Tuesday, April 30, 2013

Days 12 & 13, Post Op Fontan (April 29 & 30)

Both days have been busy for Eli.  He's been in a very sour mood since surgery and doesn't smile much.  If he does, it's clearly by accident.  He cries as soon as anyone walks into the room.  The boy is done.  He's been through this before, he's too smart when it comes to the hospital routine and he's not in the mood for it.  So we were pleasantly surprised when he took a liking to his student nurse on Monday.  It was a tall guy named Josh who has a two year old son as well.  First of all, Eli prefers male nurses to the plethora of females who take care of him.  Secondly, Josh knew not to push too hard, but how to get the things done he needed to.  Thirdly (and maybe most importantly) he had pictures on his smartphone of his son and could talk to Eli about him. 

Whatever the reason that Eli was in a semi-tolerable mood Monday, we were happy.  Eli even requested a wagon ride in the morning.  As we made the circle around the hallways, we stopped at the big window and showed him the play area outside.  Yes, we're on the third floor, but there is a playground for patients who are allowed to use it, weather permitting.  Monday was a great day to be outside and Eli said yes when we asked him if he'd go out. 

We brought him back to the room for pants and shoes and took him out.  Josh accompanied us and brought a towel for the leftover rain puddles on some of the items.  Eli stood outside the wagon and started crying seconds into the stand. 
Crying because he had to stand

We asked him what he wanted to play on, thinking he'd point to the little Playskool slide.  But no, our son points to the huge climbing tower and wants to go up.  Remember, this is a child who hasn't stood more than a combined minute since surgery and in addition to not being able to pick him up under the arms, we also have to be careful of his chest tube, carry a telemetry box (heart monitor), and deal with his "portable" oxygen tank on wheels (portable my foot, the thing is half my size).  But, Daddy & Josh scoop him up along with his previously mentioned necessities and climb up a level.  He just wanted held and enjoyed feeling the breeze and sunshine.  I snapped a couple pics of them up there then Josh came down and took a picture of the three of us.

Hanging out on Peyton's Playground (that's not the name of it, just what came out as I typed!)
When we went back in Eli wanted to keep riding in the wagon.  We made a couple more circles and then took him back to bed.  He was a tired little monkey. 

The rest of the day was pretty uneventful.  We did a couple more wagon rides and he had a therapy session which he hated!  How dare this woman bring in a play mat and toys?!?!  She left the mat and a bench in the room.  The bench is to encourage him to sit on it and make it easier for him to bring himself to a standing position. 

Monday night he had a slight fever (100.3) but it was taken care of with a dose of Motrin.  I was concerned because he hasn't had much fever despite the staph infection.  When we talked to Dr. Belcher about it Tuesday morning, he wasn't too concerned.  He said it's common to have a higher temp in the early evening hours, he liked that one dose of Motrin lowered it, and that it wasn't that high to begin with.  He said he'll keep watching him and see if it continues and under what circumstances.  He's a very calm, laid back guy but also knows lots of details about Eli and we're comfortable with him.

Tuesday morning was a little rough for Eli.  Bryan left to come to Washington so he could hang out with Zachary and go to his ball game.  Eli seemed to know Daddy wasn't just going to the store and he was VERY out of sorts all morning.  We took four wagon rides today!  It was difficult for me at first because I wasn't used to navigating the wagon and the oxygen tank, but we're pros at it now.  Unless I have to open a door.  After the first wagon ride we sat on the floor and played with some toys on the play mat.  A dog came to visit (Eli was not a fan) then PT came in.  I told her everything Eli had done by then and he plainly told her he wanted bed.  She said that's fine but he had to walk there.  With some assistance and a lot of protests, he walked to a chair she had placed by his bed.  Then she helped him into the chair, to a standing position, and into bed.  He did a lot of it himself which just showed us he can but it takes more energy than he's willing to give.  After a brief nap he had lunch.  He's tired of being in bed so he tried the big chair. 

He wasn't sure at first but he ended up doing really well in the chair.  He ate a decent amount for lunch too.

After another wagon ride (#2 or #3?) he got a bath.  He REALLY needed one and to have his hair washed.  He screamed the whole time but the nurse and aide worked very quickly and he smelled so good when he was done. 

I wasn't much help because I was laughing at him and taking pictures.  

He snuggled in my arms on the couch for a while before going back to his freshly changed bed.  We took another wagon ride while waiting for supper to arrive.  He only ate 1/2 a dinner roll for supper but he was so tired he fell asleep on my lap.  With Bryan gone, I'm getting a lot more snuggle time!  Eli also enjoyed some candy from his nurse Steph.  There was a chocolate sale in the lobby today and she brought me some Peanut Butter Meltaways.  (I told you they take good care of us here!)  Eli saw me eat one and starting pointing while saying "Choc!"  He ate two by bedtime (he asked for more but mean Mommy thought that was enough!).  He ate 8 grapes before bed and is sleeping now.  Hopefully he's tired enough that he sleeps well tonight and feels rested in the morning.  He's been restless for a few nights now and needs some quality sleep.  He had a low fever again tonight about the same time, but we'll just see what Dr. Belcher says in the morning. 

Zachary and Bryan had lunch together today and did some errands around town.  Z was excited because he got two suckers at the bank!  His game went well and he had three hits :)  They were enjoying frozen pizza for supper and going to sleep upstairs in the big bed.  Bryan will take Zachary to school in the morning and head back up to Indy.  It was hard on him to leave Eli and I know it will be hard on him to leave Z.  It's tough being torn between our two perfect boys ;)

My friend Katie updated her blog today about Caleb.  May 1 will be the six month anniversary of their admission to Riley and the start of their wait on the transplant list.  They are a very positive and faithful family, but that's a lot to ask of anyone!  They have seen three or four children who were admitted after Caleb receive new hearts while they're still praying for their call.  Of course they're happy for those families, but it's hard on them and isn't getting any easier.  Please include them in your prayers.  Just when I'm feeling weary because we've been here for 15 days and counting, I think of their endurance and realize I have nothing to complain about.  Pray for them to be energized with hope and for the call about Caleb's new heart to come soon.  Luckily, he's been pretty stable for a while now so pray for that to continue. 

Thank you all for your prayers for us and our friends.  We see that the power of prayer is incredible and inspiring.

Monday, April 29, 2013

Day 11, Post Op Fontan (April 28)

Saturday night was a little rough for Eli.  He was hurting a lot and we gave him a dose of morphine around 9pm.  Everything he did seemed to make him hurt and his oxygen sats were steadily lower than what they had been.  After the medicine took effect he was pleasant to be around!  His nurse even stayed in the room for a long time because he was being so funny.  He slept pretty well, but his oxygen saturation was lower than it had been (although it was higher than when he was in pain).  His monitor is set to alarm whenever his sats reach 91% or lower.  They were going off all night long. 

As Sunday progressed, he was fussy and cranky.  Some of it is just the fact that he's done with being here.  Some of it is the fact that he hurts.  His chest tube only drained about 70cc Saturday (just over 2 ounces), but Sunday he beat that on day shift alone.  Dr. Kumar (cardiologist who was rounding this weekend) said we could think about taking the chest tube out when he had a couple consistent days of less than 40cc.  We're not there yet.  I'm sure it hurts Eli to have that fluid pushing on his lungs. 

