August in the DYT

So this month is almost over… and I think this is the fastest month I’ve ever lived.  Geesh, where are my days going?  We started this month off with a wedding for friends and a beautiful weekend.  Towards the start of the first week, Ellie was pretty under the weather.  She was coming down with something, for sure.  On Monday, the 3^rd, she wasn’t really tolerating her speaking valve for very long.  On Tuesday, she wasn’t tolerating it at all and seemed exhausted all of the time.  On Wednesday, her heart rate and breathing rate were quite elevated.  Our normal pediatrician said that we needed to go to Children’s and see one of our specialists there.  Since we were in the process of moving pulmonology from Cincinnati to Dayton, we hadn’t established care yet, so we called cardiology to see her.  Dr. Luby said that Ellie looks perfect from a cardiac standpoint (hallelujah), but wanted us in the pulmonology (pulm) clinic immediately.  By the time we were home from clinic, Ellie was working so hard to breathe that we put her right on the ventilator… instead of waiting for bedtime.  We took an 8:30am appointment on Thursday.  

By Tuesday morning, Ellie was struggling for each breath, even on the ventilator.  We weren’t in the pulm clinic for more than a few minutes before the pulmonologist said, “you’re not going home with her”.  So, Ellie was admitted to the PICU in Dayton and they started some “big gun” antibiotics.  She was on IV vancomycin right away, which she had a Red Man’s Syndrome reaction to.  Slowing down the infusion rate made that better.  When cultures came back, we found that Ellie was growing three different bugs in her trach secretions (psuedomonas, h flu, and serratia).  Gross.  She was put on a 2^nd IV antibiotic (zosyn).  We spent six days in the PICU recovering from these monsters in her trachea before she could go home.  Poor buggles.  While we were admitted, we were referred to a new supply company that would cover all trach/vent/g tube supplies in one stop.  This might not sound like a big deal to you… but let me tell you, in the world of medical supplies… a 1-stop-shop is unheard of.  It’s actually cause for celebration.  So I got the ball rolling to transition our care to this new (to us) company.  I also tried to get Ellie’s prescriptions at discharge from the hospital pharmacy… only to find out our insurance denied the prescription because Ellie doesn’t have cystic fibrosis.  This was one of those times when I wanted to scream into the phone.  I know this medicine is expensive (like, $8,000 a month), but our pulmonologist told us that this (inhaled aerosol) med would be key to keeping these same bacteria from growing in her trach again (she’d had the same major one grow before in Cincinnati).  If we can keep her healthy at home... we don't have to spend time in the PICU... spending time in the PICU costs much more than $8000.  I also found out that this new supply company that we were excited about, wasn’t an “in network” provider and we weren’t going to be able to use them.  Ugh.  I had to go all momma bear on the phone and via email to a few people before we got it all worked out.  Two days later, Ellie got the medicine that will keep pseudomonas at bay and I got the supply company that I desperately wanted to use.  Momma bear works… errrr… at least finds out the avenues that work to get what you need.

So we went home on August 11^th and started settling back into our home routine.  Kaleb was supposed to have his birthday party on the 8^th, but we had to move it back a weekend.  I bummed pretty hard about this.  We spent Thanksgiving and Christmas in the hospital… and Lance’s birthday… I was really hoping that after Boston, we could start spending celebratory days at home.  Poor Kaleb.  He didn’t mind.  I took him to a local splash park and let the boys play on the playground at the hospital.  That night, Mamaw and Papaw Maier came down and went to Chuck E Cheese’s with us, and he was allowed to open his gift from us (a remote control car) and drive it around Ellie’s PICU room.  So it worked out alright for Kaleb.  We held his birthday party on August 14^th and he loved his Pancakes & Pajamas theme.

Red Man's Syndrome - reaction to vancomycin... it's not too visible here

Rae came to play

 Ellie's 1st selfie.  

I was letting her watch herself eat... and she leaned forward to took this picture.

