Monday, May 21, 2018

May 17-20: Passing Time and Enjoying Each Other

Thursday, May 17
The cardiology team as well as a representative from the GI team met early Thursday morning.  They discussed Eli for an hour (I later joked with Dr. Parikh "only an hour" to which he replied with a smile "well, maybe an hour and fifteen minutes").  Basically what they need before proceeding further is to know what type and severity of liver disease Eli has.  The best way to do that is through a biopsy.  While he's under the anesthesia for that, the team wants to proceed with a heart catheterization.  Eli doesn't necessarily need to have that done right now, but if he's sedated anyway, it would be a good time to do it.  And the information they glean from that will be helpful.  So that's really all that we got from them that day.  And that's okay.  It makes sense that they can't plan for what they don't know.  The hospitalist team got busy trying to schedule Eli for both of those procedures.  Getting all that coordinated takes a lot of time and we didn't hear anything else about it the rest of the day.  Eli was in a pretty good mood all day.  He took a long nap in the middle of the afternoon, but when he was awake he's very much himself.  He's being silly, getting more comfortable with the staff, and wanting to play more.  We both happened to have shirts that say "HUSTLE" so he insisted we wear them together today.

Mommy with her handsome little man as we both wore "hustle" shirts

This is what happens when I don't take my phone to the bathroom with me.

Working on some drawings as we wait for our supper tray

Goofy boy balancing our nighttime movie on his head.
Ending the visit with Ashley by doing SnapChat videos.  I love how snuggled up to her he is and the big smiles on their faces.  She's brought us many meals and helped provide a comforting distraction over the last nine days.

Friday, May 18
Another good day for Eli.  He ate pretty well, drank more, and played a lot.  After lounging around for a couple hours in the morning, we went to the playroom where there was a Project Sunshine representative in there.  Project Sunshine brings creative arts materials to pediatric patients.  Eli stayed in there for two hours.  He painted a birdhouse, strung beads on a pipecleaner and made a bracelet, painted a suncatcher, painted a clipboard easel, and painted a plastic cup (they gave him gold coins to keep in his cup).  After that we came to the room to order his lunch.  While we waited for lunch we took turns hiding the coins around the room for the other to find (we're still looking for one!).  After lunch, he went with the art therapist.  The art therapist and Eli had been planning this for a couple days, but our timing with each other was always off.  Finally it was working out for him to go with her.  They used shaving cream, glue, and food coloring to make puffy paint in baggies.  Then they snip off the corner of a baggie and squeeze the paint out to create their drawing.  Eli drew a dragon.  It's very impressive.  When he came back from art therapy, I thought he'd be tired.  But I was wrong.  In fact, he wanted to play football.  We have a small foam football in his room thanks to Zachary's baseball team.  The room is too small and crowded for us to really throw a ball around, so we went just outside of our unit where there's a pretty open area that isn't typically used.  I thought we were just going to throw the ball around, but Eli had grander ideas than that. He marked off our end zones, set the rules, and then we played.  At times it was full on tackle football.  That game lasted about an hour.  I told him I was getting tired and his reply was a very non-compassionate "That's okay.  Now catch this...."  We finally got to come back to our room.  After supper, we ended the night like we have all the others....watching a movie.  We snuggle up in his bed together and watch a movie, either on our dvd player or one of the ones provided through their tv system.  We often fall asleep together.  I later wake up and move to the couch.  Sometimes in the early morning hours, he'll call me back to his bed and other times not.  I love all the snuggles!  At some point in the day, we found out Eli's procedures had been scheduled.  On Wednesday, May 23 at noon, he will have a liver biopsy and heart cath.  More information to come on those closer to time.

Painting the birdhouse

A sticker project

Painting his clipboard/easel

Playing football in the unused hallway.  He's trying to get past me to score.

More football.  He tackled me.  A lot. 