A look at Eli's chest tube.  I can't remember if I posted this before.

In happier news, we had several visitors today.  Bryan's Great Aunt Jean and Great Uncle Larry along with their grandson Max came to visit.  Later in the day, Bryan's parents and sister brought Zachary to see us!  As they were getting ready to leave, my sister came.  It was nice to see non-medical adults again.  It was especially nice to hold Zachary!  He looked like he's grown in the past week!  He was a little sad to leave, but he did very well and not too many tears. 

While he was here, he stayed very busy.  He showed us a new game Aunt Judy bought him, we took Eli for a wagon ride (Zachary pulled most of the two laps while Bryan pulled the oxygen tank), the boys each had a popsicle from the nurses station, and Zachary got to help me unload our clothes from the dryer. 

The Veale men

Popsicles from the nurses...Zachary was happy, Eli not so much.

Eli was laboring and fussy after his wagon ride (second of the day) and his nurse didn't like his color too well.  We gave him another dose of morphine which again did the trick for him.  The night shift nurse turned his oxygen up from 0.25 liters to 0.5.  It seems to be keeping him more steadily in the low to mid 90s barring any outbursts from Eli.  Poor lil guy just can't get comfortable in bed anymore.  He'll ask to sit up and then he'll cry and want to move.  We'll move his position then he'll lay back down and fuss a little more.  I can't imagine how he feels.  Even more frustrating is that he can't really tell us when & where it hurts.  We have to guess and I'm always afraid we're wrong. 

Holding Daddy's hand

He needed some comic relief after the morphine started helping him.

Other than seeing Zachary and our other visitors, our highlight of the weekend was getting a refrigerator in our room.  Yesterday morning I made a comment to our nurse that I felt like we were wasting milk and juice because Eli couldn't drink a whole carton at a time and it would sit out too long for him to be able to take it.  She said she'd be right back and within a few minutes came pushing a mini-fridge into our room!  Later she came with several juices and cartons of milk to stock us up for a while :)  They're making it harder and harder for us to leave here... but leave we will when Eli is ready!

Full of goodies!

Here's a quick look at what our room looks like.  It's a little messy given we had just entertained a total of eight other people throughout the day and done some laundry. 

Sink, nurse's work area, computer, IV pumps & feeding pump, crib.

The desk and chair where we post updates & blogs!  Of course that's baseball on tv....every evening it's always baseball and/or basketball!

Our couch (pulls out into a bed.  Comfort level?  Not too shabby!)  Our closet, but it's blocked by all the junk on the floor we couldn't fit into the closet.  Tomorrow is definitely a "pack some crap out to the van" day.

Our bathroom, complete with our very own shower stall.  It's great having our own bathroom, but we'd love it if the mirror was a little higher.  It cuts us both off at chest level.  Granted we're in a children's hospital and most kids aren't as tall as we are, but aren't there a lot of parents who stay with their kids?  And aren't a lot of them taller than 5'2"?  And couldn't you have a pediatric patient who's in their late teens and taller than the mirror?  I do realize that if this is my complaint about the hospital, then we're in good hands....well, the bathroom mirrors and wishing they had Coke instead of Pepsi!
We also opened up some of the mail that has been sent for the boys.  This is a photo of things sent for Eli, Zachary's are back in Washington. 

Thank you to everyone who has mailed cards for our boys!  Some even included Mommy & Daddy!  It's so nice to see the messages people are including with their cards.  Thank you so much for the encouragement and support!
Specific Prayer Requests:

- that Eli continues to get stronger and experience less pain
- that his chest tube can come out soon (but obviously not until he's ready!)
- for Zachary to continue to be stronger than a five year old should have to be as he is shuffled among loving family members while Bryan and I are with Eli
- for things to be going well enough with Eli that Bryan can go back to Washington on Tuesday for Zachary's ball game & to spend the night with him
- for a fellow heart baby in Tennessee (Braxtyn) who is having a really rough time right now and was flown to Vanderbilt this evening because of some very serious complications.  His parents have become very vocal CHD advocates
- for all the doctors, nurses, and therapists involved in Eli's case, that they continue to provide excellent care and see all the pieces of the puzzle that is Eli

That's not asking for much, is it?  ;)  Thanks again for reading and caring about Every Little Beat...

Saturday, April 27, 2013

Day 10, Post Op Fontan (April 27)

Eli is officially two and a half today!  Whooppeee :) 

He did not sleep well last night.  He was super fussy and couldn't sleep for a long stretch.  We kept changing his position in bed but it didn't seem to help for long.  We think he was pretty sore from all his activity yesterday.  We kept him on a regular schedule of Ibuprofen & Tylenol, but there's not much more we can do. 

Today he's had several naps.  He's been up on Bryan's lap on the couch three times and went for one wagon ride.  We didn't try to get him up on his feet today.  We'll work on that tomorrow (don't tell him that yet!).  Dr. Abraham said we could get some PT ordered for him just to get him up & going again. 

Again, he's eaten pretty well.  He had pancakes, yogurt, & bacon (he called it hot dogs?) for breakfast.  Lunch was fish sticks, fries, and pudding.  For supper he had chicken nuggets, a roll, and chocolate ice cream.  My sister brought pizza for me & Bryan and Eli ate some of that too.  As he's eating more regularly, moving around more, and getting Miralax, his bowels have started moving a little better.  Hoping that keeps up for him because he doesn't need to add that to his list of issues!

Dr. Belcher (infectious disease) came in this morning and said there's still no growth on Eli's latest cultures (two days ago).  That's a really good sign.  We'll still be doing the antibiotic therapy I described in the last post, but it looks like we're definitely on the right track.  Dr. Abraham said we'll see how the weekend goes and possibly consider taking the chest tube out on Monday.  For now, we just keep doing what we're doing medicine-wise and don't rock the boat!  Sometimes I think the doctors are afraid we might think they're not doing their job if something isn't changed or new each day.  We get the fact that Eli needs time.  Of course we want to get our baby home, but it's obvious to us that he is not ready.  We're okay with that because we know he'll get there. 

The nurse who was taking care of Eli last Sunday when his heart rhythm changed was working today.  She came in to see him just as soon as she got her patients assessed.  She was glad to see how good he looked.  She was a little surprised at the chest tube, since Sunday his effusion wasn't very big.  She said she had called a couple times during the week to check on his status.  When she left last Sunday night he didn't look so good, but she said her mind was at ease after seeing him today!  We're very lucky to be surrounded by so many people who truly care about Eli and us.

Friday, April 26, 2013

Day 9, Post Op Fontan (April 26)

Today started off like any other:  some omelet for breakfast, half a cup of yogurt, sitting on the couch with Peyton Manning getting our picture taken, going for a wagon ride.  You know, nothing new :)

Yes, Peyton came to visit today!!!  Yes, he really is that tall.  It was very quick and we didn't even have time to get our camera out.  Eli was on the couch on my lap and Peyton comes in the room and says "Eli.  I know that name!"  He shook hands with Bryan then me and sat next to me on the couch.  A PR lady was across the room and took our picture.  Eli wasn't sure what was going on.  He was upset (probably thought Peyton was another doctor who was going to whip out a stethoscope or put a tube in him) and Peyton joked that we'd need to photoshop a smile into the picture!  He had orange stadium blankets embroidered with an 18 to pass out to each patient. 

