First Day of Preschool

Today Eli went to preschool.  That's such a normal thing to say and I like it!  I wasn't really ready for him to go.  When Zachary was that age, we signed him up in April and he went to school in September.  I was still emotional about it but I had had five months to prepare myself.  Eli's time span was two weeks.  On the very first day of the school year, we got the call to schedule the evaluation with therapists and then exactly two weeks later he started. 

He was as ready as he was going to be.  He woke me this morning saying "I go to school today!  I sing songs and do my stuff."  We kept up the excitement until we actually got in the door at school.  He wasn't so sure then but he kept on.  He has his own little cubby with his name on it for his backpack, but he wasn't ready to take it off.  So he wore it into the classroom and met some of his classmates.  I got a picture of him with his teacher.  Well, he was trying to get away from his teacher, but I got the picture!  Then he gave me a good hug like Zachary does when we drop him off at school.  Eli was starting to get a little whiny but I just told him bye and I'd see him soon. 

Soon after I got home my phone rang.  It was the school.  Oh no, could he have had a meltdown they couldn't handle? (not that I don't trust them, but what else was I to think?)  Did he cry so hard he passed out?  Nope, nothing like that.  Mr. Jim just called to tell me that although Eli had some tears and crying time which was calmed by rocking with his teacher, he was doing well.  I honestly thought that's what he would do, but it was so good to hear that!

Bryan was able to come with me to pick up Eli and he was so cute waiting at the door for us.  He was very excited to see Daddy because that was a surprise.  Then we ate lunch with Aunt Ashley and Mamaw Betty and now he's napping.  He was full of news about his class and said he had fun.  And he said "Yes" when his teacher asked if he'd come back on Wednesday. 

Eli is at a preschool that is associated with the school system in town.  He will go two mornings a week and he will be in regular preschool classes.  Therapists come to the school and he will receive PT and OT through them.  He had OT today.  We're so grateful he has this opportunity to be with kids his age and work on his social skills. 

Here are a few pics of Eli on this big day:

Strapped in his car seat ready to go to school.  His "pack-pack" is on the floor beside him.
 

The boys wore matching shirts today.  Zachary was so happy for Eli to be going to school.

Walking up the sidewalk to his door.  He was ready.
If you look at his left hand you can see a blue glove on it.  That's his neoprene brace to help pull his thumb out into a more normal position.  He also wears kinesiology tape along his index finger for the same reason.  He wears those things for a couple hours each day (that's our goal anyway!)

Mr. Jim opened the door for Eli just as he was reaching for it. 

Six Months

Six months.  Six months ago this morning we sent our precious, precocious little boy off for his fourth open heart surgery.  We had no idea how long the operation would take, mainly because the surgeon told us Eli's situation just doesn't happen very often and he didn't know for sure how much he would need to do once he "got in there".  So we waited.  And waited.  And waited.  January 21, 2014 was a long day.  Eli was in the OR for over 8 hours.  He was on bypass for almost five hours.  During bypass, the body is chilled (I've never asked how low...some details are better left unknown) and the heart is stopped.  A machine is used to pump the blood so the heart isn't moving as the surgeon operates.  As efficient as the method is, there is no substitute for the real deal and there's a risk of major organs not getting enough oxygen when the body is on bypass.  But what alternative did we have?

After an exhausting day we were told to meet Dr. Abraham in the Family Lounge of the PICU.  That was normal.  When he came in he smiled to see the large group of us who had waited all day (myself, Bryan, Zachary, my mom, my sister, Bryan's mom, dad, sister, and aunt).  And of course we were all wearing our Eli's MVPs tshirts and sweatshirts in various colors.  He told us the operation went well and Eli was being settled in his room in the PICU.  Dr. Abraham was pleased with how Eli was doing and gave us a rundown of the operation.  It had taken him a long time to get through Eli's scar tissue to even start the actual revision of his Fontan.  Everything took longer, but overall Dr. Abraham was optimistic.  He is a man of few words, but he doesn't mislead in any way.  If he was pleased, we knew we could feel the same.  

