Pacing Ourselves and Flying High

Many of you know that Eli's been having heart rhythm issues.  He's been in a junctional heart rhythm since his second open heart surgery in 2011 when he was 11 months old.  That just means his heart doesn't 'fire' at all the places a normal heart does to create a smooth, regular rhythm.  It also results in him having a lower than normal heart rate.  He tolerated this lower rate well, so doctors were content to monitor him and intervene if he were to have issues.  In April 2013 he had his third heart surgery.  Since they were doing surgery anyway, his team decided to place a pacemaker at that time.  He wasn't experiencing any problems with the junctional rhythm, but it's not a good idea for his already stressed heart to have the additional stress of an irregular rhythm.  So the pacemaker went in during surgery.  After surgery, he was doing well cardiac wise, but he developed a staph infection that he fought for months.  Eventually it was determined the graft placed during that third surgery was harboring staph.  The only way to get rid of the infection was to remove and replace the graft.  They couldn't tell if the pacemaker and wiring were also colonized so they opted to remove it as well.  Better to be safe than sorry.  As we all remember, that fourth surgery is when Eli had his strokes.  Without the pacemaker, he was back in his junctional rhythm and did well with it for several years.  Over those years, his resting heart rate declined from the upper 70s to the mid 50s.  Even with those low rates, he was active and tolerated it well.

In January of this year he wore a 24 hour Holter monitor (like an EKG that records for 24 hours).  That showed he has another rhythm slipping in.  Eli has been having 2-3 minute runs of atrial tachycardia (possibly atrial fibrillation) with a rate of over 200!  Dr. Steinberg, Eli's cardiologist who specializes in electrophysiology (the pacemaker doc!), said as long as Eli tolerates the low rates, he isn't overly concerned with how low it goes.  However, he is not comfortable with Eli breaking into a high atrial rate multiple times a day.  We've always known Eli would very likely need another pacemaker, Dr. S just always wanted to wait as long as possible before placing another foreign object in Eli because of his history with staph.  In an effort to  prolong that even with this new development, Eli was started on Atenolol.  It's often used as a blood pressure medication, but a side effect is that it lowers the heart rate.  Here, we were using it to keep him out of that high atrial rate, but that would also lower his resting rate even more.  Dr. Steinberg stressed that this medication was a temporary use to put off going straight to a pacemaker and to give Eli's cardiac team time to review his case and make more plans.  After several weeks on the Atenolol, a Holter done in March showed that Eli was not experiencing the high atrial rate (yea!), but his resting rate was down to the mid 40s.  When he was asleep his heart was only beating 30 times a minute!  In addition, he's experiencing several symptoms caused by this lower rate.  He's more tired, not necessarily sleepy tired, but shorter attention span and very cranky.  He's also more blue around the mouth, fingers, toes, even nose and ears sometimes.  This tells us his heart isn't pumping the oxygenated blood as well as it used to.  He's harder to wake up from a deep sleep.  In fact, he sometimes sleeps so soundly that he has actually slept through some nighttime accidents which is very unusual for him.  After he began experiencing problems, he had an echocardiogram and appointment with Dr. Kumbar (Evansville cardiologist).  His echocardiogram showed some changes since his last one in January.  She believes any changes she noticed in his heart function is because of his low heart rate now being able to keep the blood flowing smoothly, not because of a weaker heart.  Another issue he's experiencing is a distended abdomen.  He has always had a round belly, but it is huge these days.  We aren't completely sure if he's retaining fluid, or if he's having liver issues which is very common with post Fontan kids.

So all of this was relayed to his team in Indy.  With Eli's complicated heart, there's not a simple answer.  What they decided needs done (and this surprises none of us) is to proceed with pacemaker placement.  Sometimes pacemakers can be placed without actual surgery, but that is not an option for Eli for several reasons, mostly because of his unique cardiac anatomy.  So Eli will be heading to the operating room for his fifth open heart surgery.  Surgery was scheduled for the 31st of May. 

