Eye Update

Well we went back to the doctor at Johns Hopkins today.  Leah's eye had actually gotten better overnight!! The doctor said the tear/abrasion looked smaller and there are still no signs of infection or anything else to cause worry. 

Today was better all around since we knew what we had to do and where to go - the only worry I had going in was that they'd look and say it was worse, or infected, or start bringing up that 'admitting' word.  Yesterday our doctor called her attending physician after she looked at Leahs eye and on the phone the attending threw that word out there: as in, if it's so bad that it would need to be watched they'd want to admit Leah.  Our minds were made up already that we wouldn't let them do that anyway, but even so ...... the battle of wills would've exhausted me.  And I'm already tired since I didn't sleep so well last night.  I recall waking up somewhere around 4:30 AM doing an 'Alright!' fist pump, then I realized I was doing it because I had just woken up from a dream where Leah's eye had completely healed and it was back to normal.

Oh and we didn't have any strange/scary people in any lobbies or waiting rooms today -- just a very odd dude walking outside on the hospitals campus that asked us something that neither of us could decipher.  I guess not living, working, or going to school in Philly for almost 5 years now has caused my skill for translating crazy-street-people to fail.  I figured a safe response was: "I don't know".  Jeff said: "I'm not sure".  I was more concerned with keeping myself between the crazy dude and Leah's stroller - all the while preparing myself to throw the crazy dude down on the concrete if he made any sudden movements toward the stroller. 

Our prescription for Leah's eye ointment got all figured out.  I took the script to the pharmacy at the hospital yesterday because the doctor said they should have it, while alot of other pharmacies won't because there's a national shortage of the stuff.  Rather than waiting 90 minutes for it last night, we said we'd be back tomorrow (today) for it -- but the pharmacy called me last night to say that they're out of it.  (Leah's doctor had given us a tube from the offices stock so we knew we'd be good for a couple of days at least). So today we got a copy of our original script along with another prescription that the doctor said might be hard to find but would be more available that what our original script was for.  But anyway, when we got home I was all prepared to call countless pharmacies until I found one that carried these eye ointments.  I called out local CVS first and surprisingly, they had both of them!!

Best of all we had a nice hour-long cuddle session on the couch tonight.  I know Leah's had a crappy couple of days with her eye hurting her, and just the general commotion of running around to doctors offices; so I wanted to love on her for a bit.  I've fallen behind on my house/mommy work these past 2 days but I said to myself "Screw that crap - I'm cuddling with the baby".

So our plan for the weekend is to just keep the little girl quiet and calm so she can rest her eye, all the while smearing globs of prescription goo along her eyelashes.  Then on Monday I'll call around to wrangle up a closer doctors office that we could go to. 

Leah and I are excited for the weekend cause her Nana and Pop Pop are coming down to visit her!!!  Hopefully she'll feel well enough to open her eyes up a bit to see her visitors!   

Corneal Abrasion

So yesterday Leah's right eye started becoming a problem. It was slightly red, teary and Leah kept it closed for alot of the day.  She was snoozing and just not being as active as she usually is. She was still smiling and playing somewhat; and she had no fever or anything and was eating well. With all the rubbing she's been doing to her face I figured it wasn't outside the realm of possibility that she'd gotten to her eye and irritated it somehow. Still, we didn't know what it was: a simple scratch, something in her eye, a stye, or even a mild case of pink eye. So I was putting a warm washcloth over her eye, and trying to flush it with cool clean water and it seemed to help. However this morning we woke up to a very sore-looking eye that Leah pretty much refused to open. She drank her morning bottle with her eyes closed - something she never does. So I called our Nurse buddy at the doctors office and we took Leah over to the Pediatricians office. On the phone I spoke to the nurse about how EB babies can develop blisters on their peepers; so before we ever got there Nurse MacLeod called around to find us an Opthamoligist that we could go see; if they felt that they couldn't do anything for us at the Pediatricians office. So that's what we ended up doing: but it meant driving all the way into Baltimore to go to Johns Hopkins. Just getting there is a chore, then there was parking, walking to the building, finding out we are in the wrong building, going to the right building, checking in at security, checking in at the registration desk (where there was a very strange and slightly scary man sitting in the lobby demanding to see his eye doctor because it was an 'emergency!!'), going up to the actual doctors office, checking in again, filling out paperwork, then waiting to be seen. After all that, we got called back and the doctor put drops in Leah's eyes that illuminated her corneas, and with a special blue light, you could see exactly where the cornea was torn. And she definitely does have a corneal abrasion, a pretty significant one as well. The drops the doctor used also numbed her eyes so for about 30 minutes Leah could open her eyes, pain-free and look around. She's so stinking cute. She was such a good girl the whole day. I had eye problems myself as a kid and spent many an hour in an exam room and I hated .... HATED .... anything and everything about eye doctors, drops, people glaring into my eyes, pen lights in my eyes, making me track their stupid friggin finger, eye patches, eye charts ... you name it. Even walking into the exam room and seeing that huge thing they swing around to examine your eyes ..... it gave me the chills. And here's this kid with a torn cornea, EB, bandaged like a mummy, a trach, away from her cozy home and beloved Tigger and Pooh show - and she'll still tolerate strange drops in her eyes and strangers hovering over her with weird lights. I don't know how she does it.