After another hour or so we were allowed to see Eli.  After his Fontan (the third heart surgery) we thought Eli looked great.  After this revision we thought he looked even better than the last time.  Eli was extubated without problems a few hours later (I had walked downstairs to Subway and when I came back Eli was extubated!).  We were so relieved to see his good color, his good vital signs, and have him breathing on his own.  But that relief was short-lived.  He started having a lot of twitching.  At first we attributed it to the anesthesia (that has happened to him before).  But as the night went on, the twitching increased even with the administration of some medication.  Eventually we knew he was having seizures.  He was also not waking up which is something he had started at this point with his other three surgeries.

I won't repeat everything that happened over the next couple days, but Eli had a lot of exams and testing done.  Finally, they were able to confirm what we and everyone else thought was happening:  Eli had suffered strokes.  One stroke on the left side of his brain and several on the right side of his brain.  The doctors had no guesses what Eli's prognosis would be.  Over the next few days, Eli made a few advances.  He slowly started waking up more.  I had spent many hours in his room praying he would just open his eyes.  His eyes moved around the room but we weren't sure if he could focus on anything.  He fussed and cried.  He was inconsolable at times and we had to guess what his needs were.  Those things, plus all the other frustrating things he was experiencing, were torture, but the worst was just not knowing.  Was this the best he would ever be?  Was he going to improve from this point?  Don't get me wrong, we were so grateful that our little guy was alive (and actually thriving from a cardiac standpoint) but what kind of life would it be?  Would he be bedridden?  Would he walk?  Would he speak again?  Could he see?  Would we ever be able to care for him at home?  An even bigger fear for us, was he the Eli we knew before surgery?  Would that little boy ever be able to show his personality to us or was he gone forever?  It was scary, frustrating, and a blur.

We received lots of support through those times.  Staff from all over the hospital would stop by to see Eli and check on us.  Nurses from the general peds floor came for many visits and gave lots of hugs.  It was hard for them to see Eli like that when they had just spent several weeks with him making him laugh and letting him boss them around.  Often I would catch them wiping away tears as they left.  The Child Life Specialists were always looking for ways to offer help.  One respiratory therapist found out Bryan and I liked purple Gatorade.  The next morning we found a bag with six of them for us.  And of course the messages, emails, and texts from our family and friends was huge.  We weren't able to personally answer a lot of them, but we read them all and cherish the gestures.

The days passed.  Remember those hours I spent praying he'd open his eyes?  Fast forward six months and now I have many times when I feel like a hypocrite for begging him to slow down and go to sleep for a few hours!!!  It's a wonderful feeling!  Not only did Eli open his eyes, he also spoke, he smiled, he laughed, he sat up, he held his head up, he swallowed, he ate, he drank, he walked, he ran, he raised his arms above his head, and many other things.  None of those things have been easy.  We've all worked hard to help get him this far.  He still has a lot of work to do, mostly with that left hand and arm.  But he has come so far. 

None of the doctors were ever pessimistic with us, they were just very honest and said there was a lot of potential damage.  At the same time, they were optimistic with us.  They would often offer stories of encouragement about advances they had seen with other patients.  I don't remember any of their stories having as much recovery as what Eli's had, so I don't know if he's more amazing than their other patients or if they just didn't want to set our bar too high in case Eli's recovery wasn't this good.  Either way, we're grateful for their guidance. 

A large part of Eli's recovery is because he was started in therapies so early after his strokes.  I think he was evaluated and started with physical, occupational, and speech therapies within a week of his heart surgery.  I vividly remember one day when PT and OT were working with him together.  It couldn't have been more than 10 days after his surgery.  Lynn and Erin got Eli to the edge of the bed and then to the floor.  The two of them stood him up and held him there for a few seconds.  It was difficult.  He had no head or neck control, he had no movement on his left side, very little on the right, and he couldn't be held under the arms because he was just a few days out from open heart surgery.  He was very verbal with his dislike for it, but they needed to see what, if any, strength and tolerance he had in his legs.  There wasn't much.  As I watched those two women (who were two of the most instrumental in his recovery) hold him up, I felt faint and was nearly sick to my stomach.  It was a combination of pride for what he'd already overcome, hearing his weak cries without words as we forced him to do something he had no interest in doing, and the realization of how much he couldn't do for himself all hitting me at once.  But I had to get over it quickly and help them get Eli back in the bed.  Because he couldn't be lifted under the arms, it took three of us to get this 35lb+ kiddo back into bed.

