Planning for home

It never seemed like this day would come… when I could write a post about the real possibility of going home.  Now, this is a dangerous topic for those who know all too well how discharge planning goes.  This is no fault of the discharge planner, of course… there are just so many variables to getting home in some cases.  In ours, it’s that we have to finalize home nursing before we can leave.  We have to have at least one shift covered before they can reasonably send us on our way.  To date, this is not settled.  We have a nurse lined up and we have a company ready to roll, but that company has to verify that our nurse meets the qualifications needed for the job and our nurse has to complete some training and such before officially being assigned our case.  Once we officially have someone assigned to our case, the nursing company can finally submit the case to insurance for pre-certification.  And once we’re finally through that hoop, insurance will review the case and come back to say how many hours they will cover.  Sooo… the likelihood of all that happening before we’re supposed to go home on Thursday is pretty slim, but we’re holding out hope, of course.

Home is still a little scary for us.  As of 3pm yesterday, we were officially be done with our training – yahoo!  We’ll be meeting with the medical supply company for training on the equipment they’re sending us home with, but that shouldn’t be too strenuous.  We are sure ready to get this sweet girl home and start that next chapter in our family.  Going home is going to be much different this time, though.  Getting out of the house with all of Ellie’s stuff is quite a production – but it’s doable.  We certainly do not want to make her a hermit, but we also have to be reasonable with what is safe for her.  You see, if Brandon or I or our boys catch a cold, we bum around the house for a few days, maybe get some medicine, and we’re fine after some R&R.  If Ellie catches a cold (or gasp, the flu), we’re back in the hospital until she’s better.  What’s more, if we get close to a surgery date and Ellie gets sick, surgery is postponed for 4-6 weeks.  Eeek.  That sucks.

This was us getting Ellie portable on her vent earlier.  This is a sit & stand stroller.  The basket underneath is full, too.  As you can see, there's a lot that comes with Ellie when she moves.

So don’t be surprised if you see us and we have a plastic weather cover over Ellie’s car seat.  We have to protect her from as many coughs and sneezes as possible.  Yes, she may look like a baby in a bubble, but we don’t really have options, as far as that goes.  We won’t take her out as much as we did before, but we do want to go to church occasionally and by golly, it’d be amazing if we could see family on Easter (since Thanksgiving and Christmas were both spent in the hospital).  But know that we will still have to be extra cautious with her.  We will ask that you do not touch Ellie without clean hands… and that means we’ll always have hand sanitizer ready (and we may force it on you… sorry).  If you come to our house (we’d love to have visitors), we’ll ask that shoes come off at the door and that hand sanitizer is used immediately.  If you bring someone to our house that is sick, we may ask you to leave.  This is nothing against you… back to the whole Ellie getting sick and being admitted thing.  If you WERE sick a few days ago but are healthy now, or if someone else in your house is sick, we may just have you wear a mask in our house.  Please don’t be offended by this.  And trust us, we have LOTS of masks.  If you come to our house and see one of us in a mask… it’s probably because we feel a little under the weather ourselves. 

We will likely be more cautious of kiddos around Ellie than we were in the past.  Even if they’re not sick, they are constantly exposed to other sick kids every day.  We can’t do anything about her being exposed to her brothers, but from having kids, we know what kids’ hand hygiene looks like most of the time.  Don’t get it twisted, we squirt our own boys with hand sanitizer all the time now (they call it sanzi-tizer).  And if they get a little raspy, you can bet your but t that they’ll be masked in our house, too.  So don’t be surprised if we’re a little more reserved about kids holding or touching Ellie – we may have them wash their hands and then douse them with hand sanitizer, too.

We absolutely cannot bring Ellie into a place where other people are smoking – so if anyone smokes in your house, please know that we simply cannot go into that house with her.  We’re not judging anyone’s decision here; we’ve just been told that she absolutely cannot be exposed to second-hand smoke.  Smoking also reminds me that we will have oxygen in our house now.  We’ve never let anyone smoke in our house, but now we will not be able to have any open flames at all – so our space heater is being evicted and our candles will just collect dust for a while. 