He told us he thought about and prayed for all the patients here as he shook hands to leave.  There was a nursing student and her instructor in our room at the time and he shook hands with them as he left.  After he was gone we all just looked at each other and said, "Did that really happen?"

It was a quick visit, but from what we understand, he was going to every pediatric room in the hospital that wasn't in isolation.  There were other events at the hospital going on today centered around his visit.  Tomorrow night is the big PMCH Gala which raises a lot of money for the hospital.  I'm sure he'll be at that.  We also heard that country music star Luke Bryan is performing.  It was really neat to meet him in here, but I have to say I wasn't as awed as I thought I would be.  Yes, he's a sports superstar and has done many, many good things outside of sports.  Lending his name to this hospital and supporting it the way he does is an example.  As great as it was to meet him, we're still more in awe of the doctors, nurses, aides, therapists, nutritionists, etc we've been working with to save our son.  That's why it pleased me so much that Peyton took the moment to shake hands with the nursing student and her instructor as well as visit with the sick children and their parents.  He is a gentleman and has earned the endearment he has to this city, not only because of his achievements on the football field, but mostly because of the person he is off the field. 

In other news, Eli went for another wagon ride.  It was much like yesterday in that he fussed and fussed until we started rolling.  He held himself up much better today and we went twice as long as we did yesterday.  He was definitely ready to get back to bed when we were done though! 

Day number 2 of walking the halls
A chocolate ice cream treat for the boy who worked so hard holding himself up in the wagon.  Eli wanted to hold the ice cream and feed himself.  He did a pretty good job!

This afternoon we had to get him on his feet.  He hasn't stood since Wednesday the 17th.  He didn't want to today either!  It was really hard to help him because we can't hold him under his arms.  That's one of the restrictions after his surgery, because his sternum was broken open, we can't lift him under the arms for six weeks.  We had to support him by one of us holding his legs and the other one keeping hands on his back for support. 

Trying to entice him to stand with some toys.  He wasn't falling for it. 

We tried to have him stand for a few seconds and he did well at first, but then his little legs started to buckle underneath him.  We put him back on Daddy's lap and let him rest a little.  He started whining for me so I got on my knees about two feet in front of Bryan.  We made him "walk" to me. They were shuffle steps and he had four hands supporting him, but HE DID IT!!! 

You can almost hear the protests as you look at the picture!  This picture doesn't show them well but I had found some "Rubbies" socks at WalMart yesterday.  I picked them up thinking they would be a good choice for when Eli had to get out of bed and start walking.  The pair I grabbed is blue with different colored dinosaurs!

It felt so good to scoop him up in my arms.  He kept crying and pointing to the bed.  These days when he asks for Elmo, he means his Elmo blanket from Aunt Cara.  He seems to think if he pulls it up to his chin, the nurses, docs, etc can't or won't get through it to him.  It's funny that he thinks he's figured that out but it's also sad. 

Before we had him up he had a snack.  He didn't have much lunch because he was worn out from the wagon ride, but we saved it for him.  He wanted the fruit so he did eat a fair amount of apple and orange pieces.  Then he saw some Pringles we had stashed in the room and had to have some of those!  


Overall he is gaining strength, it's just a very, very slow process.  He's been back in his bed for a while since we had him on his feet and he's taken two or three cat naps.  He's kind of whimpering in his sleep and I know he has to be sore.  He's still on Tylenol every six hours and he can also have Ibuprofen every six.  We've been staggering it so he gets something every three hours.  He's not due for his next dose for another hour.  He does have morphine available, but I really don't think that's appropriate right now.  I have no doubt he hurts, but he's not screaming in pain, his vitals are good, and his breathing is not labored.  It's very hard as a parent to make the right decisions regarding his pain control.  We want him comfortable, but we don't want to knock him out.

Speaking of vital signs, his oxygen was turned down again today.  He's now on 0.25 liters and keeping his resting sats above 94% most of the time.  We took the oxygen off at one point this afternoon just to see what his response was.  Within 5 minutes he was in the mid to upper 80s and slowly dropping.  He's back on the 0.25 liters and we'll just try again later.  For some reason these heart babies seem to hang on to that last little bit of supplemental oxygen!

As far as his infection goes, we know he has staph.  As of this morning, the cultures they drew yesterday are still negative.  They may still turn positive but the longer they take to turn means there's less of the bacteria in his system.  His antibiotic was changed to Oxacillin yesterday.  It's an IV antibiotic he'll have to be on for a minimum of three weeks.  As his healing from surgery progresses, he'll have his chest tube removed (maybe in the next two to three days?) and keep gaining strength.  Once we reach the point that the only reason he's here is for antibiotic therapy, he can be discharged home.  We'll either have to give him the antibiotic four times a day through his PICC, or get a backpack from the pharmacy equipped with a pump and timer.  They would be able to mix a day's worth of antibiotic and have the timer set to automatically give the medicine.  For the in-between times, he would receive a very slow infusion (approx 2cc/hr) of normal saline to keep the vein open.  We're not sure which method we prefer.  With the backpack we only have to hook him up once a day, but he'd have to carry a backpack everywhere (playtime, diaper changing time, sleeping) and have an IV line hanging from his right arm to the backpack.  The other option of hooking him up four times a day is an advantage because it doesn't have the disadvantages of carrying the backpack, but the less often the line between him and the medicine is 'broken' the better.  We'll have to keep the discussion going!

Today at Zachary's preschool, it was "Z" day.  He was excited because for Z show and tell he could take himself!  He wore his Zachary's Fan Club shirt.  My mom took him to school and was wearing hers too.  He was so excited when he walked in the room only to see his teacher, assistant teacher and one of his classmates wearing Z's Fan Club shirts as well!  Thanks to Ms Angie, Ms Carrie and London for helping make Zachary feel so special while Bryan and I have so much attention focused on Eli.  We are so fortunate to have our families close to home so Zachary's routine isn't totally rocked by all this.  Thanks to Mamaw Betty, Mamaw Linda, Papaw Mark, and Aunt Kendra for taking such good care of him while we're gone.  Also, a big thank you to Aunt Ashley Norris for taking three days off work last week so Zachary could stay at her house and come visit us those first few days.  Our family and friends are definitely keepers!

Right now Eli's sleeping in his crib.  He's sat up a lot today and used a lot of muscles that were cut during surgery.  I can't image how achy he must be.  Thanks for reading and for continuing to keep us in your prayers!

Day 8, Post Op Fontan (April 25)

Eli took a wagon ride!  He protested the whole time we got him ready and into the wagon, but once we were rolling he liked it.  You'd never know it by the non-smiling face and clenched hands on his blanket, but he liked it! 

"My ride is better than your ride"

He's enjoying himself, but not willing to let anyone know yet!

