Friday, February 20, 2015

Hematology Update

If you don't remember, Eli had some preop blood work done that resulted in bleeding times that were longer than expected.  That was worrisome because of his upcoming tonsillectomy.  So his ENT wanted him evaluated by a hematologist. 

Eli's hematology appointment went well Wednesday.  It was a long appointment as the doctor had to get a lot of family history from me and Eli got very restless.  After a long discussion and a physical exam, he wanted to get some labwork drawn from Eli.  They drew seven or eight vials from him :(  He cried a lot but didn't fight it too much.  They were retesting his bleeding times and checking for a bleeding disorder called Von Willebrand Disease.

Dr. Nakkar (hematologist) said as far as he could tell, he wasn't concerned that Eli had any underlying bleeding issues.  Unless the labwork came back showing anything abnormal, he felt we could proceed with surgery as planned.

Today, he called me with some of Eli's results.  The preliminaries of Von Willebrand Disease were good so far.  The finals of those won't be in for several more days, but Dr. Nakkar doesn't feel that is an issue and we needn't worry about it.  Eli was also had two tests of his bleeding times.  One was normal and the other was increased.  He discussed many different things that could affect it, but his feeling is that Eli has a slight Vitamin K deficiency. 

Again, he doesn't feel this is anything that requires major intervention on his part.  He wants Eli to take a prescription Vitamin K tablet for five days prior to surgery.  That's all.  He (or his office) will let the ENT know that from his standpoint, Eli is cleared for surgery.  He did ask specifically when the surgery is, just so he can be aware and available if need be.  But he was also clear that he doesn't anticipate any problems. 

So, we picked up Eli's vitamin K prescription today so he can start it tomorrow (Saturday).  Surgery is still set for Thursday and we'll have more details about that soon.  As I type this, Eli is snoring away on the couch.  It's kind of cute, but now that we know how bad his sleep apnea is, it's actually sad to me.  I used to enjoy him waking in the night for snuggles, but now I realize it's because his body won't let him have the rest he needs and deserves.  I still hate the thought of another surgery for him, but I know he needs this and will benefit from it.  I just don't like that everything has to be so hard for him.  Even a "simple" procedure like a tonsillectomy and tubes in his ears has been quite an ordeal and we're not even to the surgery yet! 

Please keep him in your prayers.  We've not yet talked to him much about this.  We'll start more this weekend as we begin packing for several days in the hospital.  He's so young, but he's so smart especially about medical events.  The poor kid has been through so much and he knows more than he should.  Hopefully we can assure him this is good and will help him.  In four-year old terms.  Thank you for the prayers.  We really appreciate them and all of you!

Tuesday, February 17, 2015

Prayer Request for Safe Travels

This will be a very short update.  As you all know, Eli is scheduled for surgery to remove his tonsils and adenoids as well as place tubes and culture the accumulated fluid in his ears.  That is set for Feb 26.  He will have a lot of labs drawn when he's in surgery (we contact each of his specialties and get lab orders so it can all be drawn while he's under anesthesia).  However, the ENT must have some labs done before surgery.  One set of labs ordered is a basic CBC (complete blood count, shows a variety of things including white blood cells, iron levels, etc).  The other labs ordered were a PT and  a PTT.  Those are testing his bleeding times.  Because of the hardware in his heart and his irregular rhythm, Eli is at higher risk of a blood clot.  To combat that, he has taken half a baby aspirin every other day for years.  The aspirin acts as a blood thinner, so he does bruise easily and bleeds a lot when he's fallen or gets a boo boo. 

The ENT nurse practitioner called me last Wednesday with the results of his bleeding (coagulation) times.  They were high.  Much higher than anticipated even knowing he takes aspirin.  As of now, surgery is still on, but we need a good plan in place if he bleeds more than expected during the procedure.  One of the biggest complications of a tonsillectomy is bleeding, so this is definitely a concern and needs to be addressed.  Simply stopping the aspirin therapy isn't going to solve anything at this point.

So our next step (according to cardiology and the ENT) is to go see a hematologist/oncologist.  That doctor will examine Eli, draw more blood for testing, and make a plan based on Eli's levels that will guide the ENT during the surgery.  That appointment is for tomorrow.  Our original plan was for me and Eli to leave very early in the morning to make our 9am appointment.  But in the last hour, the weather forecast has changed and our area is expecting another inch to two inches of snow (on top of the 6 or so inches we received in the last couple days).   Now we've decided it would be best for me and Eli to get up to Indy tonight and spend the night with my sister. 