Another memory I have was a personal attitude adjustment for me and it came straight from Eli himself.  I work really hard to find the positives in most situations and we've been put in some pretty desperate situations.  However, by this point it was getting tough to stay positive.  It was two or three weeks after Eli's surgery and strokes.  Because of the flu outbreak, the hospital had some very strict visiting guidelines which meant Zachary couldn't visit.  I hadn't seen him for so long and he needed a mommy visit as much as I needed him.  Bryan was with Eli and I was saying my goodbyes.  As I was kissing Eli's cheeks, I was being silly and he smiled.  He SMILED!  It was his first smile since all that had happened and it was incredibly precious.  As I was driving from Indy, I kept thinking about that smile and how it was just as special as his very first smile.  That's when it dawned on me.  Parents are always excited about their child's first smile, first laugh, first steps, and first anything really.  We had all those "first" experiences with Eli and now we were getting to experience them again.  That was the attitude I had to have to encourage Eli through all the pain and frustration he would encounter over the next few months.

Eli spent the next six weeks at Peyton Manning Children's Hospital.  Monday through Friday he had therapy for close to six hours a day.  On the weekend he had about two to three hours each day with therapists plus whatever we could do with him outside of therapy times.  Despite the visiting restrictions because of the flu, he had many visitors from within the hospital.  Even after he was released from his surgeon, Dr. Abraham stopped by about once a week to see how Eli was doing.  Infectious Disease Nurse Practitioner Angie was there almost daily even if the doctor was rounding on Eli that day.  PICU nurses came to see him.  The cafeteria delivery staff (usually women) would go out of their way to come past Eli's room or the therapy gym to see what advances he was making.  Student nurses who had Eli in previous weeks would come see him when they had a free moment from their current patients.  Eli became a fixture in the hallways.  If he wasn't in the therapy gym he wanted to be out and about.  I walked miles and miles around the nurses station, sometimes carrying him, sometimes pushing him in his wheelchair, and eventually he would occasionally walk around the hallways holding tightly to my hand with his right hand.  And because we were there so long, we were able to make some lasting friendships with other patients and their families.  Our two favorites this time around are Maddy and baby Katie.  Both had tough battles.  Maddy has completed chemo and will be starting college in the fall.  This super woman took (and aced!) several college courses while undergoing strong chemotherapy and melting Eli's heart.  Baby Katie fought bravely for a long time and has earned her angel wings.  That's a story I want to share another time because it is one of the most beautiful stories I've ever heard.  Meeting these families and sharing our journeys really helped us. 

Eli was then transferred to Evansville.  I knew St. Mary's was a good hospital, but I was really worried about making the transition.  Mostly for Eli's sake, but selfishly a little for myself.  Immediately we were made to feel at home.  Eli spent just over two more weeks there where he continued to flourish at a rapid pace.  The therapists, nurses, doctors, techs, and other staff were in love with him as well.  I think we'll always consider PMCH our "home" hospital because they have literally seen us through every up and down, but St. Mary's definitely earned their way into our hearts. 

On March 21, exactly three months after Eli's surgery and strokes, we came home.  We were sooo excited and sooo scared!  Eli had major improvements but he still required a lot of care.  He basically needed an adult within arm's reach at all times for the next several weeks.  We continued working with him on our own and he started therapy through our local hospital.  They came to the house and Eli warmed up to them pretty well.  They therapists we had definitely helped make the transition from hospital to home easier for us.  Because of policy change within the hospital we had to switch therapy providers.  Now we use an agency from out of town.  Again I was worried about changing therapists on Eli, but he has adapted well and tries to ignore them as much as he's tried to ignore all the other therapists he's had!