"but, Mommy, I don't wanna smile for the camera!"

 We stopped to look out onto the playground they have and he wasn't impressed.  We took him into the playroom which is filled with kid friendly stuff including foos ball table, fish tank, books, Chuggington train table, games, etc.  Again, he wasn't impressed.  He actually started crying and asked to leave!

The playroom that did not impress Eli.  Zachary loves it, but Eli...not so much (yet anyway!)

We took him for another lap and then back to the room.  He slept peacefully after that for a long nap. 

Sleepy baby!

When he woke we removed some of his dressings and extra monitor tabs that were stuck to him.  We need a box of Detachol (stuff you rub on his skin to help get rid of the sticky residue left on his skin) when we come home.  Baby oil works also, but the other stuff is better!  He also had his first bath since before surgery.  It was just a sponge bath in his bed and we only rubbed a wet washcloth on his head, but it was more than he's had in days.  Then he snuggled on Daddy's lap all wrapped up in towels and blankets while his bed linens were changed. 

Eli was given a cape yesterday.  There's a program here at the hospital called "The Hero Project" and their goal is to provide super hero capes to the patients.  Eli's is an Elmo print and it has felt letters that spell "SILLY" across the back.  He hasn't worn it yet, but it did ride in the wagon with him.  I think it will be a hit once he gets in a better mood.

Eli's super hero cape provided by The Hero Project at PMCH

Thank you to anyone who's donated to Peyton Manning Children's Hospital Hero Project!

Eli slept well last night (Thursday night) and is eating better too.  For Thursday's breakfast he ate some ham & cheese omelet and banana.  Lunch was some of Bryan's ham sandwich, chips, and water.  For supper he ate chicken nuggets.  The food here is actually very good.  I'm sure we'll tire of it, but so far his trays have all been good.  Bryan and I each ate a nugget after Eli was done last night (hey, waste not want not!) and they were better than any fast food nugget out there!  Breakfast this morning was another omelet and half a container of strawberry yogurt. 

We had someone contact us and say that our last post may have shown up as spam on Facebook.  I tried to check into it, but couldn't get anywhere.  Hopefully that doesn't happen again, but if it does, could you let me know?  Our internet connection has been a little "off" the past couple days, but seems to be more consistent now. 

Thursday, April 25, 2013

Day 7, Post Op Fontan (April 24)

To celebrate the one week anniversary of Eli's successful open heart surgery, he was sedated again.  This time to have a PICC line placed.  A PICC line is a long IV that can stay in for weeks at a time.  A regular IV is only about an inch or so long, but his PICC runs from the crook of his right elbow to his heart.  To place it they sedate him with IV meds and then place the breathing tube.  An ultrasound machine is used to find the best place to start the PICC, then the doctor inserts it and threads it to the desired area.  Then it's taped down, secured and they start waking him up.  It took about thirty minutes for the procedure then he was in recovery for about an hour before coming back to his regular room. 

Why does he need this?  Well, Eli was running some fever over the weekend despite being on Tylenol around the clock for pain.  Blood and urine cultures were obtained and the blood cultures came back being positive for staph aureus.  By the time the culture came back he had already been on two antibiotics (Vancomycin and Cefepime).  We're hoping those have already made a difference and we may not need to do more invasive treatment.  If we need to do more, then Eli will likely be hospitalized for several more weeks as he receives antibiotic therapy.  The reason for the PICC line is because it will last longer and provide easier access throughout the rest of his treatment (whatever course that may be).  The central line Eli had that was placed in surgery also tested positive for staph.  Dr. Abraham (surgeon) and Dr. Belcher (infectious disease doctor) both agreed it was best to get the infected central line out and to be proactive by placing a PICC.

That's pretty much what yesterday's big news was.  He was taken down to the cardiovascular lab at 10 and we got back to the room by 2.  After that he was groggy but hungry.  He was supposed to start his diet on clear liquids and advance as tolerated.  After two ounces of juice he demanded his 'bot' (which means milk).  We tried to put that off for a little while because we needed to make sure the juice didn't upset his belly after the anesthetic.  We didn't win that argument for long.  While we were waiting for his milk, Eli pointed at the menu hanging on the wall and yelled "meat!"  I guess the boy was hungry!  Again, we had to have him wait a while but a couple hours later he did get a dinner tray.  Of course he didn't eat nearly all of it, but he had several bites of chicken, mashed potatoes, and about 1/2 of a packet of pureed fruit I had grabbed on a WalMart run that day.  Think we'll pick up a few more of those!

His belly was very distended last night (which made his appetite quite a surprise to us).  He never pooped yesterday so we asked for a suppository for him.  It finally started working about 1am and again at 6am.  His belly is still distended this morning, but it's much better.  For breakfast he ate about five bites of omelet with ham and cheese, one bite of orange, and four bites of banana.  He was really cute eating the banana because he wanted to hold it and do it himself. 

He's pretty weak.  When we've sat him up in bed he can't hold himself up at all.  We have noticed that he's stronger these past couple days and have no reason to think that won't continue.  We're hoping to take him for a wagon ride today and possibly a bath this afternoon.  Some might think a bath would be more important than an outing, but we think a change of scenery (without getting another medical thing done) would be a huge benefit to him.  We can always wipe him down in bed if he's too tired for an actual bed bath. 

Does anyone have any questions for us about anything we've blogged or posted?  Or is there something we haven't touched on that you're curious about?  Some have asked us about laundry.  There is a washer and dryer available to us (first come first served).  It's actually next door to Eli's room so we can hear if it's available or not.  The hospital even provides some of their detergent, but it leaves clothes very stiff.  We bring some of the Purex detergent/fabric softener sheets in one and use those.  Anything else people want to know, whether it's about Eli, Zachary, us, etc?  We'll try to answer anything we can.

Thanks again for following.  We're hoping for good news today and some increase in his energy.  Eating some solid food and "meat!" has already made a difference!

Tuesday, April 23, 2013

Day 6, Post Op Fontan (April 23)

Eli did get a good night of sleep last night.  He's still laboring to breathe at times, but it's so much better than yesterday!  The nurses draw off his chest tube every four hours.  The amounts that have come off have varied.  It's usually 20-35cc but once it as as low as 0.6cc!  The chest tube doesn't seem to bother him.  I got a picture of it today but I'm not loading pics to the blog right now.  It's been a long day. 

Eli was very fussy most of today (which is a right he has earned!).  He's tired of being confined to the bed but doesn't have the energy to get up & do anything.  We were going to take a wagon ride but didn't find a chance between doctor visits, medication times, and morphine stupor :(  Maybe in the next day or two.  I did get to hold him for a while this afternoon and he fell asleep on me ♥  We're allowed to hold him, but honestly we don't much because it hurts him. 

This evening he has been much more comfortable and therefore pleasant.  He was allowed to eat solids today and did have a few bites.  He's had several milk bottles and some juice from the sippy.  He's getting a tube feeding tonight just to get some extra calories to him to help with healing.  That will stop at 3am and he'll be allowed clear liquids (if he even wants anything then) until 6am.  After that he's NPO (nothing by mouth) until after the PICC line placement.  That will be done in the radiology department and he will be sedated again.  His second time in three days, third time in a week.

