Tuesday, December 31, 2013

The Most Appropriate Place for Us to Ring in 2014 is....

...the hospital.  Yes, Eli's inpatient at Peyton Manning Children's Hospital in Indy and we will be here the rest of 2013.  It's more fun to say that today than when we "jokingly" said it in the spring.  If you follow Eli on Facebook, you probably know we asked for prayers Monday morning.  Since then there have been very little updates because I didn't have a computer.  So, sorry for the delay.  Why is he hospitalized?  Let me back up to Christmas.

Eli woke up vomiting Christmas morning.  After about four hours he seemed better, but kind of weak.  That didn't concern us because he hadn't eaten anything.  As the morning went on, he was better and wanted to go to Mamaw and Papaw's for Christmas Day.  We decided to take him because he was doing better and we wanted our family to be together for Christmas.  Besides, if he started feeling poorly again we could just leave.  As the day went on he did great.  He ate well, but what we thought was weakness that morning was actually a limp.  We checked his foot, ankle, leg and knee but nothing seemed to hurt him.  There was little if any swelling and no bruising.  We just kept an eye on it and let him play.

The next day, he seemed fine health-wise, but was still limping.  By the end of the day he was barely putting weight on his foot.  When he did walk, he would turn his foot so he was walking on the outside of it.  It was painful to watch.  We gave him ibuprofen to see if that would help lessen the pain and allow him to walk better, but it didn't seem to help.  He never complained of any pain even when we asked him.  We opted to take him to the ER that night to get xrays.  We had to wait over two hours in the waiting room (which was kind of a treat for us because that meant we weren't the most emergent case there!  We don't want to make a habit of it, but it was nice for once).  The xrays were negative for any fractures so we just figured he sprained something.

Throughout Friday and Saturday he was still limping, but he played with his new toys, ate well, and was generally in a good mood.  Sunday morning he woke up crying at 4am.  He was running a temperature of nearly 102.  One dose of ibuprofen resolved that and he had a good day until the evening.  After supper, he started coughing, had a runny nose, was getting feverish again, and just generally didn't feel well.  He was either extremely fussy or just lethargic.  Again one dose of ibuprofen broke his fever, but his oxygen saturations weren't as high as they normally are when he sleeps (usually 95% or above but that night was hovering around 90%).

When Monday morning arrived, we were in contact with Dr. Amy (our family doctor) who wanted to see him as soon as she could and to work on getting an orthopaedic referral for the same day.  Dr. Amy agreed that Eli just looked "off" and didn't find a real reason for it because his nose, throat, etc all looked good.  He wanted to ensure we knew he didn't feel well, so he threw up in her exam room.  Her exam of his foot was better than she expected although he still didn't want to put weight on it.  Her office got us an appointment with a pediatric orthopaedic group at St. Vincent's for 3pm.  It was noon.  I called Bryan and he started packing for us.  Eli & I arrived home and Bryan left to go to our local hospital so we could take copies of those xrays with us.  In the meantime I finished packing and we were on the road within 20 minutes of leaving Dr. Amy's!  I did have to stop for some gas but we made it by 3:15 and we made it safely!  We decided that just Eli and I would go for now while Bryan took care of things at home with Z until we knew more. 

Our appointment was with Dr. Jonathan Wilhite.  He was very interested in Eli's history of staph aureus and how he presented in the office.  Eli still wasn't putting any weight on his right foot and he also still had a cough and just looked/acted like he didn't feel well.  The good news from Dr. Wilhite was that he didn't suspect any joint infection, septic joint, or osteomyelitis.  Any of those could explain the foot pain and Eli's other symptoms.  His thinks Eli has a hairline fracture in his foot that wasn't showing up on xray.  He was fitted for a boot and we were told these usually resolve on thier own within a couple weeks.  The boot is merely for Eli's comfort and stability so we don't have to make him wear it if he has a huge fit about it.  That is the good news from Dr. Wilhite.  However, he did think Eli needed evaluated by one of the hospitalists to rule out any possible infection elsewhere because of how sick he was.  Eli was directly admitted to PMCH from Dr. Wilhite's office.

By the time we finished the appointment and got up to the floor it was almost 6pm.  Throughout the evening he was evaluated by two doctors, had a chest xray, had blood work drawn for labs and blood cultures, and got to visit one of his aunts who brought me Fazoli's for supper.  Eli slept pretty well and seemed better this morning.  His oxygen levels were higher through the night and he didn't have any fevers.  Today (Tuesday, New Year's Eve) has been a day of waiting.  We're waiting to see what the blood cultures drawn last night show us.  The earliest we'd know is late tonight.  Eli's other lab work showed that he had higher than normal white blood cell count and CRP, both are indicators of infection present in the body.  It could be his body's reaction to the hairline fracture, or it could be something else.  His chest xray came back looking the same as his last one done in early November so there's nothing new to worry about there.

Overall he's acting like he feels better today although he still has a cough, runny nose and tires easily.  The highest temperature he's had today has been 99.1.  Early in the day we made two trips to the play room, but now he's in isolation so his activities are limited to the room now.  The reason for isolation isn't because they're afraid of him spreading germs, but because they don't want to risk him picking up getting sick/sicker from other germs he could come in contact with.  So that means no more play room.  We can possibly walk the halls if he wears a mask, but for now we'll just hang in our cool Peyton room (yes, kiddo lucked out again and has another Peyton room).  Daddy arrived just minutes after Eli woke from a nap so that has made his afternoon much happier. 

The plan for tomorrow (New Year's Day) is to hang out some more and wait for lab results.  The earliest we could be discharged would be that afternoon, but it's also possible we could be here for more days.  For now we'll just take it day by day!

Thank you for your prayers this time around and throughout this entire, stressful year.  Your support means so much to us and we are incredibly grateful for each of you.  We hope you have a blessed and safe New Year!

Much love,
the Veales

Tuesday, November 12, 2013

Marathon of Appointments

I am so far behind in updating this blog!  Since my last update about our family we've celebrated birthdays for both Zachary and Eli.  We had a great experience at the Colts vs Broncos game at Lucas Oil Stadium.  We had a very low key Halloween and participated in the downtown Christmas Stroll in Washington.  We've had a lot of fun being together at home for the past month without any hospital admissions!  Something else we've done is have a few check ups for Eli.  Specifically, Nov 5 and 6.  Here's a breakdown of the results of those two days:

GI (Gastrointestinal):
Our first appointment was on Tuesday.  It was with Kelly, GI Nurse Practitioner.  Eli doesn't really have any GI problems that need close monitoring, but he does have and still utilizes the feeding tube so we have six month appointments with the GI group.  Overall, she's pleased with how he's doing.  The only concern was that Eli hasn't really gained any weight over the past three months or so.  At times he's lost a little and gained that back, but overall his weight has plateaued.  Considering everything his body has been through since August (surgery to drain large pleural effusion, pneumonia, severe staph infection in the blood requiring 6+ weeks of antibiotic therapy, and seizures), I'm surprised his weight has been this steady!  However, everything he's been through also points to the fact that he needs more calories to heal.  If it were totally up to Eli he would live on SunChips and milk with the occasional bite of his brother's leftover sandwich from his lunchbox.  Thank goodness for the feeding tube with nighttime feedings.  We are now giving Eli one and a half cans of PediaSure each night instead of just one can.  It's not a big change, but it's four ounces more and that equals an extra 120 calories.  So far he's tolerated it very well.   In fact, we think his appetite has been pretty good (for Eli anyway) and possibly increased a little at a few meals.  Our next appointment with GI will be in six months.

After our appointment was over we made the short walk to the hospital and up to the third floor.  Our buddy Madison was a patient there because she had her Fontan surgery the week prior.  I had briefly met her parents about two years ago, but had never met Madison and they hadn't met Eli.  We finally remedied that and got a nice visit that afternoon.  It was strange to walk in because she was in one of Eli's former rooms, but then I realized that Eli has been in nearly half the rooms on that floor so we really can't stake a specific one as "ours".  Madison and her parents were waiting on an echo to be done and read so they could possibly go home.  Later that night I found out that Madison did get to leave the hospital that evening and was back home with her parents and sister.  Madison's previous two surgeries had not gone according to "plan" and she was hospitalized with several complications both times.  Her family expected nothing less from the Fontan (especially after following Eli's story and realizing some of the crazy things that could occur).  Fortunately for them, she recovered nicely and was sent home a week after surgery!  As far as I know, everything is still going well for them.  Thanks for the prayers for Madison and her family!

Wednesday morning started early for us.  We had to be at a doctor's office (near the hospital) by 8am.  We had stayed at my sister's house, but it was still a 40 minute drive, possibly longer with morning traffic, and I am not a morning person.  Plus I had to pack and load all of our luggage (one bag), the cooler with Eli's meds and drinks, the oxygen, the diaper bag with enough supplies to last all day, give Eli his morning medicines, and finally remember to bring Eli himself.  Did I mention that I am not a morning person?  Well we did fine and made it with a little time to spare. 

