Friday, August 30, 2013

Holding Pattern...Days 7 and 8

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

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

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

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

Pablo is still helping Eli through thick and thin!

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

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

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

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

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

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

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

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

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

Wednesday, August 28, 2013

Busy Times...Days 4, 5 and 6

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, August 26, 2013

Back in the Hospital... (I Mean Saddle!)...Again; Days 1, 2, and 3

Thursday, 08/22:  Eli was running a high fever for hours.  It didn't come down until Friday morning despite alternating doses of Tylenol & Motrin every three hours.  He was also vomiting, dry heaving, and (most concerning to me) his oxygen sats were lower than normal.  Even with raising his oxygen to 1L he was sating 92%.  Usually he stays 95% or above with 0.5L.  I also noticed he was working harder to breathe and breathing faster than normal.  I debated a trip to our ER, but decided to keep an eye on him and take him if he got worse.  By the time offices were opening I was texting and calling so we could get the ball rolling with him.  I wasn't sure what was going on, but we knew it wasn't normal and needed addressed.

Friday, 08/23:  After speaking with our cardiologist and Angie with Infectious Disease it was decided to admit him to the hospital.  I packed up (most of it was ready to go anyway!) and we headed north.  Bryan stayed in town to finish the workday and be with Zachary after school.  When we got to the hospital we were what they call a direct admit.  We still have to go through the ER but that's just for them to get his vital signs and hold us until his room is ready.  Once we got to the ER, Eli's sats were down to 77%. 

We were taken to a room on the third floor (general peds unit) and he was seen by a hospital intensivist and by the Infectious Disease doctor and nurse practitioner.  He was admitted and sent for chest xray.  Then back to the room for an IV and lab draws, including two blood cultures.  Then we went for a chest CT.  The purpose of that was to see if he had any large areas of infection to blame for all these issues.  After all that was done we got to settle in for the night.  His room is one of the cool "Peyton Manning" rooms meaning it's decorated with Peyton and Colts memorabilia.  After we'd been in the room a couple hours Eli was looking around and got excited to see Blue, the Colts mascot.  He's in a big boy bed instead of a crib.  They said they could get us a crib if I wanted but I think he likes the openness of the bed and is doing fine for now.  We know that when he's feeling better he will have to have a crib for safety purposes because he will be on.  The.  Go.

Eli had a pretty good day and night Friday but he is still a very sick little guy.  Because of everything going on he is considered septic right now.  He threw up once at the hospital but was able to eat and drink some and keep it down.  His fever was gone (without any Motrin or Tylenol) but his skin still felt very warm.  Despite being on 2L of oxygen he was still breathing fast and working hard to breathe.  His oxygen saturation varied in the 80s most of the night.  He had IV fluids going for hydration, nighttime PediaSure feeds for nutrition, and was also started on Cefazolin (antibiotic) to start fighting whatever infection was present.  After the blood cultures are back we'll know if we should change to another.  

Saturday, 08/24:  The day started off with an echocardiogram.  Eli didn't fuss much and she was able to complete it quickly.  Throughout the morning we saw several of our docs.  It started with the hospital intensivist for the day who had taken care of Eli multiple times on our previous admission April-June.  Dr. Whalen had a lot to discuss about Eli.  He said that Eli's body is very strongly fighting an infection.  His white blood cell (WBC) count was very high at 27,000, his bands were high and his CRP was high at 21.  {Translation:  WBCs are cells in our blood that fight infection.  Bands are immature white blood cells.  Eli's body is fighting so hard that it is sending out immature WBC ("untrained troops") to fight.  The CRP is another indicator of infection or inflammation present in the body.}

The good news didn't stop there.  The CT scan showed the effusion that had been drained Tuesday was back.  The scan also showed areas of atelectasis (develops when the tiny air sacs (alveoli) within the lung become deflated).  Basically the upper and lower lobes of Eli's right lung weren't moving air.  The middle lobe wasn't moving much because of the effusion.  Dr. Whalen wasn't sure if the atelectasis is due to the effusion or pneumonia.  That's right, possible pneumonia.  Also, the blood cultures they drew Friday were growing a bacteria.  It would take another 24 hours to identify which organism was growing and then another 24 or more hours to test which antibiotics it may be sensitive to.  Because we had a positive blood culture, Eli was started on Vancomycin in addition to the Cefazolin.  At this point there are still a lot of pieces to put together, but at least we have a starting point for treatment. 