One of my biggest obstacles will be staying on top of things being sterilized daily.  I know for some of you this is just your standard process.  Well, it’s not for me.  I’ve never been a germaphobe before and we do not use Lysol in our house.  We have cleaners, of course, but they’re natural and mild.  I was not going to have harsh chemicals in my house before.  Now, it’s a toss-up between using Lysol and accepting the possible side effects, or risking exposure to something funky because our “green” cleaners weren’t as potent as we needed them to be.  In this case, Lysol wins for us.  But it’s a change of pace for me to wipe down our bathroom and doorknobs and other surfaces with Lysol daily.  It’s a change to steam mop all of the floors daily.  I’m the kind of dork who went onto Pinterest to find cleaning tips to make this transition a little easier – don’t judge me… there are days when I spend entirely too much time on the internet.  On the other hand, a consistently clean house is kind of exciting.  For the neat freaks out there, you have no idea how panicked you become when your house is far from perfect and someone pulls in your driveway.  Ha!  Here’s hoping I do not feel that way again.

Long story short:  we hope to get home on Thursday this week.  If nursing doesn’t get squared away, it’ll be later.  Did I already tell you that Ellie’s next heart cath is March 18^th?  I’m hoping to get home for a few weeks before then.  When you come to our house or see us out, we’ll be crazy germaphobes and we’ll likely have our baby in a bubble.  But, this is our life right now and we’re just trying to do what’s in Ellie’s best interest here… I hope that does not offend you. 

Thank you again for your endless support.  We are so excited to start this new journey with our family… and it’s crazy that going home qualifies as a journey for us.  Whoda thunk, right?  Here are more recent pictures for your enjoyment.  There aren't any of the boys because we haven't been able to have them down here while we've crammed training into our last few weekends (and yes, that's killing us).

This picture shows you just how big Ellie is getting... 

and how much better her head control is these days.

Smiles for Daddy during his 24-hour stay (a test we each had to pass this past weekend showing that we could administer all meds, take care of all feedings and alarms and care for 24 hours by ourselves - we passed!)

Since Ellie has an open airway at all times, she's allowed to sleep on her belly.  This is her favorite way to sleep.  How funny, right?  It's a good thing her airway is open because those cheeks would surely cut off airflow when she's face down like this.

Nom nom fingers

We ordered Tubie Whoobies (a brand of G Tube pads) for Ellie - I just love them!

4 Part Update (because I'm slacking here)

Quick Update

Okay – I fail… it’s been 15 days since my last post… I’m sorry.  On the plus side, you can always think, “no news is good news”, right?  But now I have a lot to catch you up on, so let me unload a bit here.

First, I know I said it my last post that I was so thankful for January to be over because it was a crazy busy month.  I’m not sure why I thought February would be any different.  My work load has been better, but training and discharge planning are making us a little batty here.  We are thhiiissss close to finishing up our training.  Brandon has to do one more trach change (tomorrow) and we each need to do our 24-hour stay with Ellie.  In the 24-hour stay, we each have to be one-on-one with Ellie and do all of her trach care, G tube care, medications, feeds, etc.  You know… normal stuff you do to take care of your kid at home.  We’re allowed to use the nurses if we have an emergency, but that’s essentially like we’re home and have to call 9-1-1.  So, let’s not do that.

I had no idea that when you have a kid on a ventilator, you have to jump through so many hoops.  Your utility companies have to be alerted (because you only have 6 hours of battery life, so you can’t go long without power).  This also means we’ll be getting a generator – because we live in Ohio and we’ve had times when we’ve been out of power for days at a time.  Our emergency crews have to be alerted and will likely come out to meet us and get to know Ellie’s situation and where she usually stays in the house.  We’ve also been told that in the case of an emergency, WE are the trach experts.  The EMTs that respond will not work with her trach, which is fine… but good to know.  If Ellie ever has an instance where her trach won’t go in (which is a very real possibility), we’ll be calling 9-1-1 and riding along with her to take care of anything trach-related.  We know how to do CPR (which we both knew before), we know how to breathe for her with a bag, how to change out the trach in an emergency, and how to trouble shoot the ventilator (among other things, of course).  I don’t even know how many CPR dummies I’ve bagged in my years training others in CPR… using a medi bag (or bag valve) is so much different on a real person.  I hear that it’s also very different on a person who is breathing than one who is not… I never want to experience the later. 