Pretty smiles

The boys at the hospital playground

Motorcycle with Daddy and Chuck E. Cheese's

Gaming

Pizza

We’ve been working with the boys, trying to get them ready for school – continually amazed by how quickly kids learn things.  Kaleb is working on colors right now, he knows his alphabet… but can’t always pick out the letters (he JUST turned 3, so I think we’re just fine there).  He’s talking more and more now… and he has the most adorable little speech impediments.  I’m sure he’ll grow out of these, and fortunately, they’re going to a school with plenty of speech therapists on hand if they think he needs help.  He replaces Rs with Ws and Cs with Ts.  He calls Lance, “Yance” and says, “I Yove You, Mommy”.  Oh, it melts me.  Sometimes, he’s a little hard to understand… but again, he’s three.  Earlier this summer, we were headed back from a festival and walking back to my in-laws’ house when Kaleb said, “Mom, a walk in my shoe.”  I said, “Yep, you’re walking in your shoes… big guy, Kaleb.”  Later, he said, “Walk in my shoe”.  Again… same response from me… he seemed happy enough, I thought he was proud to be walking along the road like a big kid with me.  After a few more blocks, he bent down and cried, “Mom, there’s a wock in my shoe”.  Awww, man, a ROCK in his shoe.  Mommy fails.  I picked that pebble out and carried him for a while, feeling pretty rotten that I’d just encouraged him to keep walking on a rock this whole time.  Good grief, he’s cute.

And Lance… oh, Lance.  He has energy for days.  He functions well on a schedule, but whew, if you give that kid wiggle room and throw him off of that schedule, you’re in for it.  He has plenty of sass to go with that energy and it can be exhausting.  But he’s a smart little guy.  Seriously smart.  Last weekend he said, “Mom, do you know what incognito means?”.  “Uhhh… yeah, do you?”  “Yep, it means ‘in costume’, right?”  “Sure does, Lance… sure does.”  I think he might be the only kid in his class that uses words like gargantuan and incognito… but hey… whatevs.  He’s starting to read.  This blows my mind.  I didn’t teach him… I kind of feel bad about that, but it’s the truth.  In fact, the thought of teaching a kid how to read just seems insurmountable to me… but he’s doing it.  Honestly, I credit the learning apps I let him play with.  Those are also where he learns these big words.  He doesn’t read big words, but as we drive, he now asks things like, “Mommy, what does S-P-O-T spell?”  Then we sound it out and after a few seconds, he’ll say “S-P-O-T, spot”.  Or he says, “How do you spell iguana, Mom?”  And we sound it out… well, except that u after the g thing… that’s tricky.  He’s also learning to tell time, but the clock in our living room has roman numerals… cause we like to throw curve balls at our children as they try to learn, right?  But the boys are doing well.  They started school list week, which I’ll go into later in this chapter of a post.

We were back into the swing of things, getting super excited about this week… when the boys would start school… but on Sunday morning, Ellie broke out in a sudden rash right before church.  David, our nurse on Sunday, kept a close eye on her and we made sure we had all of our emergency equipment with us as we headed to church.  Ellie was still happy and alert, but the rash was totally unexplained.  When it didn’t subside by the time we were home from church, I started eliminating things.  We gave her another bath and got her a fresh change of clothes.  We changed out her blanket and I threw away the new formula bag and threw out the jar of formula I’d made for the whole day to make a new batch.  I had no idea what would be causing this rash, but it was all over her body and it was HOT!  She was pretty miserable all day, so we did our best to keep her comfortable.  It was still very present Sunday night when our overnight nurse came in.  I asked her to keep an eye on it and give her Tylenol if she seemed especially uncomfortable.  Thank GOD for nurses… really… I can never say that enough.