Eli has worked hard.  It's been a struggle for all of us.  We have a lot more to do but we are incredibly proud of where he is now.  The work he has left is a lot of small, detail things that aren't as celebratory as his second first smile or set of first steps, but they are just as important if not more so.  He has to work at straightening out his index finger and thumb on the left hand.  He has to work at grasping things with the left hand.  He has to work on muscle control in the left hand and arm. Countless more hours will be spent doing those things.  Will he get full control back?  We don't know.  He may not.  Early on one of his therapists said usually the most change we see after a stroke happens in the first six months.  I've had that in my head for a long time, as if the condition he's in tomorrow will be it and he won't have anymore advances.  I know that's not true.  I think he will continue to improve.  "Lefty" may or may not recover fully, but we will keep working. 

Eli also struggles with his emotions.  He's very stubborn and cries or screams a lot if things don't go his way.  Some of that could be from the strokes.  Some could be side effects from some of his medicines.  It could be signs of post traumatic stress from all the time he's spent in the hospital versus being a toddler at home.  It could be he's a normal three year old who is pushing our buttons and testing his limits.  Or it could be a combination of all those things.  He used to have night terrors but those have been few and far between for the last several weeks.  Other issues we have to deal with are that he still needs to drink more fluids during the day, we'd like him to eat more so we can decrease or eliminate the nighttime tube feedings, we don't know (and won't know for a few years) how much his vision is affected, as well as a few other things.  He is a lot of work but he is worth every bit of it. 

Thank you to anyone who has had any role in Eli's recovery.  From the dedicated medical professionals to social workers to friends and family and coworkers, thank you for everything.  We also want to express how grateful we are that Zachary is the kid he is.  Zachary is the best brother any kid could have.  He loves working with Eli's therapists during sessions.  He is so gentle with Eli and encourages him to use "Lefty" while they're playing, snacking, using the iPad, and lots of other times.  Zachary is a great role model for Eli and a huge help to us at home.  We really try to let him know how great he is, but I don't think he'll ever realize how much Eli adores him.  We're very lucky to have the family and friends we do who took care of Zachary while we had to be in Indy with Eli.  We're also very grateful for his kindergarten teacher who stayed very informed of what was happening with Eli and would offer extra support to Zachary when he needed it.  Our support system has been vital to us and we are thankful for all of you. 

Since Eli's surgery last April, our life has been filled with one struggle after another.  To get through it at the time, you just do what you have to do.  Now I'm starting to realize how much we've endured and I am starting to feel the effects of the last 14 months.  I am incredibly proud of our family.  We are not perfect but a lot of couples wouldn't have made it through times like this.  We joke that we're just too lazy to get a divorce, but in all honesty, that's never been an option.  We're stuck together even if we don't like it all the time!  And God definitely knew what He was doing when He gave us Zachary and Eli.  I really feel like no other four people fit together as well as we do. 

Thank you for all the prayers.  I am asking that you keep them coming because we know they're working!  God bless you for keeping up with our crazy life and remember to cherish Every Little Beat...

15 Years After "I Do"...and why I wouldn't marry that guy again

Today, June 26, is our 15th wedding anniversary.  We were so young. 

Now we're....well, not so young!   Why wouldn't I marry that guy again?  He doesn't exist anymore.  We've both changed a lot since our wedding, especially since becoming parents.  And to be completely honest, we've changed a lot more since Eli's diagnosis.

With our wedding vows we promised to love each other through sickness and health.  We didn't know that meant the sickness and health of our children.  We didn't know we'd have to hand over our child multiple times for major and minor surgeries and wonder if we'd see him alive again. 

For eight years of marriage we enjoyed each other's company, traveled, and moved back to our hometown.  We also helped the other through our own personal health issues; he helped me deal with eye problems that involved a lot of steroids and I helped him through kidney stones.  Shortly after we moved back to Washington, we stood together by my father as he took his last breaths.  A few short months later we did the same thing with Bryan's grandfather. 

We got to surprise our families with the news that we would be giving both sides their first grandchild.  Bryan was at most of the appointments and in the delivery room with me. We hadn't agreed on a name until we were holding our son for the first time.  We looked at each other and one of us said, "He's our Zachary."  No doubt, it was the perfect name for him.  And he's perfect for us. 