Ellie has decannulated once (where her trach has come out and we had to put it back in on the fly), and we handled that alright.  She makes a horrible, wheezing sound when her trach is out – a sound unlike anything else – so at least we know that and can recognize it in the future.  I have to say that the worst thing I’ve had to do so far is reinserting her G tube.  When I popped her G tube out, I almost passed out.  And I feel like I’ve become numb to a lot of things that would have made me queasy in the past.  The g tube coming out seemed like something that would be terribly painful (there is a small balloon on the backside of the tube to keep it in her stomach, so I pulled an inflated balloon through a tiny hole in her skin – ick).  Ellie didn’t mind so much, but of all things I’ve seen here, that one about had me on the floor.  Let’s hope I don’t have to do that again, either… but I do know how to replace it if needed.

So… this going home business.  We’re supposed to be discharged next Thursday (2/26), but in order to go home, we have to have at least some nursing care arranged.  This has been a circus, to say the least, and a roller coaster with insurance and nursing companies and supply companies.  I think we’re moving in a good direction now, though, and I hope we’re able to keep our discharge date next week.  We’ll see.  I’ll make a post later about going home because there is so much that is different about this stint at home than we were used to at home before.

We’ll be back in Cincinnati in March for another heart cath (3/18), so we’ll only be home for about 2 weeks before we come back for that.  From there, the surgical plan will be in the works.  We’ll have more updates on that when we’re past the next cath. 

Bowling Benefit:

I feel like this deserves its own post, but it’s now been 10 days since the Bowling Benefit and I haven’t posted about it yet… so here goes.  On Sunday, February 8^th, there was a bowling benefit for Ellie at Westgate Lanes in Lima.  This was another instance where we were completely overwhelmed by the outpouring of love for our family.  The Lima area is not typically my stomping grounds, so I had no idea what to expect.  We walked into the alley and half of the crowd was donning Team Ellie Bug shirts.  A whole sea of blue again!  There were faces that I didn’t recognize that came out to support our bug – amazing!  There were faces that I hadn’t seen in a long time there, too, which warmed my heart.  My mother-in-law and Brandon’s aunt Sue planned this event and they did an amazing job.  There were so many other family members and friends who jumped in to help keep the event going all day.  There were 27 gift baskets filled with goodies up for raffle.  There was a 50/50 drawing for cash.  There was pizza, pop, cupcakes and of course, bowling.  I think everyone had a great time!  There was a prayer quilt for Ellie that was getting prayers tied into it during the event.  The local news showed up to interview Brandon and ran a story on Ellie on the evening news. 

About halfway through the day, we were pulled out to the welcome table because there was someone there to see us.  A group from the Western Ohio Down Syndrome Association stopped by after seeing an article in the paper about the benefit.  The one family brought their daughter, Kara, with them.  Kara is a beautiful 19-year-old girl who has Down syndrome.  She is a senior in high school this year and cheered for Perry High School for 3 years (a girl after my own heart, for sure).  She is graduating this year and wants to be a fashion designer.  She showed me her designs and shared her hugs and smiles with us.  Kara brought me to tears.  She’s a strong girl; independent, loving and warm.  Kara is driven and excited about all the opportunities ahead of her.  I just wanted to hug her forever.  I hope that Ellie grows up to be as full of life and hope and promise as Kara has.  Her dad said that they always have to give Kara challenges.  “If she’s not challenged, she’s not going to grow and we’re not doing what we need to do for her” he said.  He said he has three goals for her right now.  1 – graduate high school this year, 2 – get her driver’s license, 3 – get married so someone else can help take care of her.  Ha!  At this, Kara gave him a jab and said, “Daaadddd”.  You could just feel the love pouring out of the hearts of the people who came up to meet us and welcome us into their world.  It’s a different world, for sure, but a world full of more hope and promise than ever before. 

In total, 125 people attended the bowling event and raised over $3,400 for Team Ellie Bug.  Three generations of family were helping out during the event as well as countless friends.  I know there were people who worked behind the scenes on this and people who took the reins and made it happen.  I am thankful for each and every one of you.  I’m thankful for the businesses who donated prizes to be raffled in the beautiful baskets.  I’m thankful for each person who bowled, or sent donations, or bought cupcakes or shirts or raffle tickets.  At the end of the day, I think I only bowled 2 or 3 frames… but I spent the day giving hugs and sharing Ellie’s story and talking to people we hadn’t seen in a long time.  We felt the love from Team Ellie Bug, that’s for sure.

 Karen, Noah and Jake

 Teresa picking which baskets to put her tickets in

The Shuters representing Team Ellie Bug

The Daleys representing Team Ellie Bug 

Keykob and Mookie

These ladies were busy all day - Thank you!!