We would appreciate prayers that we have a safe trip, get good news with the hematologist, and have a safe trip home.  We're hopeful that we don't have to delay his surgery.  Since getting the diagnosis of Eli's severe sleep apnea, we've put more pieces together and realized just how much this is affecting him and we are anxious to get him some relief...and a good night's sleep!  What we thought was him just waking for cuddles in the night is really him in such a light sleep that he's not ever getting the rest his body deserves and needs.

I have lots of pictures from our Pizza Hut day, but do not have time right now to post them.  For now, please know that we are so grateful and humbled by the turnout.  We don't have any totals yet except that Zachary made $21.25 in tips.  He earned those by being the host and seating people when they came in, cleared tables, got a couple drinks, and checked on every table multiple times during their meal.  He worked hard!  Thank you to everyone who helped make him feel so special!

I will update as soon as I can after the appointment, but I have no idea when it will be!  Thank you for the concern and prayers.  We appreciate it!  Enjoy the snow!  It's beautiful but I know it causes problems for a lot of people. 

Sunday, February 8, 2015

Eli's ENT Update & Sleep Study Results

Eli had a sleep study on Friday January 30.  The purpose is to see if he has any obstructive airway issues that would require his tonsils and adenoids to be removed when the ENT doctor places tubes in his ears.  That way he only has one time under anesthesia for issues that can be done together.  We got the call on Wednesday of that week and she happened to have a cancellation for Friday, so we took it.  If we hadn't, it would have been mid to late February before their next pediatric opening. 

So we got everything thrown together quickly (yes, it often takes more than 48 hours to get everything we need to be gone for less than 24 hours).  Since this was taking place in an outpatient center, we were responsible for all of his medicine, tube feeding, supplies, pump, etc in addition to packing all the usual stuff of pjs, clothes, favorite stuffed animals and blankets, as well as a few snacks and drinks.  Anyway, we got it all together! 

Check in was 7pm, but they don't want Eli sleeping after 3pm the day of the study.  Since we knew he'd sleep on the way to Indy, he and I left about 1:30 that day and went to my sister's until it was time to head to the office.  That way his nap was done in plenty of time and shouldn't affect his nighttime sleep. 

We checked in before 7 and were taken to a huge room.  It had a hospital bed, a couch that pulled out for me to sleep on, a tv with DVD player, and lots of room for Eli to use for showing off.  And he put it all to good use.  About 8, the tech came in to start attaching everything Eli was going to have to sleep with.  He had three or four EKG patches on his chest, about 15 electrodes on his head, five electrodes attached near his eyes and on his cheeks, three electrodes taped to his left leg, and a sensor taped on his neck under his chin.  In addition to that he had a wire that ran over his head down to his nose.  Attached to that wire were two small wires that went into one nostril each.  Over all that he had another tube that went into his nose and hooked over his top lip into his mouth.  That was for monitoring his breathing whether it be through the nose or through the mouth.  He also had a pulse ox taped to his toe (gave him his "red toe" he was used to wearing during hospitalizations).  To finish off the ensemble he had two sensors individually strapped to his chest to monitor the rate and depth of his nighttime breathing.  There was a video monitor over his bed and an audio monitor so the tech would not only see his vital signs, but she would also be able to see and hear him every moment of the night. 

Looks comfy, doesn't it?  If you look closely, you can see the wires going into his nose and the small tube that went over his top lip.  The blue tape on his head secured all the wires and electrodes attached to his head and face.  That way his nighttime movements didn't affect them much. 

This is from the other side of his bed.  Again, you can see the tape securing all his wires.  There's a box in the front of the picture, just by the pillow.  That's the "brain" that all those electrodes fed into.  A blanket was kept over it so Eli wouldn't be tempted to fidget with it.  There were more monitors to the left of his bed that had different readings on them as he slept.  Most of them were quiet and we didn't really notice those through the night. 

I was worried that he would have trouble falling asleep in a strange place, especially after all the equipment was hooked up to him, but he did well.  He fussed a lot as the wires and electrodes were being attached, but once they were on he just snuggled on my lap and went to sleep watching a movie.  He woke about 3:30am and went back to sleep once I weaseled my nearly six-foot pregnant self into his narrow hospital bed with him and his equipment so we could snuggle.  The real challenge was getting OUT of the bed without falling.  I asked the tech in the morning if she saw me and she said they did (three techs in the monitor room) and they were impressed.  He woke up again about 4:20 but quickly went back to sleep with the same snuggling.  Again, I weaseled out and back onto my couch.  I had just fallen asleep when the tech came in at 5:10 to unhook him and release us.  We had been told he'd be out between 5 and 6 in the morning.  It took about an hour to get him unhooked, cleaned up from all the sticky residue, dressed, and pack all our stuff.  He asked for doughnuts so we stopped at Dunkin' Donuts and at McDonald's before heading home.  He slept most the way home and woke as we pulled into our driveway at 9am.

