Thursday, August 30, 2012


If you're one of my Facebook friends you may have seen my post today -- "It's been the kind of afternoon that I'm pretending there's vodka in my orange juice. I figure that's better than the alternative -- pretending there's orange juice in my vodka."  Let me explain.

First of all, I am not much of a drinker.  There's a bottle of wine in our fridge that we bought before I was pregnant with Eli.  It should be chilled by now.  However, I was frustrated today and actually, kind of wanted some vodka in my oj.  Because it was 4 in the afternoon, I was home alone with the boys, and we had Zachary's Meet the Teacher Night at Preschool later, I chose to post that on Facebook and drink my plain orange juice.  What had me frustrated?  Thanks for asking.

It was supposed to be a simple reward for Zachary.  All summer we've let him fall asleep on the couch and then one of us (usually Bryan) will carry his sleeping, lead-filled body to his bed.  Since school starts for him next week, we've been working on getting him to fall asleep in his bed (again).  We'd prefer if he did that alone, without one of us staying until he falls asleep.  We always read two or three stories and then after the lights are out and the nightlight is on we'll say bedtime prayers.  To get back on track we re-instated the reward system that worked before.  It's pretty simple:  A chart on the wall titled "Zachary's Reward Chart."  Each night that he goes to bed without grouching or crying, and stays in his bed all night barring any bathroom issues, he gets a sticker on the chart.  After the first two nights he gets to rent a movie of his choice.  After three more nights he earns another movie.  Then it's a movie every 5 nights. 

Well, he did great Monday and Tuesday nights.  Stickers for both nights and Wednesday afternoon he and I went out by ourselves (thanks for staying with Eli, Mom!).  We dropped off the recycling (he enjoys helping unload the different plastics and throwing them into the proper receptacles), went for a spin through the car wash (always one of his favorites), then to Family Video so he could choose his movie. 

Zachary has always had some very strong opinions about many things, but choosing a movie takes. A. Long. Time.  He's so excited, he just can't decide.  After about twenty minutes of roaming the Kids Free Movie racks he settles on a Diego movie.  They have three choices, but only one is in stock.  He says he really wanted to watch Diego's Ultimate Rescue League, but since they didn't have it he'd take Diego's Panda Adventure.  I didn't bother to remind him that he's already seen both of them.  When we took the DVD box from behind the empty advertising box, I noticed it wasn't Deigo's Panda Adventure but the much longed for Diego's Ultimate Rescue League!  Oh joy of joys, I got to surprise him and make him happy :)  He was so excited as we went to the register that he was almost skipping. 

We check out with our free movie and he sings in his car seat the whole way home as he holds the precious DVD box with two hands so he doesn't drop & scratch it.  Sweetheart that he is, the first thing he says as we pull into the garage is, "I hope Eli's up from his nap so he can watch with me."  My already happy heart was about to burst because my darling child was happy with his reward and still thinking of his brother.  We go inside and Eli was awake.  Zachary eagerly rushes him and Mamaw Betty into the living room so we can watch his prized movie.  We put the DVD in and .... nothing.  I try pushing buttons (not randomly, I just won't go through the button sequence here).  We take the DVD out and power down.  I put it back in and start over.  This time an error screen appeared.  It told me to power down the system and try again, if the problem continued to consult the owner's manual.  First of all, I had just powered down.  Secondly, our tv with the built in DVD player was purchased over ten years ago, I have no idea if the owner's manual even made the move to Washington with us.  I obediently power down and try the whole thing again.  Same error screen.  Zachary's starting to get frustrated with me.  I try another DVD.  It worked.  I tried another (his suggestion).  It worked too.  I tried the rental for the fourth (or fifth?) time.  Error.  Blah, blah, blah. 

I told Zachary we'd have to take it back and get another movie.  He looked at me and a single tear went down his cheek.  That tear quickly turned into a full blown melt down that lasted about twenty minutes.  He was sobbing so hard that I really thought he was going to throw up.  Poor kid tried to calm down several times, but he couldn't help himself.  He understood that we could get another movie, but he wanted Diego's Ultimate Rescue League.  I wanted that one for him.  

The only other time I remember him breaking down like that was his first visit with us at the hospital after Eli's first surgery.  He was tired, had been suddenly separated from his parents and baby brother for a week, and didn't understand what was going on.  Remember he was barely three years old at this time.  He was obviously happy to see us, but was very confused about why we all weren't together at home.  After an hour of frustrating behavior from him he started crying and couldn't stop.  It seemed like it lasted forever and he finally cried himself to sleep on my lap.  Today's tear-filled episode was just a notch below that one. 

