Monday, July 2, 2018

We Owe his Liver an Apology

On Tuesday, June 26, Eli and I left for Indy about 4am.  He had to be checked in really early for a paracentesis.  Off topic, but that day was our 19th wedding anniversary (awwww!)


We were so young!  Happy Anniversary!

So we arrive and check in.  He did great getting the IV started and we went to the procedure room. He was given Ketamine for sedation and they got started.  Because we don't want to remove a lot of fluid at once and risk throwing his blood pressure off, the doctor only wanted to remove 2 liters from Eli.  That was easily done and he was stable throughout.  He was transported up to the third floor (our home at PMCH) and got settled in his room, all by 8am.  Eli did great and was slowly coming out of his sedation trance.  Soon he was asking for food and drink, then was up playing.  His blood pressures were great all day long.  Overall, he was doing wonderfully.  So well, in fact, that by late afternoon, the doctors said he could go home instead of spending the night which was our original plan.  So the suitcase went back to the van, the IV came out, and we were waiting for discharge paperwork.  Then the GI doc came in.  Plans had changed.  All because of a picture I took while Eli was getting his paracentesis done.  I took a picture of the fluid that was drained out of him.  It didn't look like it should (should be clear, kind of yellow).  Eli's looked like a thick, tan formula was poured into the container (there's a picture at the end of this post if anyone is curious what it looked like).  No one had mentioned that it looked that way before.  No tests were ordered on this drainage since it was his fourth in a six weeks.  When we got up to his room, I started asking questions about the fluid color and consistency from his previous paracentesis procedures.  It did not look like that.  My picture circulated from the Infectious Disease and Cardiac NPs, to one of Eli's cardiac doctors, to his GI doctor.  They all thought the same thing:  chylous (I'll explain more about that further down).

Because no samples were taken, everyone agreed Eli needed another paracentesis to obtain a sample so they can confirm.  So Eli was scheduled for a paracentesis the next day.  We were not going home, but that was okay because we had originally planned to stay the night anyway.  Knowing there's a specific diet that goes with the diagnosis of chylous, I asked the GI doc if he had any dietary restrictions for supper that night because his aunts were coming and brining food.  She looked at him as he absorbed the news that he was not going home until the next day at the earliest, knowing he'd have to have another IV and more sedation.  She looked right at me and said he could have whatever he wanted that night!  So he ordered a Happy Meal...then proceeded to eat not only that, but half of my sister's Quarter Pounder as well!  His aunts also taught him a new trick with his French fries:

Sticking a French fry out of the hole left by his latest lost tooth!  Goofy kid!

The next day Eli was busy all morning in the playroom.  First they had play doh time.  He mixed play doh and glitter and used hospital equipment {medicine cups, oral syringes, emesis (puke) buckets} to play with the play doh.  He had a blast.  Then the Civic Theatre came for interactive storytime.  He really enjoyed that as well.  It helped pass the time until 12:30 when he went for the paracentesis.  He got another IV started and did great again with the sedation medication.  The doctor drew off a large syringe to be sent to the lab.  Then he drew more fluid off Eli.  His blood pressure was dropping some so the sedation nurse said it was time to stop.  Another 1.8 liters was off his belly.  When we left the procedure room Eli's BP was 90/40.  It was taken as soon as he got back in his room which was less than five minutes later.  In those few minutes it had dropped to 70/32.  Fluids were immediately started.  Fluids were going, but they had not had time to bump his pressure up and he dropped as low as 40/20 before coming back up.  Of course I was concerned, but I really wasn't worried.  He had just had 4 liters of fluid taken off in just over 24 hours, it made sense that his body was redistributing  and adjusting to not having the extra pressure of fluid on his belly.  As his blood pressure was going down, the sedation nurse practitioner, her nurse, the unit nurse practitioner, the hospitalist, and Eli's nurse were all present.  We just had to keep monitoring him and wait for the IV fluids to do their job.  And they did.  Soon he was back up to 80s/40s where he stayed most of the evening.  He woke up well from the sedation and was ready to eat.  The art cart came by and Eli received a bunch of new goodies (colorworks pens and book, glitter glue, a sketch pad, colored pencils, and modeling clay).  Soon after he was visited by the book cart and selected two sticker activity books.   We didn't have any visitors Wednesday night which was fine with me.  I was exhausted and wanted to get him to sleep early so I could sleep.  There was a real chance we were going home the next day.  We did wind up getting discharged, but it was late afternoon when we left.  Throughout the day, his blood pressures were hanging out in the 80s/40s.  He was very active, playing, eating well, being silly, but his numbers were lower than his normal.  They came up some in the afternoon and cardiology cleared him for discharge.  In hindsight, I realize his medication schedule in the hospital was different than the one we use at home and the way some of his meds were given affected his BP.  Now we know better for next time!