Saturday, May 19
Most mornings I'm woken up about 7:30 by a cute little voice saying, "Mommy, I have to go to the bathroom"  He gets Lasix through his feeding tube around 6am, so by 7:30 it's time to get up and start peeing!  Today was no different.  I had plans to wake early for a shower and start watching some of the royal wedding because why not?  I didn't set an alarm though.  Unless I need to be up for something, I've learned over the years to get sleep in here whenever I can and not make it harder on myself.  So even though I was up for the day, I didn't shower yet.  When the urge hits, Eli has go to quickly and he needs help.  He is still monitored 24/7 by telemetry which means he basically has continuous EKG leads attached all the time.  Those are attached to a small box.  We have a bag for the box that ties across his body and makes it easier for him to be mobile with it, but it's still difficult for him to handle that, his shirts that are larger to accommodate his belly, and the urgency he feels with the medications.  After a couple hours and breakfast, I ushered my protesting son into the bathroom for a scrub.  He got his hair washed in the sink, his body washed, lotion applied, new stickers for his telemetry leads, and fresh clothes.  He smelled soooo good!  After he was done and settled in with the iPad, I finally got my shower. 

We knew we were having some visitors that day, but we soon found out we were getting more than we originally realized.  We knew Eli's kindergarten teacher and classroom helper were coming and I also knew there was a chance his principal would come.  What was a surprise was that because of weather, Zachary's weekend baseball tourney was changed to Sunday only, so Daddy and Zachary got to come visit too!!!!  Eli was ecstatic to find out they were coming.  He's gotten much more comfortable over the last few days and the mention of home doesn't automatically bring tears.  The last time they came, he was determined to not have a good time so saying goodbye wouldn't be too hard.  This time he couldn't contain his excitement.  They got here first.  He hid from them at first but it was just so he could let them find him.  He had hugs all around for his guys.  It also helped they were carrying gifts from back home.  A classmate and his family sent a bag of treats, matchbox cars, and activity books.  A neighbor and classmate of Zachary's had sent a coloring book with crayons.  Eli's Little League team had all signed a card and sent a box of baseball cards for him to open.  He loved everything and took great joy in opening each thing, however the baseball cards were a big hit!  He was still opening them when his principal came in.  Eli had no idea he was coming, so he was thoroughly surprised to see him.  It probably took Eli a minute to recognize Mr. Wildman without a tie (or rooster costume).  I'm not sure Eli ever directly spoke to Mr. Wildman, but I know he showed him some baseball cards and enjoyed seeing the activity books and crayons he brought for him.  Soon after Mr. Wildman was here, Mrs. Strange and Mrs. Mayhorn came.  Eli knew they were coming, but was his typical shy self at the beginning.  Like a typical kid who is getting spoiled, Eli whispered to me "what did they bring me?"  They didn't disappoint and gave him a baggie of coins he can toss into the fountain when we go for walks (just that morning we were given permission to take him off the unit for short periods.  Although we've not had time to go yet, he's very excited to visit fountain in the main hospital lobby)  Eli wouldn't play, but the teachers played CandyLand on Eli's bed.  Soon, Eli and Zachary were helping.  We all had a very nice visit.  Eli has talked several times about all of them being here.  We know two of his current teachers are planning on coming this week and he's excited about that.  In addition to visits, members of the school have a meal train going for Bryan, Zachary, and Charlotte and have promised to take care of mowing both our yards in Washington.  All that and they take care of and teach our kids things.  They are definitely teaching by example and we are so happy our boys are at this school.

We ended the day with a meal brought to us by Bryan's sister Ashley.  She also brought some food for the fridge we can use for snacks or meals this week as well as some broenies Bryan and Z had to get home and get some sleep before heading out early Sunday to Z's tourney.  A late night for our guys, but we are so glad they came.  Eli went to sleep quickly that night, but up until a few minutes before drifting off, he was talking about all the people and events of the day.

Peeking around from his hiding spot every time he heard the elevator.

Excitedly waiting!

Opening baseball cards from his team with Zachary

Helping play the game he wasn't going to play.

Laughing as he protests having his picture taken. 

Eli took a picture of Daddy holding Pablo. 

Eli and Mrs. Strange playing ball on the couch.

Mrs. Mayhorn, Mommy holding a squirmy Eli, and Mrs. Strange

Our dinner crew eating in the family room.


