Evie's Care Conference

On Wednesday we'll meet with Evie's team of doctors at P/SL.  I am again in thinking (not feeling) mode.  Here are the notes I have prepared. . .

Evie’s case has gone from severe to worse than severe.  We are leaning toward ending her treatment and allowing her life to end, but we want to be 100% sure of our decision, and so we prepared some questions for you about her status and the potential for death versus healing. If (by a true miracle) she were to survive, we also want to know what her quality of life might be like in the short term and the long term.  Some of the questions we will ask might have no direct relevance to her current situation, but they are just meant for us to learn and understand things for peace of mind.  Thanks for taking time to meet with us.

Invitees:

Dr. TH (primary doc.)

Dr. DH (former primary doc)

Dr. WD(infectious disease)

Dr. BB (hematology)

Dr. TS (gastroenterology)

Dr. LR (pulmonology)

Dr. JN (cardiology)

LL, RN (primary nurse)

Thoughts and Questions

Gastroenterology

1.     We learned on Thursday that Evie has developed some dangerous blood vessels in her esophagus as a result of the high blood pressure in her digestive system. Is it likely that she has more of these vessels elsewhere in her system that we just cannot see?  What is the risk these could rupture/ooze and cause her death in the near future?  Assuming Evie was otherwise recovered, how treatable is this issue?  Might there have been any way to prevent this issue given Evie’ precarious condition?

2.     I stopped tracking Evie’s liver function soon after she came off of the ganciclovere. What is the status of Evie’s liver function now? Assuming Evie was otherwise recovered, how likely is it that Evie’s liver would heal?  Over what time frame?

Hematology

1.     Besides bone marrow suppression due to CMV and spleen sequestration due to CMV, what might be causing Evie to require platelets so frequently?  What has been looked into, and what has been ruled out?

2.     What is the mechanism by which platelets get trapped in the spleen, and how might you stop that mechanism? How can you test for spleen function/malfunction?  What, if anything, could be done to help the spleen? 

3.     What is the status of Evie’s bone marrow and how has bone marrow function improved or worsened since coming off ganciclovere?  What, if anything, could be done to help it?

4.     Assuming Evie was otherwise recovered, how likely is it that the bone marrow would heal, and over what time frame?  What about the spleen?

Pulmonology

1.     What is the status of Evie’s lung/heart function and how has it improved or worsened since birth?

2.     Evie has pulmonary hypertension- is this a permanent condition or does that typically resolve with the Viagra treatment?

3.     Assuming Evie was otherwise recovered, how likely would it be for Evie’s lungs to heal, and over what time frame?

Infectious Disease

1.     We now know that Evie’s viral load was at a million copies per unit on 5/25, which coincided with worsening symptoms for Evie.  What are the theories as to why things got so much worse? (Steroids? Internal bleeding? Other?)

2.     Assuming a reduction in viral load would reduce Evie’s physical disease, how reasonable would it be to try phoscarnate to treat Evie?  How would it affect her short-term quality of life?  How would it affect her long-term quality of life?  Is it likely or even possible that Evie’s body could fight off the virus itself at this point?

3.     If, by a miracle, Evie survives, is it possible that Evie’s brain damage could be worse than it was at her last MRI?

Other:

1.     Are the any signs that Evie has recovered in any way since things got worse on 5/25?

2.     Let’s say we gave Evie’s treatment our best shot and she miraculously survived- what are the long-term effects of an extremely prolonged period in the NICU?

3.     What external resources has your team looked into and what did you learn?

We’ve now reviewed Evie’s many issues independently.  My sense is that all the issues combined add up to an unsolvable case. . . . Each issue depends on the other issues in tandem- right?  A depends on B, but B depends on A, so there is really no solution . . .