We Need Negative

Early one morning last week Eli had a temperature of 100.6.  He was seen by our family doc later that morning and of course by then his temperature was normal!  The exam was normal and Eli was acting better so we just chalked it up to a short lived viral issue.  He went home, played, ate, etc in his normal fashion.  Until Thursday evening.  I thought he felt warm when he got up from his nap.  Since he had just been asleep under a blanket I waited to take his temp.  When I did take it, it was over 100.  I waited another hour and it had jumped to 101.5.

Because of his severe history with staph aureus, we have orders to get blood cultures drawn on Eli if he a) has any temperatures over 101 or b) prior to any antibiotic administration for any other illness such as ear infection or strep throat.  Our fear is not the fever itself.  It's actually nice to know that his body reacts normally and can fight infection.  The temperatures he had weren't that high either.  Normally (as a mom and a nurse) I don't treat most temperatures unless they're over 101.  Our fear with Eli having a fever is wondering what caused it?  When he had his fourth heart surgery to remove infected hardware, the surgeon was unable to remove one of the leads from Eli's pacemaker.  Some of those other leads tested positive for staph aureus.  Since then, we've lived in fear of a recurrence of staph.  If a total of twenty weeks' of antibiotic therapy in the last year haven't gotten rid of it, what will? 

So, off to the hospital we went.  Eli was again a brave little boy who had to get stuck not once but twice for blood cultures.  Two samples have to be drawn from separate sites so we can ensure one positive result isn't due to a contaminate.  This time, in addition to the blood draws he also had nasal swabs done (yes, two again) to test for a variety of viral ailments.  He tolerated both of these things very well.  There were lots of tears but he didn't fight.  That's what bothers me the most; no three year old should be so used to needles, blood draws, and swabs that he doesn't put up a physical fight.  After he was done and collected his prizes from the toy box we came home. 

We were finally able to give him some Tylenol to help bring down his fever which was hovering above 101.  He requested popcorn and even though it was waaayyy past bedtime, the four of us snuggled in bed as we watched the Reds and ate popcorn.  Eventually he fell asleep in our bed.  Bryan and Zachary slept downstairs and I stayed with Eli.  Dr. Amy wanted to examine him in he office in the morning and I thought I'd stay up and start packing in case we were looking at an admission in the near future.  But I didn't.  Instead I stared at him a lot.  I slept some.  And I prayed a lot.  How many parents can say they've begged God for their children to be diagnosed with an ear infection?  Or strep throat?  Or even pneumonia?  Yes, those things are still dangerous for Eli because of his heart condition, but not as dangerous as a recurrence of staph could be. 

Eli still had some fever through the night but by mid morning when we were at Dr. Amy's his temperature was normal.  She didn't have any results from his tests drawn the night before as those take 48 hours to complete.  Her exam did show that Eli's right eardrum was red and puffy.  That was a relief to hear.  A partial relief anyway.  We still won't rest easy until we hear that his blood cultures come back negative.  They have to come back negative. 

We're not ready to be so serious again.  Eli's strokes were only four months ago.  We've only been home from the hospital for two months.  Zachary just finished kindergarten one week ago.  Eli and I missed half of Zachary's kindergarten year because of being in the hospital.  Wednesday we were making a list of things to do this summer.  We're just starting to have fun.  Just hours before Eli's fever started Thursday, Bryan finalized plans for our summer vacation.  Eli's first real family vacation ever.  These are the issues that our family will always face.  Even when things are going well, we can never rest easy.  Congenital heart defects complicate every detail of our lives. 

Since Eli's ear did show some reason for concern, he was started on an antibiotic.  He took a good nap and had some playtime with Zachary.  Zachary had a baseball game tonight.  Eli knew Z had a game and started getting ready right along with his big brother.  He had on his baseball cap and kept asking for his shoes.  We constantly have to make decisions about whether or not Eli will go places with us.  We have to balance keeping him away from unsafe/unhealthy situations with allowing him to have normal experiences.  It's difficult.  Tonight as I was forming my opinion on whether or not he'd go, I hated the reason I decided he should go.  If his cultures are positive he'll be back in the hospital for an unknown amount of time.  And we don't know what could happen.  As a CHD family we always hope for the best but have to acknowledge the worst.  Eli went to his brother's game.  We were early and the boys chased each other on the freshly raked field.  I looked at their footprints in the infield dirt and loved that, for the moment, theirs were the only ones.  Hearing their shrieks and laughter as they ran around confirmed we made the right decision by bringing Eli.  Some may not understand that.  Some may think the best decision would be to keep him home, away from crowds and germs.  For us, it was right to bring him. 

