So Sick!

We are over the drama of Sydney's puke...she must have somehow gagged herself during the night as no other symptoms showed up.

Now we are dealing with a different type of sickness.

We have our meeting scheduled for this afternoon with the bone marrow doctor to sign the consent forms and paperwork for the transplant. It is looking like they will be putting the central line in on Monday and starting the conditioning chemo after.

The doctor is running about 30 minutes late. She comes in and starts with, "We are delayed again."

Doug and my face drop... seriously, are we in a movie with really creative script writers? It is getting ridiculous at this stage and someone needs to advise them that they have gone too over the top with this script. It is not even believable anymore with the recent additions of the crazy cop, pukefest, and now yet another delay.

She goes on to tell us the Infectious Disease Doctors are concerned he may have some unidentified infection given his fevers (which he has had since Sept when he broke his arm with all negative test results so far), the CT scan (which yes, came back 2 weeks ago but no one told us it looked concerning at the time), and the positive fungal test (which is notorious for false positives when given after blood products which his was).

We are soooooooooooo frustrated - frustrated to the point of wanting to scream and cry all at the same time.

I AM SO SICK OF THIS!!! I am tired of being whipped around... of thinking we get to move forward and yet another complication, of watching your child get sicker and sicker and feeling so helpless, of finding the balance between advocating while not alienating the doctors that can help him, of living our lives at the hospital. Will this nightmare ever end?

So, they are now going to do a procedure tomorrow called a BAL where they put him under, put a tube down his nose, and get samples of his lungs to look for any type of infection. He will need 6 transfusions before anethesia (2 platelet, 2 blood, 2 plasma). The results will take 4-5 business days to get back. They won't proceed with the transplant until this comes back negative.

How much should one little boy have to endure??? How much should our family have to endure?

Mercy...

Kristin