Immune Bloodwork Clarification

So I need to clarify what is going on with the immune bloodwork as many people are asking questions and I just feel I can explain it here....

So over three months ago I got a call from Duke explaining that due to some new research they were going to stop Caleb's Immunoglobulin infusion (pseudo-immune infusion) and Bactram (medicine to prevent him from getting silent pneumonia) and see if he could maintain his IgG levels on his own (IgG: the part of the immune system that fights bugs). They indicated they would wait three months and draw the blood and check. If the bloodwork looked okay then he would stay of both meds, if not they would resume the meds.

The bloodwork was scheduled to be done at the end of July, a week short of three months since he got the two meds mentioned above. Fortunately enough, I did get any other bloodwork needed from other docs grouped with this bloodwork so he wouldn't have to be stuck more than once in such a short time as Caleb does not have any good veins left due to how many times he was accessed during his lengthy hospital stay and how damaged his veins are to the harsh antibiotics, meds, and IVs/central lines he had. This bloodwork usually takes around a month to yield any results. However, sometimes it comes back in as little as two weeks.

So before we left for the beach I did send them an email asking them if anything was back yet as even though we would thoroughly clean the beachhouse and stay there and limit outings, it is still a chance of exposure. So I just wanted to see if they had anything back yet. They indicated that they should have something within the next week or two. Well time passed and I heard nothing. This past week I was getting very anxious and sent them an email asking them if anything was back and I was told they would be coming back into town and would get back to me. Then yesterday morning I get a call from a new fellow that works for the Allergy and Immunology department with Children's Hospital in Pittsburgh. I was not able to get to the phone so she left a voice mail indicating that Duke wanted an IgG level drawn. So that was how I found out that the IgG level wasn't tested int he last batch of bloodwork, I was very upset. Then what made it even worse was as the voice mail went on the fellow said that when Duke asked for the bloodwork she said to them that we could 'just wait on drawing that level until Duke needed more bloodwork' . I was livid! Who is she to make the call on when the IgG level should be drawn. Does she know that Caleb has lived in a bubble for over THREE YEARS and this level could give him some freedom?!?! Did she not think it would be wise to call me and see what I think!?!? Are you kidding me?!? I then tried to call her back and got the wonderful automated message. So I then sent Duke an email indicating that I did not agree with Children's fellow regarding waiting on pulling an IgG level as Caleb has now been without these vital meds for over three months now. If he does need them he could be in great danger as flu season is approaching and the H1N1 virus is another extreme added concern for him. We now are waiting to see when Duke will be ready for his blood. Then we will have to wait atleast a month for the results, then we will be right into flu season, and if he needs those vital meds....one is an IV therapy and I have to get the new script, pump, etc and that cannot be done overnight.

So I hope, as you read this, you can understand why I am so upset. We are getting very close to flu season and Caleb has not had these meds in over three months and is virtually unprotected if he needs them and is not maintaining his IgG levels high enough. Also, I was hoping if we got these levels back it was going to yield some good news and we could get him out to do some fun stuff before summer ends. We know that this winter would be scary either way due his immune issues. But there are a couple weeks of summer left and it would of been nice to know if we could have been able to do some fun activities with him.

I just am having a rough time with this...

God Bless you all!!

God Bless Caleb!!