Life as a Leach

I've never seen Abby's full head and neck. Ever. She was taken from us immediately after her birth to the room across the hall, where they attempted to intubate her before putting a trumpet into her nose.  My first glimpse of my daughter was so filled with tape and neon orange plastic that I honestly had no image of her in my mind.  In fact, when I went down to the NICU for the first time, I'm ashamed to say that I didn't know which tiny baby in the incubator was mine.   I peered from face to face, but none of them looked like mine. The nurse practitioner had to bring me to my baby. Imagine how that felt, to not know who your daughter was. After the trumpet came the trach.  I could finally see a little more of her face with some of the tape gone.  (She still had a feeding tube through her nose at this point, so there was some tape there.)  But there has always been something  there that is not really supposed to be there. So, while I can cert...

Our ENT called this morning, and Abby is officially going to get her trach out!!!!!!!!!  What's even better is that she is scheduled for SEPTEMBER 6TH...just 2 1/2 weeks away!!!!!!!!! I quickly called Matt with the news, and we shared some tears and blubbering.  Then I listened to "Our God" three or four times in a row and blubbered a little more.  Tonight, we both blubbered through singing "Our God" at Caleb and Abby's bedtime. I know we say it all of the time, but we are so thankful for all of the miracles that God has performed in Abby's life.  What an amazing story we have to tell, and what an easy  way to share about Christ! Our God is greater, our God is stronger, God You are higher than any other.  Our God is healer, awesome in power.  Our God!  Our God! And if our God is for us, then who could ever stop us?

They're all good, too!!  :) Warning:  This is a VERY long post with no pictures.   Sorry :*( 1.  Abby went to ENT on Tuesday for a follow-up now that she has been off of the vent for a month.  He put a cap on her trach so that she would be forced to breathe out of her mouth and nose.  We're building up tolerance, but she does great with it and doesn't seem to notice any changes at all.  Right now, we're following guidelines to cap her 3x a day and increase by 15 minutes each day.  By the time we come back from vacation, Abby should be capped pretty much all day!!!  I will call while we're on vacation to schedule a sleep study.  If that looks grrrrrreat, our ENT will check her airway under anesthesia one more time, admit her to the PICU, then take the trach out!!!  She'll stay inpatient for a few days under observation, but for awesome reasons!  If the sleep study doesn't look so wonderful, then we will move forward with...

Abby had her pulmonology appointment today, and it was full of nothing but good news and praise for how well she is doing!!  Our doctor feels like she is definitely ready to go into MWPH for a few days to be taken off of the vent once and for all!! The way it will work is that she will come in, sleep at MWPH for two days off of the vent while being monitored, then do a sleep study off of the vent on the third day.  The reasoning behind this is that sometimes kids get worn out by the third day and start having issues.  If her sleep study is good, we'll be going home, SANS VENT!!! (Well, we will still have the vent for a while, just in case.  But it will sit in the closet and will not be used!!) Since we are a "voluntary admission," (don't quite get that, since we have to go, but whatever) Abby could get bumped if a more serious case comes up.  That's perfectly understandable.  If everything works out, we'll be going on/around June 18th...as in, a week ...

Sorry I've been delayed in telling you the results of Abby's surgery.  I worked all day Friday and spent Friday night cleaning up after being away from the house for two days!  So, here are the results: *  The airway looks good, and it is growing....sloooooowly.  It's just really little.  But, there was no granuloma or scar tissue to take out, so that is good news. *  The right ear was draining again (after just a few days off of drops), so he took her right tube out and cultured the drainage.  Since something is obviously wrong, he is hoping to figure out what the infection is and treat it once and for all.  The left tube still looked good, so he left it.  While not having a tube could affect her hearing in her right ear, we're hoping that she will be able to compensate with her left until we can give the right some time to heal. *  Dr. T. manually pulled her jaw forward (Ouch!  Glad she was under!) and saw that it gave Abby'...

In honor of Tracheostomy Awareness Week , I have written a little list of some "givens" if you're a trach mom.  Enjoy! You might be a trach mom if... *  You have ever looked into a trach tube to check for a plug and got secretions shot at you. *  You can change trach ties while talking on the phone, holding the trach in with one hand, entertaining your trach child, and disciplining your other child all at the same time. *  Your child and family have ever been stared at, pointed out, gaped at, or flat out laughed at...and are stronger for it. *  You take your child to OT, PT, and Speech every week...and are the OT, PT, and Speech teacher the rest of the week! *  You require everyone who walks into your house to wash their hands before touching your child. *  You have ever been asked to leave a public place because the suctioning is too noisy or is disturbing other patrons. *  Your supply company knows who you are by your voice. ...