Finally he agreed to go back to the movie store.  As he handed the box back to the girl who'd just checked us out half an hour before he said "This doesn't work.  I really wanted to watch it, but we can't because it doesn't work."  The disappointment in his voice was enough, but coupled with the slightly runny nose and puffy, bloodshot eyes it was heartbreaking.  For me anyway.  I explained to her that we tried other DVDs to make sure it wasn't our system, but the movie still didn't work.  She apologized but there really wasn't much she could do.  It was a free rental and they had even cleaned it before we left the store.

We circled the racks, again.  He started perking up as he browsed the selection, again.  Another twenty minutes later he finally decided on a Bob the Builder movie that featured a dinosaur dig.  As I picked up the movie behind the display box my heart fell.  It wasn't the right movie behind the box.  I searched all the surrounding movies but it wasn't there.  I told him and he said, "Oh, man!" and started looking for another one.  We left with a Little Einsteins Christmas movie.  He was cautiously excited.  It worked, although it had a couple skips in it.  We really don't expect a lot from the free rentals, but those are the titles that capture his interest right now...and they're free!

You may be thinking, "Why is she so distraught over a kids movie?"  It may seem like Zachary was acting like a spoiled brat with his melt down, but honestly, he doesn't act that way often.  Why did it bother me so much?  He is the most generous, caring, sweetest boy I could imagine and he had earned his reward.  He enthusiastically did what we asked him to do and he earned his stickers and a movie.  He constantly checks on his brother, plays with him, changes his play so that it's something Eli can participate in, shares his food (whether we ask him to or not), etc, etc, etc.  I could go on and on about how great he is at this big brother thing.  This was something for him and he still wanted to share it with his family.

On top of that, he's been shuffled among various caring family and friends since Eli's diagnosis, accompanied us to countless extremely-boring-to-a-four-year-old doctor's appointments, participated in numerous therapy appointments, been Eli's biggest cheerleader and protector and yet has NEVER treated him with any type of jealousy or meanness.  He's often ignored when people see Eli and they start talking about Eli's cheeks or his health, but Zachary never complains.  Most people who really know us don't do that, but it does happen to him and much more often than I'm comfortable with.  No one believes that he's four years old, soon to be five (too soon for me!).  They often treat him as if he's seven or eight years old.  I understand that's just part of being a physically big boy who looks and usually acts much older, but I get so upset when I find myself doing it too!  On a daily basis I have to remind myself that he's FOUR.  The kid puts up with a lot.  Our daily life, our daily struggles are things he deals with just fine most of the time.  He does great with most things, but today, a small thing like the movie of his choice not working, put him over the edge for a little while and  it broke my heart to have a visual reminder of the stresses he's under as well.

I understand that life isn't always fair and he has to learn that too, but hasn't he had enough these past few months?  When we go to a store, he rarely asks for anything.  If he does, we can usually persuade him to remember to put it on his birthday or Christmas wish list.  He knows he can't have everything that he wants.  The difference is today he earned the movie of his choice and I couldn't provide it. I was frustrated that he was so frustrated. 

Zachary was pretty much over it by this evening.  We had a great time at his Meet the Teacher Night and he's excited about going to school next week.  It's always said that in life, it's the little things that matter.  Unfortunately, right now for me, the little thing is my son's temporary disappointment over a silly movie and I couldn't let it go.  That's a big reason why I blog, it's a release for me.  Thanks again for reading and caring about our ups and downs.

Saturday, August 18, 2012

Heart Cath Recap

Finally getting the chance to update everyone about Eli's heart cath!  Normally we can get a wifi connection at the hospital, but for some reason we couldn't this time so I didn't update while we were in Indy.  Once we were home it was just non-stop business!

We left Washington at 4:15am Wednesday morning.  I had only slept an hour the night before so I slept while Eli slept and Bryan drove.

We had to check in by 7 and made it in plenty of time.  We were worried that Eli would be very fussy because he couldn't have anything to eat or drink after 2am but he did really well.  He got a little peach hospital gown and cute little socks that he kept pulling off and putting on his teddy bear.  They had some toys on the bed for him while they did his vital signs and we went through his history and paperwork.  He loved the Sesame Street doctor's bag (Cookie Monster stethoscope, Elmo thermometer, etc).  When he got restless we put him in a Peyton Manning Children's Hospital car and pushed him around the hallways.  He wasn't cute at all!

Right before they transported him to the heart cath area he was given a dose of Versed.  Maybe I shouldn't laugh at my baby being drugged up, but it was so darn funny.  He was sitting up playing just fine and then he'd just slump off to the side.  Then he'd let out the goofiest laugh as his eyes were closing.  Then he was fine for a couple minutes before it started again.  We were both laughing at him and he obviously felt pretty good.  The following is a few pictures showing the progressive effects of the medicine:

Just before the medicine was given

About two minutes after the medicine and right as he was falling over the first time.