Two and a half years later we surprised our family again with news that Zachary was going to be a big brother.  Again, Bryan was with me through almost all the appointments and in the delivery room.  My favorite moment was when he brought Zachary in to meet his newborn sibling.  We didn't find out the gender with either pregnancy so Zachary was the first to know he had a baby brother.  Upon seeing Eli swaddled in my arms, Zachary said "He's so cute and tiny!"  Again, another baby who was perfect for us. 

A few weeks later we were both sucker punched by a small woman in St. Mary's Pediatric Intensive Care Unit.  She (who has to have one of the toughest jobs in the world when it comes to stuff like this) had to tell us something was wrong with our newborn's heart.  She drew us pictures.  After we discussed what had to immediately be discussed and she left the room, we sat in silence, staring at our sleeping baby.  We couldn't speak.  We didn't have to speak because we had each other. A few hours later we watched Eli being loaded onto a helicopter.  I couldn't have spent those hours with anyone else.  No one else understood what it felt like.  Only Bryan. 

The guy I married that day wouldn't have been able to look at his child on a ventilator with his chest open.  He couldn't have known he'd be tested on putting tubes down his small son's nose into his stomach for food.  He didn't know he'd have to choose between staying in a hospital room on an uncomfortable couch with beeping machinery or staying away from that hospital for days at a time to spend quality time with Zachary and return to work so we'd have insurance for Eli.  As much as we love spending time with Zachary, I don't know how Bryan stayed away.  I couldn't have, but I'm grateful he did.  He stepped up and provided for us.  And still does.

The guy I married that day wouldn't have gotten up multiple times a night to add formula to Eli's feeding.  He wouldn't have taken Zachary fishing and spent time making sure Z knows he's every bit as important to us as Eli is.  Okay, he might have done those things, but not out of the love he does now.  Now we understand how a simple evening spent on the couch with the four of us reading stories and watching movies can be the best time of our life.  The guy I married couldn't have helped me through a physically and emotionally painful miscarriage last summer that not many knew about.  Together we got through that.  Together we got through being told Eli had multiple strokes and may not wake up.  Incidentally, our lost baby was due fifteen days after Eli's stroke (which was also my dad's birthday).  Emotions were high.

The guy I married that day in 1999 doesn't interest me anymore.  I've found someone better.  Someone I have even more in common with.  Someone who is in love with the person I am now.  Someone who has earned to be loved for the devotion he has shown to me and our family.  No, I wouldn't marry that good looking guy who stood up there with me on our wedding day.  I've found someone better.  Happy Anniversary, Bryan.  I can't even begin to guess what the next fifteen years holds for us but I know we'll get through it together. 

Thick or Thin?

Eli's swallow study was great!  The therapist performing the test was the same one who did his last one at St. Mary's.  It was nice to see her again and for her to see Eli!  Even better than that, I love when there's continuity of care for him because he's such an overall complex kiddo. 

In typical Eli fashion, he fussed a little at first, but then he cooperated wonderfully.  He started by eating apples covered in powdered barium (who wouldn't love that?) and drank nectar thickened juice and milk each mixed with barium.  Those went well, as we expected.  Next the therapist tried plain, non-thickened Gatorade also mixed with barium (barium is what makes his swallow visible on xray).  As we watched the xray in real time, no issues were noted. 

After he was done, the therapist went through each picture and video in slow motion to look for any signs of aspiration.  She saw none :)  Because Eli has a persistent cough right now related to allergies and the virus he tested positive for last week, she recommended we wait to start him on thin liquids.  You know when you "swallow wrong" and it "goes down the wrong pipe?"  What do you do?  You automatically cough.  That's one sign of aspiration.  If he already has a cough then we won't know if he's coughing just because he has a cough or because he's aspirating. 

So, technically Eli is cleared to have thin liquids!  We'll just wait a while after his cough goes away to actually take away the nectar thickened liquids.  She did say we could go ahead and give him jello, ice cream, or popsicles which are all things he's not been allowed because of their thin liquid consistency when they melt. 

After we finished with his test we visited the Peds unit.  Even though Eli was only a patient there for 16 days, he became very famous.  Even now when we visit, staff we didn't meet will come out and say, "Oh, this is the Eli everyone talks about!"  We got to see many familiar faces which is always nice.  One of his Occupational Therapists knew he was coming and had asked staff to call her when Eli got there so she could visit.  Eli had fun showing off how well he could run up and down the hall.  He also showed a little work with his left hand.  He had a great game of "toss things I shouldn't because I can get away with it now since I'm so cute and mom won't make me stop with a crowd of admirers."  And, yes, he even invaded the nurses station and tried to use the computers and make phone calls. 