First on the agenda was an EEG (electroencephalogram).  It measures the electrical activity of the brain.  This is done by attaching various electrodes to Eli's head and chest.  It reads the electrical activity produced by his brain as he is subjected to stimuli such as flashing lights.  Then he's supposed to be calm and quiet for about 40 minutes  No books, no games, no coloring, no picture albums, just calm and quiet.  "We like it if the child will sleep" says the tech.  Really?  A nap at 8:30 in the morning?  Oooookkaaaayyy, let's try.  After nearly 30 minutes of begging for his balloon game that he KNEW was in the diaper bag, he gave up and slept some.  For about ten minutes.  It would have been longer, but then the tech said it was time to wake him up.  She flipped on the lights and scared the dickens out of him by loudly calling his name.  Another few minutes of monitoring him and it was over.  I know the tech was just doing her job and she was actually very nice and gentle with Eli, but to me this whole experience was borderline barbaric.  Of all the testing and procedures he's gone through, this was one of the toughest for me to watch.  Obviously he wasn't that stressed out if he slept some, but it was rough to deny him things and try to make him relax when one of the last places in the world a toddler with his medical history is going to relax is a procedure room in a doctor's office.  Anyway, once it was over, it was time to remove the electrodes from his head.  They were anchored in there with some goop that turns to cement (exaggerating somewhat here...but not much) and over the cemented electrodes were strips of tape.  Most of it loosened with wet washcloths, but Eli was over it and was screaming the whole time.  She was gentle and yet worked quickly.  It was like she had done it before!  Once it was all removed we were sent back to the waiting room.

After a little while we were called into another room and Dr. Mott came in.  He had reviewed Eli's EEG and was very pleased.  He did not see anything abnormal on it and (at this point) we have no reason to suspect anything but the low blood sugar to be the culprit for Eli's seizures.  He asked how Eli was doing on the Keppra (antiseizure medication he's been taking twice a day since the seizures).  We had been warned that Keppra can change a child's disposition for the negative and that was exactly what we'd been experiencing with Eli over the past several weeks.  We realize he's a toddler so we don't expect him to have great control over his emotions in general, especially combined with the ups and downs he's experienced this year.  However, the mood swings he was going through were frustrating not only to us but to him as well.  It was clear that he was confused by the way he felt.  That made it very difficult for us to console him.  For the past several weeks, my days were spent totally at Eli's request which would often change several times in ten minutes.  It was beyond normal toddler fussiness.  It was really wearing both us down, physically and mentally. 

Dr. Mott had warned us this could happen.  In the beginning he said there were really only three things that could be done:  a) add vitamin B12 to Eli's medications...it's not sure how, but it acts as a counter agent to this aspect of Keppra, b) wean him off the Keppra, or c) change him to a different antiseizure medication.  After seeing Eli's test results and examining him, he said we could wean him off the Keppra.  That's what Bryan and I were hoping would happen.  This way we're not adding another medication to Eli.  Also, the only way to find out if Eli really needs an antiseizure medication is to see how he does when he's not taking it.  With the combination of his exam and test results, we don't think he needs it, but the only way to know for sure is to take him off it.  Starting the next day we began a lower dose of Keppra (about half the amount he was taking) and he gets it twice a day.  After two weeks we will stop Keppra altogether.  It may be wishful thinking, but we think we've already noticed a difference in Eli's demeanor.  Who knows, maybe the slightly increased appetite plays into that as well?  We go back for a follow up in March, sooner if necessary.

After we checked out of the neuro office, we braved the cold rain and got back to our van.  We drove the short distance to the hospital.  We registered for his outpatient chest xray and got that done.  Then we went to the cafeteria for lunch.  Eli was very hungry, cranky, and not too much fun at this point.  He was tired and wanted held while we waited in line for our food.  I don't blame him and it felt good to hold him, but it was difficult to hold him, our large diaper bag with necessities (I didn't overpack, we used nearly every item in the bag at some point in the day!) and carry our tray of food.  After a few bites he was feeling better, but began crying because I hadn't bought the piece of bread he apparently thought I did (I never saw slices of bread to be bought nor did I hear him ask for one).  This went on for a while but I got him to leave the cafeteria and come to the main lobby with me.  There's a fountain out there he loves to watch.  We had a little time to waste before trekking to our next appointment so I gave him a handful of coins to toss in the fountain.  I forgot how fast he can throw and had to dig out more coins.  About $7 later (another slight exaggeration, but whatever the amount it was money well spent because he was smiling and friendly again), we headed to the Heart Center.

Once there, they did the usual weight (third time it was taken in less than 24 hours), his height, blood pressure, oxygen saturation, and an EKG.  All his numbers were good, but the oxygen was a little low at 87%.  Dr. Parikh (main cardiologist) came in and looked him over.  Sara (nurse practitioner) was in there too and did her exam.  Both thought he looked great, sounded great, was cute as can be, and hung the moon.  I love that they make us feel that Eli is the most special child to them (pretty sure they do that to all their kiddos, but I like to think it's just us!).  The best news they gave us was that Eli's chest xray looked great.  The effusion is still present, but much smaller than on the xray taken in early October.  No one is too concerned about the effusion that's still there.  Either it will diminish more over time or it won't.  Eli isn't having any symptoms from it so as long as he's fine, they're fine with it.  In fact, we were told to decrease Eli's Lasix (diuretic, removes excess fluid from the body).  In about a month we can start trialing how Eli's sats are without oxygen while he's sleeping.  Dr. Parikh said he didn't need to see Eli for a few more months and we could coordinate that visit with our neuro follow up appointment to reduce trips to Indy.  He said he hadn't planned on doing an echo that day, but since he wouldn't see Eli for another four months he'd do it just to check everything out.  He was very pleased with the echo findings.  Dr. Steinberg (pacemaker cardiologist) wanted Eli's pacemaker to be interrogated while we were there so we went back to the room to wait.  The lady from the lab came in, completed that, and stepped out to call Dr. Steinberg with the results and see if he wanted any settings changed.  She came back in and made the minor adjustments he requested.  Eli was beyond tired by then and fell asleep in my arms.  While waiting for the final word that we could leave, Dr. Steinberg popped in.  He made it back to the office and found out we were still there so he came in to say hi.  That's what I love about that place, he'd already gotten Eli's report and given orders, but came in just to lay eyes on him because we were there.  Eli slept through our discussion, but I got more info on when we'll be checking his pacemaker from home.  Because of Eli's multiple admissions since getting the pacemaker, we haven't had to do a check from home yet.  In fact we don't even have any equipment to enable us to do that!  We're supposed to be getting that stuff and some information on it in the next week or so. 

We left the office and I carried the heavy load of Eli (which still feels so good in my arms!) and our stuff to the van.  Have you ever tried to strap a sleeping 30ish pound kid into their car seat?  It's not easy, but I got it done.  By the time I got into my seat, Eli was wide awake.  He looked right at me with his hands in the air and said "All done!"  It was very cute!

I asked if he was hungry and he said he wanted SunChips.  We were out so I drove to a gas station where we luckily found some.  As we waited in line to pay, another register opened up.  The cashier said "Next, please!" with an accent.  Eli's head immediately popped up and he very loudly said, "Doc Preek!"  Now I agree he did sound a lot like Dr. Parikh, but I know it wasn't him.  However I couldn't convince Eli of that and he yelled it each time the man said "Next, please!"  That only happened four times and the two guys in front of us could barely contain their laughter at Eli's confusion and my attempts to quiet him.  Finally it was our turn and as we approached the register the cashier spoke to Eli.  I don't remember what he said to Eli, but Eli stared at him and loudly informed the man "You no Doc Preek!"  Luckily the man laughed and said he wasn't, but he wanted to give Eli a five anyway.  Eli let it happen and was satisfied.  Needless to say, I couldn't get to the van fast enough! 

Our trip home was pretty uneventful, thank goodness.  We drove straight to Zachary's school and made it literally just minutes before his kindergarten program.  Most (maybe all?) of the kids had a line or two to speak between their songs and Zachary was to be the second one speaking.  He did great and the whole program was really cute.  After supper Eli was put in the sink so we could wash the rest of the EEG cement/residue/gunk out of his hair.  It bugged me all day that his hair was crunchy yet oily from that stuff.  We washed him twice and now nearly a week later I think it's all out!

Thank you so much for the prayers for a safe trip, good results, and a return in time to see Zachary's program.  We've increased Eli's nighttime feeds and decreased the meds we were told to and so far things are going really well.  Please pray that he's able to come off the Keppra and does not have any type of seizure activity once completely weaned.  Also, we've been home for a little over a month and I'm starting to get that feeling that we've been home too long.  Having good news at all the appointments eased my fears a little, but there's always the fear that we're missing something or of the unknown.  You could add peace of mind to your prayers for us too!  Thank you so much for reading and remember to cherish Every Little Beat...

Tuesday, October 15, 2013

Warrior Updates

This post is going to be an update on several of the kiddos we've asked you to pray for in the past.


He had his heart transplant a couple weeks ago.  Since the transplant, his parents have been taught many different things about learning to care for him and his new heart.  From what I understand, most of it was medication related.  Caleb will be on multiple antirejection medications for the rest of his life.  They've had to learn what meds can and can't be given together, what needs to be given with food, what has to be given on an empty stomach, how far apart the meds must be given, etc, etc.  I think Katie said he takes about 20 doses of medicine a day.  It's a lot to learn, but (in Katie's words) "it's so worth it!"