Grandma Ward helping with the basket raffle

The group from the Western Ohio Down Syndrome Association.  Kara is up front :)

The Beech family (Andrew was helping with raffles)

Check-in table... the Beech family and Braun family arriving

Signing the prayer quilt for Ellie

The kids were so happy to help with the raffle drawings

There were literally 130+ photos from this event, and I can't post them all here.  Sheryl Maier (my mother-in-law) has an album full of pictures on FB from this event.  

After bowling, we went out to eat with Sheryl and Denny, plus Brandon’s 2 aunts, his cousin and her friend.  It was nice to relax and bond with family that we didn’t get to see at all this holiday season.  We hope to be able to spend Easter with them… but we’ll see… after all, it’s Ellie’s world, we’re just taking up space in it right now.

CHD & Tubie Awareness

Last week was the awareness week for Congenital Heart Defects and Feeding Tubes… both things that are very much a part of Ellie’s world.  If you didn’t see what I posted on FB about these, check that out.  Just a few quick facts to enlighten your world:

“There are more than half a million people in the United States who have a feeding tube.  About a hundred thousand of those are children.” – Feeding Tube Awareness Foundation

In Ellie’s case, her feeding tube has saved her life.  If not for the tube, or tubes in her case, Ellie would not be able to take in the calories she needs to support her heart and lungs (that consume a ton of calories) as well as the rest of her body.  When Ellie’s been in heart failure, her body was struggling just to keep her awake some days.  She didn’t have enough energy to try to eat.  To this day, even with all the extra energy that Ellie gets (thanks to her tube), she gets exhausted very quickly.  When she eats by mouth, she is only able to eat 3-5mL at a time (less than a teaspoon).  Until I was the proud parent of a tubie, I had no idea that feeding could be a challenge… that taking food by mouth wouldn’t be an option for several months.  I was just concerned that my kids would someday be picky eaters.  I had no idea this other world existed where you get excited about the idea that maybe your child will eventually take a little food by mouth, ANY food by mouth – something that is so normal and social and part of family life.  Until your reality is different, you never know how common these issues are.  This is why it’s important to raise awareness.

Just to give you an idea of how critical feeding tubes have been for Ellie

And did you know that congenital heart defects are among the most common birth defects in the U.S.?  It’s true.  They can range from heart murmurs to very critical defects that require immediate open heart surgery on the tiniest of bodies.  There is a campaign to add pulse oximeter testing to all newborns.  This is an inexpensive, very fast test that can tell (without the obvious signs) if a baby is not oxygenating well.  It takes less than a minute.  This can help diagnose critical heart defects that were not seen on prenatal ultrasounds.  Pulse oximeters are non-invasive… Ellie wears a pulse ox 24/7 and will continue to wear one for a few years, likely.  So simple… so life-saving.  Be aware! 

Ellie’s heart defect was seen on our 18-week ultrasound.  Our obstetrician thought she had some sort of ASD (atrial septum defect), a hole between the top two chambers of her heart.  Once we were examined with a fetal echocardiogram, Ellie was diagnosed with a complete A-V Canal Defect, which means she’s missing most of the septum of her heart (making her heart 1 big chamber instead of 4) and she has just 1 valve instead of 2.  As if that wasn’t enough to rock our world, we found out in November that the right side of Ellie’s heart is entirely too small to function even if she had surgery to repair her septum.  This is called hypoplastic right heart and is a very serious defect which will result in Ellie having multiple surgeries to bypass the right side of her heart completely so that her heart works as 1 ventricle instead of 2.  Medical mumbo jumbo, I know.  But the more people know about these things, the better. 

There is nothing we did wrong to cause Ellie’s heart defects, and nothing we could have done to prevent them.  Essentially, when Ellie was about the size of a sesame seed, her heart was supposed to divide into 4 chambers and start to beat.  It skipped that first step and developed all crazy-like on its own.  It beats like a little champ, but is all kinds of busted up… I say that in the most loving way possible.  J  Thank God for good medical care and amazing (non-invasive) prenatal testing.  We welcomed Ellie into our world knowing she’d have a hard road ahead of her… but willing to dive in and give her the best treatment we could find.  Ellie’s trach and g tube were essential because of her heart defect, really.  But by golly, every stinkin’ day in this place is worth it for the smiles on that sweet baby girl’s face. 