We had been told it would be about a week before getting the results.  On Thursday we had a call from the ENT nurse practitioner, Jenni.  She said there's no doubt Eli needs his tonsils and adenoids removed.  His sleep study came back showing severe sleep apnea.  Eli's normal oxygen saturation range is 88-92%.  During episodes of sleep apnea his sats dropped to the upper 70s.  The whole night he was sleeping, he never got into a deep sleep.  They're actually surprised he doesn't wake up more through the night than he currently does.  Our only guess for that is because he is a heart kiddo, he gets whatever rest he can.  Even with his severe sleep apnea, we don't see him not breathing through the night.  Jenni said she's not surprised that we can't see it.  His body has compensated for a variety of things over his short life and this is just another thing it's covering for. 

Sleep apnea is very hard on the body, especially the heart and lungs.  It puts a lot of stress on those organs and Eli's are already very stressed.  We also think this may help his daytime activity.  Most of us will be very tired and slow the day after a night of little or bad sleep.  Kids react differently.  They often do the opposite, meaning they are hyper or very, very active through the day.  That describes Eli perfectly.  He's a very busy boy who doesn't have much attention span, is constantly on the move, and doesn't listen to mommy or daddy like we'd hope.  We've had several explanations for this behavior including he may have some chemical imbalance in his brain due to his strokes, he could have Attention Deficit Disorder, or it could be that he's a busy four year old boy.  Also, he has said some things lately that confirms to me he has some memory of being in his hospital bed after his strokes and not being able to move.  Maybe he's making up for lost time!  And maybe none of his behavior is related to his poor sleep, but regardless he needs this done so his heart and lungs don't have to work harder than they already have to.

So the plan is to take him to the OR to place tubes in his ears, culture the fluid trapped in his ears that will be released with the tubes, and remove his tonsils and adenoids.  Surgery is set for Thursday February 26.  We don't have a time yet, as they are trying to work him in.  We'll find out more details the week before surgery. 

What we do know is that even though a tonsillectomy and tube placement is fairly routine, Eli will not be coming home that night.  Often kids do, but any child (forget Eli's special heart and other issues) whose sleep study comes back with the severe results Eli's did will have to spend the night.  Jenni said it's sometimes on the regular unit and sometimes it's in the PICU.  She cannot imagine a scenario where Eli would not be in the PICU.  When she said that, I told her she hadn't said anything that frightened me yet!  These kids with severe sleep apnea need their tonsils out, but the initial post op period can be tough.  They often have trouble controlling their oxygen saturations so that would be especially concerning for Eli.  He could possibly come home the next day if his sats are continually within his normal range and if he's swallowing well.  However, she cautioned us that he could be there for two or three days.  Again, that's not any information we didn't expect! 

Eli's surgery will be up in Indy at Peyton Manning Children's Hospital where all his other surgeries have been.  We know he'll have a pediatric cardiac anesthesiologist for the surgery and we've been asked to give a couple choices of who we want.  Of course we're nervous for yet another surgery (because nothing is ever simple with any heart kid, especially with Eli's complex issues, strokes, and history of staph) but we know it's for the best for him.  He snores like no child should and the results of this study are alarming.  He needs this.

We'll update with more information as it falls into place.  Thanks for the continued prayers and support! 

Sunday, February 1, 2015

It's Here, It's Finally Here!!!

Alrighty folks, it's finally here!  February!!!!  And you all know what we celebrate in February....Groundhog Day :)  Okay, just kidding.  What we really celebrate overshadows Groundhog Day (haha, see what I did there?  overshadows Groundhog Day?  I am very tired right now and a little slaphappy). 

February is known as Heart Month.  Specifically the week of February 7-14 is CHD Awareness Week.  While that's not yet nationally recognized we're working on it, and we in the heart community still work our tired tushies off to draw more awareness to Congenital Heart Defects, especially during that week. 