Dr. Abraham (heart surgeon) came in to see us.  We hadn't seen him since June 4 when we were discharged after the long Fontan admission.  I asked if he'd missed us and with a smile he replied, "No, not really."  He talked to us about the different things we'll be addressing in the next few days.  He wants to place a chest tube tomorrow (Sunday) to help raise Eli's sats and make it more comfortable for him to breathe.  That may also help decrease the atelectasis and allow Eli to fight the pneumonia a little more.  At some point he wants to do a tagged white cell scan.  They inject a radioactive dye into Eli's IV and it attaches to the white blood cells.  Using nuclear imaging they follow the glowing WBCs and see where in his body they're gathering.  That could give us some information regarding the source of his infection.  He has been clear with us since Eli's abscess in May that the pacemaker may need to come out.  If it does come out, we could possibly treat Eli with strong antibiotics for several months and then revisit the possibility of putting a pacemaker back in.  However, he said first thing's first and that is the chest tube.

We also had visits from Dr. Belcher (Infectious Disease) and Dr. Kumar (cardiologist).  They didn't really have any new news for us other than Dr. Kumar saying that the echo looked stable in comparison with Eli's last one and it also didn't show anything in the heart that would indicate infection.  An echo isn't the primary way of discovering cardiac infection but it could show up there if it's present.  He said that Dr. Steinberg (another cardiologist, this one is in charge of the pacemaker settings) will interrogate the pacemaker this week.  That means they'll access the "memory" and see how much Eli is using the pacer.  If he's not very dependent on it then it will ease some of our fears if the pacer has to come out.

Bryan and Zachary got to the hospital just before lunch and we got to visit together most of the day.  The two of them left for the Colts game and spent the night at my sister's house.

Sunday 08/25:  Bryan got to the hospital mid morning and the three of us spent some time together.  Zachary stayed at my sister's house and later went with one of Bryan's sisters.  They went miniature golfing and Zachary got a hole in one :)  He said, "I just can't believe it!"

Eli was brought down to the PICU about 10:30 to have his chest tube placed.  Bryan and I waited out in the lobby like we have a few times before.  This time we waited a long time.  Just as we were starting to voice our concern to each other, one of the PICU nurses came by and gave us an update.  Eli was doing fine, but Dr. Abraham was having trouble accessing the effusion.  He was going off the chest xray (as he did with all the other chest tubes he's placed in Eli this year) and tried one spot , but didn't get any fluid out.  He tried a second spot and got a small amount of fluid but knew it wasn't enough.  He had an ultrasound tech come in and verify exactly where the fluid was and what it looked like.  He didn't like what he saw on the ultrasound.  Eli has a pocket of fluid but it's in a difficult spot to access.  He could maybe get it if he went in Eli's back instead of the side, but that would be very uncomfortable for Eli in the coming days.  Complicating things further is what's happened to the effusion.  It's not a single sac of fluid, it's actually multiple sacs.  The term used is loculated.  It has several sacs together, kind of like a honeycomb.  If Dr. Abraham were able to get a chest tube in the right spot, he could only drain one or two of the small sacs and there would be multiple more to get.  Dr. Abraham wasn't comfortable proceeding further in this setting so he's taking Eli to the OR Monday.  I honestly didn't get to hear much of what he was explaining about the OR because Eli was crying a lot at the time.  I couldn't even think of questions but that's okay because I wouldn't have heard the answers!  I know I will see him or Sara (nurse practitioner) before the procedure so I'll get a better explanation of how this will be addressed then.  Eli is tentatively set for noon but it could be bumped to later depending on how the cases before him progress.

Because his sats were low and he was working so much with each breath, they kept him in the PICU for the night.  We don't know for sure but I suspect there's a strong chance we'll be here tomorrow night too.  For now they can hold our room on the third floor so we don't have to move all our stuff, but we don't know how long they can hold it.  It just depends on how many admissions they get while we're gone.  Eli has rested some tonight and had a lot of fussy times.  He's on something I'm not familiar with called Vapotherm.  It's an oxygenation system that delivers heated and humidified oxygen with positive pressure (meaning it's harder for the patient to breathe out what we want them to keep in).  It helps reduce the amount of work it takes for Eli to breathe right now.  It's delivered through a nasal cannula so he can still talk, eat or drink.

So, in a long nutshell, that's what's been going on the past few days.  We don't have a lot of answers but we are making some progress.  There is absolutely no talk of discharge anytime soon.  I've already started making a mental list of things I'd like Bryan to bring when he comes back next weekend.  Yes, Bryan left to take Zachary back home.  He really debated staying for tomorrow's procedure, but to be quite honest he doesn't have a lot of vacation/sick days left.  We don't know what we may be facing in the next few days or weeks so he decided to go back to work.  The advantage is that Zachary will still have one parent in Washington and they can be together almost every night.  Our hope is that Bryan won't have to use any of the days he has left and can use them for pure enjoyment around the holidays!