Last week he was released from Riley Children's Hospital to go to the Ronald McDonald House with his parents.  That is so he could be close by for testing he still had to have.  Caleb is also in isolation as he adjusts to the antirejection meds.  He has to wear a mask anytime he's out of his room and contact with visitors is very limited.  Because of those restrictions, Caleb, his parents and big brother have had some bonding time that was very much needed for all of them.  Katie blogged that the four of them ate dinner at the same table for the first time in almost a year.  It's really the little things in life, isn't it?  Caleb had a heart biopsy to check for rejection and that came back with great results.  Things have been going well since then.  Caleb was admitted to Riley on November 1, 2012 and I just read that today, October 15, 2013 Caleb will be going HOME!  He's actually never been to this house before but I'm sure he will adjust to it wonderfully.  It's just a house and this family knows that home is wherever the four (soon to be five!) of them make it!  Their family and friends are organizing a parade of sorts.  There will be people lining some of the streets on their route from the hospital to home so Caleb can see everyone waving at him and cheering for him.  Sometime tonight they are holding a praise rally at their church in thankfulness of Caleb's transplant and return home.  Caleb and his family will not be there because of the isolation issues.  I would love to hear Caleb and his brother's reaction as they drive through the gathered crowd on their way home.  What a neat way to celebrate his homecoming while respecting the family's privacy and isolation! 

Please don't check Caleb off your prayer list.  He still needs our prayers for the rest of his life.  Rejection could happen anytime.  There are still many things for him and his family to learn about living with a heart transplant.  However, the big picture is that he's alive, thriving, and going HOME!!!!


Liam is a feisty little guy I've never had the pleasure of meeting.  His mom, Carolynn, was one of our favorite nurses through Eli's seven week hospitalization in the spring.  The day Eli was discharged (June 4), Liam was diagnosed with cardiomyopathy.  To summarize:  Liam was transferred while on ECMO to Cincinnati Children's, he was diagnosed with Castleman's Disease (very rare and no other known cases of Castleman's and cardiomyopathy have been found yet...Liam is a groundbreaker), chemotherapy and radiation to control the Castleman's, an operation to place a Berlin heart (mechanism worn on the outside of his body that helps function as his heart and takes some of the work off Liam's damaged heart) before he could finally be listed for transplant.  He had such a long road to get through before he could even be listed, but he's a trooper and overcame incredible obstacles.  Then on October 1 he suffered a stroke.  That is a major set back for him and he had to be moved to "inactive" on the transplant list.

Liam is currently still in the critical care unit at Cincinnati.  He had two drains placed that are removing fluid/blood from his brain.  He was kept in a medicinal coma so his brain could "rest" and he was starting to be weaned from that medication.  Now he is suffering though a "storming" phase.  What is storming?  His temperature will rise above 101F, his blood pressure rises, his heartrate increases to above 130 beats per minute, his breathing is faster, he's agitated, sweating, and his body is rigid. There's not much they can do for him through these phases.  Carolynn says this is the hardest thing they've had to watch Liam endure in the sixteen weeks since his initial diagnosis.

This family has been hit hard with bad news and rough times.  This is supposed to be one of the best times of their lives as they are expecting a second child (girl!), but instead of being able to enjoy her pregnancy they're stressed as they pray for their son's life.  Please keep this family in your prayers as they endure this roller coaster they never wanted to ride.


Madison is a funny little gal with cheeks that rival Eli's.  We met her family when Eli had his second heart surgery.  Madison and Eli have very similar heart defects and both have feeding tubes.  I'm not sure how much Madison uses hers anymore because I know after a lot of work she was starting to take more by mouth.  Madison will be having her third open heart surgery, the Fontan later in October.

As you know, Eli's Fontan road was a rocky one.  I documented the majority of it through this blog and Facebook posts.  Many times, as I was posting updates with not so great news, I thought of Madison's parents.  I kept thinking "I hope this doesn't get Becky and Dan scared for Madison's Fontan!"  Please remember Madison, her parents, and big sister in your prayers as her surgery date approaches.


I haven't met Nathan or his momma, but we are Facebook friends.  She and I had both commented on something and hers included the fact that her son had a heart defect.  I singled her out and asked about her son's heart.  We became FB friends and keep up to date on each other's kiddos.  Nathan's heart defects are similar to Eli's and Nathan has other health issues to deal with as well.  He just had heart surgery a few weeks ago and is recovering nicely.  This family lives in Canada and it's been really interesting to me to see how different our healthcare systems are.  This kid is so fun.  I love seeing pictures of him because, unless he's asleep (which is often in a really weird position), he always has a smile on his face.  Please keep Nathan in your prayers as he continues his recovery.


Riley is a sweet ten year old girl we met while Eli was hospitalized after his Fontan.  Initially it was thought Riley needed an appendectomy but further testing revealed much worse news for her.  She had a form of stomach cancer that was very rare, even more rare for a pediatric patient.  I had the opportunity to talk with her parents on occasion and was always impressed with their positive attitude and faith.  The family motto was to "FROG" it.  FROG = Freely Rely On God.  She endured months of chemotherapy and treatments.  I followed her journey through her Facebook page.  She and her family (parents and two sisters) helped raise lots of awareness about pediatric cancer.  Sadly, Riley's earthly fight ended on October 10.  Her family is currently planning her celebration of life.  Please keep them in your prayers as they prepare to honor the short life of their beloved Riley.


Chloe is a local heart kiddo who we've only met through Facebook!  One day we will meet!  Eli and Chloe have the same local doctor and both are treated by the cardiac group at Peyton Manning Children's Hospital.  As far as I know, Chloe is doing well and doesn't have anything major coming up soon, but her momma is expecting their second child in 2014 and her daddy has recently joined the military.  This is a family who could always use prayers for endurance and strength!


Riley is a sweet little girl who was born with defects similar to Eli's.  I don't even know how I found her Facebook page, but I'm glad I did.  She is so cute and it's been fun watching her kick some CHD butt!  She's been through two open heart surgeries, most recently the Glenn in the middle of September.  Riley has been recovering well and hopefully she and her family can just have some fun for a while before having to prepare for anymore heart procedures!


Bennett is a baby boy born a few days ago.  Within hours of his birth, he was diagnosed with Hypoplastic Left Heart Syndrome.  He was flown to Riley where he will have his first open heart surgery on October 16th.  Please keep this sweet family, new to the CHD world, in your prayers. 

There are more kids whose families we've met through the hospital, online support groups, or mutual friends and we include them in our prayers as well.  There are so many.  If you're reading this and thinking "why didn't she mention 'X'?" please don't think I've forgotten you or that we don't pray for you!  The ones listed here are the main ones we have contact with and and have requested prayers for.  Because of that, I wanted to give an update on them so if they're in your prayers, you have the most recent information about them.  Thank you for caring about all of us!

Sunday, September 29, 2013

He's Definitely Feeling Better

Overall it was a low-key day.  The Infectious Disease doctor is confident Eli doesn't have meningitis.  That diagnosis was made as he watched Eli throw a ball around the room (alternating hands) and tease his nurse.  Doc said "kids with meningitis don't do that.  We'll rule that out."  Everyone seems to think the most likely culprit was his blood sugar.  We think that was low due to a combination of some of his meds and changes are being made.  Eli was taken off the two big time antibiotics that were started Saturday morning in anticipation of a hidden infection.  He's been restarted on his routine course of Cefazolin (another antibiotic) that he's been taking since August 23 when he tested positive for staph aureus.  We may still be on target to complete that dosing schedule later this week.  We are still waiting on the results of blood cultures drawn in our local ER (takes 48 hours). As far as discharge goes, it will probably be a few more days but no one has said anything specific.  Also, we haven't asked.  It's a protective mechanism we developed during our multiple week stays earlier this year!

Eli was goofy on and off through the day.  It's obvious he's still weak and shaky from the meds yesterday and the seizures themselves.  He took two good naps today and was asleep by 9pm.  That's early for him when he's in the hospital.  When he was awake, he was silly and kept changing his mind regarding what movie to watch ten minutes into a movie.  That's very normal for him while in the hospital!  He was up moving more and talking a lot. 

Bryan's parents, aunt, and sister came to visit.  He went back to Washington with them so he can be with Zachary and return to work.  Eli was very sad when Daddy left, but we took our first trip to the play room and that helped perk him up.  He didn't play long but was mad when I made him leave.  His appetite has been pretty good today, but we're continuing the nighttime feeds.  One thing we didn't get accomplished today that we MUST do tomorrow is getting the boy a bath.  We started to about four times today but each time something happened to prevent it.  Once was a visit from a doctor, once his food tray arrived earlier than expected, and twice he fell asleep rightas we were gathering supplies.  He doesn't smell good at all due to the dried sweat and getting sick twice on the helicopter.  In addition, his hair has a lot of crusty tangles because of the goop used during his EEG yesterday. 