We spoke to the pediatric infectious disease specialist this afternoon.  Right now Eli is getting Vancomycin and Ceftapime.  After more info comes back from the blood cultures, he may change antibiotics to more specific treatment.  His main concern right now is that Eli's central line culture and his peripheral culture came back positive, so this is in his blood.  His blood travels through his heart.  His heart was just cut on for surgery six days ago.  The heart doesn't have skin over it like the outside of our bodies so this infected blood is passing over recent wounds.  If the infection settles there we could be in the hospital for weeks so Eli can receive proper antibiotic treatment.  There is still the possibility that the antibiotics he's been on will have already worked some magic and we don't have a lot of "tweaking" to do. 

Prayer Requests:
- for Eli to have another good night of sleep.
- for Zachary to get up and off to school in a good mood in the morning
- for Eli's cultures to come back with better news than we expected and for him to already be on the mend!
- for Eli's PICC line placement and recovery from the sedative to go smoothly
- for Eli's heart buddy Caleb who has been at Riley on the transplant list since November.  Coincidentally, Caleb is getting a new PICC line tomorrow morning as well, so please include him in your prayers for an easy time getting that put in.

Thank you all so much.  I'll provide updates as I can Wednesday, but as always, don't assume no news is bad news.  Assume it's that we get to hold or play with Eli instead of watching him lay in bed with no energy.

Monday, April 22, 2013

Day 5, Post Op Fontan (April 22)

After yesterday's events, Eli started the night by sleeping really well.  By the early morning hours he was grunting a lot with his breathing.  Right before shift change (7-7:30am) we noticed how cold his arms & legs were, yet his head was soaking wet.  His temperature was normal.  I questioned the night shift nurse about his temps through the night and she said all were within normal limits, but she too had noticed the sweating.  When our day shift nurse came on, she was one we remembered from previous visits.  She was immediately concerned with his breathing because it was so labored.  Even more so than when I had talked to the night shift nurse about his temps and medicines. 

We knew cardiology was going to see him (they do everyday) but she, Bryan and I felt they should get an update about him in case they wanted to see him sooner.  When she called, Sara (the surgeon's nurse practitioner) was just getting report on Eli about yesterday.  Our nurse simply said, "I don't like how hard he's working to breathe" and they said they'd be right over.  About 3 minutes from when the nurse left our room to call them, Sara, Dr. Abarbanell, and a cardiology resident walked in to check him out.  They agreed he was working too hard and too many things weren't adding up. 

It was decided to obtain more blood cultures (one from his central line like they did yesterday and one from a fresh draw in case the central line is harboring some bacteria and causing the problem), more blood work, a urinalysis, and a urine culture.  After all that was done then they were starting antibiotics (Vancomycin & another one I don't remember).  Once the cultures come back they'll know if they need to treat him differently but at least they've started him on something.  They also obtained another chest xray to compare against yesterday's as well as an abdominal xray.  Both thought his abdomen was distended today and wanted to make sure he didn't have a blockage.

The abdominal xray showed he had a lot of gas in his bowels.  We figured that out before the xray was complete!  He hasn't pooped today, but he's passing a lot of that gas without difficulty.  Yesterday's chest xray showed a pleural effusion.  Today's showed that it was a lot larger.  Eli had been drinking some milk & juice, but that was taken away and we were told he needed a chest tube so he couldn't have anything for four hours before sedation.

At 1:30 they took us down to the PICU to an empty room.  The nurse who assisted Dr. Abraham with the chest tube had just taken care of him on Friday and was very surprised to see him in this trouble.  She was even more surprised to hear about yesterday.  The PICU hospitalist gave Eli some medicine to put him to sleep for a short time and Dr. Abraham inserted the chest tube and drew off fluid.  He removed 80cc (just shy of 3 ounces) from the right side of Eli's chest.  Then he anchored the tube and they stopped the medicine that had him asleep.  Start to finish, the procedure was eight minutes.  As soon as we saw him we knew he felt better.  His breathing wasn't labored and his color was pinking up. 

He spent a little over an hour in the PICU area as his recovery progressed.  The nurse pulled 10cc more out of his chest tube to make a total of 90 (right at 3 ounces).  Dr. Abraham said Eli would have the chest tube in for at least a couple days.  There's also no guarantee he won't need one on the other side, but as of now he does not.  Eli was brought back up to his room on the general peds floor.  He's been drinking juice and can have some milk soon.  He is very sleepy and still in pain so his Tylenol, Toradol, and morphine are pretty routine for him.  His oxygen sats are 98% on 2 liters and that will be weaned through the night or tomorrow. 

In Zachary news, he's been in Washington since Friday night.  He spent the weekend with Bryan's family and we heard he helped with some landscaping.  I'm pretty sure that means he was fascinated by the wheelbarrow since we don't have one!  Yesterday he went on a treasure hunt Bryan had made for him and got to dig up a treasure box we had filled with goodies.  Today was his first day at preschool since last Monday.  Aunt Kendra spent the night at our house with him and my mom took him to school.  Mom told us he had a rocky morning but by the time he got to school he was smiling.  After she picked him up he talked her into Mr. Gatti's for lunch (complete with game room time of course!).  They played in our yard for a while after that and he's now spending the night at her house. 

We found out about a good deed done for us.  Our neighbor across the street mowed our yard.  That's not a little job because we've got just under an acre.  It's also been a while since we've picked up limbs, etc so he had quite a job.  I'm pretty sure he doesn't read this, but just in case THANK YOU!  

Bryan and I are exhausted.  Bryan's allergies are really bothering him and neither one of us is sleeping very well.  These past two days have been very trying for us.  We know what happened yesterday could have turned out very badly and we are incredibly lucky Eli is still with us.  Thank you for caring enough to read and stay updated about all of us.  Thank you for the prayers.  Here's hoping & praying that tonight is easier on Eli!

Day 4, Post Op Fontan (April 21)

About 2:10am Sunday morning I woke up & heard Eli grunting with his breathing.  After looking at the monitor, his heart rate was up to 130s-140s.  I called the nurse for some pain medicine, which was given shortly after.  His breathing was still labored, but not grunting after the morphine had time to take effect.  For the next two hours his heart rate fluctuated between 120 (his paced setting) up to low 160s.  It was strange because it varied so much.  He had been on .25L of oxygen but was now requiring .5L just to stay above 92%.  Eli was awake and tolerating it, but it was just strange because he hadn't had any issues like that before.  Dr. Abraham was notified about an hour into the episode and said to call back if it got worse or wasn't any better within an hour.  When that time was up, Eli was doing better.  The heart rate was still fluctuating, but it was continually between 120s-140s and trending downward.

As the morning progressed, he just wasn't himself.  We kept trying to work on his pain control because we believed increased pain was causing the higher heart rate and labored/grunting breathing.  We also thought maybe he needed to poop so a suppository was administered after 4pm to help that process along.