We can definitely use your prayers.  Two of the docs have independently told us this is a very complex case right now and we have a lot of work to do.  Eli is strong and it's awesome that his body is fighting they way it has been.  However, we don't want him to have to fight this hard!  We want him to go home and tear up the house, sneakily open the child lock on the cabinet containing the potato chips, and sit on the couch watching the Reds with Daddy.  That's where he belongs and what he's good at!

Specific prayer requests:
- for Monday's trip to the OR to be safe and productive
- for guidance on the right path to take as we put the puzzle pieces together
- for Eli to get some peaceful rest.  He's hurting tonight and just generally uncomfortable (and probably mad at us!)
- for Zachary as he adjusts to our separation again
- for Bryan as he assumes the unwanted role of being a single working dad
- for me as I try to take good care of Eli, ask the right questions, and properly relay information to Bryan and all of you

Thank you for the continued prayers and support!  It is really uplifting to see your words of encouragement and know Eli is lifted in prayer from so many!  Thank you :)

Monday, August 19, 2013

Funny Things

{For the past several months, I've been randomly typing conversations with the boys and saving them here.  With all the seriousness we've had lately, I thought it would be a good time to share some of their funny sayings!  I'll come back and add to this as they crack us up with more funny stuff!}

We all want to remember the things our children say.  I love their sweet little voices.  I love hearing them say new words (most of them!).  I love witnessing them experiment with their voices as they discover whispering, yelling (for a little bit), and most of all, their laughter.  My boys crack me up.  Even when I'm soooo frustrated with the things I let get me down (messy house, two-year old behavior, five-year old behavior, scheduling everything we have to do, etc), they still make me laugh.  Here's a few examples I've been keeping track of just so I don't someday forget.  Hope you laugh along with me:

One night as I was heading out to pick up a pizza for supper:
me:  "Zachary, do you want to ride with me to Papa John's?"
Z:  "Yes, I'm tired of looking at Eli's orange shirt with Mickey & Donald on it!"

As we were leaving the house to run errands:
me:  "Hey, dingbat, you forgot your jacket."
Z:  "No, you're the dingbat for helping me."
I have no idea what he meant but the silly tone he used made it hilarious.

Walking through Sears to burn off some energy as we waited in line for Reds autographs at the Bloomington Mall:
Z:  "Wow!  This must be the NICEST store I've EVER been in!!!!" (very loudly and with lots of enthusiasm....lots of people heard)

Zachary telling Aunt Kendra about getting our picture taken with the mayor later that afternoon for CHD Awareness Week:
me:  "Tell Kendra what we're doing this afternoon."
Z:  "Having our pictures taken."
K:  "Why?"
Z:  "Ummm, about sick hearts."
me:  "Tell her who else is in the picture."
Z:  (totally serious)  "Mommy, Daddy, Eli, me and a mirror" (mayor).

Eli and I were walking through WalMart while Bryan and Zachary checked out some stuff.  To occupy him I was asking him what sounds animals make:
me:  "What does a doggie say?"
E:  "woof woof"
me:  "What does a kitty cat say?"
E:  "meow"
me:  "What does a duck say?"
E:  "quack"
me:  "What does a cow say?"
E:  "moo"
me:  "What does mommy say?"
E:  "moo" (insert mischievous smile)

Zachary played basketball through the YMCA.  Bryan was his coach.  Most of their practices and games were at Lena Dunn, a local elementary school, but one practice was at the YMCA.  This is how Zachary explained the change to us:
Z:  "We aren't having practice at our usual stadium.  Usually we practice at Lena Dunn Stadium, but this time we have to go to the YMCA Stadium." 
I love that my five year old thinks he plays basketball on a six foot goal in a stadium.  Before his first game last year he thought the lights would go out and a spotlight would shine on each player during the starting lineups (they don't even have starting lineup announcements in Biddy Ball).  I suppose we set his standards too high by taking him to all the basketball games we did when he was really little!

Zachary loved the Super-Bowl halftime show performance by The Black Eyed Peas.  We recorded it on our DVR and the boys randomly watch and get their crazy groove-thing on.  Sometimes instead of dancing they play music along with the show.  This particular night they danced.  After watching it twice and dancing both times:
Z:  "Whew!  I'm as sweaty as a hot tire!"

Both boys like to help with laundry.  They like the sorting process, falling into the piles, loading the washer, and switching clothes from the washer to the dryer.  This particular evening, as Zachary walked through the dining room carrying a random pillowcase, I asked Zachary if he'd help me move clothes to the dryer.  His response?  "No, thanks.  I have to practice juggling."