Sunday, May 20
This day was the least busy we've had the entire admission.  Eli was worn out from all his visitors the day before (and playing with Zachary), so after his Lasix had worn off and his breakfast was eaten, he laid on the couch to watch the iPad.  Soon after that he fell asleep.  I worked on some things in the room while he was sleeping dozed a little myself.  We also had a visitor who brought Eli a handmade blanket with baseballs on it.  I put it on him while he was sleeping.  When he woke, he wanted to play Legos.  When he found out B and Z were coming the day before, he asked for three things:  1)  his large Lego blocks, 2) his Paw Patrol watch, and 3) Daddy's chin.  He got all three!  So while we were playing blocks, Dr. Parikh (his main cardiologist) came in to check on him.  He built a small tower with some blocks and helped Eli finish what he'd started while we discussed a few things.  Nothing major to cover, today was just a check in day for him.  After Wednesday we'll have more business to cover. 

When he was done with blocks, he ate lunch, then we went to the playroom.  While we were playing in there, Ashley (my sister) came in.  She came to stay with him a couple hours while I left.  Since getting here nine days ago, I've stepped outside twice.  I needed a couple hours away.  I retreated to Target where I bought a few toiletries I was running out of, a couple shirts for Eli, too many clothes for Charlotte, and some things for each of the kids.  I found some large clear plastic bags that zip so I bought one for each kiddo and put some stickers, silly toys, cards, and other items in there.  Just a little something for Zachary and Charlotte back home to know we're still thinking of them and miss them like crazy.  It's been really difficult with Charlotte.  She has never been through any of this before so she does not understand why Mommy and Eli are suddenly gone all the time.  I've not been able to talk to her on the phone when I get to talk with Bryan and Zachary because she just asks "Mommy, when are you coming home?"  That's mainly why she didn't come with the guys yesterday, the separation at the end would be too confusing (and she had big plans with cousin Alyssa so she had a lot of fun yesterday without us).  Like Eli, she has gotten better about it and just today she enjoyed a little video I sent to Kendra.  She told Kendra she wanted more 'real pictures' of Mommy and Eli.  Kendra said Charlotte really enjoyed it and it didn't make her sad, so there's progress!  I need to send those more often. 

After my Target trip, a stop at the gas station, and grabbing Taco Bell as Eli requested, I came back to the hospital.  When I came in, Eli was being pulled around the unit in a wagon.  He and Ashley had drawn pictures for me in addition to making lots of silly pictures and videos on SnapChat.  They had fun.  After we ate, he wanted me to pull him in the wagon.  I'm a little meaner and told him he had to walk two laps around the unit before I'd pull him five laps.  He protested, but eventually began walking.  He loves circling past the nurses station whether he's walking or riding a wagon and getting their attention.  After six laps (I'm meaner, but also a big softie), I convinced him we were going to start our movie early tonight so we could watch all of it instead of falling asleep.  By the time we both changed, brushed our teeth, chose a movie, and got settled under his new blanket, it was time for his nighttime meds.  During his medications, Bryan called with news.  The little league in town is making Eli an honorary member of the 7 year old All Star team!  He gets a jersey, just like the players who are on the team.  He was so excited.  He immediately chose #19 which is Jay Bruce's number with the Mets (Eli's favorite player).  What support this boy has!  Meds were finished and we snuggled up to watch Ice Age:  Dawn of the Dinosaurs.  Eli watched some of the movie, but he kept saying things about his baseball team and asking if we can go watch the All Stars play.   We didn't make it very far into the movie before he was sound asleep.

Eli napping under his warm new blanket

Additional News:
I hope my delay in reporting the recommendations from Thursday's meeting didn't worry anyone too much.  Even on slow days, we are so busy here with many doctors coming in to examine him, medications multiple times a day, and many other things.  It's hard to describe how quickly the time does pass in here.  I'm often asked if it's boring waiting around in a hospital all the time and it makes me laugh every time!  It's a fast paced, constantly active environment that either excites or exhausts my little boy.  I am at his beck and call, which is fine.  He needs extra help now and he deserves it.  So, again, thank you for all the messages, texts, emails, and offers of support, encouragement, and help.  They are so appreciated.  Please know that I have read them all but really can't take the time to respond to each one no matter how much I'd like to.  It's busy enough here that I don't even get to talk to Bryan on the phone every day.  I'm not complaining about this, just wanting to stress that I do not mean to be rude or leave anyone out.  