Ellie is showing off her scar (because tough girls have scars) for CHD 

awareness week... and wearing her pretty red tutu for Valentine's Day

Thank you all for following along.  I’m sorry it took me so long to post – I’ll try to be better moving forward.  We love you all and thank you for your prayers and constant support.

Side note

Keep checking the Team Ellie Bug Events page (posted 1/9/15).  We have 2 new events in the works right now and this is where I’ll continue to post any happenings for Team Ellie Bug.  Much love!

5 months – Go Rockets!

Miss Ellie is 5 months old today.  Brandon and I have joked for the past few months that we should be taking a monthly picture of Ellie with a sign.  Almost everyone else we know does something adorable with their baby each month to post on FB:  the t-shirts that have months on them, blocks spelling out the months, a chalkboard with the baby’s age and likes/dislikes… sweet things like that.  We thought that we should take mugshots of Ellie with her hospital room number in front of her for each month.  Not funny, really – but our twisted sense of humor was satisfied.  When Ellie was a month old, she was living in Room 358 at Dayton Children’s.  At two months, she was home for a few days (whoa, right?).  At 3 months, room A6.81 at Cincinnati Children’s; 4 months, room B6.19 (CICU) in Cincinnati Children’s; and 5 months, room A3.39 in Cincinnati Children’s.  Who votes for home at 6 months?? 

All joking aside, I wanted to take this time and this post to tell you all how amazed and thankful I am for the love and support we’ve received from our communities.  We cannot begin to describe how you’ve all melted our hearts again and again.  This past weekend (on the 30^th), we were humbled beyond belief (again).  The Anna High School cheerleaders had called me several weeks ago and asked if they could do a fund raiser for Ellie and get the student body involved in the cause… all of their efforts culminating at the Anna vs. Ft. Loramie varsity basketball game on 1/30.  I agreed, of course, and was touched that these girls that I used to coach wanted to do something for our sweet bug.  I could have never prepared myself for the response that would follow.  The girls sold the Team Ellie Bug shirts… and selling they did… totaling over 300 shirts.  You have to remember that Anna is a very small community.  I graduated with 76 people in my class, so when 300 shirts are sold in a school system, that’s unbelievable!  My niece, Makayla, and her friends started a bake sale and diligently worked before and after school to sell baked goods to raise money.  I found out on Friday that the bake sale was announced during the morning and afternoon announcements broadcast to the entire school.  Village Salon and Spa (in Anna) also joined the cause and donated 10% of all sales on 1/30 to the Team Ellie Bug fund.  Donations for the Ronald McDonald House were also collected at the game.

We walked into the school and saw so many blue shirts (when our school colors and green and white).  I was instantly overwhelmed with emotion when I saw all the blue shirts.  We took the boys to the concession stand for snacks… there stood our superintendent in a Team Ellie Bug shirt.  I sat in the stands and saw the high school cheerleaders and all of the basketball players sporting shirts.  The boys warmed up in the blue shirts.  The coaches had coordinating ties.  The athletic director made special announcements giving the crowd a little background on our journey with Ellie.  So many familiar faces were wearing Ellie’s shirts in support… and so many people (mostly students) who didn’t know me at all were still standing in unity, supporting our little girl.  Talk about being overwhelmed… in the best possible way you can imagine.  Have I said enough how much I LOVE being from a small town?  How much the small town gives me hope for the rest of the world??  When I first sat through sports banquets as a coach, I was reminded of how proud I was to come from a school that still opened and closed their sports banquets in prayer.  When the girls first offered to promote Ellie’s shirts, I let them know that God is mentioned on the front of the shirts and there is scripture on the back.  Did that stop order forms from being sent home with every kid in the school system?  I’m proud – VERY PROUD – to say that order forms were delivered to each child… and over 300 shirts were purchased.  School administrators showed support… a sign bearing Ellie’s name was posted on the office doors of the elementary.  Kids from kindergarten through high school showed support and love for our baby girl.  The community came together and rallied around us.  I can’t describe this, really… it’s unthinkably awesome… and I’m still emotional thinking about it now. 