The four of us were having late night snuggle time on the couch.  Eli was on Bryan's lap,  and Zachary & I were curled up at the other end of the couch.  We were trying to get them to fall asleep (so we could watch the second half of IU!), but Zachary was fixated on what was for lunch the next day.  He kept coming up with a new option, despite the fact that we'd asked him to stop worrying about it. 
Z:  "I like to ask questions.  If I ask questions I get answers.  I like answers about my food because they tell me the answers to my questions.  But I don't have any questions about how the Earth spins around because I already know that."

Duck Dynasty has become a favorite show around here.  We really don't watch it that much, but when we do we always laugh.  Eli started saying "Hey, Jack!" like Uncle Si on the show.  Now that has translated to many of his phrases starting with "Hey (insert phrase)"  Examples:  "Hey, no!"  "Hey, mine!"  "Hey, bye-bye!"

One evening over supper Zachary was day dreaming.  We asked what he was thinking about and he said, "I wonder who my wife will be."  He provided a short discussion about who he had in mind (name withheld for privacy).  I told him he didn't have to decide now, he could wait until he was a little older.  "Maybe wait until second grade?" I asked.  He replies, "No, Mommy, I'm ready now.  I'll ask her tomorrow."  So then I asked if he knew what it meant to have a wife.  He says, "Yes, marriage.  We get married."  I asked if he knew that meant he would leave Mommy and Daddy's house and go live in a house with his wife.  He very calmly laid down his fork, folded his hands and leaned forward.  His reply was "Yes, Mommy.  It will be hard and it will be sad."  Then he picked up his fork and ate like nothing serious had just happened.  I stopped talking about it then because I was afraid I would cry!!!
  ***addendum -- He did not ask her the next day.  It's been several days and he hasn't mentioned it again.  

This one doesn't involve an actual discussion, but things we realized Zachary wasn't saying correctly.  All three were said in the same conversation and Bryan and I were having a really hard time controlling our laughter by the end of it.
Z: "maparoni" =  macaroni
Z: "apple spider" = apple cider
Z: "bengal" = bagel (this one took us longer to figure out than the others)

Eli must have heard someone use the phrase "You ding-dong!" because he says it all the time now.  Except what he says doesn't sound like "ding-dong," it's more like "ping-pong."  Sometimes it comes out "ping-pom" which is funnier.  Even funnier was the day he yelled it at me with his pacifier in his mouth and it sounded exactly like he called me a tampon.  When he saw the startled looks on our faces, he had to yell it again.  Of course there were many people around when he did that so who knows what people think we're teaching our toddler! 

Saturday, August 17, 2013

Infectious Disease Appointment Update

Yesterday (Friday) Eli had his appointment with the Infectious Disease Nurse Practitioner.  Her feeling is that the effusion in his lung cavity has turned into an abscess.  That means it's infected.  Their plan is for the abscess to be drained and the contents sent for culture and other tests.  Eli will restart an antibiotic.  We go back to Indianapolis on Tuesday the 20th for it to be drained.

It will be done by an interventional radiologist (IR).  Eli will be sedated (he ALWAYS has to have a pediatric cardiac anesthesiologist for any sedation).  The IR will use an ultrasound to find the correct placement and then he will drain everything he can.  A complication we may be facing is that his abscess may have become an empyema ("em-pie-e-ma").  That's a collection of pus in a body cavity, usually the pleural cavity.  Those are very hard and more difficult to "pierce" and drain.  We won't know until the IR gets in there.

The procedure is scheduled to be done on an outpatient basis, meaning we should be discharged after he wakes from the anesthetic and shows good vitals, can swallow well and is acting normally.  Of course with Eli there's always a chance things can change, so we've been advised to be prepared for an admission.  My bags and Eli's are already packed since we didn't know if he'd be admitted or not from Friday!

He will have to restart antibiotic therapy.  I assumed he'd have to have another PICC line and we'd administer IV antibiotics to him through that.  When Angie NP talked to Dr. Belcher, he said he'd rather Eli didn't have a PICC line at this time.  He thinks we can try oral/gtube antibiotics and see how that goes.  He doesn't want another opening into Eli that would possibly allow for another site of infection.  That's not to say he won't need one in the future, but at this time Dr. Belcher feels it's safer to go this route even with the possibility of a future PICC line (which we're all hoping to avoid).  The choice of what type of antibiotic will be made after cultures come back showing what organism we're dealing with.  Everyone expects that it will be staph aureus which is what he had after the Fontan. 

Draining this may not be the last option for Eli.  If he still has fevers and elevated labs, our next option is to look at the wires holding his sternum together.  Because he had the abscess on his surgical incision and we know it went down to the bone, there's a chance there are some staph aureus cells are hanging out on those sternal wires and causing problems.  To determine if that's the case he will have to have a CT or MRI (which one will be determined when/if the time comes).  If that test shows there's infection/inflammation around the sternal wires, Dr. Abraham (cardiac surgeon) will have to open up his incision (again) and remove the sternal wires.  Then there would be more antibiotic therapy.