Prayer Requests:
- that Eli has a good night's sleep and is even stronger on Monday
- that he poops soon.  Yes, we're back to that.  I think just being here gets him backed up.  If he doesn't go by tomorrow, I'll ask for some meds to help him along.
- for Zachary as he starts another week of school without Mommy and Eli.  Z has put up with so much and I don't think he realizes how different our lives are.  That's a blessing and sad at the same time.
- for me to get some much needed rest as well so I can take good care of Eli and make the right decisions for him
- for our fellow heart friends: 
     Caleb (who has been hospitalized since November 1 as he waited for the perfect heart to become available.  His miracle happened and he had a heart transplant last week!  He is doing great so far!)
     Liam (who was just recently listed on the transplant list after a long battle to get there)
     Nathan (just had open heart surgery that wasn't able to get the result they wanted, but is doing well through his recovery)
     Madison (who will be having her Fontan in a month). 
These kids and their families are good friends of ours (even if we've only met a few times or are only internet friends!).  They serve as an inspiration to us and help us get through some rocky times.  I hope we can help encourage them as they do us.

Thank you for caring about us and following our story.  I looked at our blog this afternoon and saw that we've had over 20,000 views.  You all certainly know how to make a family feel special!

Seized with Fear

Eli had been doing really well since his discharge from the hospital on Sept 11.  He has been getting IV antibiotics through his PICC line every eight hours at home in addition to his other medicines.  He had a great check up with his Infectious Disease doctor on the 23rd.  There was even discussion of getting to stop the antibiotics and remove the PICC after his next checkup.

Then the morning of Sept 28th rolled around.  Bryan was sleeping downstairs to take care of Eli's stuff through the night and I was upstairs sleeping in our big bed with Zachary.  Yes, Zachary sleeps with one of us these days.  He needs the extra comfort from us having to be apart so much.  If you have an opinion on that then we ask you kindly keep it to yourself because it works for us right now.

Anyway, about 6:30am Bryan rushed into the bedroom carrying Eli.  Eli looked very limp in Bryan's arms.  Bryan's voice was shaking and he said something was wrong with Eli.  We took him back downstairs so we could look at him in the light.  Eli's head and body were soaked in sweat but his body was cold.  His eyes were open and in our direction, but he was not looking at us.  They were fluttering and the movements were getting jerkier.  His arms were starting to jump around too.  We looked at him and each other and knew we were calling an ambulance.  Bryan took him to the living room to lay him on the floor with nothing around him.  I grabbed the phone to call 9-1-1.  I honestly stared at the keypad for a moment trying to remember what number to call.  It was surreal.  I talked to the operator and told him our two year old was having a seizure, that he'd never had one before, and that he has an extensive heart history.  As I reread that last sentence it sounds like I was in complete control of the situation and very calm.  Frankly I'm surprised I even had control of my bladder at the time.  He had us make sure Eli was breathing (he was, thank God!) and confirmed our address and situation.  He also wanted us to have a list of Eli's meds available to the paramedics.  I told him we have a folder with a pretty accurate history & meds.  He assured us help was on the way.  He asked if I wanted to stay on the line but I said no but I'd call back if anything changed before they arrived.  During all this, Eli's movements were continuing.  His arms were jerking around and his legs were a little bit too.  His eyes were jumping around as well.

While Bryan stayed with Eli, I ran upstairs to get my shoes.  I also called my mom.  You know that feeling you get when the phone rings at a really late or really early hour?  Well I did that to my mom today.  We didn't talk much "Can you come stay with Zachary?  Eli's having a seizure and the ambulance is on its way."  She said, "I'll be right there."  And she was.  The firetruck pulled up in front of the house, followed by mom who was followed by the ambulance.  As they were all pulling up, Eli's jerking, jumpy movements stopped.  The seizure lasted about ten minutes.  He was still unresponsive but he wasn't seizing.  When the EMTs got inside they asked a few questions but really didn't spend much time at the house.  Eli & I rode in the ambulance to the hospital and Bryan followed in the van.  At our local hospital Eli was assessed and a brief plan for testing was begun.  In thirty minutes' time he had started the seizure, help arrived, transport complete, assessed by an ER nurse and doctor, vital signs taken, he was in & out cathed for a urine sample, and they were preparing to draw blood from his PICC line.  Bryan and I were very impressed.  We've often wondered how we'd feel about emergent care at our very small local hospital if the situation arises and today helped ease those fears.  Throughout all this he was still very drowsy which is very normal after a seizure.  He would occasionally whine a little during certain things (urinary catheter and rectal temp).  We were getting some small responses from him, but nothing noteworthy.  His vital signs were fine other than his temperature was low at 95.9.

At 7:30am he got that dazed look in his eyes.  The nurse was just leaving the room to get something and we called her back.  She took one look at him and called for the doc who appeared within seconds.  The same thing happened as far as his eyes and his arm movements, but this time was much shorter.  It was almost exactly two minutes (yes, I was watching the clock).  Post seizure vital signs were good.  As he was seizing, the doctor ordered Ativan.  Even though he stopped on his own before the med was given, they gave it to him anyway because it was a repeat seizure.  Right after that, Bryan's mom arrived.  We'd called her after we got to the ER and knew a little more.  She thankfully showed up with orange juice.  I told her on the phone I needed something and she brought one for each of us. 

While in the ER he had a chest xray and CT of the head.  Those both came back normal except for a small pleural effusion we already knew about.  Early in the visit we flat out asked the doctor what his plan was for Eli.  Was he going to transfer him?  We couldn't imagine Eli would be sent home and we didn't think he'd be admitted to our small hospital (not being negative about our hospital, just honest).  The doctor (who was very nice but I cannot pronounce or even attempt to spell his name) said he'd transfer him to Peyton Manning Children's Hospital (PMCH) after Eli was definitely stable and some initial testing complete.  Because of that, I knew I had to pack!

After the CT was done, I was making a list of things I wanted to pack because I didn't think I'd remember when I got home.  While I was working on that, the doctor came in and said some of the blood work was back.  Eli's glucose (blood sugar) level was 18.  Eighteen?  How on earth was he as stable as he was with a level of 18?!?  The kid can compensate and mask symptoms like no other.  They pushed a dose of dextrose and were starting an IV anti seizure medicine.

I drove home to pack, get a prayer request onto Eli's Facebook page, and hopefully see Zachary. Okay, to be honest, I didn't have a lot to pack for myself because I hadn't fully unpacked from our last admission.  I just moved that stuff to a larger suitcase and threw in a few more items.  Most important to pack were Eli's things.  He doesn't need too much in the way of clothes when he's here, but it's nice to have his shoes so he can walk the halls and go play.  Also, we'd left the house in such a hurry we didn't have Pablo.  That's his buddy (stuffed penguin) from The Backyardigans.  He's been with Eli daily since just before the Fontan in April.  He's been to the OR with him, through chest tubes, physical therapy, doctor appointments, etc.  We had to bring Pablo.  The staff at PMCH knows Pablo as well as they know Eli.  I also had to pack pacifiers (he will only use ours) and bottles.  He still drinks his milk from a bottle and he refuses to use hospital bottles.  Then I packed movies.  That's his normal pastime when he's hospitalized.  What did I grab?  Honestly didn't pay too much attention, I just grabbed about 20 & put them in a box!

While I was at home, I got to talk to Zachary and explain a little bit.  Bryan texted saying that they were going to fly Eli to PMCH just because of the distance.  I told Zachary that and he said, "Can I fly with him?"  Mom, Zachary, & I drove back to the hospital where Bryan and his parents were with Eli.  We got to spend some time together.  Zachary was content for about 6 minutes before wanting to check out the vending machines.  He actually wanted to see the waiting room.  I think he knew there was a tv in there which Eli's room did not have.  A few minutes later he was eating Cheetos and drinking Coke while in the waiting room.  It doesn't take much to make my kids happy.

By this time, Eli's blood sugar was much higher (252!) and his temperature had risen to 97.3.  He looked better too.  He was getting a little more responsive, but would easily fall back asleep after we disturbed him.  The helicopter arrived and took off again to refuel while the two transport nurses assessed him and prepared him for the flight.  We tucked Pablo in with him and waited for the chopper to arrive.  Zachary was waiting outside with Bryan's parents and my mom.  I went to get him so he could say bye to Eli.  He reluctantly came in but he really wanted to see the chopper.  After I assured him he would see it, he came in to Eli and walked out with us.  We kissed Eli goodbye and let the two flight nurses wheel him to the helicopter.  We knew he was in good hands and actually in pretty good condition, but that doesn't make it any easier to watch your baby fly off without you.

Being wheeled to the helipad by the flight nurses

Being loaded onto the back of the medical helicopter
Words don't capture the feelings in this photo

They took off about 11:20am.  After we couldn't see the helicopter anymore, Bryan and I rushed home.  In my infinite packing wisdom I hadn't packed anything for him.  I'm a pretty lucky he keeps me around! 

Zachary stayed at the house with grandparents and Bryan and I left for Indy.  Eli would be there in 45 minutes while we had close to three hours to be on the road.  It was almost noon and we hadn't eaten yet so we made ourselves grab something from a drive through.  Neither one of us thought anything sounded good but we must've been hungrier than we thought because we finished all of it.