This wasn’t the end of the story, though… it was a great night for the whole community.  The varsity team pulled out a win in overtime and kept us on the edge of our seats throughout.  At halftime, the Industrial Arts team always draws a raffle for someone to attempt a 3-point shot for cash.  On Friday, that raffle winner was Isaac Bensman, a freshman at Anna who also has Down syndrome.  Isaac stood on the 3-point line and swooshed that ball right through the net.  Everyone in the stands cheered wildly for him.  What a perfect night to show everyone what can happen when a community comes together to support their own.  Isaac is a kid I’ve casually known for years and he’s instantly someone I thought of when we first got our Down syndrome diagnosis in April 2014.  I knew he was in a typical classroom with my nephews… I knew he was well rounded and loved by the entire community… I knew that he has friends and a great family… he was one of those kids I thought of and said to myself, “Ellie’s going to be okay”.  So I stood and cheered for Isaac as tears welled up in my eyes.  Victory for Anna… victory for Down syndrome… victory for faith in a small town.  Oh yeah, and at the end of the game, the cheerleaders took the floor for a chant “Did it (clap, clap) for Ellie (clap, clap)”.  Love.

This benefit for Ellie turned out so much bigger than I ever imagined… so much bigger than the current cheer coach and cheerleaders imagined, too.  Those sweet girls, along with the amazing middle school girls who sold baked goods, raised over $7,000 for Ellie.  I’m completely blown away!  And I know that it’s not just those girls.  For every parent that took time out of their busy schedules to help make baked goods for their daughter to sell… for every parent who sent their kiddos to school with a few extra dollars to buy brownies and puppy chow… for every parent that came out in a blue shirt or ordered blue shirts for your kids… for every person (parents, students, teachers alike) who took time out of their crazy schedules to pray for our family and support us in all the ways you’re supporting us… we’re endlessly grateful.  To all of the ladies (and Tony) at Village Salon who spent a busy Friday working and raising money for the fund… we thank you.  For anyone who brought donations for the Ronald McDonald House… we thank you.  We just can’t say enough how blessed you’ve all made us feel – our hearts are overflowing. 

Some pictures of #teamelliebug.  Go Rockets!!

 The high school cheerleaders after the game (with the boys and me)

The girls plus Ronnie Rocket... Kaleb wanted to dance with the rocket all night long

 Me with the 3 seniors I used to coach... I used to coach 2 other current cheerleaders, too

The boys basketball team and coaches (and fans) in Ellie Bug blue 

 This shot is really special to me.  First, the team and the cheerleaders are all wearing Team Ellie Bug shirts... but the flag in the left corner... it's the flag that the class of 2002 (yes, I'm that old) bought in memory of Jason Banks, a friend and classmate who passed away shortly after graduation.  That flag always strikes a chord in my heart.

My nephew (who is on the team and was sitting with the team and coaches) took this shot of the Ellie Bug shirts across the gym

Players and cheerleaders in blue... also, lots of blue shirts on the kids waiting to give the players fives as they're announced.  I also love that Isaac is in this picture!

My grandma Shuster supporting Team Ellie Bug.  Grandma fell a little while ago and broke her hip.  So grandma and Ellie are both going through lots of PT these days.  Nothing can take that sweet smile off her face!  I know without a doubt where Ellie gets her willpower to fight!

Valium & Viagra

These are two things I didn’t think we’d ever have in our medicine cabinet.  At least not for a very, very long time – ha!  I surely didn’t think they were things we’d be giving our baby.  But, as it turns out, these two drugs have applications that are very different from what the public perceives as their only uses. 

First, let me tell you that I’m not one of those people who prefers to medicate – ever!  We’re those crazy people who try everything BUT medicine to solve our ailments before we go to the medicine cabinet or pharmacy… that’s just how we roll.  Ellie has flipped our holistic/alternative medicine world upside down, though.  Being perfectly aligned with a belly full of organic, grass-fed yum yum and skin slathered in homemade, raw, organic butters/creams, scented with essential oils is fabulous… but it won’t repair the holes in her heart.  It won’t make up for the fact that the right side of her heart can’t function like it should or make up for some of the physiological things that come along with Down syndrome.  I just want to clarify that we’ve never been big advocates of traditional medicine… but traditional medicine is exactly what is healing our child, so we can’t hate on it, right?  I don’t want anyone to think that medicating Ellie is fun for anyone… but it’s what has to happen to keep her safe and to get her on the road to getting better.  Heck, I’ve never been a fan of surgery, either… but that’s the road we’re on here.  If this journey has taught us anything, it’s that each child and situation is unique and it’s best not to judge how other people approach feeding, diapering, medicine or treatment… every parent (okay, 99.9% of parents) is/are doing everything in their power to do what is right for their child.  Even if the means are different from what you would do, it doesn’t mean they aren’t trying their best.  The road we’re traveling with Ellie is so much different than the one we traveled with the boys, but we have been trying our best since day one with Lance, even as our methods morph from day to day.