Around that time his nurse noted a his temperature was up to 101.2.  That could also explain the rise & fluctuations in heart rate.  He was already getting Tylenol every six hours for pain.  Another pain med he was getting almost every six hours was Toradol, which is like Ibuprofen so it also had fever-reducing capabilities.  We weren't sure what else to do for the fever right then.  The nurse went out to look over his chart (and if she's like me, to ask the other nurses for input before calling the doctor!)

About 4:50 pm, Eli was really fussy, so I stayed beside his bed holding his hand and talking about the movie he was watching.  His heart rate was still fluctuating, but suddenly the monitor showed 180 then 225.  It stayed in the 210s-220s for the next several "flashes."  I just kept talking to Eli while I checked his monitor stickers, hoping one was off (even though I knew if one was off it wouldn't display those numbers).  While I was doing that, three nurses came into the room including ours who was on the phone trying to page the cardiologist (Dr. Abarbanell who had seen him every day since Friday and was the doctor doing echos during his surgery Wednesday...she was pretty up to date with him!).

Eli had a prolonged run of super ventricular tachycardia (SVT).  When I looked up a definition of SVT so I could explain it better, one of the words used to describe it was "ominous" which was very appropriate.  Eli's heart rate was staying around 200 beats per minute (remember, one week ago his resting heart rate was around 70!).  He was awake and upset but not crying.  His blood pressure was stable but his oxygen level was dropping.  He went from requiring .5L to a 2.5 liters just to stay around 90%.

Dr. Abarbanell was on her way, so a hospitalist and a resident came to check him out and see if any intervention needed to take place before she arrived.  The crash cart was outside his door and the nurses were drawing labs from his central line (thank God that was still there!).  I had already cleared the bed of all our personal stuff except for Eli's pacifier and his stuffed Pablo (character from The Backyardigans, who actually went into surgery with Eli on Wednesday).  A 12-lead EKG was obtained to try and identify the rhythm better because it didn't look like "classic SVT" on the room monitor.

In the middle of all this, Dr. Amy (our family doctor) arrived.  She had told me before surgery she was going to be in Indy this Sunday and wanted to visit Eli.  It's just miraculous timing that she was there with us during some of those scary moments.  It definitely helped calm us (a little). 

Dr. Abarbanell got here, examined him and decided to give a dose of Adenosine in hopes of breaking the rhythm.  This is a drug found on the crash cart.  While they prepared to give him the medicine I got on Facebook and sent out an urgent prayer request.  I didn't want to scare anyone and I didn't know for sure what was happening, but we needed those prayers!  While the nurse prepared the Adenosine, a respiratory therapist got the EKG machine hooked up again to more closely monitor his heart rhythm as they gave him the drug.  Three more nurses came in and stood ready to help if something unexpected happened.  They wound up giving two doses of Adenosine and nothing happened.  His rhythm slowed slightly while the drug was going in, but it rose back to the 200 level.  At that point, Dr. Abarbanell said she didn't know what rhythm it was and wondered if it was a pacemaker issue since the medicine didn't really do anything for him.  Someone was already on the phone with Dr. Steinberg, the pacemaker guru of the group (don't tell him I wrote that).  He was on his way to work on the settings.

While we waited for Dr. Steinberg's arrival, Dr. Abarbanell started an echo to confirm no fluid around the heart or lungs which would be causing Eli's distress.  The only thing she saw was a small pleural effusion (pocket of fluid) at his right lung which we already knew about from chest xray earlier in the day.  With the echo, she did pick up on a rhythm but wasn't sure if it was right or not.  She saved the screen to show Dr. Steinberg.  When Dr. Steinberg arrived he had the most serious look on his face that I've ever seen.  He had a machine that he could use to read and manipulate Eli's pacemaker.

He asked a few questions while he worked but basically studied readouts and pushed buttons.  He and Dr. Abarbanell discussed things and we listened, but couldn't comprehend much of it.  Eli was still awake, good blood pressure, and pooping through this (his laxative worked...what timing!)  After several minutes,  Dr. Steinberg said to call ICU & get a bed ready for Eli.  Dr. Abarbanell went out to do that while he came around the bed to talk to us. 

He told us Eli's heart was in a very fast rhythm that wasn't responding to drugs or pacemaker manipulation.  Our next option was to go to ICU, sedate him, and cardiovert his heart rhythm.  Cardiovert means to shock the heart.  They were going to have to shock his heart to break the "cycle" it was in because even though Eli was tolerating it pretty well, he wasn't likely to for much longer.  As he was starting to tell us why he thought Eli was in the rhythm to begin with, he noticed a change on the monitor.  Eli's heart rate had dropped from 200s to 180s.  Over the next minute or so, his rate dropped down to the 90s (I think, I was actually lightheaded at this point).

Eli converted on his own.  That's not exactly true, he had help, but he wasn't shocked to cardiovert. 

Dr. Steinberg did some more readouts and set Eli's pacemaker at 130.  After waiting nearly 30 minutes to see if he'd stay in that rhythm, the doctors started to pack up and get ready to leave.  They spent a fair amount of time talking to us about why they think it happened and what happened.

Eli's heart is not normal.  Most of you reading this have two atria (upper chambers) and two ventricles (lower chambers).  Eli has one of each.  After all these surgeries, his atria have been combined into one atrium.  To do his Fontan and mitral valve repair, Dr. Abraham had to make several incisions in Eli's atrium.  These are irritating to the surrounding heart muscle and tissues.  Despite how well Eli had been doing on his other post op days, his heart was irritated and it was more than we knew.  We found out.  All three doctors (Dr. Abarbanell, Dr. Steinberg, and Dr. Abraham via telephone) said they didn't really expect Eli to do this, but it wasn't surprising to them considering the number of incisions that had to be made during surgery.

Here's the rundown of what Dr. Steinberg figured out from the pacemaker monitoring and Dr. Abarbanell from the echo:
- Eli's heart went into a rhythm called Atrial Flutter.  It's where the atria aren't contracting, they're quivering which results in a nonfunctional beat.  His atria were quivering at a rate of 400 beats per minute.  That electrical impulse was conducting to his ventricles in a 2:1 ratio, meaning for every two atrial beats, there was one ventricular beat.  That's why we saw the rate of 200 on his monitor. 
- Dr. Steinberg drove the pacemaker to beat even faster.  His goal was that it would "confuse" the electrical activity of Eli's heart and break out of atrial flutter.  It worked and he went into atrial fibrillation.  That's also not a desirable rhythm, but it's often easier for someone to break out of.  At the very least, the rate may be slower.
- Cardiovert means to shock the heart.  The purpose is to stop the rhythm it's in and hope when it restarts, it is in a new rhythm...preferably normal sinus rhythm.  Eli did not have to be cardioverted, he converted on his own.

The doctors obviously couldn't guarantee it wouldn't happen again, but they didn't think it would.  They were confident enough to leave him on the general peds floor with monitoring throughout the night, with orders to move to ICU if it did happen again.  In comparison with the events of yesterday afternoon/evening, Eli's overnight was uneventful.  Both doctors agreed that as his heart healed from surgery, the risk of recurrence was less and less.