One of the flight nurses called when we were about two hours from the hospital.  He said Eli did well on the flight but he did throw up a couple times.  They gave him some medicine to help ease that and then he was fine the rest of the trip.  He confirmed with us what room Eli was in and who his nurse was.  One of Eli's aunts got to the hospital and was allowed to be with him before Bryan and I arrived.  She called and told me what nurses were in the room and who his doctor was.  We recognized every name she said.  We've been here waaaayyy too much lately!  It was a big comfort to know who was caring for him while we weren't there.  His nurse is one we've had many times.  He sometimes knows her as Tickle Monster, but since he was so sick today she was just going by Stacey.  Aunt Ashley also took it upon herself to "fix" Eli's hair since it was so messed up from being so sweaty during the seizures.  Every two year old needs a mohawk, right?  Ashley said he really wasn't awake during any of this, but he would open his eyes and scowl a little at times. 

When Bryan and I arrived he was about to have an echocardiogram (ultrasound of the heart).  Later he had an EEG (elecroencephalogram which measures the electrical activity of the brain).  Eli woke some during the echo and was asking for his bottle.  The doctor wanted to keep him on clear liquids because at the time she was unsure if he would have a lumbar puncture and would need sedation.  As he woke more throughout the afternoon she determined that wasn't necessary for now.  The neurologist came in to examine him and talk with us.  Dr. Mott thought the EEG looked pretty good for the most part.  He felt that anything abnormal he saw was due to the seizures themselves.

Eli has been more alert as the night progressed.  He ate two cups of jello, a small bag of SunChips, some pancakes, bacon, oatmeal, and chocolate pie.  He sat on the couch with Bryan for a long time and played with everything.  The combination of meds he had this morning was pretty powerful.  Combine those with the exhaustion from having two seizures and you've got a pretty doped up toddler on your hands.  People were a little surprised he was so awake and alert.  As the drugs were wearing off it was like he was drunk.  You could see the eyes weren't totally there but it was different than the look he had with the seizures.  This we could mock for our sanity.  It's been a pretty fun evening!

Why did he have the seizures?  A few possibilities. 
- he could have a viral infection or meningitis.  Those aren't likely since he's not had any fevers, but again this child compensates like nothing I've seen before.  
- he could have had a stroke.  Because of the multiple heart surgeries and an abnormal heart rhythm, it's not unrealistic to think he had a blood clot that could have traveled to the brain.  After the echo, CT, and EEG, the docs don't think this is very likely.  Another factor in favor of it NOT being a stroke is that during the seizures he was twitching on both sides.  If it were a stroke it would likely have been more on one side.  Also, his reflexes and movements are pretty equal on both sides tonight...as they should be. 
- it could be related to the low blood sugar.  This is actually the most likely culprit.  The question is why did his blood sugar drop so low?  We aren't sure, but have a couple theories.  If there is an infection present, that could lower blood sugar.  Another has to do with his feedings.  Eli didn't get a tube feeding Friday night.  He ate well Friday and had had tube feeding for several nights.  We often take a night or two off each week, just so one of us isn't getting up as many times in the night.  We also found out that one of his heart meds can have a side effect of lowering blood sugar.  Eli's been on this since April and we've been doing the tube feeding 4-5 nights a week since the spring as well.  What changed Saturday morning?  We don't know.  We may not ever know.  There's a possibility this could be a random, one time thing.  

Our plan now is to monitor his blood sugar, his appetite, and his overall alertness/health/personality.  We are still waiting on to see if the blood cultures grow anything.  The cardiologist stopped the heart medicine he was on.  They may try a new one, but would rather see him be able to stay off it altogether.  As of now, we'll follow up with neurology on an outpatient basis.  Eli's still on the antiseizure medication (Keppra) and will be at home as well.  Neurology would like to get a brain MRI but that will be done in a month or so.  He'll have to go to a special facility for it because of having a pacemaker.  He'll also have a repeat EEG done at that time to compare to today's. 

Right now, we don't have any guesses how long Eli will be in the hospital.  Today was too soon to estimate, but maybe tomorrow we'll be able to make more definitive plans.  Thursday Eli was supposed to have a marathon of appointments in Indy.  He was going to see Infectious Disease, get a chest xray, see two or three providers at the cardiology group and then finish the day with the thoracic surgeon.  We're hoping all of them will see him while he's inpatient so we can get that out of the way.

Thank you for the quick response to our prayer request on FB this morning.  Seeing how many people are praying and the way the news spreads is a good feeling.  Thanks for sharing and helping us.  We even had a couple people come to the helipad to see Eli take off.  We are very fortunate and want you all to know how much we truly appreciate each of you.  Thanks for taking the time to read!

Sunday, September 8, 2013

Not Much Going On...Days 13 - 17 (Sept 4 - 8)

Usually I try to break things down by writing a few paragraphs for each day.  Not happening that way tonight.  Partly because I'm tired and partly because I took too long to do this post so I don't remember exactly what happened when.

Our last post led you to believe that a tagged white cell study was going to be done.  That plan was changed because Eli's hemoglobin and hematocrit were too low.  His hemoglobin was 8.2 and the hematocrit was in the 20s.  To do the tagged white cell study, about 25cc of blood (just under an ounce) has to be removed from Eli, sent to the nuclear medicine department for them to mix in their magic potion that will bind to the white cells to make them glow on the scan, and then the mixture reinjected into Eli.  Even though the blood is technically returned to Eli, it doesn't count anymore toward his total blood content.  Taking that much blood out would further lower his already low H&H.

Instead of the tagged white cell study, it was decided to do a bone scan.  He had that done on Thursday and he did very well.  Getting it done involves being strapped to a table and a series of two minute scans taken of different parts of his body.  He did much better than I expected and we were so glad we didn't have to sedate him for this.  Thursday night he also received a unit of blood to help his H&H come up.  It did but not quite as high as they expected.  In fact, it's debatable whether or not it's high enough to do the tagged white cell study this week.  It's high enough he shouldn't need a transfusion, but may not be high enough for that test.  Because of the two procedures he's had in the past few weeks coupled with the bloody drainage from his chest tubes, no one was surprised that his levels were as low as they were.  

The bone scan looked normal, which was good news.  The down side is that we still don't know where the staph was hiding out.  For now we're in another holding pattern.  Eli spent Friday, Saturday and Sunday playing, eating, drawing, being silly, arguing about baths, and making me laugh.  He's feeling so much better and it shows.  His vital signs are good and stable.  When he's awake he doesn't need oxygen and he sats in the low 90s.  While he's sleeping, he still gets the 0.5L and he usually sats >95%.  He's got more energy and it's harder to keep him occupied and happy.

The Care Conference for Eli hasn't happened yet.  Originally they wanted the test results so they could discuss those at the meeting and form a more accurate plan.  The bone scan results are helpful.  The problem is that there's no clear cut formula to deal with this.  Dr. Abraham (heart surgeon) discussed with us the possibility of going home soon and doing antibiotic therapy through his PICC line for several weeks.  How long is several?  Don't know.  After that's complete then we could revisit the idea of the tagged white cell study to see if any "bad guys" show up around the pacemaker.  Infectious Disease has a different perspective and we're expecting they would want to get the pacemaker out sooner rather than let Eli go home and eventually get sick again with another emergence of staph aureus.

Our concern with the tagged white cell study is that its purpose is to see where the white cells are gathering.  White cells are our body's way of fighting infection.  They're also a sign of healing.  Remember, Eli just had surgery a couple weeks ago to remove a lot of fluid from his right lung area.  Then he had two large chest tubes in place to drain lots of fluid for a week.  One week ago, he had another procedure to remove those chest tubes.  His pacemaker is right below the area he just had surgery on and the wires run very close to that area (under and beside it).  Couldn't the natural healing process from the surgery give a false positive to a tagged white cell study?  We've also been told that the tagged white cell study isn't a specific enough test to definitively show a small accumulation of staph aureus cells on something as small as a pacer wire.  We're just not sure what the correct next step is or if the proper step is the tagged white cell study, is now the right time?  Maybe to do it in a few weeks after more antibiotics is the right choice?  Something else we think needs done (docs have mentioned this, we just don't know when it will happen) is another chest xray.  He hasn't had one since the chest tubes were removed.  Like I said, his sats are good and he doesn't show any signs of a reaccumulation of fluid, but he's fooled us before.  Eli's pacemaker hasn't been interrogated yet either, so we don't truly know how dependent on it he really is.  We need those docs to get together and discuss some things.  We also need some questions answered.

What's nice about this confusing situation is that we know each of these doctors has Eli's best interests in mind.  It's obvious they like the kid and want what's best for him (and us), but each are coming from different specialties which means different experiences and different perspectives.

I am torn.  I want to be home.  I want to be home soon.  Especially because Friday is Zachary birthday.  When I hugged him goodbye tonight it broke my heart to think it is possibly the last time I could be hugging my five year old baby.  If we don't go home this week, the next time I'll see him is Friday night and he'll already be six.  We're making plans to have a party for him in the conference room here at the hospital.  We can decorate it and have a cake and he can open his gifts.  It would be great to do those things at home, but we are not counting on it.  I cannot emotionally afford to count on going home yet.  Even more than I want to be home, I want to get this right for Eli.  If that means staying a few more weeks then this momma will just suck it up!