He just fell forward a second time after laughing at himself for falling the first time.
"whaaat's uuupppp?"
"Mommy, this is kinda weird."

"I can't keep my eyes open!"
By the time we were wheeled into the cath lab he was waving at everyone.  He yelled hi to the nurses who were waiting for him and they all just melted.  Eli was taken into a room and Bryan and I were escorted to the waiting area.  We were given regular updates by the staff and a little over two hours later Dr. Parikh came in to talk to us.

It's been almost a year since Eli's hemi-Fontan and this is the time frame Dr. Parikh likes to do the cath to make sure the arteries haven't narrowed or grown incorrectly.  The next surgery (Fontan completion) isn't for a few months yet so there's time to correct those things if necessary by placing stents or coils.  Dr. Parikh was very pleased with what he saw during Eli's cath.  He said things are growing as they should, the arteries look great and there's no need to do anything at this point.  He said he feels very comfortable saying Eli's Fontan completion can be tentatively set for spring/summer 2013.  What a relief!!!

We were taken to another waiting area and about 20 minutes later we got to see him.  He was asleep on the gurney and his lips and nose were very blue/grey.  However his vital signs were good with his oxygen saturation being in the low to mid 80s (his normal).  As time passed he pinked up, but it was strange to see him that color for so long.  One thing we noticed was how big he was looking on the gurney compared to last time we saw him on one.  He really is growing.   I guess he still looks pretty little in the picture, but he's more than 3 times the size he was when we started this incredible journey!

After a cardiac cath, it's very important the patient keeps their legs as straight as possible for 4 hours in order to decrease bleeding at the insertion site.  Have you ever tried to keep a toddler still for four hours?  That's where more drugs come in handy.  Actually Eli didn't need much, he was pretty groggy from the anesthetic.  However, he did manage to pitch a huge fit on the way from the recovery unit to his room on the peds unit.  I was reclining on the gurney with him on my lap.  His feet were between my legs so I could hold him fairly straight.  He got mad and started lifting his head and legs at the same time and using his left hand to pull at the IV in his right hand.  Somehow the nurse managed to keep pushing while adding tape to his IV site.  After we got to the room it was at least an hour before he fell asleep.  He was in one of his favorite positions -- on Daddy's lap with a bottle in one hand and the other hand rubbing Daddy's chin.  Again, he is so stinkin' cute!

Tired baby after putting up a big fight.

Holding my little man and Happy on Wednesday evening.  Love this groggy little man!
He looks mean here, but he was very sweet and just wanted held a lot.  He's always been a first class snuggler.

As the day went on we just laid around and answered to his every need.  It was actually a very relaxing day.  Once I finally accepted the fact that the computer wasn't going to connect to their wi-fi, I watched tv and read when the two boys slept.  Later, my sister came and brought us Chick-Fil-A for supper.  No, we weren't supporting anything, boycotting anything, or taking any sides; we simply wanted chicken sandwiches and Coke (the hospital is a Pepsi facility, that's the main thing I would change about that place if I could!).  If our eating there offends anyone, please send your comments to Colonel Sanders.

They're both pretty goofy, but Eli's excuse is that he had been under anesthesia earlier in the day and Ashley's reason is that, well, she's Ashley.

Eli got to order from the hospital's kid menu and he actually ate pretty well.  It was obvious his throat hurt a little from being intubated during the cath, but he still managed to eat and drink well enough to have his IV fluids shut off before bedtime.  He and Ashley played with her phone for a while (that's why he loves his aunts, they all have cooler phones than us).  He fell asleep in my arms about 10pm and slept until 4:30am.  He drank more milk, watched some totally ridiculous cartoon I wouldn't normally allow at home and was back to sleep by 6.  I showered and went back to bed.  Dr. Parikh woke us when he came in at 8 to check him over.  He said we were definitely ready to go home and to follow up with Dr. Kumbar (Evansville cardiologist) in 3 months.  Eli was extremely upset to be woken up by anyone and just wanted to snuggle and sleep more. 

My snuggle bears!
We ordered breakfast for him and started packing.  By the time breakfast arrived, Eli was awake and acting more like himself.  We had even had a visit from two dogs touring the peds unit in a wheelchair.  They were very calm and cute.  Their names were Macey and Gracey and Eli enjoyed watching them.  Our nurse for the day was Cari and we've had her several times before.  She always remembers Eli because her son is only a month older.  Eli wasn't happy with her at first because she removed the tape from his IV and the tags for his heart monitor.  I know it hurt, but it's got to come off!  He was fine with her by the time we left and was giving his famous high fives and fist pumps.