While speaking of offers of help, please know we appreciate all of them.  It's difficult to be in a position of asking for help.  And we realize most of these offers are so we don't have to ask, but it's hard sometimes to think of things to ask people to do for us.  We are proud that we asked for help getting the yards mowed.  On that note, a huge help to us would be selling our house!  So if you know of anyone looking, please send them to our realtor (Jerry Durnil with ReMax 812-444-9695).

Eli does love to get mail, so if you'd like to send a card to him here at the hospital, he would love it!  You do not have to send gifts, he truly enjoys opening the envelopes!  He's beginning to read so he reads part of it and I read the rest to him.  He would love a card, a short note, a picture, a funny comic cut out of the paper, etc.  Just a physical reminder to him of some of the support he has behind him through these battles.  Right now, we don't know how long to expect to be here.  With a biopsy Wednesday, we would expect results within a couple days.  Then the team will have to plan treatment based on those results.  We don't know what those possible treatments could entail, we've not asked that far ahead because it's just too far ahead.  The absolute earliest I see him being discharged would be next weekend (Memorial Day weekend) and I really think that's extremely optimistic.  So we will be here long enough to receive mail.  At the end of this post I'll have the hospital address as well as a Washington address if you want to send mail there and know it will be brought to us with family visits (or if you want to send a card to Zachary or Charlotte).  

Something we will start soon is another Eli's MVPs shirt sale.  The company we used for his shirts in the past is no longer in business (thanks for putting up with me all these years, Garland Graphics!), so we are working with another company for a new design.  It will be very similar to what we had before because that logo is so well known for him, but we want to incorporate more of Eli's whole health into it, not just the heart.  So we're looking at adding something about Congenital Heart Defect Awareness, Pediatric Stroke Awareness, and possibly Feeding Tube Awareness.  In the next few days we'll have more information about design, types of shirts available, and the price.  

Thank you for all the concern and prayers.  We feel it.  Eli has been very happy and active the last few days.  It's wonderful to see him like that, but it takes a toll on him.  Thankfully he's where he can rest and be constantly monitored.  He is amazing and I hope I'm as strong as him one day.  As always, remember to cherish Every Little Beat....

Addresses for mail:
Peyton Manning Children's Hospital at St. Vincent
attn:  Eli Veale, room 3020
2001 West 86th Street
Indianapolis, IN  46260


Zachary, Eli, or Charlotte Veale
201 East Main Street #401
Washington, IN  47501

Thursday, May 17, 2018

May 14-16: Paracentesis and More Questions

Monday, May 14
Eli was scheduled for a CT arteriogram.  We found out late morning that it was ordered and they scheduled it for 3pm.  Eli was going to be sedated for this because of how necessary it was for him to hold still.  Because of what they were trying to get images of, his unique cardiac anatomy presented a challenge.  The contrast dye for the CT would have to be given through IVs in his upper extremity and his lower extremity.  He has an IV in his arm, but they had to start an IV in his leg.  The nurse called the IV team to send someone and asked them to bring ultrasound to help find a vein.  The lady who came found one vein in each lower leg that she felt comfortable trying.  She used the left leg first because she 'liked that vein better'.  Eli cooperated very well as she inserted the IV (he did cry but he held as still as he could and didn't fight).  She got it in easily, but when she flushed it, the vein blew.  So off to the other leg we went and unfortunately the exact same thing happened.  After that she said she was done and didn't see any other places to try.  Our last option was for the anesthesiologist to possibly start one after Eli was asleep.  I hate, hate, hate that he was stuck twice and neither worked, but he doesn't have good veins.  Unfortunately we have to put him through things like that sometimes.  Luckily once he was asleep, the anesthesiologist was able to start one and we are still using it.  It's been very helpful during the last couple days to have two IV sites.

While we were passing time waiting for the test, the GI doctor came in to examine Eli.  He was not one I had met before, but he was extremely nice and explained things well.  Toward the end of his visit he said they would probably do a paracentesis in the near future to remove the fluid.  I asked if he knew they recently scheduled a sedated CT for that afternoon.  He did not know that but was very interested.  I asked if it was possible to do the CT and the paracentesis together to avoid separate sedation times and he said that's what they were going to try to do.  He quickly left the room to make arrangements (the clock was ticking!).  Within an hour we had confirmation that Eli would undergo both.

