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!

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. 

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! 

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 (elismvps@yahoo.com) 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 (elismvps@yahoo.com)  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...

CHD Awareness Week Petition

As you probably know, spreading awareness about Congenital Heart Defects is a passion for our family.  In all honesty, we didn't know much about them before Eli's diagnosis, so please don't feel guilty if you're the same way.  However, we now know so much and realize how important it is for the general public to know more about CHDs as well.  As the knowledge base grows, more people are more passionate about finding causes and cures, and that leads to more research, more treatment options, and a better life for these kiddos and their families. 

I don't have time right now to get into a lot of facts and figures, but CHDs affect many more people than I ever imagined.  It kills more children every year than all forms of childhood cancer do.  We all know how awful cancer is, CHDs are taking away more of our children than that nasty disease.  And those living with CHDs don't go into remission, they live with it every single day, every single minute, every single breath and heartbeat of their lives. 

Please help us out by clicking HERE to sign a petition.  The purpose of this petition to make Congenital Heart Defect Awareness Week recognized nationally from February 7-14 each year.  Right now, it's up to a few heart organizations, families, and individuals to promote the week.  It's never been anything official, but these kids and babies suffering from CHDs deserve to have a nationally recognized week.  To sign the petition, you simply go to the link provided above, enter your name, email address, and zip code.  To confirm you want to sign it, an email will be sent to you which you open and confirm.  It's easy and it means a lot to us.  Once you sign it, you also have the option of sharing it on your Facebook or Twitter account.  Please consider doing that as well, we are far from the required amount of signatures to make this happen.  Thank you for taking the time to do this!!!

News from our Fetal Echo and Eli's ENT Appointment

It's been a long, busy two days and I am worn out!  So glad to be back home tonight.  I'm pretty tired, but this baby is practicing gymnastics right now and that prevents me from sleeping so here's a rundown of our news from Tuesday and Wednesday's appointments.

Tuesday was our fetal echo and other scanning to check for any physical defects with our unborn baby.  Bryan and I went alone to this for a couple reasons.  First of all, we didn't know how long it would take (we'd been told to expect 2 hours or more for the scans) as it mainly depended on how much the baby moved around.  Secondly, not that we were thinking negatively, but in case we did have some news to process we didn't want one or both boys around as we worked through that.  After we checked in I had my initial ultrasound by a tech.  We had told her we didn't know the gender and were trying to keep it that way.  We watched the majority of the ultrasound she did but she had us look away at one point so she could check the genitals.  Her ultrasound revealed two arms, two legs, two kidneys, and other things that I had made up in my mind would be missing.  She tried to get us a good 3D4D picture of the baby's face, but the little squirt had its legs up over its head.  So we got a picture of that but the facial features weren't very clear.  That really didn't bother us because although it would have been nice to see more detail of the face, that wasn't our purpose for getting specialty ultrasounds nearly three hours from home!  The picture with the baby's legs over his/her head was pretty unique.  We did get a clear view of the baby yawning and the tech even rewound that for us to watch again.  It was cute enough to make any heart melt! 

After the tech was done, the pediatric cardiologist came in.  Her name was Dr. Tucker and we had not met her.  She just started with Eli's Indy cardio group in July so it was nice to meet her.  She spent a long time scanning the baby's heart and making friendly small talk.  At the end of her exam she said that as far as she could tell our baby has a healthy heart.  Because we're looking at a small heart in a small body within a larger body it's impossible to see every little detail, so she cannot rule out any small VSDs (ventricular septal defects which are holes in the wall separating the two lower heart chambers).  She has no reason to think there are any, but just cautioned us that is something she can't rule out.  Also, I won't go into specific details because it's very confusing, but a fetus has a different blood flow from a baby outside the womb.  That's because a fetus isn't breathing on its own so its blood doesn't need to go to the lungs.  After a baby is born there is a hole that closes up usually within the first couple weeks of life.  Occasionally it doesn't close on its own and requires medical intervention.  So that is something she can't predict right now.  Either of these things that she mentioned (VSD, hole that doesn't close) are not things she's concerned about.  She was just mentioning those to caution us that she can't say our baby is 100% heart healthy.  That's not just our baby, that's any fetal echo she does.  Dr. Tucker said she sees no reason to be concerned, she does not need to see us for any further exams while pregnant or even after the baby's born.  I specifically asked if we need to do an echocardiogram once the baby's born.  She said only if the baby's physician hears a murmur or if the baby doesn't pass its state mandated pulse oximetry reading (Cora's Law!) or if we have some other concern that develops.  Basically we couldn't have gotten better news about the baby's heart!