Showing the "ip" (dip) for his breakfast pancakes

"These shoes are made for walkin' and that's just what they'll do.  One of these days, these shoes are gonna walk right out of this hospital room."  Okay it doesn't rhyme, but that's the song that was going through my head as I was dressing him to leave.
As you can tell from his expression, he's still not quite back to normal.  His eyes were very heavy all day.  Incidentally, I'm standing just outside of the frame of this photo, please DO NOT LEAVE YOUR LITTLE ONES STANDING ALONE ON A HOSPITAL BED NO MATTER HOW CUTE THE PICTURE IS!

After a quick visit to the hospital gift shop (I am addicted to PMCH t-shirts, they should pay me to advertise) we drove away.  We stopped at a party store to buy a few supplies for an upcoming birthday party for two little boys (a joint dinosaur/Elmo theme is in the works).  Then we headed HOME!!!!

Hugging his giraffe who travels with us to every procedure/hospitalization/surgery Eli has had.  Zachary gave it to Eli the night before his first surgery and I held it the whole time he was in the OR.  Since then it always goes with us and I hold it when he's having something done because it reminds me of both my little guys.

I was worried about Eli's first night at home but he did really well.  Once he finally decided he could go to bed he slept well.  During the day Friday he was really fussy, but played a lot too.  It was obvious he and Zachary had missed each other and their toys a lot.  At one point they had nearly every toy in the living room spread across the floor.
Zachary said, "Are you angry, Mommy?"  All I could do was laugh and tell them not to pick up until I took a picture.  They were having fun and being silly together, who could be mad?

If anyone is wondering more about the cath itself, it's a procedure used to view the vessels and structures of the heart from the inside with a tiny camera.  It's inserted into the groin and travels to the heart.  While there, the doctor can also take measurements, blood pressures within the vessels and chambers, check the velocity of blood flow and lots of other stuff I don't understand.  They started in Eli's right groin, but couldn't get as far as they wanted so they pulled out and used the left groin.  Because Eli's heart is special and his flow has been altered through surgery, the doctor wasn't able to access the upper portion of the heart by going through the groin.  This was explained to us prior to his cath.  After doing all he could through the groin, Dr. Parikh found a vessel in Eli's neck, just inside his collar bone.  He started on the left side, but was unable to access it sufficiently so he went to the right side.  In total, Eli had four dressings, one in each groin and one on each side of his neck.  That means a lot of bandaids to remove and a lot of sticky residue left on his skin.  He can't have a bath for a week so I had him in the shower with me tonight.  We've been using some adhesive remover from the hospital but he's tired of us messing with him.  So if you see him in the next couple weeks, this is fair warning that you may stick to him.

It's normal to have some bruising around the sites and Eli is no exception.  Dr. Parikh told us he didn't leave any of those bruises on him, it must've been the nurses who pulled the sheaths and held pressure.  That was said with a twinkle in his eye and a smirk on his face because he knows I'm a nurse.  Anyway, here's what Eli looked like about 36 hours post-cath:
The right side of his neck where they went in.  You can see his bruised jawline and neck.  It extends around to the front of his neck a little and the right side has a small amount of bruising as well.  

The right groin looks pretty good, but his left side is very bruised up.  It's darker and bigger today (Friday).  This photo is also good for showing his lack of hips.  He's almost 22 months old and wears 12 month pants.  The other day he was wearing a pair of 3-6 month shorts.  The boy has no butt.  We may inquire about butt implants next time he has to be put out for a procedure.

 I guess those look terrible, but frankly, it's the result of something that had to be done.  And we got good news from it.  The bruising looks a little darker today, but it hasn't spread any. 

Zachary spent Tuesday night with my mom.  He decided it was a sleepover and took his sleeping bag.  He slept on the bag on Mom's bed.  She really enjoyed having him spend the night; it was her birthday and she got to have a  Birthday Sleepover with the cutest blue-eyed four year old.  The two of them stayed busy during the day Wednesday and then he spent the night with Mamaw & Papaw Veale.  Thursday was spent hanging around with Aunt Kendra and eating lunch at Granny's.  He had fun and felt secure which is all that matters to me!

Thanks again for all the prayers and support.  We're so lucky to have so many people who care.

Tuesday, August 14, 2012

Prayer Request

Tomorrow's the day.  Eli has a heart catheterization in the morning.  We'll leave very early in the morning to get him there on time.  We decided to not spend the night before because it's a pain to pack everything we need for just a single night AND he can't have anything to eat or drink after 2 am....we'd be kicked out of anywhere we stayed!