Now for some questions:

What is chylous?
Chyle (pronounced like the name Kyle) is something we all have in our lymphatic system.  It is a milky bodily fluid consisting of lymph and fats.  The lymphatic system carries the fluid to our veins where it returns to the bloodstream.  This fluid helps with immune function and fat and protein transport.

Why is it in Eli's abdomen?
Apparently there is a leak in Eli's lymphatic system.  It is draining chyle in his abdominal cavity which then must be drained off every so often.

What do we do about it?
Immediately what we do is test the fluid and wait for confirmation that the fluid drained off his belly is chyle.  We also start Eli on a fat free diet.  Yes, fat free.  Not low fat, not low saturated fat, NO FAT diet.  He is allowed 3-5 grams of fat per day.  That is not much.  The goal with the fat free diet is to slow the leak down so he doesn't have to have a paracentesis as often.

The next step is to consult with a doctor who specializes in surgical repair of the lymphatic system.  That is not a common specialty.  No one at PMCH does that.  We are waiting for a referral to one of the top children's hospitals in the nation.  Eli will be referred to Children's Hospital of Philadelphia.  We don't know how long it will take to gather his pertinent records or for the team at CHOP to review them.  We don't know if we will be going in the next couple weeks or if it will be a month or two.  We don't know how long we will be there when we do go.  All that will be figured out soon.  Bryan and I haven't talked a lot about what we'll do.  All we've decided is that we will opt to drive rather than fly.  Having our own vehicle while there and not worrying about having to change flight plans due to a change in discharge will be much easier.  I have several heart momma friends on FB whose kids have been treated there so I will be reaching out to them for guidance.  I also have an aunt and uncle who live close to Philadelphia so I can reach out to them for support as needed when we are there.

From looking at CHOP's webpage, I have gained a little knowledge of what they may do for Eli.  Of course each case is different and we all know Eli's body does things its own way, but to have a general idea is helpful to me.  It looks like the procedures they do to repair a leak in the lymphatic system are interventional procedures, which means they aren't big huge operations.  That is comforting.  It also looks like (again, in most cases!) the long-term outlook is good.  I'll type exactly what the website has in that section:
"The long-term outlook for many patients with chylothorax is very good.  Nearly all patients with thoracic duct trauma can be cured.  Experts at CHOP have also seen encouraging results when treating patients with other types of chylothorax.  Treatment often provides a long-term cure."
***clarification:  Eli does not technically have chylothorax which is the accumulation of chyle in the chest cavity, but from what I've read, the accumulation in the abdominal cavity is treated the same.  The accumulation of lymph can be in the chest, abdomen, or other body cavities.

What caused the leak?
We don't know.  It's most likely a leak of his thoracic duct (the main lymph vessel).  That can happen because of an injury to the thoracic duct (such as being nicked during a surgery), congenital abnormalities (meaning the patient was born with issues of the thoracic duct), or excessively high venous pressures due to heart failure, pulmonary hypertension, or congenital heart surgery.

Hasn't he dealt with this before?
Actually, yes.  Eli had chylothorax after his third heart surgery, the Fontan.  He had several pleural effusions (pockets of fluid) in the lining of his chest wall and the fluid drained off had chyle in it.  It was treated with a very low fat diet and time.  It's not unusual to have it happen after heart surgery, especially in a young child.  There are many, many vessels in a very small space.  He recovered from that and did well.  We have no idea if the two are related.  The fluid drained off Eli's abdomen last month wasn't the same appearance as what it is now.  Many tests were run and I'm pretty sure they tested for fats in it.  If it were positive, his treatment would have been different a month ago.