FUNNY STORY:  Thursday afternoon, Eli took a nap.  I used the chance to get out of the room.  I was going to run to the grocery store for a couple items and grab a bite for supper.  Because of a flat tire on the van I wound up not leaving the hospital and I got something from the cafeteria for supper.  Eli was still asleep when I got back to the room.  Someone had been there and left a stack of Sesame Street stickers.  When I asked our nurse she didn't know who left them.  Later that evening Eli was playing with the stickers.  I asked if he saw who left them in the room and he said yes.  I asked who and he looked me in the face and says "Peyton Manning."  Again, I asked who left the stickers and he repeated it with an impish grin on his face.  We KNOW it wasn't Peyton because he had a game that night in Denver, but still if you ask Eli who gave him the Sesame Street stickers he'll tell you Peyton did!  Silly kid :)  Thank you to whomever really did leave those stickers, he's enjoyed playing with them and making up stories about them!

- for the Care Conference to happen soon
- for the doctors involved to be able to make the right decision for Eli
- for the four of us to be ready to deal with whatever is decided at that meeting, whether it's going home with IV antibiotics for several weeks with the possibility of readmit later for further testing/surgery/pacemaker removal or to stay and do those things now
- for me to have enough energy to keep up with and occupy Eli while we're still here!

Thank you all. 

Wednesday, September 4, 2013

Busy With Lots of Nothing...Days 9, 10, 11, and 12 (Aug 31 - Sept 3)

Saturday, August 31:  Zachary and I spent Friday night at my sister's house while Bryan stayed at the hospital with Eli.  It felt soooo good to snuggle my snuggly five year old.  I have to emphasize the fact that he's five because he won't be five much longer :(  Six sounds so much older than five...although about a year ago I remember saying that five sounded so much older than four!

Eli had a pretty good day.  The docs are trying him on room air while he's awake and then turning his oxygen on when he sleeps.  He's been maintaining his sats on room air so hopefully he can stay off the oxygen at least while awake.  He's eating a lot better today and even showing some playful moments.  He must be feeling better!

Zachary and I had a fun little shopping trip to Target and lunch with my sister.  Then he and my sister went swimming while I did some sneaky shopping for his upcoming birthday.  Greenwood has nothing left with dinosaurs on it!  I bought more than he needs, that's for sure, but it will be split between birthday and Christmas.  Also, other family members usually let us buy the specific dino stuff he wants and then purchase it from us so they know he's getting the things he wants.  It's all hidden at my sister's house for now, thanks Sissy!

When Z was done swimming we picked up pizza and headed back to the hospital.  Bryan's parents and one of his sisters was there so we all got to visit and eat pizza for a while.  Then they left and took Zachary back to Washington with them.  I hated to see him go, but it's hard to entertain him in the hospital.

Sunday, September 1:  Overall, today was pretty quiet.  Bryan and I decided Eli needed a bath so we teamed up and got the job done.  He HATES baths in the hospital.  It doesn't matter what we do to soothe him, he always screams his head off.  The easiest way we've found is to use two people (one on either side of him) and get the job done.  It goes very quickly and once he was dried and lotioned, he got to cuddle Daddy in the chair.  Because he still has his chest tubes and they're connected to suction on the wall, he doesn't have a very long "leash" from the bed.  While Bryan was holding him, I got the bed linen changed.

The thoracic doctor for the weekend checked on him and had surprising news for us.  He said Eli's chest tube output had decreased so much that he wanted to remove the chest tubes!  Because there were two tubes and Eli is already afraid of most medical personnel, he wanted to take him to the OR/procedure room to do it under conscious sedation.  Before scheduling anything like that, he wanted to make sure Eli's tubes hadn't clotted off which would result in the lower output.  He ordered a chest xray and said if that was clear he would see us in the morning to remove the tubes.  Radiology came and got the films which showed no clots.

We spent the rest of the day watching movies and being silly with Eli.  Again, he ate well and seems to be gaining more energy every day.  He's wanting to sit up and once we help him into position he can maintain it for a long time.  His sats were good all day.  We started his PediaSure nighttime tube feeding earlier than usual since he had to be NPO (nothing by mouth) at midnight. 

Feeling a little better and starting to color in his new coloring book

Monday, September 2:  We had been told Eli's procedure would be at 8 or 9am.  Around 9, surgical transport came to get us.  Prior to that, the doctor had been in to check on Eli and answer any final questions we had.  He was very thorough and explained (even though he's fully aware we've been down this road a few times!) that removing the tubes today doesn't mean he won't need any in the future.  When transport came, Eli sat on my lap on the gurney and we rode down to the preop area.  A Child Life Specialist came with us and Eli watched a Backyardigans show on her ipad.  It helped calm him until I had to get off the gurney.  Then he must have recognized where he was and he started crying.  The anesthesiologist asked if I wanted to come into the room until he was asleep.  He brought me a surgical hair net and a white, zip up HazMat looking suit.  I was adorable.  Bryan snapped one quick picture with his phone and I got back on the gurney with Eli as they wheeled us into the operating room.  I was right next to him as they pushed the sedation drugs through his IV and he drifted off.   It's hard to watch but also comforting to see how much these people who barely know him care about him.  I was taken back to the preop area where Bryan was waiting.  We were then escorted to the surgical waiting room we have come to know so well.  It was completely different this time though because it was a holiday and no one was around.  Seriously, no one.  The lights were dimmed and there was a television turned on.  We sat and waited about thirty minutes before the doctor came out and said everything was fine.  He had an xray taken in the OR to check for residual fluid.  There is a small area that showed some fluid (it had been blocked on previous xray because of the size of the tubes themselves).  The doctor thought the fluid in there was possibly clotting and wouldn't be an issue.  We will see.  Regardless, it was there even with the tubes so it wasn't going to drain if they had stayed in.  We got to go to the PACU and see him as he was waking.  Again, because of the Labor Day holiday, he was the only patient at the time.  Even with the sedation he had both nurses wrapped around his little finger.

Once back in his room he demanded "bot!" which is his bottle.  He drank that and wanted food.  Overall, he was doing very well without the tubes.  After he was comfortable and fully awake, his oxygen was again turned off and he maintained his sats well.  Eventually he napped a little and woke up hungry again.  I told you his appetite was improving!  Bryan left in the late afternoon.  Before and after that, Eli was acting a little silly with us and even laughing at times.  He was starting to hurt but it was easily controlled with Tylenol and Motrin.

Tuesday, September 3:  I had two goals for Eli today:  A bath and a wagon ride.  Most kids would love to get out of their hospital rooms, especially when it's something fun like a wagon ride.  Not Eli.  He's very distrusting of almost anything hospital related.  In the spring it was like pulling teeth to get him to not scream through the halls for the first couple rides.  After he decided it wasn't so bad, he quit screaming but had a look on his face that was a cross between being severely constipated and eating sour candy.  I expected no less this time around.

To my pleasant surprise it was much easier than before.  He was in a pretty good mood throughout the morning.  At one point he looked the window and I asked what he saw.  He said "Papaw's truck."  We didn't see anything like that out our window, but I asked if he wanted to ride in the wagon and look out the big window and find a truck like Papaw's.  He agreed very quickly!  After we finished breakfast (bites of pancakes with syrup, bacon, and scrambled eggs!) he was ready.  I asked the nurse if we had to take our IV pole or if he could be unhooked for a little while.  He wasn't getting a lot of fluids anyway and it would be easier to take him without the pole if they were okay with that.  She called and got an ok for him to be unhooked with activity.  Yea!  So off we went.  Before we got to the window he said he wanted to go to the play room.  He remembered that on his own because I never said anything to him about it!  We went in there and the first thing he wanted was to play basketball.  There's an arcade type basketball machine in there with severely deflated mini-basketballs.  He loves it.  I told him he'd have to get out of the wagon which he immediately agreed to.  So for the first time since August 22, Eli stood on his own two feet.  With me helping hold him up, he took shaky steps to the basketballs and started playing.  He got more confident with each step.  Too quickly I had to get him back in the wagon and head back to the room but that was only because his diaper was close to leaking!  We ate lunch and he wanted back out.  We went but this time went out to the playground.  Again, I told him if he wanted to play he had to get out.  Because he was still in search of papaw's truck he wanted me to hold him so he could see the parking lots around us (we're on the third floor so he couldn't see the vehicles).  Once he was satisfied he wanted to walk around and even ventured up a set of steep stairs (with lots of bracing help).  He walked back and forth across the equipment several times but wouldn't even consider a slide.  He let me carry him down the steps because his legs were a little shaky going down.

Excited about getting some mail today (Thank You!)  He tried to hold both for the camera, but unfortunately the Mickey Mouse card got folded so he could more easily show the TRex drawn in the card Zachary sent him. 