Eli did very well for the scan and procedure.  I stayed with him until he was asleep then was taken to a waiting area.  While there I ate some snacks (thanks Britton's Bullpen!) and drank a lot of water.  Eli couldn't have anything to eat or drink 6 hours prior to the sedation so that meant I had nothing to eat or drink for several hours as well.  (Although I did hide a water in the bathroom and snuck a few drinks through the day!). They decided to do the paracentesis first in order to remove as much fluid as possible before the scan.  The interventional radiologist would be removing the fluid.  He said he'd come talk to me when he was done.  When he came out he told me they removed over 4 liters of fluid!  I couldn't believe it.  He said Eli tolerated it well and was having his scan done.  Shortly I was taken to a different waiting area closer to the recovery room.  He was in there for a long time (longer than he was in the procedure room).  Removing that much fluid from anyone could cause problems, but even more with a heart kid.  So we had to deal with his blood pressure being low.  Once that came back up he was monitored quite a while longer and then brought back to his regular room.

Once here, he was still very tired.  He was having his vital signs checked frequently.  Around 9pm his blood pressure dropped.  A lot.  It was 43/29.  The nurse called the doc and two doctors quickly came to him (they had been in a couple times before just checking on him anyway).  Orders for some stat lab work and fluid boluses were given.  Over the next few hours he was given two boluses of fluids via his two IV sites.  His lab work came back pretty normal and his other vital signs were stable.  He was very sleepy, but when he was awake he was talking to us.  He was drinking some and even peed a little which surprised us.  His pressures came back up and they continued to monitor him closely all night.

Tuesday, May 15
Tuesday was a long day.  Eli was very tired from the combination of the effects of the anesthesia, the lack of good sleep the night before, and the physical exhaustion of the low blood pressure.  He was cranky and whiny all day.   In addition, when the hospitalist team made their rounds, I found out that the GI group wanted Eli to have an MRI of the liver due to some questions brought about from the ultrasound he had a couple days earlier.  At first I agreed, but later realized that couldn't happen due to the piece of pacemaker lead that was still on his left ventricle from four years ago.  It's not MRI compatible.  I told the team this and they said they'd talk to GI to make further plans.  Later that day I was told Eli would have different liver ultrasound that afternoon.  He slept a lot through the day.  I wish I could say it was a laid back day, but it wasn't.  Lots of specialists in and out, lots of activity, lots of whining from him, lots of vital sign checks.  He didn't eat or drink anything other then popcorn in the middle of the day when he requested a movie (Alvin and the Chipmunks).  He fell asleep during the movie as we laid together in his bed.  I slipped out to try to give him more room to sleep.  Soon after that, we had a visitor.  His YMCA basketball coach and family had come to see him.  I knew ahead of time they were coming but no way could I control Eli's nap.  Our room is at the end of a hallway so we were able to visit for a while outside the room.  At the end of the visit Eli began to wake up.  Not nicely, but he was awake.  His coach, Taj, went into the room a little and spoke to him some.  Then he came out and asked if he could say a prayer with all of us.  It was really nice and helped soothe some internal struggles I had been having that morning since hearing some of the concerns the team had.  Isn't it amazing how a simple thing like that can help so much?  Taj and his family left, but only after insisting on bringing me supper.  After they sweetly came back with Fazoli's for us, it was time for Eli's ultrasound.  It was done at his bedside and he was very good for it.  When it was over, he came to the couch and sat on my lap.  Moving him from the bed to the couch wasn't easy since he had fluids going through his upper IV and an albumin infusion going through the lower IV (albumin infusions help replace the protein lost from all this fluid he's accumulating.  It pulls the protein back where it 'should be' then an IV diuretic is given to help flush off the fluid).  Luckily we had a student nurse with us all day so she and another student helped maneuver his equipment as I carried him from the bed (he can walk, but he was tired and we weren't taking any chances with accidentally pulling out one of those precious IV sites!)  It was wonderful to sit with him on my lap for a while, I hadn't gotten to hold him yet that day!  I opened up the food and he started eating the spaghetti.  I couldn't believe it, but he ate half the serving!  He let me order a tray for him and he ate good amounts of some of those items.  He still didn't drink much, but he continued to eat little bits all evening.  I was able to talk to Bryan for a few minutes and got some news we didn't want.  You may remember, we moved at the beginning of the year.  We moved then put our former house on the market.  Fortunately we had and accepted an offer less than two weeks later.  Tuesday, we found out the buyer's loan fell through after a month and a half of working on it.  The deal is off.  So our house is back on the market.  I tried not to think about that too much, but it's getting hard to not be overwhelmed every time I turn around.  Child Life services had brought in a PlayStation 3 over the weekend and it's still in our room.  We played baseball for a couple hours and Eli's trash talk helped perk me up.  We ended the evening snuggled back in his bed, eating popcorn, and watching a movie (Ice Age:  Dawn of the Dinosaurs).  Both of us fell asleep until I woke to move over to the couch.