What about his liver?
Apparently Eli's liver is not the criminal we were making it out to be.  His liver does have some damage.  He does have liver congestion and some fibrosis, but they are not believed to be the cause of all this fluid.  Even when we blamed the liver for it last month, it kind of made sense, but there were still holes in that theory.  Too many of Eli's other test results were normal for it to solely be the liver.  Chylous makes more sense on many levels.

How much fun is a no fat diet?
Well, it's not horrible!  Like I said before, the no fat diet is to slow down the leak, it will not stop it.  Eli is also on a different formula for his nighttime feeds.  That way he can get enough calories without the fat.  Overall, Eli has been adjusting well to the diet.  We're all trying to follow it with him, but we need to make sure we still get our fats, especially Zachary and Charlotte as they need them for healthy growth.  We've scoured our local grocery store and two local Walmarts for options.  We have a lot of turkey and chicken.  Since we can't use any oils or butter for cooking, I've used chicken stock a lot.  There are many things fat free that I didn't realize and chicken stock is one of them.  Last night we had grilled turkey cutlets with bbq sauce for dip, mashed potatoes made with chicken stock and skim milk, gravy, sautéed zucchini, mushrooms, cabbage, and brussels sprouts (sautéed with chicken stock, salt and pepper), and corn on the cob.  The bbq sauce and gravy were the normal ones we use and they're both fat free.  Snacks have been hard.  He loves salsa, but we couldn't find a fat free chip for it.  There were many 'low fat' options, but those still had 5-10 grams per serving which is two or three days of his allowed amount!  We found some soft tortilla shells that are 0.5g each.  After going in the toaster for a few minutes they're crunchy like chips and he is happy with them!  He also eats carrot sticks or fat free pretzels with his salsa.  We're working on more recipes and snack options for him, but we've done well so far.  Did you know you can make a pretty good potato chip in the microwave?  Thinly slice a potato, season it, and put it in the microwave on parchment paper for 6 minutes.  We've all liked those!  So thank you to all you sweet people who have recently sent us gift cards for Walmart!  I just used those to buy a lot of fat free items to get us started on this journey.  Please know your generosity went directly to providing something that would've been an expensive hit to our budget and is necessary for Eli.  Thank you!

What about his pacemaker?
Well, it's cancelled.....  Priorities, you know?  This lymphatic problem has to be resolved before proceeding with the pacemaker so it's on hold indefinitely.  And once it's back on the horizon, the cardiac schedulers get to schedule it for a fourth time.  I hate that for them!  But it is what it is.



So that's where we are now.  It will take some time for Eli's records to be sent to CHOP and for them to be reviewed.  In the meantime, we keep an eye on his belly and watch for more fluid to accumulate.  It's fully expected that he will need another paracentesis (or two?) before we get to Philly.  He's still on five doses of diuretics each day, so there are a lot of bathroom trips.  Meal prep takes more time these days because of dietary restrictions,  Every day he gets weighed, his belly measured, and his blood pressure taken.  Not to mention all the phone calls to and from providers about his status, keeping meds refilled, and having follow up appointments.  He is a busy kid who keeps us very busy as well!  But he is worth all of it!  Thank you for all the prayers and support.  We will update as we can with new information.


During the paracentesis on Tuesday.  His buddy Pablo right there with him as always.

The playroom has a new touch screen game table since we were there last month.  Eli enjoyed many of the games offered on this. 

Eli took this picture (and many others) of his dinosaur themed room.

This boy was still a little loopy from the sedation meds after the paracentesis on Wednesday, but looking pretty good for just having a blood pressure of 40/20!

Another picture of his cool dinosaur room

Walking the halls like a boss!

He was always ready to shed the hospital clothes and put on his own.  This was on Wednesday evening as we walked the halls again (it happens many, many times a day!)

Sent this picture to Bryan and Zachary as a way of saying 'Good luck!' before Z's tourney game that night.

If you look at the little square window above the trash can, you'll see a goofy little guy!

Thursday afternoon waiting to go home.  Here he's in the playroom shopping for fat free foods!

Walking out of the hospital!

Bye, PMCH!  See you next time!