I'm sorry I haven't updated this blog often.  Our family life is more than a full time job.  And I've had to make real efforts to take better care of myself so I can somewhat keep up with the demands.  There are so many moments, pictures, and stories I want to share here, for all of you and for us. 

Eli is sleeping beside me in our bed again as I type this.  He's such a perfect mixture of sweet, feisty, innocent, stubborn, and cuddly.   He doesn't have any fever now, but as I wrote before, the fever doesn't scare me.  Please pray that his cultures are negative.  We need negative.  Please, just let it be negative and leave my baby alone.  It's going to be a long weekend for us. 

Fontan-iversary

I've been playing with Eli this morning and reflecting on the past year.  His Fontan (third open heart surgery) was one year ago today.  One year ago today the waiting room at St. Vincent's Hospital was dotted with colorful tshirts that read "Eli's MVPs".  The town of Washington was dotted the same way.  Eli's FB page was filled with photos of people wearing their shirts in a show of support for Eli.  We also received innumerable messages of support and prayer from many people.

It was a long surgery since the Fontan was expected to take about 5 hours and during pre op testing we found out he also required mitral valve repair.  In addition to that he also was getting his pacemaker so he spent nearly 8 hours in the OR.  Initially he was doing very, very well.  In the coming days he developed some complications that turned into major complications.  All in all that admission was seven weeks long. 

Because you all follow him so well, I'm not going into details about the events of the year.  Let's just say that of the last 365 days, Eli has spent nearly half of those as an inpatient.  And when he's not been in patient, he's had some multiple outpatient issues to deal with such as home administration of IV antibiotics through a PICC line or his ongoing therapies. 

Throughout the past year we've faced many things we never imagined we would.  I'd love to say it's all behind us, but that isn't true.  Congenital heart defects do not "go away".  There is no single surgery, procedure, medicine, or exercise to cure him.  A transplant is not the answer, even if he requires one someday.  Now in addition to his heart problems he has a whole new set of challenges because of the strokes.  Because of all that, we've grown closer as a family.  We've been made more aware of the incredible power of prayer.  I wish Eli never had to go through these struggles, but because he does, he, and the rest of us, will be better because of them. 

There are no words to express the gratitude we have for all the prayers, hugs, meals, donations, gifts, and support from all of you.  Thank you isn't sufficient and I don't know what the next best words are.  Please know that we know how blessed we are by all of you.

To end, I thought I would lighten the mood by telling you how Eli celebrated his Fontan-iversary this morning:  He locked me out of the house while I walked Albert.  Yep, we party hard around here!

Home and Loving It!

We have been home for a little over two weeks now.  Eli has therapy every week day; occupational therapy comes Monday, Wednesday, Friday and physical therapy is Tuesday and Thursday.  The therapists come to the house for his sessions.  That is so wonderful for me.  Eli loves getting to go places, but it is hard to take him out these days, especially by myself.  He's a busy and active three year old but has balance issues, can't use his left arm much, and is still wobbly on his feet because he's only been walking for a little over a month.  Let's just say that the majority of my days are spent within arms' reach of the boy.  It's tough to keep myself that close and yet not help him too much.  He has to learn (relearn) how to do things for himself.  Having therapy at home is building his confidence as he maneuvers his way around the house.  Overall he has made lots of improvement but of course there's a long way to go. 

Health-wise he's been doing pretty well until late last week.  He developed some allergies and/or a cold.  That's been getting better but he's still got a runny nose and red, goopy eyes.  The good news is that he hasn't had any fevers with it.  We know he will be sick at some point again and he will run a fever.  However, we are so fresh from his recent bout with staph aureus that it really scares me.  I don't know if you remember, but after Eli's most recent heart surgery it was determined that the staph was in the graph in his heart, in the wires used to close his sternum, and on the pacemaker leads and wires.  The graft and sternal wires were replaced and the pacemaker was removed.  All but one of the pacemaker leads were removed.  There was one lead on his left ventricle (his only working ventricle) that Dr. Abraham couldn't remove without causing too much damage.  The unspoken fear for us and Eli's entire healthcare team is that the staph could still be hanging out on that lead even after six weeks of IV antibiotic treatment.  That one lead is the reason Eli cannot ever have an MRI and why I will forever have heart palpitations and be sick to my stomach anytime we even think he has a fever.  He had his antibiotics and now it's just a waiting game as we pray the staph is gone. 

Let's move on to the more exciting news around here! 