That being said, Ellie has had a few good weeks lately.  She is still storming… in fact, she’s been storming every day since the reemergence of her storms on January 6^th.  The thing that’s frustrating at times is that when we transfer to a different unit within the hospital; we have to explain everything again and again to staff members until they get to know Ellie.  When we’ve been inpatient for 68 days already, and we have 2 to 3 different nurses every 24 hours (plus new docs, nurse practitioners, PCAs and nursing students), you can see where this can get tedious.  Fortunately, in the TCC, they have a “Primary Nursing” program.  So, we now have a primary daytime nurse who knows Ellie very well and is always on top of things – finally, some continuity of care.  We do, occasionally, get a nurse or doctor who thinks we’re crazy or who doesn’t believe the diagnosis of autonomic storming.  Ehhh… think what you will… I’m not the type to make up complications for my child… this poor kiddo has plenty of mountains to climb without me being a hypochondriac.  But I kind of want to punch people in the throat when they question the diagnosis and ask things, like, “Does she just have a dirty diaper?” or “Do you think maybe her skirt is irritating her?”.  Yep – I’ve left her in a poopy diaper and an itchy skirt for the past 4 months… how did I just now realize that?  Ha. 

Whoops – tangent… my bad.  Back to our sweet bug:  Ellie was switched from Ativan to Valium as the rescue drug for her storming episodes.  I didn’t know that Valium was used for anything other than anxiety.  Valium doesn’t work as quickly, but it’s an oral (errr… G Tube) medicine that can be easily administered at home.  The thing I like about it is that Ellie doesn’t go out with Valium.  She is still alert, but more comfortable.  Ativan was heartbreaking at times because it would often “snow” her and she’d be out for hours.  So on days when she had Ativan (which was every day), we wouldn’t be able to do as much therapy and such.  Valium is a slower acting, but better option for Ellie.  When they finally charted a pattern for her storming times (always in the morning), they started scheduling a dose of Valium to hopefully prevent the storming episodes.  Ellie, however, just decided to start storming earlier and earlier in the day so that it wasn’t yet time for Valium when she kicked off her shenanigans.  We’ve been putting her on ice to slow the storming episodes.  Valium plus ice works beautifully.  And Viagra?  Well – Ellie’s actually been on Viagra for a while now.  The generic name for Viagra is sildenafil and it’s actually a medicine used to treat pulmonary hypertension.  It’s working beautifully on Ellie right now and may be a long term medication once she’s past her next surgery.  Who knew, right?  Well – other than my nursing and pharmacy friends.  She is still on propranolol (a beta blocker used in her case to treat her storming) and clonidine (a BP med that blocks some of the neuro impulses associated with her storming) and Lasix (her original heart medication… a diuretic to treat her pulmonary over circulation).  And if you’re noticing a pattern here, you’re not crazy.  Almost all of the meds that Ellie is on are used to treat other conditions.  Yes, maybe this med is for blood pressure or this one for anxiety, but they also work to block certain neuro transmitters to calm her storms.  Oh, and this one for erectile dysfunction, yeah – it’ll help with the pressure in her pulmonary arteries.  And THIS is why prescription medications kind of freak me out.  We’re using them for their side effects, essentially.  We’re still weaning clonidine, but very, very slowly now.  I do NOT want her on this at home.  I do not want to have to worry about her starting withdrawal if we miss a dose for whatever reason.  I don’t plan on missing doses of medicine, but we all know that sometimes things happen where you forget one of the million things that you are supposed to do in a day – and I don’t want big repercussions for missing a dose of that nasty stuff.