After that we went to the Family Room because I hadn't had lunch yet!  We heated up a frozen pot pie I'd stored in there and went back to the room.  He promptly sat on the couch and invited me to share the pot pie.  By 2:30 this afternoon he was working on his third meal!  After we ate I got our nurse so we could get his bath done.  She called Child Life to see if they could come make him happier while we gave him a good scrubbing.  It worked a little and he got to keep a toy frog that was used during the bath.  He got another linen change and then we hoped he settle down a sleep a little.  After all, he'd had more activity that day than he had in nearly two weeks!  He finally fell asleep about 5:30pm.  That nap was 45 minutes long.  He ate a few bites of supper and went back to sleep for an hour.  I tried to wake him but he would just mumble something (probably not something nice) and roll over.  He woke at 8:30 when night shift came to do their assessments.  He wasn't happy and I knew I had to do something to wear him out again so he'd sleep before midnight tonight!  He was willing to go back to the playroom so off we went.  He played basketball, trains, rode the little car around the unit, and rearranged a dollhouse.  As he was pushing his car around the hallways he stopped outside of room 8.  It was occupied, but he stopped and said, "my room."  It was his room...for several weeks last spring.  I told him his room was further down the hall.  He looked around and again told me we were at his room.  I said, "No, you've got a Peyton room down this other hallway."  Then he remembered and we moved on, but it was sadly cute to me.

We played a little longer and came back to the room by 10.  He ate a few more bites for supper and brushed his teeth.  Right now he's watching a movie and occasionally saying funny things to me.  He's taken to calling me "Sir" today.  "Eli, do you want a wagon ride?"  "Yes, sir."  "Eli, do you want another bite?"  "Yes, sir."  He says it with his crooked, mischievous smile.  Sometimes he'll correct himself and say, "No, sir.  You Mom" to which I'll say "Not Mom, I'm Mommy."  Mischievous smile again.

Our plan now is for the tagged white cell scan to be done.  Last I heard they were still trying to get it on the schedule for Wednesday.  The nurse practitioner on the floor was going to find out how long Eli would have to hold still for that.  We may be looking at some type of sedation or at least an attempt at relaxation/drowsy medicine to make this work.  We will find out more Wednesday.  Once that test is done, the goal is to get the doctors involved to have a Care Meeting.  That way they can discuss results and make a plan.  The doctors at this meeting would include Dr. Belcher, Infectious Disease; Dr. Abraham, cardiac surgeon; Dr. Steinberg, pacemaker cardiologist.

Again, thanks for caring and praying.  Thanks for the cards sent to him at the hospital, he had a lot of fun opening them.  Also thank you to anyone who has ordered through the Thirty One benefit for Eli (click here for the link to the consultant's page).  So far we've had three days in a row of orders.  Bryan has also been telling me about some generous mail we've received at home.  We've been given some gift cards and money to help us with gas, meals, etc during this time.  It's very humbling to be treated so kindly.  We are very appreciative of everything, thank you!

Friday, August 30, 2013

Holding Pattern...Days 7 and 8

Thursday, August 29, 2013:  First of all "HAPPY BIRTHDAY!" to the boys' aunt Cara!

Today was a pretty slow day.  Wednesday and Thursday were much of the same thing:  waiting for Eli's body to rest and heal.  His lungs sound clearer and they reduced his breathing treatments from every four hours to every six.  His belly is still distended but he's eating a little bit.  I still have to feed him most of it, but he is slowly getting stronger.  We were told these few days wouldn't have many changes on the docs part, just waiting for Eli to get stronger.

Friday, August 30, 2013:  The biggest news of the day is that Eli finally pooped!!!!  It's kind of a big deal.  He hasn't since Saturday, he was extremely uncomfortable, and it only took five glycerin suppositories and about seven doses of Miralax.  The down side to him having two poopy diapers this morning is that he is exhausted.  He's slept almost all day.  When he's awake he's trying to get a comfy spot in his bed which is difficult to do with all his tubes and attachments.  The first time I tried to have him sit up he was so shaky that I couldn't take my hands off him.  I didn't keep him upright too long and let him lay down on his side.  He was propped up on pillows and seemed more comfortable.  He slept again so I used the time to take a long mid-day shower!  When he woke from that nap I had him sit up again which he tolerated much better.  He also ate a few bites of crackers, grapes, and yogurt.  He stayed up for about 15-20 minutes before he had to lay down again.  He's sleeping again.  I think he's gaining some energy to keep up with Daddy and Zachary when they get here this evening!

Eli's now on a calorie count which means we document every bite or drink he takes.  Dietary also visited and encouraged me to push a couple ounces of PediaSure through his feeding tube at random times of the day.  We can do it after he eats or while he's sleeping.  It will be at our discretion, but he needs those calories any way we can get them to him!  The other change is that his breathing treatments have been changed to an as needed basis.  His lungs sound much better.  The chest xrays yesterday and today were about the same in regards to the amount of fluid present from the effusion.  Once he's able to sit up longer and even venture out of the room in a wagon, we should see improvement.

Pablo is still helping Eli through thick and thin!

Ways to Help?  Over the past week I've had many, many people asking what they can do to help.  Obviously keeping us in your prayers is our main request.  We understand that people want to be able to do other things for us, so I will try to be better about addressing those needs.  Right now here are a few ways if you're interested:

** we are still taking orders for Eli's MVPs tshirts and hoodies.  I want to place the order within the next week, so if you need one please let us know soon.  You can contact us through the Eli's MVPs Facebook page (click here for a direct link to that) or email your order to elismvps@yahoo.com.  We would like payment before we deliver and we'll let you know an address to send the check or money to when you order.

Tshirts come in garnet red, kiwi green and sapphire blue.  
Sizes available are Youth XS - L and Adult (men's sizes) S - 5XL   
Prices are $15 each (add $2 for size 2X and up)

Hoodies come in charcoal gray, kiwi green and antique sapphire                
Sizes available are Youth S - XL and Adult (men's sizes) S - 5XL  
**Antique Sapphire is adult sizes only, no youth**
Prices are $25 each (add $2 for size 2X and up)

**a friend of ours is hosting a Thirty One party.  Her commission will be donated to Eli's MVPs for Eli's medical expenses.  First of all "Thank you, Tiffany!"  It will be an online and catalog party.  The new fall catalog is going to be released Sept 1.  If you'd like to order or even just browse the catalog, go to her website.  Click here for that link.  At the top of her page is a tab for "My Parties."  Click on that and next to Fundraiser for Eli Veale is an option to Shop Now.  If you want a catalog please let us know and we'll get one to you.  Now's the perfect time to start Christmas shopping, right?!?!?  Orders will be taken until September 27.

**Eli's beginning his second week in the hospital.  Yesterday we received two pieces of mail delivered to the room.  Eli was too weak to get very excited but he was interested as I opened them and pulled out the cards.  He enjoyed me reading to him and showing him the pictures on the cards.  I think a simple way to make him smile would be to send him something simple.  A card, note, drawing, whatever you want!  I taped the two from yesterday to the door and realized we have a lot of room left to cover and it sounds like we'll be here long enough to do it!  If you'd like to send a message to Eli at the hospital, please send it to:

Eli Veale, patient
c/o Peyton Manning Children's Hospital
2001 West 86th Street
Indianapolis, Indiana 

**Since forming Eli's MVPs we have said we want to have fundraisers to benefit the CHD community.  We are still serious about doing a drive for some items we know the patients and families at Peyton Manning Children's Hospital could benefit from.  Throughout these two admissions, I have asked many nurses what they think some needs are and we have gotten wonderful ideas.  I had hoped we would have a drive in place by now, but that's not the way life has turned out!  We may try to do something like this for Congential Heart Defect Awareness Week in February 2014.  This is just to let you know that we are thinking beyond Eli and want to give back while raising awareness.  You'll hear more about this when we have time to put something together!

As always, please keep us in your prayers.   The four of us should be together again in a couple hours and I can't wait!  Prayers to all of you for a safe and enjoyable holiday weekend. 

Wednesday, August 28, 2013

Busy Times...Days 4, 5 and 6

Monday, August 26, 2013:  Today was a very hard day for many reasons.  Today's the day Eli is going for surgery to drain fluid from his right lung.  It's more and more obvious that he needs this as the night and morning pass.  His sats are steadily declining despite being on the vapotherm.  He was satting in the low 80's/upper70's as he was taken to surgery.  His breathing was faster and labored.  He slept all morning but it wasn't a peaceful, restful sleep.  It was an exhausted, his-body-is-working-too-hard-at-its-basic-functions-to-stay-awake kind of sleep.  That's hard to watch. 

Today was also difficult because it's the first time Bryan and I haven't been together when Eli's having surgery.  It was a tough decision to make, but I think it was the right one.  Bryan went home with Zachary on Sunday and was with him after school Monday.  I'm not sure how much work Bryan accomplished during the day, but my heart hurt for him all day knowing how worried he must be. 

Eli's surgery had to be bumped from noon to two.  Transport came to get him about 1:30 and we went to the all too familiar preop area.  Dr. Harrison (anesthesiologist) came out to talk to me about his plan.  The thoracic surgeon (Dr. Ascioti) had come to the room earlier in the day to introduce himself and describe what he was going to do.  He came to the preop area as well and used a surgical pen to write on Eli's right side.  That was confirmation in front of me that they would operate on the correct side.  Then I signed the consent.  Because Eli's sats were so low, Dr. Harrison didn't want to give Eli anything to relax him until they were in the OR.  That meant I could hang out with him until they were ready to take him back, but then I had to walk away from my crying baby so they could wheel him into the OR.  I completely understood the reasoning (Dr. Harrison has taken care of Eli in surgery many times and we really like him), but it's still hard to do.  Then I was escorted to the main surgical waiting room and checked in at the desk.