Zachary  I always talk about Eli, let me brag on Zachary for a little bit.  You all know what an awesome kid he is and if you don't then just take my word for it.  He is so glad to have his brother home.  Probably glad to have me too, but it's so rewarding to see how much he loves Eli.  Even through all the weeks we were apart he kept working hard in school and hasn't really acted out in any crazy way.  There are some things that come up from time to time but we just deal with it as it comes and nothing has been as bad as it could be with everything he's endured.  For St. Patrick's Day he had an assignment at school.  When I saw this it brought tears to my eyes.  He had six wishes to make and here's what they were:  Disney Cruise, Turbo Fast (a movie), a huge pizza, for Eli to come home, an airplane museum, and a real dinosaur.  It melts and breaks my heart that he used a wish for his brother to be home.  Most kids would like to give their little brothers away (and I'm sure there are times Zachary wants to as well), but he gets how special it is to have Eli home because he knows how rotten it is without him here. 

On April 2nd Zachary lost his first tooth!  While we were apart, one of the things I was afraid of missing would be his first loose tooth and losing it.  We got home on a Friday and on Saturday night I was giving the boys their bath.  Zachary was roaring like a dinosaur (surprise) when I noticed something in his mouth.  On closer inspection I saw that his permanent tooth had already broken through behind his baby teeth on the lower jaw.  His response?  "I thought something felt weird."  Then we checked his teeth and found that he had a loose one.  Several days later he and Eli were playing in his room and he came running out yelling about blood and his tooth.  I was sooooo happy we were all together for this occasion for him. 

The hole from Zachary's first lost baby tooth.  He was a very excited little boy!
 

Little League  Washington's Little League Opening Day is on Saturday April 12.  Our boys have been asked to throw out the first pitches of the season.  We are so excited.  They talk about it at home and have some practice, but I'm really curious to see what happens when we get there in front of a crowd of people!  Eli will throw the baseball first and then Zachary will throw a softball.  If you're going to be at the Sports Complex watching your little loved one that day, please wear your Eli's MVPs shirt.  Eli gets a big kick out of seeing his shirts on people.  He's starting to grasp the support he has around him...even if he doesn't know why!  We are very excited for Saturday and I can't wait to see how the boys do!


Motorcycle Ride  A group from Washington is sponsoring a benefit for Eli.  This is also on Saturday April 12.  Because of the Little League obligation we won't be able to attend the departure from downtown (with police escort!).  We are planning on being at the Krome Khaos club house when they return.  This event is like nothing we've ever participated in before and we are so grateful to those in charge who heard about Eli and want to help.  We plan on using any funds raised to help purchase a special trike like he used at Peyton Manning Children's Hospital.  We thought it would be fitting for the bikers to help buy him a bike!  Eli's bike will have foot and hand pedals. The combination hand/foot drive builds strength and coordination as well as increases range of motion.  It helped him a lot physically and mentally at the hospital and we want to continue that at home.  Depending on his size and needs, these trikes (called an AmTryke) can range from $400 to $800 or more. 

If you ride a motorcycle and want to participate, here's the info on the ride. 

Shirts and Bracelets and Pizza Hut Coupons  I will be closing out our Eli's MVPs tshirt and hoodie order soon.  I wanted to have it turned in and done by now, but of course life has other plans.  Our hard drive fried on our laptop and that took the whole computerized spreadsheet I had of all the orders.  Luckily I still had a paper trail of orders but that's taking time to get them entered into our new spreadsheet.  Thank you all for your patience.  I haven't forgotten and I definitely don't mean to put you off.  If anyone still wants to order a shirt let me know by Monday April 14th please.  Also we still have Eli's MVPs bracelets for sale ($3 each plus shipping if necessary) and we have coupon cards for Pizza Hut ($10 each).  Contact us via Eli's Facebook page or email us at elismvps@yahoo.com.



Thank you so much to everyone who has brought us a meal as we adjust to being back home.  I cannot tell you how helpful it has been to not worry about cooking everyday.  It's hard to do tasks like that when I need to be so close to Eli all the time.  The main problem with having these meals brought to us is that my family is figuring out I'm not such a great cook!  The food has been delicious.  We think it's because it was made with love.  Thank you!  If anyone wants to sign up there are some dates left.  Go to www.takethemameal.com  The recipient name is Veale and the password is Eli's MVPs.  Or you can contact us through his Facebook page or email to set something up.  Thank you again to anyone who has helped out. 

We are so grateful for all the support and prayers from all of you.  The phrase "miracle" is not something I use lightly, but I really believe Eli is a miracle.  He has made amazing progress since his strokes.  For the first week we truly didn't know if he'd wake up.  Once he did, his progress was slow at first.  Our big excitement was when he moved his eyes from one side to another.  Now he's bossing us around and pestering his big brother like he's supposed to.  We know his progress is due to all the prayers that have been said for him.  Please keep praying for him.  He has a lot of work left to do and the majority of our time is spent trying to find ways to make everything he does therapeutic in some way. 