If that doesn't take care of it, we'd have to look at removing Eli's pacemaker.  As of now, both Angie and Dr. Belcher feel that the infection isn't in that area, but obviously can't rule it out long term.  Any foreign material in Eli's body -- sternal wires, pacemaker, stitches, etc -- could be the cause of his infection.  In a way we're lucky because we have some very probable starting points.  We know he has an effusion and we know he had a sternal abscess that went to the bone.  Those are the two primary spots to treat.  Their first choice is to drain the abscess/effusion because that procedure will be easier on him so it's the easiest place to start.

Hopefully that will take care of it and we don't have to worry about opening the incision on his chest again.  We know we have to do something though because this long term run of fevers and present infection is starting to take its toll on Eli.  He's sleeping more, he vomits more often, and just in general has more low-key play than usual.  He definitely still has his wild moments and acts crazy, but he also grabs his blanket and Pablo (stuffed penguin he hasn't let go of since early April) and will curl up to rest more often.  He's also asking for more snuggle time from me and Bryan.  Of course we love any snuggle moments we get from our boys, but not because they don't feel well.  

Specific prayer requests:
- that Eli's procedure goes well on Tuesday and he doesn't require an admission.  We know they'll do what is best for him.
- that Eli doesn't get too upset the morning of the procedure because he can't have anything to eat or drink for eight hours prior to it.  It's so hard to deny him when he's asking for something and just doesn't understand.
 - that Zachary does well with us being away taking care of Eli...again.  Zachary has done very well with his first week of kindergarten and we are trying very, very hard to keep things as normal as possible for him.
- prayers for Caleb and Liam.  They are fellow heart babies whose families we've grown to love and pray for on a daily basis.  Caleb has been inpatient at Riley hospital since November 1 and is patiently & faithfully waiting for his new heart.  Liam has been at Cincinnati Children's Hospital since June and is undergoing treatment for Castleman's Disease before he can be put on the transplant list.  Both of these families are expecting a new baby soon in addition to all that is going on with their heart babes.  Incidentally they're both expecting girls....don't you think "Jessica" is a wonderful baby girl name?!?!

If you're able, please wear your Eli's MVPs tshirt on Tuesday as he undergoes yet another procedure in this CHD journey.  Also, we've had a lot of requests for shirts, so we're gathering orders to place.  I will take orders throughout the month of August and turn it in early September.  Usually we have the order within ten to fourteen days after we place it.  If you haven't ordered yet or would like additional shirts, please contact us via email at or on Eli's Facebook page by clicking here.  Tshirts are $15, hoodies are $25, we have three color choices of each item, and it's $2 more for sizes 2x and up.  We have youth and adult sizes available.  We're also excited to start another fundraiser for Eli's MVPS that many of you will LOVE!  Our friend Tiffany Gilley is a Thirty One consultant and has volunteered her services to raise money for Eli's future expenses.  We'll have more info on that soon. 

Thank you all for your prayers and support.  We'll post updates on Tuesday as best we can, but I don't know what kind of time we'll have.  Once again, please assume that no news is good news. 

Wednesday, August 7, 2013

Overdue Update

Most of you know Eli was discharged from the hospital back in June.  June 4th to be exact, which was seven weeks after the pre op day for his big 'ol Fontan the next day.  When he came home from the hospital, we knew he still had a pleural effusion.  The pleura is a thin membrane that lines the surface of the lungs and the inside of the chest wall outside the lungs. In pleural effusions, fluid accumulates in the space between the layers of pleura.  Eli battled with effusions throughout this post op recovery.  These are very common after this surgery, so we were prepared for him to have them.  We were not prepared for them to still be a nuisance almost four months after surgery. 

His first couple weeks at home were pretty uneventful.  Well, uneventful as in his breathing wasn't labored, we had no issues with his newly implanted pacemaker, and basically no surprises.  What was eventful was adjusting to his new medication regimen, including being on oxygen anytime he was asleep and all the equipment that goes with being on oxygen (and trying to keep oxygen on a two year old), getting back into some sort of a routine, resuming nighttime feeds of a special formula that could only be at room temp for four hours but had to run for nearly twelve (meaning mom or dad was up several times a night to add formula and administer nighttime meds), and adapt to the low fat diet he had to be on for several weeks to fight the effusion.  Not to mention, trying to adjust to being at home after spending seven weeks in the hospital.  Eli started having night terrors (which NEVER coincided with a formula addition) and he still has them sometimes.  He did that after his second open heart surgery and it's lasting longer this time.  That makes sense to me because he's older, he remembers more, and he was in the hospital for much longer.  