On a very positive note, Ellie is getting stronger by the day.  She’s been working on this head control business for months now and for her, it’s a very big task.  A head is a heavy thing to control when you have low muscle tone (every time we’re working on it in PT and OT I think of the line from Jerry Maguire, “the human head weighs eight pounds”) – literally, EVERY TIME.  In the past 2 weeks, Ellie has shown remarkable improvements in head control.  This is a big step for her.  She is still not taking any food by mouth – the bottle business is just not working – but once she can sit up and support her head, we’ll be allowed to try some purees.  I can’t even begin to tell you how excited I am to try those.    I’m a little bummed that she’s forgotten how to eat by mouth, but by the way she sucks her thumb, I know she hasn’t actually lost the ability to suck, she just doesn’t have interest in bottle feeding.  Little turkey! 

And she smiles – oh, how she smiles.  She’s been able to smile for a while now, but in the past two weeks, she’s really decided to share her smiles with us more.  Last Monday (Jan. 26^th) was probably the best day that Ellie’s ever had.  She was smiling all day long.  She was pleasant and very alert.  She did well for PT and OT that day and was so happy, I almost think she’s starting to laugh a bit (but we can’t hear it, of course, because of the trach).  It was just a remarkable day for her.  She had been sick the week before and she was getting sick, storming more severely, and had a ton of secretions in her trach.  Antibiotics (again… something I really try to stay away from) worked wonders on her little body.  She was still sick for 4 or 5 days, but recovered quite well. 

Other than sneaking in snuggles and such, we’ve been swamped with work and training.  For me, January was a killer month at work.  I was so happy to log off work last Friday and put January to bed this year.  When Brandon gets here, we’re focused on training.  We spend our weekends (trying to entertain the boys) and trying to squeeze in as much trach training as possible.  We knocked out a ton of training this weekend.  The next few weekends will be packed as well, but this is what we need to do to get this sweet girl home. 

We should get to go home in another 4-5 weeks or so (hopefully sooner if we can get the home health care set up and training in sooner).  Hopefully, we can go home by the end of February (as long as we can get rolling on home health care).  Ellie is slated to have her next heart cath in mid-March.  So if things get pushed back here, we may be staying through the heart cath.  And if our prayers are answered in the manner we’d like them to be, Ellie’s next cath will show that she’s ready for her next heart surgery.  Sooooo, that would extend our stay by a week or two.  I guess what I’m saying is maybe we’ll be home this month… maybe next month… maybe April.  We really have no way of knowing.  We’ll try to get out this month so that we can come back for the cath, but there are a lot of factors that play into that planning.  When we go home, we’ll have a minimum of 8 hours of nursing care, 7 days a week.  We’ll likely have more like 12 or 16 hours a day.  As you can imagine, this will take some serious coordination to get back into a routine at home.  If we end up hanging out here until the first week of March or so, I may see if we can move up the heart cath so that we aren’t going home for 4 days and trying to coordinate nursing care and then coming right back.  But hey… it’s Ellie’s world, I’m just living in it.  We’ll do whatever is best for her.  At this point, home seems kind of scary, really… even though we can’t wait to be back.

I have so much to say about our past weekend, but I’ll devote a blog post to it – hopefully tomorrow.  For now, I’ll let you catch up on our past 2.5 weeks in pictures… did I mention that Ellie will be 5 months old tomorrow?

 Ellie in a gown awaiting her heart cath on 1/16

Not yet awake after the cath... but had GREAT results!

 My sisters (Emily, Tracy & Karen) abducted me on Friday, 1/16 

so we could do a wine and canvas night in Newport

Karen & I hard at work 

 Mom & Dad stopped by on Saturday 1/17 to drop off the boys and see Ellie in the TCC

 Big eyes for Aunt Tracy

Grandma & Grandpa Maier came down to snuggle with Ellie & celebrate Lance's bday

 Out to dinner for Lance's 4th bday

He's not happy at all, is he?

 Ellie likes to flirt with her new PT, Sam.

 Who is that beautiful girl in the mirror?

 The boys back home

 When they came down to the RMH on 1/23, we had their tent set up on the bed... 

they got to go "camping" all weekend

 And on Saturday, 1/24, it was beautiful out - perfect day for the zoo

Selfie w/ Mommy - 1/28 (another nose trial window) 

 Face painting at the RMH - he's supposed to be Capt. America... rough, I know

 Ellie gave smiles to Andrew Beech when he came to visit

Lovin' the mirror again

Kaleb's face paint... quite impressed with this Raphael

Now that Ellie is allowed to lay on her belly (sternal precautions are almost up), she loves sleeping this way... and it's perfectly safe because her airway is always open.

My favorite picture - the boys giving Ellie a check-up on 2/1