Sunday, October 18, 2009

Lazy Sunday ... not really, but kind of

A couple new things to talk about:

Dr. Epps (Leah's dermatologist) called me the other day because the most recent test results came in.  According to Dr. Epps, there's about 6 subtypes of Junctional that were tested for, including Herlitz and non-Herlitz, and Leah's results weren't positive for either of those, or for any of the other 4 sub-types.  So the good news is that it isn't (I guess) Herlitz.  I am confused however, that the only thing this test shows is confirmation that it's Junctional.  So I believe the next step is for Jeff and I to get genetic testing done to see if that can get us any more answers.  Everything I've read seems to say that JEB is a recessive disorder, so that means both Jeff and I are healthy carriers of the EB gene - and we had a 25% chance of having a JEB baby.  So I'm assuming these genetic tests will tell us exactly what we already assume: that we are both carriers.  Dr. Epps mentioned something about this being a possible gene mutation situation but again, everything I've read points to JEB being from a recessive gene.  I don't know -- it's weird -- and I never took genetics in school.  Too bad all my organic chem knowledge does me no good. 

Dr. Epps also supplied us with our Atarax prescription to try to calm the face itching.  There's just one problem: Leah won't take it.  Nurse Ann seems to have a somewhat successful method of getting it in her mouth but I've been unable to duplicate it.  It can be mixed with formula -- but guess who can detect 1.5 tsp of medicine in a 5.5 oz bottle?  She's too damn smart.  She takes a suck, stops and looks at me like 'Nuh-uh lady'.  It's flavored medicine ... mint flavored .... Leah doesn't like mint.  Jeff doesn't either - as he said "You could put a teaspoon of mint in my Gatorade and I'd taste it & not like it".  I called the pharmacy to see what could be done.  They can add flavor to it but the mint will still be there.  So I just have to figure out what flavor would be best.  But, rather than ply her with meds (since every medicine seems to constipate her) .... we've decided to improvise on our bandaging method for the time being.  More on that later.

I tried to time our daily Leah care today just to give you an idea of what we do here on a daily basis.  We also tried to go a bit faster than usual today and not dilly dally since Jeff had to leave for work around 4 o'clock.  So .... Leah officially went into the tub (sink) at 2:26.  I always give her head a good squirting because it's her favorite part of her bath by far (though she really loves everything about bath time).  I place a nice warm washcloth on her belly to keep her warm, and then I begin soaking her bandages because it usually makes them much easier to get off.  Then I go limb by limb, slowly and carefully cutting off the gauze and slowly and carefully pulling off the EB-friendly dressings.  Then I'll take an overview of her skin and pop whatever blisters I can see/find/get to -- if she has any.  Some days she has none, some days there are several.  When I was all done with all those things today it was 2:44.  (All the while, I'm also monitoring water temperature, water level, and periodically reaching under her bath mat to let out dirty water). Then I begin to give her a nice sudsing down - trying to rinse off the layer of cream (whatever cream I put on her the day before - today it was diaper cream - it's not just for hineys anymore).  I use my little handy dandy squirt bottle women are given in the hospital after having a baby - it's proven itself to be invaluable for Leah's bathtime.  It gives a nice little stream that can either be kind of strong (when trying to wash off stubborn cream - or spray off gobs of Aquaphor from her hair) or super gentle (any tender areas of wounded skin).  Then I q-tip out her ears.  On most days I'll continue to pour warm water over Leah and do her spa treatment for about 10 or 15 more minutes.  But today we pulled her out of her tub-sink at 2:56.  Then it's into the living room for her trach collar change and new bandages.  We lay her on her changing table and I hold the trach in place while Jeff undoes the old (now soggy) collar and puts on her new one.  We finished that at 3:06.  Then we moved her to the floor on her kitty cat mat to do her bandages.  Today we had a minute-or-so long pause for an extremely rare mid-bandaging poop.  All the sudden Leah started crying her "I'm pooping" cry (though it sounds different through a trach I still know her cries) and I looked down to see the little turtle head poking out.  My choices were to either let it go on her clean blanket and possibly get on her clean, unbandaged legs, or catch the poop with my hand ..... so I caught the poop with my hand.  I didn't wake up today thinking "At 3:10 PM I shall hold Leah's fresh warm poop in my palm", but I guess you just never know.  (We don't diaper her till the end of her bandaging sessions just to give her some diaper-freedom/air-out-the-hiney time - and like I said she never poops, and even rarely pees during this time so it's never a messy problem).  So anyway - we bandaged each limb, put her in a new diaper and ta-da - done.  It was 3:36.  So yeah, just over an hour from beginning to end - but that's with everything being prepared beforehand and no silly dilly dallying.  I pre-size and pad her collars and always have at least 2 or 3 ready to go.  It probably takes about 5 minutes to 'make' a collar - though I've never timed myself.  There are always q-tips sitting in the airtight container of the wound cleanser we use to clean around the stoma.  I have a box of bandaging supplies on the floor stocked up for changes.  I pre-cut different sized pieces of Restore and keep them in an airtight container.  I pre-cut dozens of pieces of Tubifast for her arms and legs.  Any cream I use for her dressings is in Alwyn jars that we've used up, cleaned out and filled with things like Diaper Cream or DermaGran so that I'm not fumbling with greasy hands on near-empty tubes of ointment and creams.  And of course Leah herself is a big reason - she's still the best baby in the world.  She never fusses, fights, cries (unless she's pooping), or does anything in the way of "I know you guys hate EB, but I have it, and having it sucks worse than just dealing with it, so I'm gonna be upset at the world and make this hard for you guys too" to make extra work.  She just lays quietly, calmly looking around ... sometimes she folds her little hands together like a little lady waiting to be served her afternoon tea.  The regular things I do to make her smile still make her smile, even as she's being wrapped up like a mummy ... speaking of which ........

The only thing different about our bandaging session today, and the past few days, is that we're wrapping Leah's arms really thick so that she cannot bend her arm to get to her face to rub it.  She looks like the Michelin man - and she can still manage to reach the back of her left hand up to the middle of her forehead - but that's about it.  And it takes so much effort for her to lift her huge arm up and reach it that I think she realized it's not even worth the effort. 

Here's her face from yesterday (if only in a profile shot)... still looking pretty red, raw and blistered, and only after 1 day of super-duper arm wrappings.  She's kissing her giraffe.

And then here she is from just a few minutes ago as she takes her late afternoon nap:

My phone doesn't take the best pictures but it's easier than finding my camera (when my phone is always more accessible) and messing with the memory card.  But I hope you can still see that her head is looking better.  The top portion of the left side is still the worst, with dark red, shallow blisters that are scabbing over.

And lastly, we also weighed Leah yesterday after her bath. The scale said 15 lbs 1.5 oz - but that was with her somewhat damp towel on her so minus some ounces for that and she's still well over 14 lbs.  (She was just 9 pounds and some ounces when we left the hospital in late July).  


Linda said...

I can't believe you do all of that everyday. I am so proud of you both. Leah really does look much better than the pictures from the other day. Keep up the good work and give her a big kiss from Nana. Love you guys!!!!!!!!!XOXOXO

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