Zachary has been busy the past two evenings with his first Vacation Bible School.  We've wanted to sign him up in years past but the dates never worked out with whatever we had going on.  This week he's going to Our Lady of Hope's camp (at Washington Catholic) and he is loving it.  Next week he is signed up to go to the one at Bethel United Methodist.  We asked him several times if he really wanted to do both and he was adamant that's what he wanted.  However, when I asked him one night he did say he was worried about something.  I asked what and he said, "What if I get confused going to two church schools?"  I was very impressed with his question, as it was coming from a six year old!  I just told him that the point of both was to go and learn about God and Jesus while having a good time making new friends.  Then I told him it's like when Mommy and Daddy each teach him something, but we do it differently from each other.  Like tying his shoes.  We each do it a little differently and told him to chose what works best for him.  I told him going to two bible schools was like that; he can learn from both and use it how he likes.  He liked that answer and asked if there was a third bible school to go to this summer!  I told him two was enough!

It was a busy day and Eli and I capped it off with a stop at Krispy Kreme.  No, it's not the healthiest choice, but darn they're good!  And I'm proud of myself because I've only had one as I type this update (plus the two I ate on the way home!).  Hopefully the boys sleep well tonight and Eli's pump doesn't give me any trouble because this momma is tired!  Eli has therapy first thing in the morning and the nights go very quickly around here!

Thank you for the prayers for a good test today.  Eli cooperated well and we got good results.  He does still have a lot of work to do in therapy, but his progress since the strokes is absolutely amazing.  God is good!

The Preliminary Results....

We don't have the final culture results in, but the preliminary reports show no signs of growth!!!  That's the negative we were praying/begging/pleading to get :)  Thank you for all the prayers and expressions of concern.  We've had many texts, private messages, and comments in the last few days asking how Eli's doing and if we have any results.  Thank you! 

If you remember, when we went to Dr. Amy's last Friday (the morning after the fever started & we had cultures drawn) she said Eli's right ear was red.  Sadly, that news excited us very much.  We were hopeful it was just simply an ear infection but with Eli's history we couldn't be sure.  He was started on an antibiotic which he is currently still taking.  Since then, he hasn't had a temperature over 99.5, in fact it's usually 97 or 98.  And, no, I don't take his temperature all the time!  It's not even daily.  Eli has had issues with allergies (as does EVERYONE these days!) although I'm beginning to think he's got more of a head cold than allergies right now.  His nose has been very runny over the past several days and he has a nasty sounding cough throughout the day and especially at night.  The cough sounds like a drainage cough and his lungs sound very clear throughout so I'm not concerned that it's anything more serious at this point.  We're continuing his antibiotic as well as allergy medicine and the occasional dose of Dimetapp as needed for his congestion. 

Eli's still crankier than usual at times and very clingy, but honestly I can't blame all that on being ill.  He's been that way since his last discharge and being sick seems to have exacerbated it some.  You know, like three-year-olds can be!  Right now he and Zachary are dancing to a video in the living room while playing dinosaurs.  I love that my boys can multi-task!  They also made me place a box in the kitchen so they can put important things in it that we will need for vacation (which is still a month away!).  Heaven knows we can't go on vacation without microwave popcorn, special DVDs, and Zachary's binoculars!!!

Again, thank you for the prayers, concern, and support.  More prayers that he gets over this ear infection and head cold are appreciated as well as for the final culture results to be negative. Unfortunately because of Eli's history we will never be comfortable with any fever he has until we prove it's not caused by staph, so this may happen a lot.  Hopefully not for a long time because we desperately need some peaceful moments around here.  Although experiences like this once again make us realize how fortunate we are to have each other and appreciate Every Little Beat...




UPDATE:  About an hour after posting this we got a call from the doctor's office.  The final culture report is in and it is NEGATIVE.  You may begin your happy dance now, we did!

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!