Danelle (our night nurse) knocked on my door super early Monday morning and said, “I’m going to call the on-call nurse to see what we need to do with Ellie.  Her color is changing and we need to call”.  I said, “alright”, but laid back in bed.  I hadn’t slept well at all and was trying to get a few more minutes of sleep.  Brandon was up and came back into our room and said, “You need to take Ellie to the ER.”  What??  I didn’t want to do that on Monday morning.  First, I had soooo much to catch up on with work… and it was “meet the teacher day” at preschool for the boys.  I went out to look at Ellie and talk to Danelle.  By this time, Ellie was starting to have minor seizures (is that an oxymoron?  Is there such a thing as a minor seizure?)  Her lips and hands and feet were gray.  Her capillary refill on her hands and feet was incredibly slow.  I called my mom in tears to ask her to come stay with my boys.  Brandon was headed to school and I was going to Dayton with our day shift nurse.  Oi!  

Mom showed up and Rae came in.  Rae and Danelle were buzzing around Ellie exchanging notes as they handed off the shift and checking Ellie over.  The rash was red and hot and her blood pressure was dangerously low.  Her arms and legs were ice cold.  This time, I packed a bag for Ellie and I and left the boys with mom.  We did not take Ellie off of the ventilator this morning (like we usually do), because… let’s be honest… we were already in the midst of an allergic reaction, let’s make sure we have a way to force air into her lungs if her airway closes off, right?

I cried several times that morning.  Not just because I was scared for Ellie… we’d been through so much with her that very few things rattle my bones anymore.  I cried because this was an exciting day for our boys.  Both of them had already sacrificed their birthdays when their sister was admitted and had not one complaint about it.  Today was an exciting day for them and I wouldn’t be there.  I cried because they would start school the next day… and I wanted to do all of that with them.  I knew my mom would be amazing and take them to meet their teachers… but that was something I was looking forward to.  I was having a pity party, for sure.  I hate those.

We didn’t even sit down in the waiting room of the ER, we were brought back to a room right away.  A thousand tests happened… I wanted to scream when they (again) didn’t believe me when I said that my daughter is an incredibly hard stick… and shed a few tears as they finally hit a vein on their third try - Ellie screaming in pain as I held her down on that bed.  Poor bug, bug.  By this time, Ellie had a fever and was really uncomfortable.  I asked for Benadryl to ease the pain of the rash.  Soon after, the doctor came in to say that Ellie’s blood counts were a little wonky, white blood cell (wbc) count was low and between that and the fever and the rash, they wanted to admit us to make sure there wasn’t something more going on.  She wasn't seizing in the ER... the seizures at home were febrile seizures... brought on by the fever.  It didn't make them any less scary.  We were admitted mid-afternoon.

This rash covered her body.

The first day was pretty standard… lots of test, few answers.  They said her reaction surely looked like a drug reaction, but was idiopathic (not a known cause).  But since Kaleb is super allergic to Bactrim, it was likely that this was a delayed reaction to that (Bactrim was the oral antibiotic she was placed on at discharge earlier this month… Sunday had been day 12 of a 14-day course).  The next morning, though... had me a ball of nerves.  In rounds, they talked about how Ellie’s blood counts still didn’t make sense.  Her wbc count dropped again, but her banded cells dropped, too… which could indicate a virus but was unlikely with an infection.  It COULD be related to the reaction she’d been having to the Bactrim.  The fevers she’d spiked COULD be related to the reaction to Bactrim as well.  But both of these things were possible, but unlikely.  They wanted to make sure that they covered all bases before they sent us home assuming that it was one thing and not another.  Have I ever told you how much I HATE antibiotics?  But with Ellie… she’s so susceptible to things that we follow orders.  Anyhow, in rounds, they said that those wbc counts had dropped along with the banded cells.  They said that her inflammatory markers were alarmingly high.  They needed to rule out endocarditis (gasp!) and they weren’t sure why her sodium levels were dropping, too.  They would wait for cultures to come back (blood, lukens, urine, stool).  In the meantime, they would check for strep (which was negative) and consult the infectious disease team.  If the infectious disease team couldn’t find solutions, they’d consult the hem/onc team.  