Riding the pony at Meijer where we stopped for a few fat free supplies before heading home




Warning!  The next picture is of the fluid drained Tuesday in his paracentesis.  I don't think it's gross, but things like that don't bother me.  Just warning you this is your last chance to stop scrolling if you don't want to see it!














This should be a clear, somewhat yellow fluid.  Instead it's thick, tan, and definitely not clear.

Monday, June 25, 2018

Liver Biopsy Results and Future Plans

When Eli was hospitalized with his heart rhythm issues in May it was also discovered that he had liver problems.  We asked for many prayers during multiple tests including a liver biopsy, but we were reluctant to share what exactly was going on.  At the time, we didn't know anything for sure and what the doctors feared was very bad news.  We just couldn't explain until we knew more.  Outside of our medical team, we didn't talk about it with anyone, even our immediate family.  We had to know more before we could share.  Thank you for all the prayers even without us disclosing exactly why we needed them.  The power of prayer is amazing and Eli's results were much better than anticipated.  First, let me explain what we thought was going on and what Eli was being tested for, then I'll explain what the tests showed and a plan for him.

What we thought:

During his May admission, once his heart rhythm was more stable, the focus shifted to his growing abdomen.  After an abdominal ultrasound he had a liver ultrasound.  Then he had a more specialized liver ultrasound.  Then he had a CT.  Then a liver biopsy.  From what the team had seen on ultrasounds and the CT, they were fairly certain he had an advanced case of liver cirrhosis.  They wanted the biopsy done to confirm that and to show what stage of cirrhosis he was at.  Liver cirrhosis is a disease of liver damage from a variety of causes which lead to scarring and liver failure.  There's no reversal of the damage done from cirrhosis.  Kids with Eli's type of circulation (also known as Fontan circulation) are known to have liver problems later in life, but cirrhosis is rare.  His gastrointestinal team, cardiology team, and the hospitalists had never had experience with a Fontan kid having cirrhosis.  The research they did yielded very little help.  It looked like Eli was once again blazing his own medical trail and doing things no one else has done.

{Let me get off track here just a bit and say something about his heart and treatment so far.  The heart surgeries Eli has had done are still relatively new in medicine.  Twenty five years ago, most babies born with his defects were sent for a transplant right away (which gets rid of the defective heart, but brings about a whole lot of other problems and issues to deal with in addition to the fact that a transplanted heart doesn't last as long as a natural heart....studies estimate a heart transplant averages 13 years).  If the baby wasn't a good transplant candidate, then they were made as comfortable as possible and let nature take its course.  As time passed, less and less baby hearts were available.  Why?  Because of stricter car seat laws.  We were keeping our kids safer in our vehicles (which is a VERY good thing!) which meant fewer infant/child deaths which in turn meant a major decrease in the availability of donor hearts.  Some surgical options had been developed and trialed in heart defect children, but weren't routinely used.  With transplant options becoming less prominent, these surgical options became more prevalent.  My point with all this is, there are not a lot of adults living with Fontan circulation.  Most of the patients are still children.  We don't have a large medical base to study the long term effects of Fontan circulation on other parts of the body.  So although we do know liver disease is common with Fontan kids, there's still a lot of research going on to discover other negative effects or problems the Fontan will bring.  However, we don't regret undergoing the Fontan.  The goal for Eli has always been have this series of surgeries which is believed to help get him to his late teens/early adulthood before needing a heart transplant.}