As that day draws closer, Eli's symptoms with the low heart rate are more pronounced.  He's not doing as well in school because he can't concentrate and many evenings he falls asleep on the couch very early.  Dr. Steinberg was concerned with these developments.  He's also always been very cautious of putting another pacemaker in Eli because of how complicated he is.  Dr. Steinberg wanted to take Eli off the Atenolol because of all the issues he was having with the low rates.  He was also hoping that Eli would well off of it and not need a pacemaker, or at least not yet.  So Monday, May 7 was the last dose of Atenolol we gave Eli.  We had a very busy weekend and early week.  Lots of travel and busy times.  We didn't intend to be that busy, but knowing he isn't going to get a fun summer break led us to accept a couple opportunities for experiences he would enjoy.  When I got word from one of his teachers Thursday that he wasn't playing at recess and he was not acting like himself, I figured he was just really, really tired.  I considered going to school to check on him myself, but they hadn't asked me to and I know anytime I go check on him in person, he'll want to come home.  So I decided to wait and see if they needed me.  I picked him up at the end of the day like usual and he was acting pretty normal.  I asked if he was excited for his baseball game that night and he said "YES!"  He did seem tired, but not anything I wasn't expecting.  He and the other two were playing in the basement.  After a while he came upstairs and was very whiny.  As I hugged him I could feel his heart beat and it was very fast.  I had him sit with me and used our small pulse ox to check his rate and oxygen saturation.  His oxygen was pretty good for him, but his rate was over 200.  Then I used my stethoscope to count it for myself and got the same numbers.  Through this, Eli was alert and answering questions, he just said he felt yucky.  I called his cardiologist and left a message.  Eli was still in the high rate (between 200-230).  I went back and forth checking him and packing a bag.  Just as we were about to take him to the ER, his rate changed from 200+ to 77!  Within a couple minutes of that change, the cardiologist called back and we had a long discussion about what to do if it happened again.  Eli had been scheduled for a Holter next week, but we decided to change it to Friday.  We watched him closely through the night and kept him home from school.  Friday he did go to the hospital and got his Holter put on.  He was in good spirits all day (I really think he feels like he conned me into letting him stay home from school even though we never had any intention of him going Friday!).  He and Charlotte played all day and had lots of fun.  Eli thought it was great fun to pick up Zachary after school since he didn't have to go at all!  That evening we went to Zachary's Little League game.  I've been taking our wagon to the games so I can pull him instead of him walking that far (he just can't make those distances lately).  He was fine at the game, but very whiny by the time we got home.  It was 9pm when we got in.  After he & Charlotte used the bathroom, I began changing them into their pjs.  Eli was incredibly fussy and crying.  As I changed his shirt, I felt his chest.  His heart was racing again.  I checked the time (9:15pm) and grabbed the pulse ox and my stethoscope.  His special heart was beating 250 and above.  He was wearing the Holter, but all that does is record the event.  It had happened twice within 30 hours and we weren't waiting to see what would happen next.  One thing the cardiologist said was if it happened again, it would be very helpful to have a recording of it.  That's what the Holter was doing, but it wouldn't be read until Monday.  Even more important, we couldn't count on Eli's heart to come out of it on its own like the day before.  He was still alert and answering questions, but very upset and crying.  We quickly decided to take him to the ER.  