I haven't had a chance to post anything about Tracheostomy Week yet, but here is a video that was created for it.  I LOVE it! Just remember, kids with trachs want friends, want to laugh, want to feel success, and most importantly--want to be loved.  It's just a different way to breathe, people!  It's not that big of a deal!  :) Global Tracheostomy Tube Awareness Week 2012 More PowerPoint presentations from Anita Birk

My sweet niece is a nurse-in-training!  She is always very interested in how Abby's machines work and the things we do to take care of her.  The other night while we were on vacation, I allowed her to suction Abby with me for the very first time!  (With a lot of help and supervision, of course!!!)   She has her own trach baby doll, so she practices suctioning and changing the trach on her.  She's quite a little nurse-in-training, and I wouldn't be surprised at all to see her grow up to be a nurse or a doctor one day!  

"You look tired," says the unassuming clerk at the grocery store to the mom with two kids.  One, a bouncy little girl with golden curls, rides in the car in front of the cart while the other, a boy of maybe two, stares blankly into space in the front basket, supported by the blankets on either side of him.  His tongue escapes his mouth a bit and there is a little drip of drool on his chin.  A plastic tube protrudes from his neck, and he makes a noisy sound each time he breathes. "Tired?" the young mom shakes her head and chuckles.  "Yes, I suppose I am tired.  I'm tired of my son's life having to be so hard.  I'm tired of every achievement finally coming only after months of therapy and exercise.  I'm tired of the looks that other people give the son that I love so much.  I'm tired of the stares I can feel even when I'm not looking.  I'm tired of the rude and insensitve comments people make.  I'm tired of...

Whenever Sara is here, she loves to play doctor with Caleb's real medical equipment!  They have it all:  suction catheters, a feeding bag, syringes, gloves, masks, etc.  You know, all the usual stuff a kid needs to play doctor, right?! Sara is feeding the baby, Ab, through her gtube.  We put water in the feeding bag and run it through.  Caleb wants a feeding pump for Christmas.  :) Sara knows how to suction Ab and reminds herself to only go down 4 cm everytime she does it.  Suctioning the trach Listening to Ab's heart and lungs with a real stethescope. Ab survived the examination!  (What?  Don't your baby dolls have a trach and gtube??)

Abby had a fabulous appointment today!  We won't be going into the hospital right away to do the weaning, but she will be weaning off of the vent starting tomorrow.  We'll be doing it from home slowly! Starting tomorrow (when our equipment company comes out to change it, since we are not allowed to), Abby's breath rate on the vent will change from 14 to 12 breaths per minute.  This rate will continue to go down by 2 every two weeks (or more if Abby does really well!) The other (and more exciting, in my mind) part of the weaning is that we will be taking Abby completely off of the vent for short amounts of time 4x a day.  We're supposed to start with just a minute or two (depending on what she can handle) and then work our way up until she is doing about 5 minutes this time next week.  We'll talk to pulminology on a weekly basis to report on how she's doing, and they will continue to give us orders to increase the amount of time she's off.  ...

This little guy isn't an alarm, but it does have a pretty important job.  This is our suction machine, and it suctions the junk out of Abby's trach, nose, and mouth.  We have two because we need one to take with us when we go places and one to be stationary. Without getting into too much of the gross details, the suction machine manually does for Abby what you do when you cough.  We usually suction the trach between 6-8 times a day (more if she's sick).  Although we could suction her nose all day long if we wanted to, we try to just use a tissue as much as possible and save the nose-sucking for when absolutely necessary.  (Think how much your kids love/loved the nasal aspirator, and times that by 50.  That's how much Abby "loves" getting her nose sucked!) What she does truly love, though, is getting her mouth sucked!  Now that she's putting toys in her mouth, she's creating a lot more saliva.  Sometimes she can swallow it, but sometimes...