Hold up… this is where my heart hit my stomach.  Hem/onc?  For those of you not familiar with this jargon… this stands for hematology (blood disorders) and oncology (cancer).  Now, I’ve done my research… it’s always in the back of my mind… but oncology has never been thrown around in our world before.  I know that because Ellie has Down syndrome, her chances of getting leukemia are astronomically greater than my chances… I know this.  However, I told Brandon a long time ago that I’ve watched too many of our friends stand by their children through chemo and I never want to add an oncologist to the massive lists of specialists we need to see.  I am not as equipped as those moms are.  Was I putting the cart before the horse?  Yes.  Was I freaking out?  Yes.  But here’s how I deal, folks, and I think it’s served as a great system so far:  I take what we’re given (possible heart defect, possible chromosomal defect, possible neurological condition, the list goes on) and I prepare myself for that news.  I spend a few hours (maybe a day or so) preparing myself for the worst news on the spectrum in front of me.  I let my mind work through that and cry it out.  I let my inner most being pour out that feeling.  Then… any news less than what I’d imagine is cause for celebration.  Even if what I imagined is true (and so far, that’s kind of been the trend), I can process that news as it comes.  It’s weird, yes… but it’s worked for me so far. 

I had to leave the hospital soon after rounds.  I was handing off the stay to my mom so that I could get home and get my boys ready for their big day.  The drive home was my time to pour it out.  I blared me some Jesus music, let it speak to my soul, and cried an ugly cry as I squeezed and pounded on my steering wheel.  [I’m pretty sure those things are designed for abuse!]  Brandon called me and I could barely answer.  He was not impressed with my crying session.  But he knows… this is how I deal.  He told me, through his own tears, that I needed to pull it together before I got home because it was a good day, a happy day, for those little boys.  I knew this.  That’s why I had to get it all out then.  I continued my drive, probably scaring the living daylights out of fellow drivers with my meltdown, but felt much better by the time I was home.  I was able to scoop those boys up, take some cute pics, and drop them off at school.  I’m sure I looked like a hot mess at drop off, but it wasn’t about me.  Those little boys couldn’t have been more excited, and I wasn’t about to show them what a busted up mess their momma was. 

Later in the day, we found out that Ellie’s stool culture came back positive for C diff.  Gross.  And later that night, her white cell count rebounded some.  So we were hopeful that everything was back to good.  This morning, her white count had dropped again, so we ARE bringing in the hem/onc team today… the doc assured me that he wanted them to make sense of the bouncing counts and do a manual differential first.  So I'm swallowing that and holding on to the hope that we stop there.  We’re under contact precautions (which Brandon is all about with his new-found nursing knowledge… it’s kind of adorable… kind of annoying.  Ha!).  Ain’t nobody got time for C diff, c’mon now.  Her trach culture, urine culture, and blood culture are still clear right now… waiting it out on IV antibiotics right now.  And waiting to see what the other team comes up with.

Thanks for letting me virtually cry on your shoulder today.  Like I said, this blogging business is the best therapy around, y’all.  And as a reminder, we are still planning a trip down to the Ronald McDonald House of Cincinnati on Saturday, September 5^th to serve brunch in celebration of Ellie’s birthday.  It’s just around the corner.  If you were interested in donating toys or other gifts for those kids (or a financial gift to the house), please let me know soon.  We’ll be bringing those down with us on the 5^th.  I can’t wait to show you all the pictures of Ellie on her bday… and in her adorable little birthday outfit… eeek!  I’ll keep you posted if anything wonky happens here… but pray for no surprises, please.  Thank you for following along!  Here are more pics for ya:

This is her new therapy chair... she looks so big in it!

Kaleb's Pancake Friday party

Playground selfie... she's eating her carrier, yes.

Happy girl

Grandma and Aunt Corrine came for a visit

Tubie problems:  This is what happens when she plays with her gtube extension so much that it comes undone... then she swings it around like a lasso spewing formula everywhere!  Nice, Ellie... NICE.

And this is what a G tube looks like after you pull it out.  Ick.  That skinny part in the middle... yeah, that's what goes through her stoma.  That balloon on the end, yep... I pulled that through her tiny stoma.  Another mommy fail!

Bendy girl... yep, those little green socks are her feet... by her cheeks... and she's comfortable.

Best friends meet... finally!  Ellie got to meet Abby... celebrations!