How is Eli?  Considering all that happened, he was doing great.  After the excitement settled down he was actually talking to us.  I got off the phone with my sister and Eli said, "I-ya!" which is what he calls our Ashleys.  I asked if he wanted to talk to her and he said yes, so I called her back!  He told her hi and when she asked what he was watching he said Scrat (from Ice Age).  He slept well for a long time and we were better at staying on top of his pain.

It shouldn't be a surprise that he slept well.  He started with the rate of 200+ around 4:50pm.  He converted around 7:30pm.  That means that for over 2 1/2 hours, his heart was beating at over 200 per minute.  If you want to compare that to something, he basically ran a marathon from his bed with a his half a functional heart that was operated on only four days ago.  I challenge you to show us someone tougher than our kid right now.

Thank you for the prayers.  When I finally got a chance to get back on Facebook last night to update our request for prayers, I was in disbelief at how many people liked, commented and shared our status.  Eli's MVPs Facebook page gained about 20 new members last night and I can't even imagine how many prayers were generated by all of you.  Thank you, thank you, thank you!  Even though we couldn't update throughout the ordeal, we knew just letting people know we needed prayers was going to help.  It certainly did help us to know that even though you weren't present, we weren't alone.  And for part of it we weren't alone because Dr. Amy was with us.  What a blessing!

We think the doctors, nurses, aides, and respiratory therapists did a great job.  Everyone was calm and did a great job of masking the scary adrenaline rush I know is felt in situations like that!  Efforts were made all along to make sure we understood what was happening as best as they knew, what they were doing, why they were doing it, and they checked in with us to make sure we were as okay as the situation allowed.  Bryan and I were able to get some sleep, but even though El slept well for the first part of the night, the early morning hours weren't great.  Monday's events will be covered in a later blog post.

Again, thanks for reading and for all the support!

Sunday, April 21, 2013

Day 3, Post Op Fontan (April 20)

Eli had a little more issues with pain control today, but that's because he's getting back to his former wormy self.  Because he's moving around more, it hurts more!  In total he's had four doses of morphine today in addition to Tylenol and Toradol.

The plan was for him to be moved out of the PICU to the general pediatric unit.  Dr. Abraham came and pulled his JP drains.  I've seen them come out of an adult before and it's amazing how much is coiled inside the chest.  Today I watched him pull Eli's out (after a premedicating dose of morphine because it HURTS!) and was astonished to see that the drains in his little chest weren't much shorter than the adult I had previously seen.  It was every bit as long as my hand.  Eli was upset when it happened, but he got over it pretty quickly and got happy when he snuggled his stuffed animals.  A little later, a look at his labs revealed he needed to receive a unit of blood.  His hemoglobin & hematocrit were a little low.  The cardiologist said it wasn't low enough to be very concerned about anything, but a single ventricle baby would take longer to bring those levels back to normal, so let's just give him a boost.  He got 4oz over an hour and tolerated that just fine.  His PICU nurse (who kept calling Eli her boyfriend!) kept him there until long after the blood went in, just to be on the safe side.  Everything was fine and we were transferred about 6:20pm.

Right after we got to our new room, Bryan's sister Ashley came to visit.  She brought some pizza casserole, garlic bread and brownies.  Mmmmmmm.  Then my sister Ashley came.  She brought two large slabs of bbq ribs, potatoes, salad, and meatballs from a party she & Josh had just left.  They had a lot of food there and told Ashley to bring some to us.  So now we are set for food for the next couple days!  We ate a little bit of everything and are looking forward to lunch tomorrow!

Eli wasn't sure about his new room at first, but he's doing well now.  Bryan and I can both stay in the room with him (in the PICU it's only one parent in the room per night).  There's a pull out couch that will hold our four long legs!

Zachary had his first tball game of the season.  We heard he played first base and even made a couple outs.  He also led off for the Angels had a hit and scored their first run.  Zachary was excited.

Thank you all so much for the prayers and support.  Eli is definitely feeling better and acting more like himself.  Good night, everyone and I'll update as events occur tomorrow!

Saturday, April 20, 2013

Days 2 & 3, Post Op Fontan (April 18 & 19)

Eli got some good sleep Thursday night but not a lot.  His blood pressure was kind of low so the only continuous pain medicine he was on was stopped.  He did pretty well, but we had to find other ways to control pain without knocking him out.  Also, he hadn't peed since his urinary catheter was removed. He was straight cathed twice but was peeing on his own by Friday morning.  During the night Thursday, his arterial line was removed (an IV that's in an artery instead of a vein, used for obtaining blood gases to see how well his body is adjusting.  It also has a sensor that will monitor his arterial blood pressure).  They also took out an IV that was in the back of his hand.

As of Friday morning, he was down to two dressings (one over the incision on his chest and one over the incision for his pacemaker), two JP drains (draining blood from the surgical area), the central line in his neck, the heart monitor, and his oxygen.  That isn't much at all.  In fact, the central line was broken down and made smaller because he only had one drip going through it (his Milrinone). 

After rounds on Friday, it was decided to start him on Enalapril, a heart medicine that can be taken orally or go through his feeding tube.  Because of that, he could be taken off the Milrinone drip.  For a long time yesterday, Eli was not hooked up to any medicines!  He now has IV fluids going through his central line because he doesn't want to drink anything yet so they're just giving him some fluids.  Eli is also getting a slow & continuous tube feeding of Pediasure with fiber.  His cardiologist said it's not a big deal that he doesn't want a bottle or sippy yet, but if he's got the tube available we may as well provide some nutrition as long as he can tolerate it.  So far so good!

The cardiologist wanted an echo yesterday to see how his heart was functioning with the Fontan and repaired mitral valve.  The valve is leaking some, which we knew it would (it was repaired, not fixed!), but she was really pleased with what she saw.  

His pain meds were changed to Tylenol and Toradol.  Toradol is an NSAID and not often used this soon postoperatively, but if Eli is given Lortab he has excessive vomiting, so we're trying the Toradol.  Throughout Friday, the combination of Tylenol & Toradol seemed to work well.  Well enough that he sat up in bed (propped on pillows) most of the day while watching movies.  Friday night he was pretty fussy for Bryan.  Saturday morning we started using some morphine in addition to the Tylenol & Toradol.  He needs something a little stronger as he's moving around more, sitting up more, and trying to cough more to break up the extra "gunk" in there.  He's chilled out in his bed right now watching Mickey Mouse Clubhouse. 

The hospitalist who's on today just came in to examine him.  He (like all the others) are very pleased with how well Eli is doing.  So pleased in fact, that we've probably spent our last night in the PICU!  No orders have been made yet in regards to a transfer to the general floor, but it will likely happen later in the day.  I know it's a great thing to get discharged from the PICU, but there are so many nurses here we really love.  But now we'll get to go to another floor where there's more nurses we really love!  This is a little bittersweet because, unless something happens, there are no more surgeries scheduled.  We won't be back here,so other than updates I send them over the years, this is goodbye!

Obviously all the prayers for Eli are working!  Thank you all so much!  We are very fortunate and blessed.