Back to now, we don't have other cases or research to compare Eli to.  But the fact remains he is suspected to have severe liver cirrhosis based on his radiology studies.  The CT and ultrasounds showed that his liver was hardening and had many nodules in it.  The good news is that the ducts going into and out of the liver showed good flow and his liver function tests were good.  But we've always known Eli's body compensates for many defects very well, so the fact they thought he had those good things didn't mean the bad things weren't happening.  One doctor even had a discussion with me about the immediate plan for Eli once the liver biopsy results were in.  This talk was only two days after the biopsy when we had no more information than we did two days before the biopsy, so in hindsight this talk was a very premature discussion that I now believe she did not need to have with me, but I'm sharing here to further explain how serious and worried we were at the time.  She said Eli would need to be listed soon for a liver and heart transplant.  The reason for both was to have both organs come from one donor which would greatly minimize the risk of rejection.  If he were to be listed, it would happen in the next few weeks (as in yet this summer).  PMCH does not do pediatric transplants.  In fact, if Eli needed to have both done, not many places do that.  We were likely looking at going to Cincinnati or Philadelphia for an undetermined amount of time for him to be listed, wait for the perfect donor, then have the surgery, and begin recovery from that.  So not only were we facing a very uncertain medical future for Eli, but we thought our family would be further broken up for a long time as one of us (probably me) would move with Eli and the other stay with Zachary and Charlotte.  All that in addition to having just moved and our old house still being on the market (had an offer 11 days after listing.  After working on that deal for six weeks, it fell through just prior to closing so it is back on the market and we technically still have two homes).

And that's not all that was going on.  When Eli was to have the liver biopsy, he also had a lymph node biopsy. Yep, more concerns about Eli's health.  Through all the imaging that was done, it was discovered that he had several enlarged lymph nodes.  The teams wanted to biopsy one of those to rule out lymphoma.  That's right.  There was a slight concern that Eli could be battling cancer of the lymphatic system.  Overwhelmed doesn't begin to describe the emotions Bryan and I were feeling.  There was too much going on, too many unanswered questions to explain publicly at the time.

What we know:

On Wednesday, May 23, Eli had a big day.  He had a heart cath, liver biopsies, lymph node biopsies, and paracentesis.  So he had a cardiologist, an interventional radiologist, a pathologist, and an anesthesiologist in the procedure room in addition to the staff of nurses and technicians necessary to accomplish everything that needed to be done.  None of his procedures were actually that difficult or dangerous for him, but just scheduling all that together is so complicated.  Major kudos to the hospitalist staff and others involved who made it all happen for our little guy.  He tolerated everything very well.  We had the heart cath info immediately from Dr. Parikh and it was all good.  Eli's Fontan was intact and working just as it should.  Eli has several (many, many!) collateral veins that have grown off of some of his major vessels.  Sometimes those are closed off with coils, but Dr. Parikh said Eli's are too small and too numerous to do.  Also he said if the body grows them and we close them off, the body will grow more.  He doesn't believe these are hurting Eli and saw no reason to spend hours coiling each of them, even if he could.  Any other problems he saw from the cath were things that he thinks can be corrected or at least improved with a pacemaker.  Overall, it was great heart news.  We knew the biopsy results would take many days to come back so we were happy with what we knew.

A few days after the biopsies were done, he was sedated again.  He had more fluid removed from his abdomen for testing as well as drainage of an abscess located deep in his abdomen.  We had to be sure he didn't have any active infection going on before proceeding with a pacemaker in the future.

As answers came in we confirmed Eli has no active infection going on in his body.  At an appointment with Eli's regular GI doctor (not the one who had the transplant talk with me), we got the biopsy results.  We actually had the results before that so I had a good idea of what was or wasn't happening, but we didn't have results as far as how they pertained to Eli and what the next step was, so we didn't share them yet.

The liver biopsy showed liver congestion and mild fibrosis...NO CIRRHOSIS!!!!  Fibrosis is scarring of the liver, but it's an early stage and Eli's is classified as mild.  What damage has been done is not reversible, but if we can alleviate and control some of the liver congestion, then the progression can be significantly slowed.  So he does have liver damage, but honestly the news we got is basically best case scenario.  I made it a point to discuss with her the conversation had with the other doctor about transplant and she confirmed my thoughts that we are no where close to needing to go that route for Eli.  Although it may be in the cards for him one day, it's not anything to worry about at this time or likely even in the near future!  The lymph node biopsy also did not show anything of concern so we were blessed with amazing news on many of our fears!