As fate would have it, Bryan's dad was at our house to drop something off.  As Bryan scooped up Eli and I grabbed his medical binder & keys (and Pablo!), Mark moved his truck away from the van and came in to stay with Zachary and Charlotte.  Bryan set Eli in his car seat and we pulled out before the van doors were shut.  Bryan just knelt in front of Eli the whole time (we live fairly close to the hospital) to hold him in his seat as I drove.  With our small pulse ox that was still on Eli, we could see that the rate was still in the 250s.  I dropped the guys off at the ER door and was going to park and meet them.  As he was getting Eli out, Bryan asked "Where exactly do I take him and what do I say?"  I said "Right inside the door is registration, tell them you have a child with a complex heart history and his rate is 250 right now...they'll come to you."  I parked and ran back inside.  Bryan and Eli were sitting at a registration desk with two people at the computer working on his information.  Bryan didn't have his wallet so I handed over what they needed.  Bryan and Eli were taken back about two minutes after they got in there.  After I completed the paperwork, they took me back.  Eli had only been back there three or four minutes when I was let in.  He already had a respiratory therapist putting leads on his chest to get an EKG, a nurse had other leads already placed and a pulse ox on so his vitals were already showing on the monitor in the room (still 250 range), and another nurse was almost done placing an IV to draw labs from.  I had been in the room about a minute when the doctor came in to get Eli's history and examine him.  He was quickly placing a call to our Indy cardiology group.  As he waited for the call back, they prepared Eli for administration of drugs that act very quickly to break rhythms like that.  Through all of this Eli was awake.  He was crying some, but would mostly just stare at the bed.  He wanted to hold my hand all the time (fine with me!).  His oxygenation was dropping a little due to the stress his body was under, so he was placed on oxygen.  We tried different things to get him to bear down and perform what's called a Valsalva Maneuver.  If he bears down like trying to poop, if he would cough, if he would hold his mouth shut and try to blow air out, then any of that could potentially help break the rhythm.  But he refused.  He was grunting a lot which is something he often does when he's upset.  He seemed cold, so the nurse tried to put a blanket on him.  He got mad and grunted her away.  She left the room and he settled back on his bed.  He closed his eyes and suddenly his heart rate was 77!  After 55 minutes of over 250, he converted on his own!  The doctor was on the phone at the nurses station talking with the on call cardiologist.  Just as I was about to go there to tell him about the change, I hear one of the nurses in the hallway excitedly say "he converted!"  Everyone came back in and checked him over.  He was getting really mad again (too bad, kid!).  It was a huge relief, but we weren't done.  This couldn't keep happening.  The cardiologist said to transport Eli to Indy for admission and evaluation.  

***We have only praise for the ER staff at Daviess Community Hospital.  It's a small hospital with limited capabilities, but it's what is closest to us.  We've had Eli there several times (twice in true emergent situations like this) and have been well taken care of each time.  A kid like Eli has to scare them, but they don't show it.  They listen to what we tell them about his defects and health history and we are included in his care from start to finish.  And, what you can't teach in any health care school, they care about him.***

The flight team arrived quickly.  Eli wanted me to fly with him, but there's no extra room on most of those flights and this one was no exception.  If they had room I would've gone with him, but instead we had to send our little guy off into the air with three capable strangers to get the help he needed.  For the third time in his life we watched him being loaded onto a helicopter and take off into the sky.  It was a beautiful, clear night.  "Perfect for a night flight" one of them said as we wheeled Eli to the helipad.  It was a slight comfort.  He was loaded, headphones were placed on his head to help drown out the noise and he could hear the crew talking to each other.  Pablo was tucked in just below Eli's chin and kisses were given.  We broke ourselves away from him and retreated a safe distance.  The chopper took off about 11:25pm.  Once his flight was out of sight, I started to cry.  With the challenges in our life, every day is an extra task or struggle of some sort.  But for several years, we've not had extremely serious daily concerns.  With the scheduling of his pacemaker surgery, we knew that our hiatus was ending, but to suddenly be immersed in it as deep as we were with our son in the air and two more children at home to be cared for, it was suddenly overwhelming.  After my quick cry, we hustled to the van.  We had decisions to make, packing to do, and a beautiful brown eyed boy to get to three hours away.

We knew I was going to Indy to be with Eli.  Bryan had to make a decision whether he was coming to Indy or staying in Washington with our other two.  Zachary had a tourney to play the next morning and Bryan is one of the coaches.  Of course he had good reason to miss, but there was no reason for Zachary to miss.  It would be good for him to play.  It would be good for him to have his dad with him.  Bryan agonized over the decision, but in the end decided to stay in town to be with Z and C.  As much as I wanted him with me, I knew it was the right decision.  It would help the other two to have Daddy there and, to be totally honest, it would help Bryan to have baseball as a distraction.  Eli was stable and in very good hands.  

I left town right at midnight, after peeling Charlotte off me.  Zachary has been through this before and although he was emotional, he was very calm and practical.  Charlotte has never been through any of this and didn't understand why her mommy was leaving in the night with a suitcase.  Once I got to Indy, it was so good to see his sweet face and kiss those cheeks again.  He was asleep and my sister was in the room with him (such a benefit to having family live in Indy!).  After the hubbub of his arrival and admission settled down, she promised him he would see me when he woke up if he went to sleep soon.  He woke about 4:30 and cried when he saw me.  A hug, a kiss, and more hand holding helped him fall asleep again.  His heart rate was in the 50s which was lovely to see!  