After things started to settle into somewhat of a routine, one night we noticed he had a fever.  I don't remember exactly what the temp was that night, but it was well over the temp we were told to call the doctor about.  The fever broke after one dose of Tylenol, but it happened again the next night.  And the next.  He was pretty normal during those days but spiking fevers at night.  Of course our family doc was on top of it, but since we had an upcoming cardiac check up, we waited to see what they wanted to do.  The cardios told us if it happened again to take him for lab work while his fever was high (and before administering any meds to bring it down).  So the next night, I carted Eli off to the hospital about 10pm when he spiked his fever.  He had two cultures and other blood work drawn.  The cultures came back negative, but some of the other lab work was kind of off. 

As oddly as the fever spikes began, they subsided.  What we were left with were random, daily low-grade fevers.  For the most part they didn't seem to bother Eli much.  His oxygen saturation levels were pretty consistent and his play time, appetite, and sleeping weren't changed much (as much as you can be consistent for a post-op two year old!).  We began a course of having a chest xray and blood work about every two weeks. 

After his last round of xray and blood work, Dr. Abraham (cardiac surgeon) said he wants Eli to be seen by the Infectious Disease doctor who handled the case while Eli was inpatient.  If you don't remember, Eli was diagnosed with staph aureus in his blood a few days after surgery.  Because of that, he was given a PICC line and about five weeks of antibiotic infusions.  We expected to come home with the PICC line and administer the antibiotics ourselves, but since other factors kept him inpatient for so long, he finished the regimen and did not have to come home with the PICC line. 

So now we will take him back to Indy next week to see Angie, the nurse practitioner for Dr. Belcher (Inf Disease doc).  Angie used to be the NP for the PICU (pediatric ICU) at Peyton Manning Children's Hospital and has been part of Eli's care since the afternoon he was flown there.  She was involved in his care for his first two open heart surgeries and we when we went in for Eli's third we were sad to hear she had left her job in the PICU.  As fate would have it, she was working for the doctor who was called in to consult and treat Eli.  Of course we wish Eli didn't require care from this department, but since he does, it's a huge comfort to know it's someone very, very familiar with his case.  We were very comfortable with and liked Dr. Belcher a lot, but Angie had an opening before he did and we are just as comfortable with her.  Frankly, she'll report to him anyway, so in this case it's like having two experts involved.

What do we expect from this appointment?  I'm not sure.  I think we may be past the point of "give it two more weeks and we'll see what the labs show."  This is just me guessing.  I think he'll probably have another round of antibiotic treatment.  That itself doesn't bother me.  What I'm worried about is how it would be administered.  If it's an oral med (which we would put through his Gtube) that would be manageable.  If it has to be intravenously administered (into the bloodstream) that means he'll have to have a PICC line again.  That would be, at minimum, an outpatient procedure where he is sedated and they surgically place the line.  If he has that done, I don't know if they would keep him overnight or longer to make sure it's working before sending him home on antibiotic therapy.  Then there's the whole issue of having a two year old with a direct line deep into his body requiring special care.  Again, this is me thinking ahead (good idea?  We'll never know!).  You may be wondering why we would actually do anything if he's acting okay.  Well, there's a chance ID (infectious disease) will "just watch" a while longer.  What we have to remember is that Eli had a very serious blood infection and sternal incision abscess recently.  Is that totally cleared up?  His sweet little heart had many incisions during his Fontan and mitral valve repair, the infection in his bloodstream could easily get into those incisions and cause major problems.  He also has a pacemaker.  If his body is reacting to the presence of the pacemaker, it may have to come out. 

There's a lot of what ifs we have to consider while trying to not get stressed about it until we have to!  It's really hard not to think about how serious this could get.  Life has been tough since the Fontan.  Obviously the length of his hospitalization was not what we expected.  Once we got home, things did not get any easier.  We would do anything for either of our boys, but it's still hard operating on very little sleep, dealing with insurance issues and case managers, keeping up with all the medications, and still trying to deal with all the normal, daily life things that need done like laundry, dishes, grocery shopping, meals, and spending time with the boys that doesn't revolve around medical issues.  

