Day +11: How much longer?

Remember viridans streptococci from Day +7? The good news is that the blood cultures the following days came up clean. Might have been a contaminant (meaning the source of bacteria was not Nadia, but somehow got on the slide after drawing blood). So they have stopped one of her antibiotics. Nadia is doing well!

In a previous post we described what all the numbers mean that we post daily on the twitter feed. Nadia’s counts have bottomed out, and we patiently wait for changes. It is a dangerous time for Nadia because she has no immune system. We are blessed that she is still so full of energy. (Well, blessed and exhausted 😉 )

So here are some answers to questions you might be asking.

1) How long will Nadia be trapped in the isolation room?

We need her neutrophil count (ANC) to be larger than 0.5 for two consecutive days. But before they can measure ANC her white blood count (WBC) needs to be larger than 0.5. Today (and the last few days) Nadia had WBC < 0.1 and ANC = 0. This is what I mean by ‘bottomed out’. This is as low as they can measure.

But, once her ANC is 0.5 for two days together, and Nadia does not have any infections, she can go into ‘stepdown isolation’. This means she can come out of the isolation room and walk around the ward wearing a mask. She will be able to go to the playroom again! And she will be treated like royalty. When she is in the playroom during stepdown, no-one else will be allowed in there!

It is even possible during stepdown isolation that we will be moved out of the isolation room into another room on the ward, but it is too soon to know if this will apply to us.

It could take more than 30 days post transplant to get to this point. Today is day +11. So we are edging closer.

2) When can Nadia go home?

Nadia can will be discharged from the hospital when she has an ANC count of 0.5 for two days in a row after starting stepdown isolation. This means the fastest Nadia could feel daylight on her face again could be 4 days of ANC = 0.5. But this totally depends on her overall health. And it is possible for the ANC value to dip again after she is in stepdown isolation phase.

The other factors for overall health include: no feeding tube and all nutrition Nadia is getting is by eating on her own, no fevers or signs of infection, a limited need for blood transfusions, able to take medications by mouth, and mom and dad are taught how to changer Nadia’s CVC dressing and clean the lines.

When we start to see signs of engraftment, we will learn more.

Keep cheering for Nadia’s counts!

Sorted the toddler pulling out the straw problem: (the nurse laughed at my disproportionate joy in figuring out how to outsmart a 2 yr old)