So we have an antibiotic ointment to put in her eye (easier said than done) and we go back to the same office tomorrow morning so the doc can look at it again to ensure it didn't get any worse, and to make sure there's still no signs of infection. I can't imagine it'll be any better by the morning but as long as it doesn't get worse, I'll be happy.

Our new challenge, besides trying to get an ointment in a babies eye who doesn't really want your finger in her eye, is trying to keep her hand away from it. This is not the time for her to rub her eye and make matters worse. So for the night, to ensure a rub-free 12 hours before we're due back at the doctors office - we've Tubifasted her right arm to her torso so she can't really move it at all.  She's like a one-armed baby - I asked her if she was the one who killed The Fugitive's wife but she didn't get the reference. 

I feel bad about having to wrap her like that but she really is just sleeping - and her left arm is still free to move. If it works, after a day or so we can give her back her freedom, and just continue to constantly watch her to make sure she doesn't get to her face. And then when I'd have to leave her alone for a minute, to do something crazy like, pee - I'd just super-tuck her arms in with a blanket. 

Alrighty, I just wanted to give everyone an update.

 

How to Make an EB-Friendly Trach Collar

This posting is for the Roth family and their baby boy, Tripp.  Little Tripp has JEB, just like Leah.  And just like Leah, he had to have a trach placed at 5 months old. 

Here are their pages:

Caring Bridge

Courtneys Blogspot

The biggest hurdle with having a trach and EB is keeping the neck wound-free and clean ...... the collar can be a big problem. 

Now, this is just how we do it - I ain't saying it's perfect, or the 'right way' for everyone - but it's the least I can do right now to try to help them out.

Tripps trach probably won't be changed for awhile so hopefully this will give Tripps parents the chance to try to get a nice soft, padded collar ready for him.  Then again, they may already have done this, or know to do this; so this may all be moot - but when Jeff and I did this at the hospital, the staff acted like we had just split the atom.  Plus it's good for other EB families that may need to make a trach collar someday. 

So ............

you'll need the collar (obviously), some cloth tape, and a piece of PolyMem Silver, or Mepilex (Lite, Transfer, whatever).  We use PolyMem because it's softer and more absorbant than anything else - but it might be good to use this early on for Tripp to help heal whatever wounds may come up under his collar now. 

This is what it looks like, National Rehab carries it:

(Courtney: if you'd like/need; email me and I can mail some out to you)

It'll be hard to pre-size his collar without an old one to go by, but a guesstimate will work .... pre-size it and cut the excess piece off (just how the directions on the collars package say to do it):

Take a piece of cloth tape (it works the best for us) and roll it longways to create a double-sided piece and put it on the collar like so:

Take your piece of PolyMem and attach it to the tape so that a small amount of the pad sticks out beyond the edge to ensure the edge of the collar doesn't rub/chaff/irrirate the skin, then cut the pad to size, again making sure a small bit sticks out from the other side:

Repeat the process with smaller pieces of tape and smaller pieces of the padding for the ends.  Leave a teeny tiny space in between the pieces, it'll help the collar to not get bunched up when it's on his neck.  Roun the edges of the two ends, and your collar is complete:

Of course you could use 1 big piece of Transfer, or 2 equal sized pieces of whatever kind of padding you want.  We do it this way after trial and error with other methods.  This way works for us because we can coat the 2 end pieces in Nystatin powder, and those pieces sit right to the sides of Leahs trach and help absorb drool and keep the moisture level down. 