Someone was surprised recently when I mentioned I hadn't been able to work since before Eli's surgery.  She asked if it was because I had to give Eli medication throughout the day.  I told her it wasn't hard to give the medications, frankly a monkey can do that.  In all honesty, Eli pushes a lot of the meds through the tube himself.  Zachary has made it his job to hang the bag and enter the settings on Eli's feeding pump each night.  The hard part is keeping track of what needs refilled when, keeping all his supplies stocked appropriately, keeping enough oxygen tanks on hand along with tubing and monitor sensors, and making sure we have the right formula, bags, tubing, extra buttons, and cleaning supplies stocked for his feeding tube.  Thankfully all that's through one pharmacy, and they honestly make it as easy as they can for us, but I'm still on the phone with at least one department once a week (if not more) to keep up.  That's not to mention scheduling his appointments, going to his appointments, going for his different tests, scheduling and being present to get the deliveries from the pharmacy, and calling status reports to doctors.  I haven't even mentioned there are two kids to take care of in the midst of all that.  In addition I had a serious health issue that couldn't be ignored about a month ago.  All of that and more while trying to do those daily chores, all the extra medical-related stuff, and, more importantly, trying to make our family feel like a family again after a really rough, some could even say disappointing four months.  So, no, I haven't had the opportunity to "work" yet.  I haven't had more than two hours off from this job since the end of March.  A paycheck would be nice but it would be hard to beat the precious slobber and sneaky tickles I get at this job!

While I'm on my emotional high horse, I'm giving fair warning now to the next person who says anything about the "convenience" it is that I'm a nurse and have a child with such medical issues.  It is not a convenience and I'm tired of people assuming I'm automatically equipped to deal with this because I passed a test that gives me the privilege to sign RN after my name.  There is no class that teaches nurses to change tubes in your own child's body, to explain to your other child that the baby in the magazine without tubes is "normal," to wonder if there's anything you could have done differently during pregnancy to save your child and family from this, to hold your screaming child through yet another blood draw or dressing change, to hand them over to the medical team who literally have his life in their hands, or to watch your child suffer surgery after surgery after procedure after blood draw after surgery in hopes of saving him from death.  It also infuriates me for all the wonderful heart parents (my husband especially) who aren't nurses and their heart warrior is doing well despite their lack of a nursing degree. 

I don't mean to give the impression that we have a crappy life and I'm unhappy or anything.  Yep, it's been a hard four months and counting.  Life is hard, but compared to what?  Not having Eli?  Unthinkable.  These are the boys we've got, the life we've got, and the life we're looking forward to living.  There's not much we'd change...probably just a little more sleep (then maybe I could safely work a shift at the hospital?!?!).

We have had fun in the past few weeks too.  If you read the last post you know we went to Holiday World last week.  We thought about not taking Eli, but decided it had to be a family vacation and we are a family of four.  It's another example of trying to balance keeping him healthy while trying to be normal.  Bryan and I have had two dates and also got to attend his high school reunion.  While there, I got to talk with a few of the other "Wives of the WHS Class of '93." One of them I've known since my high school days.  She very nicely asked me if I was always so upbeat.  Her question really shocked me because I don't feel like I am all the time.  I usually feel like I'm a disorganized mess who barely keeps my head above water.  She said that my attitude always seemed positive even when things weren't going well.  It made me realize that I do have a pretty good attitude.  I hope that doesn't sound conceited.  I just mean that I've learned I cannot let this get to me all the time.  We're learning to handle it the best way we can.  I have my moments.  I have lots of moments.  One of them is illustrated in a rant a couple paragraphs above this.  But I have other moments, positive moments that I wouldn't trade for anything. 

The latest on Eli?  He's nuts.  Seriously, the kid is crazy.  He's a lot of fun, he's silly, he's affectionate, he's moody, he's clingy, he eats like a horse, he barely eats at all, he adores his brother, he hits his brother, etc, etc, etc. He's talking a lot more now.  He can name most of the Cincinnati Reds players by sight (Bryan's doing).  He's starting to get into dinosaur play and even proudly announces that his favorite is T Rex (Zachary's doing).  He's still pretty wary of strangers because he can't let himself trust a new person too soon.  I don't think anybody would be surprised to hear that after all he's had to go through!  Eli is learning a lot from Zachary and the two of them are constantly imitating each other.  If Zachary is comfortable with someone, Eli opens up a little more.  When it's just the four of us, Eli has us laughing all the time with his antics.  He'll definitely be a class clown someday. 

We enjoyed some of the Fourth of July festivities offered at our local park.  Both boys have had haircuts since this picture, but this photo shows both of them smiling at the same time with eyes open and no one is hitting or roaring like a dinosaur.  These are our precious babes!!!!

