Another Bump Along The Road

Jaisal has been sick since his rejection episode at the end of October. It started out as a dry cough that woke him up at night. After a week or so it turned into a more phlegmy cough. After that particular cough hung around for a bit, we went to the pediatrician to make sure it wasn't pneumonia. (It wasn't. Phew).

Then a fever got added to the mix. Again back to the pediatrician because, to be honest, we don't know how to handle normal sick kid. We've never done it. Once again pediatrician gives us the okay that nothing serious is going on.

Jaisal was super groggy and not eating while he had his fever. He spent most days and nights curled up with me, including almost all day on Thanksgiving. Friday morning he woke up with a burst of energy. We were optimistic that he was turning a corner but the optimism faded when a couple hours later Jaisal still had not eaten and was ready to go back to bed.

Kirk and I just couldn't shake the feeling that something was wrong. We made another sick appointment with the pediatrician and then thought better of it and went to the ER. The docs there felt pretty confident that Jaisal had a normal viral thing.  However, Jaisal's blood tests showed that Jaisal's white count and absolute neutrophil count had both dropped to nearly nothing. This made Jaisal super susceptible to not only illness, but in his case life threatening infection if this illness was anything other than a normal virus. Not at all what we expected when we came to the hospital, but it made us glad that we did. (This also did nothing to help us learn how to deal with normal illnesses.) We were admitted while we Jaisal was put on preventative IV antibiotics and we waited for every test under the moon to come back to rule out something more nefarious than a regular kid illness.

We've learned that it is actually quite normal for WBC and AND to fall when you're sick. Though Jaisal's lows were quite low. We also learned that two of the meds that Jaisal is on can suppress bone marrow production, so Jaisal was likely experiencing a double punch.

Sunday morning rolls around and all of the tests came back negative, but Jaisal's WBC and ANC are still pitifully low. The docs decided to stop one of Jaisal's immune suppressants. Scary due to the recent rejection, but exciting from a reducing immune suppression perspective. Why can nothing be simple in this whole process? I don't even know when to be happy or scared?

The doctors also wanted to keep us inpatient one more day, but I badgered them into releasing us (there are some advantages to the doctors knowing that a) I am a crazy over protective mom when it comes to Jaisal's health and b) that we live less than 2 miles away from the hospital and can be there in approximately 15 minutes).

We're home now and Jaisal is enjoying is time as a bubble boy. We've had labs twice this week and his WBC has rebounded and his ANC is slowly starting to creep up.  His ANC is about half of where we need it to be before he can resume group activities (and even at that point will still be about 1/5 of the count he had less than 2 weeks ago). We're hopeful that in another week or so he'll be able to start getting back to normal.