So there ya have it: how to keep an EB babies trach collar area nice and safe.  With this method we have never had any type of wound on Leah's collar area. 

And of course, Leah wants to say something to Tripp:

Hang in there buddy!! P.S. I think you're cute ; )

How to rub your face when you're not supposed to

Leah ate some sweet potatoes yesterday!  She's still only eating about 1/3 to 1/2 a jar at a sitting - but it is a new thing for her and she always follows it up with a bottle so I'm willing to give her some time before she really starts eating big girl food like a champ.

Leah had a good weekend - she stayed away from her face, for the most part.  After last nights bath we decided to try to give her a little bit of arm freedom and not wrap her quite so thickly.  That wasn't a good idea because about an hour after we did that we had to reinforce her arm wrappings and go back to what we were doing before.  She's too quick and too smart.  She knows she shouldn't be rubbing her face, but she thinks she's slick and so she'll take a book or a toy, hold it up like she's inspecting it, then covers her face from our view and rubs.  She does it right in front of me and then when I bring her arm back down and give her that 'Mommy-said-no' look, she looks back and me like "Oh no, I was just checking out this corner of the book here and uh, thought I felt something in my eyebrow ...... " ::big smile:: 

On Saturday I got to take a day-trip up to Philly!! It was so nice to get away - though I missed Leah terribly.  Even just sitting in the car by myself, listening to loud music was like a vacation.  I left the house here at 9 and got to my Dads house at 11:45 - then chilled out in Philly until 6:45ish.  Leah managed to stay awake to see me when I got home.  Since I only ever go out to the grocery store or Target, she must've thought there was a really long line at the store or something.  But it was great to get out of the house and up to good ol' PA for the day.  I'll have to do it more often. 

Here's a picture from last night - pre-thicker wrappings, with the book she likes to use as her face-rubbing accomplice:

And here are some random pictures I found in the camera's memory.  They're probably from 2 or 3 weeks ago.

"Little Red Riding Hood eh?"

"Where's the stock report page .... gotta check my Amazon stock".

"I ain't got no pants!!!"

Happy Friday!

Leah's still sleeping in her crib like a big girl!  She's such a good baby that I don't know why I ever thought she'd be fussy at having her bed changed but even so, it's an accomplishment.  Nothing from her night routine seems to have changed at all.  She still gets 2 bottles overnight from Nurse Ann, and still sleeps in until somewhere in the neighborhood of 8:30 to 9:30.   Today it was 8:30 almost exactly but she wasn't happy -- she had pooped herself.  Normally she's all smiles at just seeing me or Jeff looking at her and saying "Good Morning!!" but I guess when you wake up crapping yourself you don't want to smile at anybody. 

Here is the little greasy lady, still sleeping, pre-poop:

Leah's face is looking much better, though yet again she managed to get to it overnight while Ann was washing bottles in the kitchen.  The new damage is the red spot just above her left eye - while the bigger, less red spot above that eye is what she did the other morning when I blogged about how she had gotten to it.  We have days when even that spot on her left cheek looks better and smaller.

She likes to sleep with her feet free. 

Oh and this one is from the other night when she was in the tub/sink.  It's too cute.  I think she was just finishing up a yawn:

And Leah is doing very good with her big girl food.  She finished her jar of butternut squash over 2 days; and yesterday she ate and enjoyed carrots.  She only had about 1/3 of the jar but she definitely thought they were very yummy.  Jeff's still the only one giving her baby food, while I do the bottles.  Until she gets a taste of some different things and really gets the whole spoon = deliciousness thing down, I think we'll stick with that and then hopefully I'll be able to feed her successfully as well.  She's just such a Daddy's girl sometimes.