As you know, we are still collecting items to donate to Peyton Manning Children's Hospital.  Originally we hoped to deliver them during CHD Awareness Week, but our personal schedule isn't going to allow for a trip to Indy that week, so as of now we are looking at the end of February.  The good news with that is we will be collecting items pretty much all through the month of February, so there's plenty of time to get a donation to us if you wish to help out.  Again, any questions regarding the donation drive, please contact us via email ( or call us (812-254-7359).

Many of you may remember last year at this time while Eli was still in the hospital, there was a hugely successful fundraiser for Eli sponsored by our local Pizza Hut.  Well the managers there contacted us and are excited to do it again!  So on Friday February 13th, it will be Eli's MVPs Fundraiser Day at Washington's Pizza Hut!!! 

To participate, you have to have one of the vouchers pictured below.  The vouchers are free, but for Eli's MVPs to receive any donation from your order you must have a voucher.  What percentage does Eli receive?  That depends on how much the total sales are for the day.  The more they do in sales, the higher the percentage for Eli.  If net sales are >$600, then Pizza Hut will donate 20% which is what happened last time.  Last year this fundraiser was unbelievably successful and raised nearly $1000 for Eli.  Thank you, Thank You, THANK YOU!!!!  The managers at Pizza Hut have told me they will have even more employees available that day for this fundraiser now that they've seen just how incredible the support for Eli is. 

Again, the vouchers are free, but you must have one for your order.  Your order can be anytime during the day of the fundraiser, and it can be dine in, carry out, or delivery.  Online orders use the code given at the bottom of the voucher.  We will have these vouchers available at Daviess County Abstract (4th floor German American Bank) and hopefully some other places, but I've not had time to arrange that yet.  Those places will be announced soon as that is next on my To Do List!  If you want us to email a voucher to you, please let us know via Facebook or emailing us (  If you're able to, you're welcome to copy and paste from the voucher pictured below.  Also, you may make copies of your voucher for others who may be interested. 

We have found out about a special that will be available at Pizza Hut the day of Eli's fundraiser.  Since it's so close to Valentine's Day, they are offering one topping heart shaped pizzas for $9.99 or a heart shaped pizza and a cookie for $13.99!  What a cute way to celebrate Valentine's Day with your kids and to celebrate Eli's special heart than with a heart shaped pizza?!?  So appropriate at this time!

Also available during the fundraiser at Pizza Hut:

- a pair of tickets for the Indiana Pacers on the night they host the Charlotte Hornets featuring Washington's very own Cody Zeller.  This would be a great opportunity to watch Cody play professionally.  He's having a great season and has been starting a lot of games.  The game is Friday, April 3rd, and the seats are in section 208, row 12, seats 11 & 12.  They will be sold by a silent auction, and the starting bid is $25 for the pair. 

- Eli's MVPs bracelets will be sold again this year.  They're the same as what we began selling last year and are $3 each. 

We are planning on all four of us (and the baby bump!) to be present at Pizza Hut this year.  We haven't decided what times we'll go but we'll definitely be there for supper and hopefully earlier in the day as well.  Zachary had an absolute blast "working" last year, and he is sooo excited to do it again.  Bryan and I are just excited that Eli's home and not in the hospital!

Thank you for all the support you've shown in the past.  Your prayers, kind words, and offers of help mean so much to us and we are very grateful.  Eli has been doing extremely well, but (and I don't mean to be pessimistic, just realistic) please remember that every single day is a battle for him.  His heart works at least twice as hard as most of ours do.  He is still in therapy almost daily to try to regain what the strokes took from him.  Every day he has is a gift and we are lucky to still have him with us.  However, we cannot let our guard down and we have to realize that Eli's heart could further weaken at any time.  He has no guarantees other than this is probably the best he will ever be.  When will he deteriorate?  We don't know.  To what degree?  We don't know.  It could be something that can be temporarily helped by a pacemaker or medicine, or it could require a heart transplant.  Or there may be no options.  We don't know what will come.  Again, we're not trying to be negative but this is our life.  Eli is doing well now, but about the only guarantee we have is that he will have problems, likely major problems, at some point.  These fundraisers are to financially help him through those times.  We had an incredible, unbelievable turnout for the Pizza Hut fundraiser last year.  I feel like a large part of that is because his strokes had just happened and he was still in the acute recovery phase in the hospital.  This time, he's home and nothing major has negatively affected him since his strokes, but that doesn't mean he doesn't need our help and support just as much as he did last year. 

Again, thank you for reading and caring about our family.  We hope to see you at Pizza Hut on Friday the 13th because only good things will happen that day!  We are excited for our family to be there so we can thank you in person.  And as always, remember to cherish Every Little Beat...