I know this post is long and I haven't even begun to discuss his stay here at PMCH (Peyton Manning Children's Hospital).  It's late Sunday night, actually Monday morning.  We've been here two full days and have been very, very busy.  The good news is that Eli has not had any episodes of SVT (supraventricular tachycardia).  Other good news is that doctors are finally seeing the size of his swollen belly and realizing it's something that needs addressed now.  Prior to all this, we had talked about it with a couple of his specialists and there were a variety of reasons they thought explained what was happening.  But now, seeing is believing and there is more action being taken.  His abdomen is very large, so large that the skin is stretched tight over it and he no longer has a belly button, but just a flat area of skin where he used to have a cute little innie.  He really doesn't have any other edema (swelling) anywhere else on his body.  Saturday he had more bloodwork drawn to test for multiple things, including liver function.  He had an echocardiogram, an EKG, and ultrasounds of his abdomen and liver also done on Saturday.  We met with the on call cardiologist, gastrointestinal physician, and the hospitalist, each of whom had different concerns.  Through Sunday, we saw each of those doctors again.  No new testing was done Sunday, but some new medications were started.  He is now on two diuretics (water pills) to help flush the fluid off his belly.  He's not been eating or drinking well over the last couple weeks so we really need to encourage the fluids now.  But it's a balancing act and we don't want to supplement with too much.  

We're at the point now that the reason he was admitted has been moved to the lower end of the list of worries about Eli.  His abdomen is at the top of the list, but a close second is his blue lips and fingers.  His oxygen levels haven't been very low, yet he's still sporting a bluish tint to those areas.  It's been more pronounced in the last few weeks with his lower heart rates.  The cardiologist is concerned that Eli may have developed extra veins called collaterals.  These little buggars can be beneficial in some cases, but here they are not.  They are veins that develop between already existing blood vessels (basic description, but I'm tired and don't fully understand all of this either).  In Eli's case, if collaterals are present, they're robbing him of some oxygen by allowing the blood to pass through them instead of the paths the blood is supposed to take.  So now cardiology is talking about doing a CT Arteriogram (specialized, specific cardiac CT) and a heart catheterization.  There was also talk of moving his pacemaker surgery to this admission.  So there is a lot going on.  A lot of specialties need to work together and discuss several things.  Frankly, that's difficult to do on the weekend.  The cardiologist we've had this weekend is a very nice, capable physician, but he's not one of the two main ones we've dealt with in Indy before.  The same goes for GI.  It would be wonderful if those who truly have followed Eli all these years could hash this out and develop a plan.  So right now, I don't know what to expect, other than we're here for minimum a couple more days, very likely longer.  

Eli is very emotional this time.  He's older and hasn't had a hospitalization for several years.  His last one 3 years ago was for one night after his tonsils were removed.  Prior to that, we pretty much lived here, but he doesn't remember a lot of that because he was so young.  This time he is scared, he wants to go home, and he doesn't fully understand what's going on.  We had a video call with Bryan, Zachary, and Charlotte Saturday night.  While it was good to see & hear each other, I feel like it did more harm than good for both Eli and Charlotte.  Sunday (Mother's Day!), Bryan, Zachary, and -Charlotte were able to come here after Z's tourney.  At first Eli was glad to hear they were coming, but before they arrived he asked if they were staying here or if we were going home with them.  I knew he already knew the answers to both were no before he even asked because of the tears in his eyes and his trembling lips.  It broke my heart to tell him we would stay here and they would go home.  I kept promising him I was staying too.  Mommy's good, but not enough when you want to be home with family.  Before they arrived, he was beginning to act out and wasn't excited.  He cuddled very little with Daddy, was rude to Charlotte, and didn't have much to do with Z.  It's like he was protecting himself from getting hurt by not letting himself enjoy the time we had together.  He wasn't bad or mean, just emotional and guarded.  He chose me over Daddy most of the time even though I know he wanted Bryan a lot yesterday.  So sad to see him have to work these feelings out and I feel helpless.  