In other news, Zachary is starting kindergarten Friday.  I am so excited for him because he's getting excited.  I'm also very sad.  I cannot believe my baby is going to be away from me for that long five days a week and I'm supposed to be okay with it.  We were just separated for seven weeks.  I feel like we just got back some semblance of family life and now a large part of it is changing again.  Yes, I know that's selfish, but it's how I feel and I do think I'm justified to feel that way.  I have given serious thought to homeschooling.  We won't be doing that for two major reasons:  1) Zachary needs the interaction with other kids his age and 2) I don't want to homeschool!  I am many things, but I am not an educational teacher.  Can you imagine the backward, socially inept fools graduating from my classroom?  I know, I know:  Teaching starts at home.  I get that and think we're doing a good job so far, but we're at the point that I'm looking forward to using his teacher, homework, schoolbooks, and newfound knowledge to guide us through the next levels of his education.  I am not against those who homeschool.  I think it's an incredible thing to be able to do that for your child.  Who knows what the future holds?  It may be something we have to consider for Eli someday.  Or Zachary.  Until then, off to school Z goes!  Be on the lookout for first day of school pics. 

Specific Prayer Requests:
- that we're able to accept and deal with whatever we need to do about Eli's continued effusion, fevers, and lab work.  That this appointment with infectious disease goes well and they have an "easy fix" for Eli

- for Zachary to have a wonderful experience at school.  Yes, he had great experiences at preschool for two years with very caring people, but now he's entering a new school with an all day, five days a week schedule.  This will set the tone for his next thirteen plus years of education and I really want it to be positive for him

- for Bryan and me as we continue to strengthen our family, our marriage, and as individuals

As always, thank you so much for the kindness, caring and prayers. 

Saturday, August 3, 2013

Veale Vacay, 2013

Bryan took the past week off work.  The four of us really needed to make some sort of an attempt at a family vacation.  With Zachary about to start kindergarten we had to make it happen now.  And we did.  Of course we still have some concerns with Eli's health (I'll touch more on that in another blog sometime), but we knew we needed some Family of Four time.

Right now it's very late and I'm tired.  I'll blog about the early part of our vacation in another post, this one is about today's adventure:  Holiday World. 

The Veale Family Fun Facts About Holiday World:

- the time spent from leaving our driveway to parking at HW is exactly thee length of Sid the Science Kid's movie

- we found out today that I am NOT allergic to bee stings (but I gave my sis-in-law a quick overview of my medical history complete with blood type just in case I was)

- you can have a lot of fun in the waterpark without riding anything....the big slides had lines that were too long for our liking so we stuck to the wave pool and the slides in the kiddie/wading pool.  After a while Zachary even started going down them by himself instead of on the lap of an adult!  Eli and Bryan went down a couple, but Eli was not happy (that's the mild version of his emotions about the slide)

- after much prodding, pleading, and a weak attempt at tough love, Eli became the king of the wading pool...up to 3" deep

- Zachary has some great dance moves he can bust out at any random moment.  In the water, waiting in line, or even as we're walking to our next destination.  Sometimes Eli would imitate the moves for added enjoyment.  However, the dance parties only lasted a few seconds with the exception of one several minutes' long display at the end of the day

- my mom is a better shot than I am.  One of the rides is equipped with laser guns.  The goal was to shoot the targets and a hidden turkey (we were in the Thanksgiving area of HW) would pop out.  Each target/turkey was worth 30 points.  We had two trips through and my combined score was a mere 450 to her 500.

- not that this should surprise anyone, but Eli does enjoy things he initially protests.  At first he didn't want to ride anything, but after some persuasion he rode a few things and actually had fun.  As long as it wasn't a slide.  Or a kiddie canoe.  Or something that keeps him more than two feet from one of us.

- Bryan and I may not have/make time for regular exercise, but days like today (pulling a wagon with 100lbs of children plus another 20 or so pounds of necessities) up and down the hills and paths of HW is a good workout

- August 2 (only one week before my Z's first day of kindergarten) will now be known as "Jessica's first tan lines of 2013"

- the pedals in the old time cars are REALLY hard to keep pushed down to power the car.  An incidental revelation on this ride was confirmation that five year olds definitely do not have the agility/power/reasoning to successfully drive a vehicle.  No, that doesn't surprise us, it's just that today's experience with Zachary behind the wheel (while I tried to keep that blasted pedal pushed to the floor) leaves me with the need for some Tylenol.  Or a hot tub.  Or a masseuse. 

- Eli can fall asleep within 10 minutes of getting into the van for our ride home....Zachary was out very soon after Eli was.

- we listened to at least 15 more minutes of Sid the Science Kid before my mom pointed out that the only ones awake to hear/watch it were well over 35 years old.

We had a great time and I'm so glad we took the boys.  It was the first time for each of the boys.  I thought about getting a waterproof camera to document the day, but decided against it.  My reasoning was that I wanted to experience the fun in real time and not be behind a lens all day.  That and the fact that I didn't think about getting one until midnight last night and I was not going to buy one then. 

Upcoming blog posts will be about the earlier days of our vacation and an update on Eli's health.  Thanks for reading and caring!