Wednesday, May 16
Eli seemed to be much better Wednesday.  He woke up happier (not happy, just happier than he was the day before!).  He requested a breakfast try and ate most of it.  He watched tv for a while which was the first time he watched the tv.  Later he changed to the iPad and watched videos of mascots from his favorite teams.  While he watched those, we had our typical influx of doctors and nurses each doing their own assessment for him.  The biggest battle of today, as well as yesterday and likely the next several days, is managing his fluid balance.  He's been given albumin infusions three days in a row to help with that.  He's on two diuretics multiple times a day.  We painstakingly count every ounce of fluid he drinks, every milliliter of medicine given, and every bit of urine that he pees.  Obviously his belly was smaller Monday night after having four liters drained from it, but the next morning it was already larger than the night before.  Through the day today, I think it has gotten a little larger still.  It's nowhere near as big as it was prior to the paracentesis, but the fluid is reaccumulating.  GI visited and said in light of the results from the two types of ultrasounds on his liver, their next recommendation is a liver biopsy.  We don't have anything set for that, partly because there is a big meeting tomorrow where Eli will be the main topic of discussion.  The cardiac group has their weekly meeting on Thursday mornings.  All the cardiologists, the cardiac surgeons, and anyone else necessary will gather to discuss cases that need figured out.  We've known since the weekend that Eli's case would be presented so they can work out what is the best plan for him.  I found out today they've asked Dr. Tibesar (the GI doc on Eli's case) to be there as well.  We should know what they recommend sometime tomorrow.  I am not elaborating on the concerns with his liver right now.  It's not that I don't think they're right, it's that I don't understand it all well enough right now to fully explain.  You all know we're pretty honest with our news about him, so it will be shared, but not until we know what we're sharing.  Let's just be clear that it's pretty serious and not what we expected.  We are way beyond the point of "let's get him a pacemaker and everything will be fine."  Eli is very complicated.  All heart kids have a degree of complication, but Eli is beyond that.  In talking with specialists today I heard him called "unique" and "different" once each and "an enigma" twice.  Once again, Eli is blazing his own trail and taking us along for the ride.  We're all on this ride.

Specific Prayer Requests:
- that the team is able to have a plan for Eli regarding his needs with his heart and his liver.
- for Eli's fluid balance to be stable, as well as his vital signs and heart rhythm
- for me and Bryan as we process whatever news the team gives us tomorrow
- for all of our kids who are each dealing with this separation in their own ways 
- that we find out for sure why he's accumulated so much fluid in his abdomen and are able to treat it
- that our house sells soon so we don't have to worry about the upkeep of two homes while we're living separately under these circumstances.  

Thank you for all the calls, messages, meals, visits, offers of help, prayers, and everything else you've done for us.  I don't see this admission being over soon so we may be accepting more of those offers of help in the near future.  We are so grateful for all of you.  Trying to end on a positive note, here are a few photos from the last couple days:

Eli's special guys who help Pablo take care of him.  In the back is a pillow from Heart Hugs.  Left to right we have Austin, Tasha, Giraffy (given to him by Mady and family), Giraffy (given to him by Zachary the night before his first heart surgery), Uniqua, and Tyrone.

Not a great picture, but this is the pic I got of his belly Monday night after they drained 4 liters

Mommy, Eli, and Pablo cuddled in bed Tuesday with some popcorn and a movie.  This was a rare smile and I happened to catch it on camera!

He walked around the unit once and out to the laundry area to help me bring in our clean clothes.  The deal was a wagon ride if he walked for a while, so here he is in the wagon.  Doesn't everyone read Pete the Cat when riding in a wagon?

He still sleeps like a frog sometimes!

Monday, May 14, 2018

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!