blood counts/chemistries. His chemistries look pretty good.
David's been feeling well.
They had to poke him 4 times to get an IV. We had Judith the nurse today. We have had her before and...well...let me just say that I would prefer another nurse. He layed almost motionless, he is numb to almost everything. However, Dr. Amylon asked to look in his mouth. No way! I think he wants to have some control over something and he purses his lips so hard there is no way in except with a tongue depressor. Dr. Amylon was so patient and kind but had to see inside his mouth. His mouth looks good. I brush his teeth every day so I can see.
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Yeah, before Ayden had the port, it didn't take us too long to start requesting Cheryl the nurse instead of Maggie. If there's any way to do it, I'd request a different nurse. Might annoy Judith, but it's better than David getting poked more than necessary.
Hello,
Wow, I haven't heard the word Zenopax in awhile. My son was given Zenopax to help with his chronic GVH, but didn't help. They then tried Retuxen,(I know I didn't spell that right, I will pull my hospital file and get the correct spelling later)but that did not quite do the trick either. They then decided to give my son the Zenopax and the Retuxen back to back, and thank goodness, that worked for us.
Don't be too worried,(yes I know, telling you not to worry isn't going to stop you from worrying, it never did me)about your little one not growning much, believe it or not, given time, they seem to catch up on the most of it. My son is now 9 years old, we went through transplant at 6 months and although transplant wasn't too bad for us, we had a lot of complications later, (i.e. chronic high blood pressure, chronic GVH, severe stunting, hemolizing, stroke, nephrodic syndrome) nothing seemed to go as the doctors thought, he was an enigma in many ways. But we made it. And a lot of it was due to us, his parents, we followed doctors orders to the letter, (perhaps a little excessive) we felt we had enough problems and didn't want stupid things like a sunburn to hurt us even more.
As to avoiding nurses, I did, we had one nurse that, although I hate to put it in print, was unkind, mostly to the parents thank goodness. After a few interactions with her I made sure we never dealt with her again. Parents have enough going on, they do not have the time, nor the energy to deal with either unskilled or unkind nurses.
My son is doing wonderful now, although it is a bit of a fight to ensure that the school districts do not limit him and supply any and all the supports he needs. I have become somewhat of an expert on education law..lol.
Your family will be in our thoughs. I know when we went through this, my way of handling everything was to hold the thought that everything was fine, then when things weren't fine, we dealt with them and went right back to everything was just fine. One day at a time, right.
All our best, Kimble
Hi, my son Noah has Wiskott Aldrich Syndrome he is almost 6 months old and he will have his Bone Marrow Transplant on May 26 2009. I wanted to know if you could email me and i could ask you some questions my email address is nictrumbull@yahoo.com. I know that it might be hard for you but I would like to hear from someone that has gone through this.
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