I'll end with a sweet picture of the boys.  It was taken tonight as they were playing in the living room.  These two are our whole world and we couldn't ask for anyone better. 

Home Sweet Home

We're home!  All of us are together at last!  Eli came home on Friday the 21 of March and our final family member came home today....Albert!  He had been staying at my mom's house since all this started.  I got him this afternoon and now the five of us are together again.  The boys were excited to have Albert home again too.  As I'm typing, Albert's curled up beside me.  I haven't snuggled my dog since Dec 29 so I'm really glad he's here! 

We had a nice gathering with some family Friday night.  When Eli and I pulled into the driveway we saw "Welcome Home" signs and balloons.  The balloons were blue and tied to the stop sign in our yard, our mailbox, our outdoor light fixtures, and other areas.  Yesterday it occurred to me that anyone driving by our house who doesn't know our situation would think we just had a baby! 

Eli and Zachary are both settling in just fine.  The first night at home, they were snuggling on the couch and Eli fell asleep while laying on Z.  It was precious.  Eli has had some rediscovering to do here.  He's asked a few times where different doors lead and he often asks where we are.  I think he just likes hearing me say "home."  We haven't had real therapy since we left Evansville but we've been trying to work with him as he's playing and incorporate stretches, transitions, etc with his play.  We have an appointment Tuesday for an evaluation with therapists who will come to the house for his therapy sessions. 

As wonderful as it is to be home, it comes with some added pressure.  In the hospital Eli was receiving five hours a day of therapy.  Even if he's approved for daily therapy, it won't come close to that.  We just have to be vigilant about doing our part with him.  We've said all along that Zachary is the best therapy tool we have.  Eli loves to play with Zachary and do what he's doing.  We have to be so careful to make sure we don't use Z as a babysitter for his brother and just let him play as a six year old with his three year old brother.  Eli is walking better however one of us always needs to be within arms' reach of him.  He does well but can easily lose his balance or get his feet caught in something. 

Another thing we spend a lot of time doing since Eli's return home is encouraging him to eat.  Prior to his fourth heart surgery and strokes, he was eating about 75% orally and about 25% was delivered through his feeding tube.  After the strokes we slowly worked at getting back to his baseline.  We were close to it before we left Indy, but in Evansville his appetite decreased.  He's also not drinking much (he was doing that in Indy, Evansville and now at home).  On a normal day he'll drink 5-9 ounces of liquid.  Because of that he's also getting regular water flushes through his tube so he doesn't dehydrate.  We encourage him to eat and drink but he still needs a lot of nourishment through his feeding tube (thank God he has that!).  In a typical 24 hour period he gets three 3oz water flushes, two boxes of Boost which total 720 calories (one midday and one overnight), and another 8oz water flush after his nighttime Boost.  We're hoping being home and getting more comfortable here will lead to more intake on his part so we can decrease some of those supplemental feedings and flushes. 

I'm sure there's so much more I want to write about and tell you, but as usual it's very late and I'm tired!  Thank you to everyone who signed up to bring us a meal in the next few weeks.  We are so appreciative of that and all the other help we've gotten.  Prayer is the most powerful thing and Eli is obviously benefitting from it!  It's amazing to me that Eli's surgery and subsequent strokes were on January 21 and his arrival home was exactly two months later on March 21.  We are so humbled and thankful. 

Short but Sweet

Just a very quick note to explain the lack of updates.  Yes, we've been very busy while Eli's in therapy (which is going very well), but that's not the only reason.  The hard drive on our laptop is fried.  We do have a tablet that I use to check out Facebook, keep up on important emails, and these short updates, but that's about it.  I can't stand typing on that little keypad and it hurts my eyes to look at it very long! 

Hopefully once we're home I'll get some better updates out.  Or at least some pictures loaded!  Eli has been working very hard and is continuing to make progress at St. Mary's Rehab unit.  The next care conference is Wednesday and if everything falls into place we will get to come home Friday.  I still shake when typing that!  I can't believe we're so close to getting the four of us back together!  I promise to update after we have more information confirming Eli's discharge date. 

Thanks for all the support, cards, gifts, donations, shirt and bracelet orders, and especially prayers.  You've all been a huge part of getting us through this.  Bless you all!