Thanks for the cards & packages we've been getting for the boys.  It's amazing how you all pull together for us :)  We've also had a lot of people ask us about ordering tshirts.  Yes, we can still get them!  I won't be placing an order for a couple weeks, but you can message your order (or any questions) to us via FB or through elismvps@yahoo.com

Friday, April 19, 2013

Fontan Photo Gallery

This is a bunch of pictures we've taken so far.  They range from the night before his surgery (Tuesday the 16th), the day of surgery and thus far into his recovery.

***Warning -- some of you may not want to see some of these pictures.  There are some of his chest where you can see the stitches holding his drainage tubes in place, the tubes themselves (including the bloody drainage), some dried blood on the dressing covering his chest incision, and several have a drugged up baby in them.  We're not trying to gross anyone out.  The description sounds worse than seeing the pictures themselves! The first few are okay, I'll let you know when you're about to see something listed above. 

This may be the last good picture we have of his dark lips!  This was taken in Aunt Ashley's bed after the boys' baths Tuesday night

The three of us in the pre op area the morning of surgery

So many people posted pictures of them in their Eli's MVPs shirts & we had to return the favor!  My mom said we looked like a bunch of m&m candies!  We certainly had a lot of attention from the shirts.  Thanks to our surgical liaison for taking the time to help us out by snapping a pic of us.

We had to include a silly face picture!

Zachary playing his Leapster while we waited for Dr. Abraham

A post op Eli is in some of the following pics.  I know some don't want to see Eli in this post op condition.  If you're sensitive to that, turn back now!  Also, there are some of the things I listed like drainage tubes & dressings.  Again, if you're squeamish, turn back now!

Some of his post op equipment.  He probably looks small to most of you, but to us he looks huge in this bed because we've seen him in it when he was MUCH smaller!

The tower of drips.  These were the medicines keeping him alive and sedated.  He was on Amiodarone, Dopamine, and Milrinone (those three are for his heart function and/or rhythm), Fentanyl and Precedex (for pain control/sedation), and IV fluids continuously.  Those were all going through a central line.  These were just the continuous meds, he also had regularly scheduled ones going through other IV sites.

Eli's vital signs (about 9pm the night after surgery).  The green line is his heart rhythm (the white spikes between the green ones show when the pacemaker fires.  The yellow is showing his respiratory rate.  The blue shows his oxygen saturation...do you read that 98?!?!  That's right, before surgery his sats were mid 70s and now they're upper 90s!  The white numbers are his blood pressure taken externally (the normal way you're thinking of, with a cuff on the arm or leg).  The red line is his arterial blood pressure.  It's taken by a sensor placed in an artery in his wrist.

He looks so long!  If you look at his head, on his right you'll see a "stick" with four prongs coming off it.  That is leading to the connection for his central line, which was placed in his neck.  The brown rectangle on his abdomen is covering the incision for his pacemaker. 

You know how some people sleep with a foot sticking out from under the covers?  Well, Eli kept sticking his cute little toes out of the crib.

His favorite comfort item -- Daddy's chin.

We're in Room Nine in the Pediatric Intensive Care Unit

Does anyone else remember him laying in his hospital crib with his hand over his eyes?  We do!  He did that when he was a little, little baby!

Zachary brought Eli a plush dinosaur from the Children's Museum.  He got himself a pair of dinosaur chopsticks and had to use them to eat his Arby's fries. 

His o2 got up to 100%  That's actually a little too much for his reconstructed heart.  This was a temporary number for him & we just thought it was cool because he's probably never had an o2 of 100!

We brought a lot of movies to keep Eli entertained.  We thought we'd use the tv in the room but the Child Life Specialist came in & said she'd bring us a portable DVD player so he didn't have to look up toward the ceiling.  The dinosaur watching the movie is what Zachary brought to Eli from the Children's Museum.

Eli's hospital band is on top.  Bryan and I are each wearing one as well.  The smaller band on the bottom is his blood bank identification number.

A little closer photo of Eli the night of surgery. 
Bryan hid in the bathroom to eat a cereal bar so Eli wouldn't see him.

Eli sat up for a long time in his bed today.  He watched DVDs from 10am to 8pm....with several naps mixed in!

Of all the echos Eli has been through in his life, I've never gotten a picture of him getting one until now.  His head is off to the side because he's trying to see his movie around her arm.  The screen at the top shows one of the views of his heart.  I can't read an echo, but I believe this view is of the mitral valve that was repaired in the first part of Eli's surgery Wednesday.  This picture also shows some of the monitor wires attached to him as well as his right JP drain tube.

Thursday, April 18, 2013

Day 1 Post Op Fontan, 04/18/13

Eli had a very good night.  He was easily agitated (again, agitated = pi**ed off).  Some of that was due to the anesthetic wearing off.  It made him very jumpy.  Sometimes, even when he was sleeping well, his body would twitch or jerk and that would hurt and wake him up which resulted in a very sad cry.  We had his lullaby cd playing non-stop from 7pm last night to 10 this morning.

So far today he has been seen by a cardiologist, a cardiology resident, the surgical nurse practitioner, the surgeon, the hospital intensivist, and another resident.  Of course none of those exams coincided with the others so he's been examined by six doctors so far today plus his nurse has to examine him every two hours.  But that's why we're here and everyone is pleased with how he's doing.  His nurse today is Brittni, who is probably our favorite nurse through the past two and a half years.  She is so excited to see him and can't believe how much he's grown from a baby into a little boy.

Chest x-ray this morning showed some fluid on his lungs.  That is not surprising at all and a diuretic has been started to help get rid of that fluid.  Eli's face, legs and feet are swollen too and you can hear crackles in his lungs.  The Lasix should help with all that.  He'll have another chest xray tomorrow morning to show if the diuretics are working.  If not, they may have to take other measures (for example, a chest tube to drain the fluid from the lungs). 

His oxygen has been weaned down to .25L and his sats are low to mid 90s.  If the oxygen is turned off he drops to the low 80s so for now he'll stay on oxygen.  His fingers and toes are still very pink which is just amazing to see.

Eli's pacemaker is set at 120 beats per minute.  After surgery it was 150 bpm, but was turned down after his other vitals stabilized.  Dr. Steinberg will keep adjusting it over the next few days to get the right settings for Eli. 

Eli's urinary catheter was taken out this morning and he was able to get rid of the machine that monitors oxygenated blood flow to his brain and kidneys.  Two of the IV drips he was on have been stopped.  One was to help his blood pressure, which has been stable.  The other was one of his pain meds.  He's very sleepy today and not waking up much, so they want him to start waking up a little.  He's still got one continuous pain med through his IV and then some we can give as needed.  So far we haven't needed to use that one.  Slowly he's getting rid of some of the equipment

He's been doing so well that there's actually talk of him being moved out of the PICU tomorrow or Sat.  There are many things that have to occur before that move happens, but just the fact they can even think about moving him from the PICU is exciting.  

If anyone is wants to send cards to the boys, all four of us would love it.  If you already have our home address, feel free to use it.  Message me via email or FB if you want it, or send it to

Zachary and/or Eli Veale
201 East Main Street
Suite 401
Washington, IN  47501

Thank you all for your prayers, messages of encouragement, and concern.  We feel so loved!