What's next:

It is believed that the liver congestion and resulting fibrosis are related to Eli's heart rate and rhythm.  He is still in his slow junctional rhythm and also has some breakthrough SVT.  Everyone has agreed he needs a pacemaker, but cardiology did not want to do surgery to place one until we knew he had no infection and what the status was of his liver disease.  Now that cardiology has clearance (and even encouragement) from Infectious Disease and Gastroenterology, they got to work getting surgery set.  Of course it's not that simple as picking a date on the calendar.  I do not envy the scheduler in their office.  This is the third time this poor person has had to coordinate all this for him.  As of now, he is set for pacemaker placement the week of July 23.  The day before his pacemaker placement, he will undergo a few tests.  One will be another paracentesis to drain fluid from his abdomen.  We'll talk about that more a little later.  The other will be a test by Dr. Steinberg, his pacemaker doctor, to further investigate Eli's heart rhythm.  He wants to see if there's a chance Eli could have a pacemaker with just one lead.  The significance of this is pretty major.  If one lead would work for Eli, then the surgery to place it is a lot easier than if he needs multiple leads.  Of course we want what's easiest for Eli, but what's easiest now may not be easiest in the long run.  I'm curious to see what will happen.

While Eli was in the hospital in May he had three paracentesis procedures done.  Nearly seven liters of fluid was taken from his abdomen.  Because test results were still pending, nothing was done about the cause of the fluid, so we knew it would come back.  And it has.  At his GI appointment last week the doctor said he needed it drained off.  She waited a while to see if we could coordinate with cardiology to have the paracentesis and pacemaker closer together.  Now we know pacemaker can't happen for another month, so he needs to have a paracentesis soon.  Actually she's recommending three between now and pacemaker placement.  He has a significant amount of fluid to remove and he will likely accumulate more as time passes.  When they took four liters off the first time, he did not do well that night.  We don't want to wait and do a large amount the day before pacemaker surgery and risk him crashing and not being stable enough for surgery.   That's why she wants to do three between now and then, so they can remove smaller amounts each time.

Eli is scheduled for tomorrow (June 26) to have a paracentesis.  He has to be checked in at 6:30am so he and I will leave town a little before 4am.  We opted not to spend the night up there somewhere, it just makes more work and Zachary has a ball game we'd like to see tonight.  After the procedure, he will be admitted so they can monitor him closely.  The plan is to just stay the night and come home on Wednesday.  I will pack for multiple nights!  He will have another paracentesis done in early/mid July, then a third one the day before pacemaker surgery.

The thought process now is that once his heart is in a regular rhythm with a higher rate, it can decrease the amount of liver congestion he's experiencing, thereby decreasing the progression of fibrosis.

We would appreciate your prayers tomorrow as he undergoes this procedure, for safe travels, and for Zachary and Charlotte.  Zachary understands what is going on and is doing okay with it, but Charlotte is not pleased to hear about Mommy and Eli leaving again, especially overnight.  She will be fine, but it's a lot for her to take in.

Thank you all for your prayers!  Eli is proof they work!  In closing, I'll add a few pictures of events that have happened since we've been home.  We have been BUSY!  Eli has had baseball, Zachary has had baseball, Bryan's sister got married, we've had a family reunion, and we're still trying to unpack from the move.  Busy times!  But always time to cherish Every Little Beat...

Eli and his little league team after their last game together

Receiving his medal from the league president

Not really sure what these three were up to, but they're so cute!

We went shopping for me to get a dress for my sister-in-law's wedding and these two had to have a ride :)

Eli with my mom and sister at the Summer Social

Playing ball in the yard one day, these two had to have a rest....on Aunt Kendra

Throwing coins in the fountain at St. Vincent the day of his appointment

Playing with kinetic sand in the kitchen.  Not really sure why his foot is in it.

Eli receiving a special blessing from the pastor who performed Kendra's wedding ceremony.  He listened intently but did not put down his bag of chips.

At the rehearsal.  From left to right:  Alyssa, Charlotte, Eli, Gunner, and Zachary.  All five were flower girls and ring bearers for the ceremony.

Taking pictures after the wedding.  All five kids were very good through the ceremony and getting pictures after.  So proud of all of them!  Then they danced the night away and provided lots of entertainment!

Not an official photo, but the Veale family in full force.  We were blessed with a beautiful evening for the wedding.  The temperature was good, the rain held off, and it was gorgeous.  

Bryan, Eli, and family friend Tom.  

Zachary, Ashley, Eli, and Bryan having some fun at the reception

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.

Brothers



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

-----or-------

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