The pulse oximeter (ox-im-eat-er), lovingly referred to as the pulse ox, is another important little machine in our lives these days.  It measures the amount of oxygen Abby is getting, and the higher, the better!  We want 100%, or as close to it as we can get.  It alarms at 94%, but she usually isn't any lower than 98%.  It also measures her heart rate, which alarms if it drops below 80 or goes higher than 200.  Neither of these happen very often at all, so we're mostly concerned with her oxygen levels. The probe is attached to a band-aid kind of a thing that wraps around the foot or hand.  We just do the foot because she moves her hands too much to get a good read.  In those scary early days in the NICU, the pulse ox didn't even alarm until 82% because Abby's baseline was in the mid to upper 80s (yeah, I know---not so hot!)  When the percentage drops down below the alarm parameter, it's called a desat.   This is short for...

We have a couple of monitors that are used to alarm us if there is problem with Abby's breathing.  One of them is the apnea monitor.  This is different than a sleep apnea machine some of you might have.  It's just an alarm that lets us know if she's apneac.  Sleep apnea is when you stop breathing while you are sleeping. Your brain forgets to breathe because you're so asleep.  Abby had this a lot when she was younger, and was given caffeine to help her body stay awake enough to remember to breathe.  Yep, caffeine!  It was a 15 minute IV drip, so we called it her coffee break.  :)  She hasn't had any true apneac episodes since she was released from the hospital, but the doctors are reluctant to remove her from the monitor just yet.  Abby's alarm goes off after 20 seconds without a breath.  The sensor detects movement and gets concerned when it doesn't sense any.  The alarm is ridiculously LOUD, which is understandable...aft...

I figured I'd do a little mini-series on some of the machines we use for Abby.  I don't feel like I need to say that this shouldn't take the place of real medical advice, but I'm going to just in case.   *ahem* Don't worry--this isn't meant to bore you or douse you with  medical jargon.  I just wanted to give you a glimpse into our everyday adventures with Abby! So, first off, I figured I'd share about the ventilator. This little LTV 950 is truly a lifesaver!  Because Abby typically breathes "over the vent" (on her own) instead of "riding the vent" (relying on it to breathe for her), it's main purpose is not for regular breathing, per se.  The hard part for Abby is taking deep breaths.  So by having a special control called the PEEP set to 5, the vent pushes some air into her lungs so that she keeps it in there even when she exhales.  Think of it as putting a little prep air in the balloon before you fully inflate it.   (FYI:...

My mom ordered this book about a month ago: It wasn't cheap, but it is helpful to those without a lot of knowledge of trach care.  To make it more meaningful, I read the entire thing cover to cover and wrote notes in it to make it more specific to Abby's care.  Naturally, not everything in there pertains to her so I wanted to add my two cents as well.  It's now being passed around my family so that they can read it and get some information about basic trach care.  I like how clearly and simply everything is written.  There's a glossary in the back for medical terminology and most cares (trach ties, trach changes, suctioning, etc.) have step-by-step instructions.  Not that you should have to have the instructions near by as you're doing them (at least not on my child!), but it does give people a good reference!   The hospitals we've been to have asked to use my blog as a resource for families who might be embarking on a similar journey of t...

A Challenge So by now, you have heard me rave about the Ronald McDonald House. Let me just explain that it is more than a nice house with fun activities for the kids. We have met so many wonderful people who are all dealing with major medical problems. It is so nice to be able to share stories and know that people understand the jumble of emotions we are feeling. They all have the same wishes for their kids that we do. We are also so thankful for the staff who just genuinely show caring. I can't tell you how many times staff members have stopped us to ask how Abby was doing today. It is never in a oh, I need to ask kind of a way--these people truly care about the families that are staying there. It's evident by the way they interact with the kids. It's obvious when they great returning families who have been gone for a while. The volunteer network that RMH has is so awesome! Groups come in to prepare meals (not every breakfast and dinner, but frequently) and cr...

Meet Abby We are ready to introduce you to our beautiful girl, Abigail Elizabeth Joy Leach! There are some pictures in the photo album for you to enjoy. :) FYI: The orange tube in her nose is her trumpet, which helps her breathe and keeps her tongue out of the way. The orange tube in her mouth is her feeding tube, and the black cord in her mouth is a safety feature in case she has real trouble breathing. There's the tour. :) Sign My Guestbook Read Tributes Wednesday, October 27, 2010 5:50 PM, EDT Roller Coaster Ride Abby had a pretty good morning today. Matt and I stepped out while the doctors were rounding on the other patients and went to the waiting room for a while. I walked back to her room to deliver some milk before we went to get some lunch, and was hit with some news: "We're heading to the OR. Abby needs to be intubated." I ran to get Matt, who was in the waiting room, and we heard the whole report. After we left, Abby really star...