From here my story takes an odd turn.  I had arranged to meet with someone in the waiting room because I had to sign some papers.  My grandmother passed away earlier this year.  Her house is being sold now and because my dad's name (who is deceased) was on the deed as well as my aunts and uncles, my sister and I had to be part of the closing.  I had received an email earlier with an attachment of what paperwork I needed to fill out.  Many copies would have to be printed and I would have to find a notary as well as fax back copies then mail the originals.  I emailed the lady and explained my situation.  She graciously offered to drive to Indy and meet me with the paperwork.  That way I didn't have to print, fax, mail, or notarize anything and I wouldn't hold up the closing proceedings for the rest of my family.  So as surgery was beginning on Eli, I sold 10% of a house!

After she left (she sweetly stayed and talked with me for a while because she knew I was waiting alone, but she had a long drive back), I was going to post the first update I had received from the OR:  surgery had started and Eli was doing fine.  When I logged on to Facebook, my newsfeed was full of comments and announcements about schoolkids in Washington.  Apparently some kid thought it would be funny to plant a note about a bomb in the high school.  As soon as it was found, students were evacuated to nearby buildings.  Zachary's school is one of the sites the kids were taken to.  The only info I had was from Facebook and I know it isn't a reliable news source, but it's the only source I had.  Most people were saying that it was a disaster as parents were trying to pick up their kids.  Some were saying that students were only being released to parents.  I was consumed with fear about where Zachary was and would he be released to my mom, which was our plan since I was in Indy and Bryan was at work.  I figured he was okay since the threat wasn't actually at his school, but I didn't know.  With one child on the operating table and not knowing the whereabouts of my other child, I fell apart.  I was sitting in the middle of a crowded waiting room trying to hide my tears.  I wanted to run across the hall to the bathrooms, but couldn't see and was afraid I wouldn't be able to stand up.  The surgical liaison saw me and came rushing over.  I tried to answer her question about what was wrong but have no idea what I told her.  Right then my phone buzzed with a message from my sister-in-law.  She is employed at the school that was evacuated to Z's school.  She had talked to his teacher who said Zachary had been released with my mom.  Relief flooded through me.  I was able to make my way to the bathroom where fresh tears started but were controllable.  Reluctantly I returned to my seat, surrounded by strangers who were sympathetic but also afraid to look at me.  I'm honestly not usually such a drama queen, but in those 20 minutes I had never been more miserable!  As a side note, I believe a juvenile has been arrested for leaving the false note.  From everything I've heard, the school system acted quickly and appropriately for such a situation and the police efforts were thorough as they searched the school.

About an hour later I was called back to the conference rooms where Dr. Ascioti joined me.  He said Eli did very well and should be able to breathe much easier.  His sats were already 90%.  He removed 350cc fluid from Eli's chest.  Three hundred fifty!  That's equivalent to a can of soda!  No wonder he was laboring to breathe.  Now I wonder how on earth did he stay above 80%?  He's one incredible kid.  Dr. Ascioti told me Eli was headed back to the PICU.  He was still intubated (on the ventilator) and had been given a bolus of pain medication and a paralytic.  Once in the PICU, the PICC team would place a line and then I'd be allowed to see him.  I went across the hospital to the PICU family room.  Sara (cardiac surgical nurse practitioner) came to give me an update that the PICC team had started and Eli was doing well.  About an hour later the hospitalist came to tell me I could see him.  As always, it was such a relief to see him again!  He was still intubated and would come off of that after he was more awake and trying to breathe some on his own.  His face was really puffy, especially around his eyes, but that's expected with the surgery.  He had two drains coming out of his chest that drained into a collection system.  The nighttime hospitalist came to check on him and see if I had any questions.  We were discussing how much fluid was taken off and he invited me to come see the chest xray.  I followed him to the physician's work area and he showed me before and after images.  It was really neat to see the images but also very sad to think Eli had to work so hard because of it.

When Eli was more alert and starting to fight the tube in his mouth, the hospitalist said they could try to extubate him.  At 9:04pm he was successfully extubated and he did great.  He was on the vapotherm again and that would be weaned as the night progressed.  Eli slept really well Monday night.  It was a peaceful sleep and he was so sweet to watch.

Tuesday, August 27, 2013:  Today was a much slower day.  Eli did very well through the night and that led to a good day Tuesday.  During rounds, they decided to keep weaning his vapotherm and try him on regular oxygen.  He transitioned to regular oxygen in the late morning and actually had higher oxygen sats with that.  Because all that fluid was off his lungs, we could actually get a real idea of what his lung sounds were.  Before the surgery his lungs sounded very clear but that's because all that fluid was a buffer that masked the real sounds.  After surgery his lungs were crackly and wheezy.  That's consistent with the pneumonia diagnosis and now we can actually hear it!  He was started on breathing treatments every four hours.  The respiratory therapist brought in a cute mask with a dinosaur on it, but that didn't make a difference to Eli.  He hates wearing that mask.  I think it reminds him of being put to sleep with a mask for the thoracentesis he had last week.  Even though he cries throughout the treatment, he lets us hold the mask over his mouth and nose and he takes the full treatment.  It is definitely making a positive difference for him because he has a productive cough now.

Eli actually slept the majority of the day.  It was again the peaceful, restful sleep his body so desperately needed.  Initially we had plans to get him up a little so he could loosen up some of the junk in his chest.  However, as the day went on and we realized how tired he was, it was decided (mainly by Eli!) that sleep was what he needed.  Everything else was moving in a good direction and he was discharged from the PICU back to his cool Peyton room on the third floor. 

One concern we had throughout the day was that his abdomen was distended.  After we got back upstairs it was even bigger.  I've actually never seen it so big.  The skin was stretched so thin it was shiny.  Because he was so distended, he couldn't keep his sats up.  The size of his belly was preventing full expansion of his lungs.  He hadn't had a bowel movement since early Saturday morning, although he also hadn't had much to eat since then either.  An xray was ordered to make sure there was no obstruction.  It did not show an obstruction but did show a lot of gas.  During the day he had already been given two doses of Miralax with no results.  A glycerin suppository was given late last night.  He must have passed some gas through the night because by morning his belly was a little softer and smaller, although still distended.  Other than that, he had another peaceful night's sleep.

Wednesday, August 28, 2013:  His belly was still distended today but he did have a little bit of an appetite.  Throughout the day he's had several Goldfish crackers, some Wheat Thins, a few bites of apple, half a grape, a few ounces of milk, a few sips of water, and a some bites of a fish stick.  Three times I've gotten him into a sitting position which he maintained on his own for a few minutes, then several minutes longer supported by some pillows.  He is still very tired and very weak.  He didn't have enough energy to feed himself.  I fed him all but two of the Goldfish crackers.  I had to hold his bottle for him while he drank.  The boy is exhausted and it's showing.  One time he held his bottle but his hand was shaking too much to lift it to his mouth.  That was hard to watch.  I know he'll get his strength back as he heals from this.  For now I'll just enjoy getting to feed my baby again because I know Mr. Independent Eli won't let that happen once he's ready to do it himself! 

He slept most of the day and watched bits of movies.  Because he still hasn't had a bowel movement and the belly is still so distended, he is now getting the glycerin suppositories every twelve hours until we have results.  Results = poop. 

He has taken his breathing treatments much like he did yesterday.  He verbally protests but doesn't actually fight them.  He is still on 1L of oxygen and his sats are typically 94-97% which is an increase from Tuesday night.  I love those numbers!

What's Next?  There's more testing to be done.  So far, any blood cultures taken have been positive for staph aureus.  Eli is on Cefazolin (IV antibiotic) every six hours.  We haven't discussed how many weeks that will go on because we still need some of those other tests.  In the next few days Eli will probably have a bone scan to see if there's any infection settled in his bones (specifically the sternum).  A tagged white blood cell study is probably coming up as well.  His pacemaker still needs to be interrogated to see how dependent on it he is.  I'm not sure of the order of tests and I don't think the docs have set a plan for him yet.  The first order of business is to get him recovered from Monday's surgery and over the pneumonia.  Those things have to improve before we can do some of those tests to ensure we don't get false results due to the healing process.  I think it's very likely that once those tests are done, we'll be told for sure that his pacemaker has to come out.  Once that happens I do not know what kind of time frame we're looking at to be hospitalized, but it will be a long time before we get to that point.  I think we can safely say he'll be here for a couple more weeks at least.  

Specific prayer requests:
- for Eli to poop!
- for Eli to get the rest his body needs to heal, to gain energy, and get stronger
- for Bryan and I to stay strong and find ways to keep our family together despite the distance
- for Zachary as he has to be stronger and more understanding than any five year old should be.

Thanks to all of you for reading and caring about Eli and our family!