After the cardiology part was done, we were waiting for the maternal fetal doctor to come talk to us about the ultrasound results from the scans the tech had done at the start of the appointment.  While we were waiting, another tech came in and said she had a favor to ask of us.  The facility was interviewing a potential new employee and they wanted to know if we'd let her perform another ultrasound on me as part of her interview.  Say no or watch our baby move around a little more?  We agreed.  She said the doctor would come talk first then she would come back in with the girl they were interviewing.  The doctor came in and immediately said, "We're getting a better picture of that face."  By that time, the kid had squirmed around enough that its legs were no longer over its head and he could get clearer views of the baby's facial features.  In all honesty I never cared for the 3D4D pictures until I saw our baby's photo session!  We were able to see more features of his/her face.  Cute little baby lips (like big brother Zachary?), cheeks that are round (like big brother Eli's?).  Oh, so sweet!  The doctor spent a fair amount of time getting us some photos of the baby's face and he said it's because he really had nothing to discuss with us since everything looked good as far as he could tell.  Again, good news! 

Then the other tech and her interview prospect came in.  They were really focusing on getting good pictures of baby's brain, femur, and the insertion site of the umbilical cord into the placenta.  Again, none of that was because of concerns with our baby, they were using the baby to "test" the girl interviewing.  The doctor came back in to watch her and through all of it we just got to relax and enjoy more views of our squirmy little baby.  When we left after nearly two hours in the exam room, we were leaving with the knowledge that as much as they can tell from all the testing they did, there are no concerns.  And baby weighed in at 1 lb 11oz, almost half a pound more than the average 24 week fetus...determined by my non-medical late-night online Googling abilities!  As I said in my last post, I couldn't bring myself to pray for a healthy baby.  All I could do was pray that we could accept whatever news we got.  I still can't believe things are good so far.  It's a relief but it's also still going to be in the back of my mind.  Even after delivery I may not believe it for a long time!  No matter what, we know this is the baby meant for us, just as Zachary and Eli were meant for us. 

Here are a few of the photos we got from the ultrasound sessions.




This is a good profile pic of the baby.  This was at the very beginning of the ultrasound.  Notice the genitals are just out of the frame, she did that on purpose for us.  And, no, we didn't find out the baby's gender today either!

 

This is the picture we got with the baby's feet up over its head which prevented us from getting a good look at the face.  I love this though because even though it isn't clear, we can easily see its legs stretched up and the foot above its head.  Cute!

And here is the best photo we could get of the baby's face.  It was clearer on the screen, getting a photograph of it isn't as clear.  But it does show the lips, cheeks, chin, and nose very well.  I definitely see a little bit of both my boys in this picture.  The baby is saluting us over his/her right eye!

On Wednesday, Eli and I went to his ENT appointment.  As we walked into the building we ran into one of our favorite nurses, Britini.  She was the very first nurse Eli had at PMCH when he was flown there after his diagnosis in Evansville.  Over the years and admissions, we've had her many times and are always happy to see her.  Eli doesn't usually recognize her because she's a PICU nurse and those are usually his sickest and most sedated times.  It was good to spend a few minutes catching up with her.  Then we made our way to Eli's appointment with Dr. Hamaker (pronounced "Hay-maker").  Both Dr. Hamaker and her nurse practitioner were very nice and we were comfortable with them.  Eli doesn't have any active ear infection going on right now...actually this past week has been the healthiest he's been since August!  No runny nose, cough, or ear issues.  I'm really glad he's feeling better, but doesn't it just figure that he's doing so well when we actually see the specialist?!?!  Even though his ears aren't infected, both of them saw fluid behind his right ear.  With the issues he's had over the past several months combined with his history of pretty serious infection and several ear infections over the years, Dr. Hamaker is recommending tubes in his ears.  However, because of his snoring (the kid is loud!) and some other issues, she wants him to first have a sleep study to confirm/rule out obstructive airway issues.  Just in case he needs something else done he would only have anesthesia once for both things.  What besides tubes would they do?  Honestly, I didn't ask.  I am assuming it would be tonsil and adenoid removal but like I said I didn't ask.  It's difficult to get all the right questions out at the right time when there's only one of us in an appointment with Eli.  He's a pretty good kid, but he is, well we could say demanding.  He's had so many appointments in his short lifetime that he is way too comfortable and yet he is thoroughly annoyed by them at the same time.  Lately, he does well with the actual exam but then is ready to go.  He doesn't want any talking between mommy & the doctor, he just wants out.  That's not a big deal for a regular check up but today it was problematic because there was a lot to discuss.  So, no, I don't always get the right questions out as I'm trying to focus on the doctor and on occupying Eli.  Frankly, I'm not concerned about because I know we'll have another chance to find out before anything is actually done. 