This procedure will be done by his main cardiologist in Indy at Peyton Manning Children's Hospital.  They insert a tiny tube (catheter) into a vessel in his groin and let it travel to his heart.  Once there they can get blood pressure readings in each chamber and within the vessels, pictures from within the veins, and loads of other stuff that's beyond me.  Yes, Eli is put to sleep prior to this.  It's a pretty simple procedure but of course there's still some risk since he has to be put out.  We don't know if he'll be discharged Wednesday afternoon/evening or if he'll spend the night.  We'll find out after the heart cath.  Other than missing Zachary, we don't care if he spends the night or not....we know they'll do what's best for him!

Eli had one of these done the day prior to his second heart surgery and he did really well with it.  The results were basically what the doctor had been expecting if not a little better.  We're roughly anticipating Eli's next surgery to be spring/summer 2013 and hopefully Wednesday's heart cath will be the only one he requires before the next surgery. 

Our specific prayer requests are as follows:

1)  Eli's safety while he's under anesthetic again
2)  for a safe trip to and from Indy
3)  for Zachary to not feel left out (he's staying with grandparents at their houses and at ours...he'll make it an adventure!)
4)  for Eli to not be too cranky from nothing to eat after 2 am.  We've started nighttime tube feedings again because he had been waking up hungry in the night.  Tonight I'll hold it until 1 am and give it to him over an hour.  Hopefully I sleep well prior to his feeding because we're leaving a little after 3 to get there on time so I probably won't go to bed after his feeding!

Thank you all for following along and for all the support.  I'll post again to let you know how it went.  I'm not sure when that will be, but please don't assume no news is bad, it's probably just that I haven't had a chance to get on the computer!

And if you see my mom anywhere today, be sure to wish her a Happy ??th birthday!!!!  Love you, Momma!

Monday, August 6, 2012

It's okay to ask

It's been happening more often.  That question.  It's asked by very innocent, well-meaning strangers.  I appreciate the fact they are just making conversation or even worried about the baby they see in front of them.  I really do.  I just don't know how to answer them without causing some amount of heartache for the questioner.

If you're kind enough to still be reading, you're probably wondering what in the world I'm talking about.  The question.  Or maybe I should say those questions.  The point is that I don't always know how to answer properly.

The questions are "Has your baby been eating a popsicle?" "Is your son okay?  His lips are blue."  "Do you need any help?"  We've expressed before that we are so grateful for the concern and support all of you show us in many ways.  We're also grateful for the concern of strangers, but I just don't know how to handle their concern.

For example, the other night the four of us took my mom to Red Lobster as an early birthday dinner.  Eli is unable to sit through any meal (home or restaurant).  You'd think he was a busy toddler or something.  He & I left the table to go for a walk.  It was very crowded that night and hot outside so I took him to the ladies room.  There was room to walk and girls to flirt with....let's face it, that's all he thinks he needs in life.  One lady was talking to him (yes, he was answering some of her questions) and she asked him if his belly was full.  He nodded yes.  Then she asked him if he ate something blue because his lips were so blue.  I would've just "ignored" the question, but she was looking directly at me and asked again, "did he eat something blue?"  I simply said, "No, he has heart problems and his lips are often blue."

Immediately her face fell and she started apologizing.  I assured her I wasn't upset and thanked her for her concern.  I know why strangers apologize in this situation, I probably would too, but it's still kind of funny to me.  It's not like she caused Eli's defects or has blocked us from receiving wonderful medical care or anything.  It's just a lack of knowing what to say when told the beautiful baby you've been conversing with in a Red Lobster ladies room has such hardships.  It's an apology that, through no one's fault, the same beautiful baby and his (equally beautiful) family have to endure such a tough situation.

Sometimes people will ask more detailed questions and I'm happy to answer them.  Sometimes people leave it at that and the conversation ends.  Sometimes (most often) they ask one more question, "Is he going to be okay?"  Another fully loaded question that really can't be answered honestly without some explanation they're probably not ready to hear.  Usually if we're asked "is he going to be okay?" I'll simply say, "He's doing well for now and we've got a lot of people praying for us."

Again, I love the questions.  Knowledge is power.  It doesn't upset me to talk about it.  I just don't know how much a stranger wants to hear, even though they're asking the questions.  You can see on their faces how much they're encouraging me to say that, yes, it's been tough, but he's healed and will live a very active life until he passes at a ripe old age.  But I can't do that.  I hate to disappoint them, but the truth is the truth.  In my mind the most positive thing that comes from the occasional question from a stranger is that more prayers might be offered up for Eli and other kids like him.