He did have a bright spot with the visit.  Zachary's teammates all signed a card for him and the families sent a care package.  Truthfully, it was multiple care packages!  Many, many snacks and drinks, some small toys (most have been opened already), some books, and lots of love was sent from our baseball family.  During the games both days, I've been sent videos of Zachary at bat since I can't be there in person to see.  Many texts and messages of support also.  We haven't known these people very long, but we are very grateful to be friends with them.  

Many people have messaged me over the weekend and I am so thankful for the interest, support, love, prayers, and concern.  As always, it's overwhelming to feel it.  I have answered very few of these messages and I'm sorry for that.  There are many reasons.  Mostly it's because I'm busy!  There are so many people in and out of our room, questions to answer, & tests to be taken to in other areas of the hospital.  On top of that, Eli is very clingy and won't let me out of his sight.  Plus he needs help with many tasks since he already has limited use of Lefty, an IV in his right arm, telemetry wires and box attached to him all the time, and often has a pulse ox on.  He needs help with feeding, toileting, dressing, etc.  None of that even mentions trying to keep him entertained enough.  He's had many times of laughter and fun, but overall he's very stressed out during this admission and doesn't understand  why I can't even tell him when we get to go home.  Adding to his confusion, he has to be tired after his heart working so hard for so long those two evenings.  So if I don't answer your message, please don't take it personally.  Also, I'm tired!  I only slept 90 minutes after arriving Saturday morning, so I slept hard Saturday night (with several hospital necessary interruptions).  I barely have time to talk to Bryan to keep him updated.

Specific prayer requests:

- we think Eli's rate and rhythm issues are controlled now, please pray that they are!

- that we figure out what is causing his abdominal swelling and are able to reduce it.

- that a plan is figured out between specialties

- for Eli to tolerate all the upcoming testing that is being discussed for the next two days

- for Eli's peace of mind.  He's so stressed out and tense, that isn't helping his health

- for Zachary and Charlotte.  Z is all too familiar with much of this and Charlotte is being thrown in for her first time.  

- for Bryan and myself as we try to keep our family together despite our distance

Thank you for bearing with me for such a long post.  I had written about Eli's upcoming surgery, but hadn't posted it yet because we didn't want to before we told the boys about it.  Well then everything blew up and to fully explain why we're in the situation we're currently in, I had to backtrack and explain.  It's an understatement to say we appreciate all the support and concern that's been extended.  Thank you isn't enough, but it's where we'll start.  THANK YOU!  I'll try to be better at keeping the posts more current as I update his status, but until then remember to cherish Every Little Beat....

A look at his rhythm while in the ER.  His heart rate was 265 here.

Locked and loaded into the helicopter under the close watch of Pablo.  Eli said he didn't sleep on the flight (maybe didn't, it was less than an hour for him) and that Pablo was given a set of headphones too.

The helicopter leaving with our baby

My sweet sleeping boy after I arrived at 2:30 in the morning.  I brought other stuffed animals for him and his green Elmo blanket.  

This was taken in the ER at home, but it shows what the staff had on him when I got in the room just minutes after him.  It also shows the size of his belly these days.

Eli has always liked the pancakes here!  This was Saturday morning.

Eli took this picture of his friend as we were waiting for transport after his ultrasounds Saturday afternoon.

Momma and her brown eyed boy!

Sunday morning CandyLand before a bath

Air hockey after a bath (he won....again)

In a nice moment together, Eli and Charlotte were finding our van in the parking lot.

Eli unpacking some of his goodies from Z's baseball team

More goodies!

This is most of what our baseball family sent.  No trouble for me to find a late night snack tonight!

Eli's card from Zachary's team

Each team member signed it for Eli

Playing together in the playroom

Of the fourteen pictures taken, this was the 'best' one.  It was at the end of our visit and the two littles were not wanting to do this!

Mommy with her baby girl

Picture Bryan texted to me of Zachary at his baseball game with the flower he had for me.  At this time, we didn't know if the games would be done early enough for them to come to Indy.

Zachary giving me the flower and card all the ball players gave their mothers for this Mother's Day Tournament

Front of the card

The message he wrote on the back of the card brought me to tears.  I feel like I'm so hard on him and that he has to deal with more emotional stress than most kids do, but this shows he doesn't always think I'm a bossy dictator!  It was exactly what I needed at that moment.  And I love that he worked in his love of dinosaurs!