So, the plan with Eli is to get the sleep study, have tubes placed in his ears (and possibly another procedure with that if determined necessary by the sleep study), and then get a hearing test.  We know he has a slight degree of hearing loss or impairment simply because there's fluid present.  How much?  We don't know.  We could do a hearing test now to assess that, but whether we do it now or after the tubes, he still needs tubes so let's just do it after and assess where to go from there.  There is a possibility he could have some hearing loss due to his strokes, but she doesn't think that's the most likely reason.  The main culprit on our list right now is the fluid.  Also when he has tubes placed, Infectious Disease wants the fluid cultured to see what may be growing in it.  They feel that with Eli's history, there's a strong possibility it could be another "fun" bacteria we need to deal with.  For now, we wait for a call about scheduling his sleep study and we start there!

As we left Eli's appointment he looked at me and said "Now we go see my doctors and nurses."  It was clear he knew we were at PMCH and that we should visit the third floor.  I actually didn't plan on it since it was about 4:30 and I wanted to grab food and head home, but it was obvious I had lost any say-so in the matter.  We headed through the tunnels and hallways we know too well and made our way to the children's hospital.  On our way we ran into Melissa who was one of Eli's physical therapists at St. Mary's in Evansville.  She now works for St. Vincent and we just happened to catch her as she was heading to the employee gym!  What timing!  Then we got up to the third floor and had a short visit with some staff there.  It seems to always work out that many of our favorites are working when we visit.  Or maybe we have just been there too long and have too many favorites!  Oh well, they're all great and love seeing Eli.  As we walked in I told him he could not go to the playroom because it was for the sick kids.  He immediately told me he was sick.  When the nurses at the station saw it was him and began to greet him, one asked "How are you?"  I don't think she heard his answer of "I'm sick" because it was only meant as a key to the playroom.  It didn't work and he had to show off in other ways.  During our visit we even got to see Dr. Steinberg who is the cardiologist in charge of Eli's pacemaker (no, Eli doesn't have one now, but he did and likely will again).  When we left the floor he wanted to see his fountains (we used to spend a lot of time at the two hospital fountains after his strokes because they were off unit and provided some therapy as he threw coins in them).  They were on our way to our parking area so we saw both fountains and also ran into one of his dieticians.  We hadn't seen her in months and he was in full show off mode by then.  I had a hard time stopping him though because I wanted him to burn that energy off before I strapped him in the van for the long trip home!

After the visit we went through Hardee's drive through (those were my orders and at that point I didn't care what we ate).  We made it to the south side of Indy before Eli started asking/crying to be home with Daddy and Zachary.  He does great on these trips, but once he knows we're headed home he wants to be there yesterday.  So for the next two hours he intermittently cried, yelled, laughed at his movie, sang the Star Spangled Banner and Take Me Out to the Ballgame (seriously, two of his favorite songs and he knows a lot of the words to our national anthem), and refused to eat the burger he demanded from Hardee's.  He repeatedly said he'd eat it when we got home.  We got home and Bryan brought him inside.  They sat down with his burger and, as promised, he ate the whole thing!

I'll let you know when his sleep study is going to be and what comes after that.  I'm not even sure how soon the sleep study will happen since it isn't scheduled by the office we were in.  They'll refer him to that department which will be the one to set it up.  Thank you for your prayers and support.  We know we are lucky to have so many people pulling for us. 

Questions, Updates, and a Couple Prayer Requests

Questions.  Normally I don't mind questions.  We all have them.  It's how we learn.  I like it when people ask about Eli's condition, especially when they want more information about the specifics of his heart or ways to help raise Congenital Heart Defect Awareness.  I like it when people ask how the boys are doing, how they're growing, how are each of them doing in school, etc.  We learn by asking questions and questions are a way to show we care.  But then there are other times when questions are inappropriate.  Yes, I realize the person asking may not realize the question is inappropriate.  We've all done that, myself included, but it seems that I've had many questions that I think are inappropriate since announcing this pregnancy.  {Just in case you're behind in our family news, we are expecting our third child!  Due date is May 4}  Many times I just want to answer "Nunyadambidness"  If you need that in plain English it's "None of your damn business."  However, I haven't given that specific answer to anyone yet because a) I'm too polite or b) I'm in too much shock of the initial question.

The following is a list of questions I've gotten in the past few weeks.  They're in unofficial order of my perception of what's been asked most frequently to least frequently but at least once.  Below the question is what I wish I had said/could have said followed by what I actually said or did. 

