Wound Care and Other Updates

Wound Care

Why wound care?  Evie has a HORRIBLE diaper rash! It has been getting progressively worse, and the nurses have been trying everything they can think of to help her- creams, ointments, powders, and 100% oxygen blown at her bottom for hours at a time.  No matter what they try, Evie's skin keeps breaking down, bleeding, and even sluffing off- poor, poor baby!  She is in pain.

Today we had a nurse who worked for 2 years in wound care, and she brought in some sticky fake skin to adhere to the affected area.  She also gave Evie some morphine while she cleaned the wound really thoroughly. Luckily she will be with Evie for 3 days straight, so there will be some consistency in her care.  I hope this nurse's experience and ingenuity are the ticket to healing that bum!

Lungs

Evie has been on a ventilator for the full 10 weeks since she was born.  We know that her swollen liver is preventing her lungs from expanding fully: On the X-ray you can see it taking up a full 2-ribs-worth of lung space!  We also know that her lungs and trachea are affected by the mere fact of having been on a ventilator so long.  The tube caused a bacterial infection which is gone now, but the tube still causes her to produce lots of mucus.  On the positive side, her trachea is not swollen around the tube, and her ventilator settings are overall pretty good.  A lung doctor will visit Evie this weekend and take a look at her chart/x-ray as well.  We can't wait to hear what she has to say. . . so stay tuned for another update on the progress to breathing on her own.

Here you can see the dark red liver of an average adult.  Imagine if it was swollen 2 ribs higher!

The Virus

None of Evie's doctors have seen such a long, drawn out case of CMV disease.  Her liver and spleen are still gigantic, and they are still chewing up platelets at an astonishing rate.  She needs platelet transfusions every third day on average, and that is just to get her at one eighth the normal level.  The virus not only causes platelets to get trapped and chewed up, but it suppresses their production by the bone marrow.  Also, Evie's doctor said that the antiviral medicine probably made things worse by affecting the bone marrow too.  Fortunately, a hematologist confirmed last week that Evie does make a few of her own platelets, so her bone marrow at least works a little, but there is a long, long way to go before she'll stop needing transfusions.  Could it be weeks?  Could it be months? We cannot know.  As far as I know, there is nothing they can really do except support her with good nutrition as her body fights and fights.

So yeah, the outlook right now is somewhat bleak, and I'll confess that I have been battling some depression lately.  (This of course is evidenced by the last two entries.)  I asked the dreaded question once again- Is there a chance Evie could still die from this? The answer- highly unlikely.  But it will be a long time still in the NICU, and her brain will probably be affected forever.