Short Update

We made it to Evansville and are settling in well.  Eli is transitioning better than I expected.  The time change has made things a little difficult, but we are adjusting.  Eli will have a full schedule of therapies here.  His schedule is set up very similar to the one at PMCH because that worked well for him.  The nurses, doctors, therapists, and other staff have been very kind and accommodating.  Eli will have full therapy days Monday through Saturday and morning sessions only on Sunday. He's a hardworking toddler!

A quick but heartfelt thank you for all the birthday wishes and kind words. It was a busy day for all of  us.

A better, more detailed update will have to come later.  It's very late and I am very tired!  Prayers for Eli to continue to adjust well over the next few days and do well in his therapies are appreciated.  Thank you all!!!

Lots of News

A lot has been going on (which helps explain why I've been too busy to do a blog post!).  I don't really even know where to start.  Normally I like to go chronologically, but my memory is fading as time passes so here are the highlights (in no particular order):

***We're moving.  Sometime next week Eli will be discharged from Peyton Manning Children's Hospital and admitted to St. Mary's Medical Center (SMMC) in Evansville.  He will be an inpatient in their rehab program which we expect to last about two weeks.  While we are very excited and grateful to continue his therapy on an inpatient basis so we don't use up our limited outpatient resources, we are sad to leave PMCH.  The people here have worked so hard to make us comfortable and I don't think I could be so spoiled at any other hospital!  We know this is the best step for Eli and we aren't doubting the decision at all.  As well as he's doing, he isn't ready to come home so this is the next logical step and we are so glad our insurance is in agreement with that!  This Friday Eli will have a repeat swallow study to see what progression he's made in regards to his safety while eating and drinking.  On Monday he'll finish his six week course of antibiotics and his PICC line will be pulled out.  When they do that, the docs want the tip of it to be cultured for any possible infection.  Once that's clear (because it just HAS to be negative!), we can go to SMMC.  As of now that could happen next Wednesday or Thursday.  We'll know more over the next few days.

***Eli is continuing to surprise us with things he can do.  He's still riding the special trike I wrote about last time.  Yesterday (Tuesday Feb 25) was a great day for him.  In his morning OT session, he was placed on his feet and he stood, unassisted, for 20 seconds!!!!  Then we had his weekly care conference and that was one of the highlights we discussed.  Later that afternoon Eli was working with PT.  During that session he walked!  The therapist stood behind him and held him around the torso.  She used her feet to push his feet out and they walked about 50 feet from the gym to our room where I was.  I dropped to my knees in the hallway and hugged my tired little miracle boy so tight as the tears fell.  Today he walked in a joint PT/OT session this morning with one therapist behind him and one in front of him.  It was better than yesterday and he worked harder at moving his feet himself.  This afternoon he walked during his PT session.  He used a walker (one of the tiniest little things you've ever seen and it's adorable!).  We used an ACE wrap to keep his left hand on the walker and a styrofoam plate taped to his left foot to help him slide it instead of getting caught on the floor.  He did amazing again.  After he walked, they had some playtime in the gym.  Then he rode the trike down the hall and back past the gym to our room.  After all that he still wanted to go to the playroom!  We did for a while but his body was much more tired than Eli was willing to admit so he rode in his wheelchair as I walked him around the hospital.  This is more than we thought we'd ever see him do again and it's only been five weeks since his strokes.  We are so amazed by this little boy!

Keep the prayers coming! 

- for Eli to continue to work hard in therapy and get the most benefit he can from the therapists and staff here at PMCH
- for a smooth transition from PMCH to SMMC.  It's taken a long time for him to trust these therapists and this is our biggest concern with switching facilities
- for Eli to have an easier time going to bed.  He works so hard through the day and it's really hard for him to let himself shut down at the end of the day.  For the past three nights he's spent at least an hour screaming for whatever he fixates on that night (first night was food, second was to remove his boot, and tonight was for me to carry him in the halls).  He's getting some meds to help him at bedtime and it has made a positive difference, but Eli still has to do his thing
- for our heart buddy Liam who got a heart transplant yesterday.  The last report I had was that Liam was extubated, awake, and alert.  Please pray for his body to accept this new heart, for him to recover quickly so he can start intensive therapy for the massive stroke he suffered last October, and for the donor family as they grieve their loss.
- for many of the sweet babies and kiddos we've met through our weeks here at PMCH.  We've seen many come and go and we've been lucky to get to know several.  They're all facing their own struggles and a prayer for good health and to ease their burdens is always appreciated.


I'll provide more information about our transition as it comes available.  I'd love to post some pics of Eli here tonight but that's going to take too long and the couch is calling my name!!!  Thank you for the prayers and all the support.  We can never thank you enough!