You must be trying for a girl?
What I wanted to say:  Why do you care? or Nunyadambidness.
What I said:  Actually we're just trying for a baby.  If we get to choose, we'd probably chose boy again.  How fun would life be with three boys in the house?  And since we already have a couple of them, we have a lotta boy stuff and a false confidence that we know what we're doing whereas with a girl we know we have no idea what we're doing.  However, we are mature enough to know that we don't have any say-so in the matter so we will take whichever God has for us.  As Zachary learned to say last year in school "You get what you get and you don't throw a fit."

Was this baby planned or was it an accident?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Was that question an accident? 
What I said:  I really don't remember what I said, I'm pretty much in shock every time someone asks this.

Are you planning on more after this?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Will we be in violation of some code I don't know about if we were to have more after this one?
What I said:  No, we're pretty sure this one completes our family. 

Aren't you a little old to be having another?
What I wanted to say:  Why do you care?  or Nunyadambidness. 
What I said:  No.  Probably.  Yes.  Depends on the day.  Neither of us were getting any younger and neither of us want to set any Guinness records for having a baby when we're older.

Are you doing your Kegels?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or Do you really want to know the answer to that?
What I said:  Yes, as we speak.  (followed by an uncomfortable pause by the questioner)
***in case you don't know what Kegels are, they're squeezing exercises for women to do with parts they have that men don't.  If you need more info then Google it!

For weeks I wondered if I was just being too sensitive, too hormonal.  But I don't think so.  If it were my sister, a close friend, or someone else with whom I've shared private information those questions wouldn't bother me, but the people asking these questions are not close confidants.  I'm not someone who is easily offended.  Easily annoyed, yes, but you've really got to work to make me mad.  I wouldn't say these questions make me really mad, but it's getting close.  However, I do find the humor in it as well and just enjoy that.  Hope some of you find it funny.  And if you think you're one who has asked one of these questions, please don't be worried.  I probably don't remember who has asked what and if I do I'm not holding a grudge, just getting a laugh about it.

Another question, rather a statement, we often hear that I know I'm too sensitive about is "Well, as long as this one is healthy."  Of course we'd love a healthy baby, but what kind of hypocrite would I be if I said that was our first priority???  Honestly, healthy isn't what I've been praying for.  I've prayed for a happy baby, one that fits in our family just as seamlessly as Zachary and Eli each did.  I've prayed for my health (and sanity) as I deal with the normal pregnancy issues in addition to keeping up with Eli's needs and Zachary's needs.  I pray that I'm able to be there for three kids, to lead them, guide them, and spend enough individual time with each of them.  I pray that whatever this baby is like, we can accept and be prepared to take care of him/her.  But no, I can no longer pray for a healthy baby.  I can hope, but I can't ask God for that.  I don't mean to sound negative, I'm not thinking the worst and I don't have any "mother's intuition" one way or another.  I've just come to learn (maybe because I'm so old????) that I can't dictate that.  The plan is already made.  God knows what's in my heart, I just need to be ready for His plan. 

On that note, this coming Tuesday Bryan and I will be in Indy for a fetal echo and other testing.  Any testing we've had so far has given great news, but this will provide more information.  From what I understand the first part will be an echocardiogram (ultrasound of the baby's heart) by one of the cardiologists in Eli's Indy group.  After that a tech will take over and scan the rest of the baby.  Before we leave, a fetal maternal doctor will review everything and make sure they have all the images they need.  We should definitely have news about the baby's heart that day and I think we will have the other results as well but am not sure on that part. 

Then on Wednesday, Eli and I will be back in Indy for an appointment for him.  He has gotten an appointment with an Ear, Nose, and Throat (ENT) doctor for his recurrent ear infections and ongoing cold symptoms.  Of course he has no runny nose or cough right now and neither ear was red at his monthly check up last week, but this is easily the healthiest he's been since mid-August.  We expect the doctor may recommend placing tubes.  If so, that's normally a relatively minor procedure for most.  However, Eli requires some special considerations anytime we deal with anesthesia so his procedure would have to involve a cardiac pediatric anesthesiologist.  However, we haven't even seen the ENT yet so I'm probably getting way ahead of myself!

Prayers for safe travels both days would be appreciated.  Good news about the baby would also be appreciated but most importantly pray that Bryan and I accept whatever news is delivered.  Pray that the best path is figured out for Eli.  While we certainly don't want to put him through anything he doesn't have to have, he needs long-term relief from these recurrent ear infections.  We need to know what's causing them and treat the source.  And, a little selfishly, if something needs done, it would be easier on us to have it done before the baby comes.

Because of our busy schedule in the middle of the week, I may not post results from either appointment right away.  Please remember that no news doesn't really mean good news or bad news, we're just busy!  Thanks for the prayers and taking the time to read about us.  Remember to cherish Every Little Beat...