Days 46, 47, & 48 Post Op Fontan (June 2, 3 & 4) AND the First Two Weeks at HOME!!!!

Very, very sorry for the lack of updates.  You can usually assume that no news here is good news.  I think I'm usually pretty good at sharing the good and the bad, but it's been really busy the past two weeks!  Here's a recap:

Monday, June 3:  The plan was for Eli to be monitored throughout the weekend and get a chest xray Monday morning.  If the xray looked good, we could go home that day (with the JP drain in place)  We went for Eli's xray early and then waited.  We played in the playroom, we walked the halls, and we waited.  After an hour (yes, it seemed much longer than an hour) we heard that his xray showed there was still an effusion, but it was smaller.  That was very encouraging.  Sara (surgical nurse practitioner) came in and said that Dr. Abraham would be in soon and we'd find out what his decision was.  Fingers were crossed that we were going home. 

Dr. Abraham came in and said he was pretty pleased with the xray.  He felt the fluid showing on the film was probably due to the presence of the drain itself.  The only way to fix that was to remove the drain, repeat chest xray in the morning and hopefully go home that afternoon.  Until I heard him say Eli would possibly go home Tuesday, not Monday, I hadn't realized how much I wanted to go home.  My stomach actually dropped a little in my abdomen.  What Dr. Abraham was saying made complete sense and it would be much easier to have Eli at home without a tube hanging from his lung cavity, but darn it I was ready to go home!

Eli was given a dose of morphine and Dr. Abraham pulled the JP drain.  This was the third one I'd seen removed from him this admission.  The inner part of the drain is as long as my hand (and I have long hands!).  It's amazing to see that come out of his little body.  After the morphine wore off, we had more play time and watched the Pacers lose to the Heat that night. 

Tuesday, June 4:  Eli's chest xray was done early again and we waited.  I was very nervous.  We'd been to this point a couple times and the result was we were still at the hospital.  I was nervous the xray would show more fluid which would mean another chest tube and several more days at the hospital.  I ordered breakfast and we hung out in the room for a while.  Patty, the nurse practitioner on the unit came in to do her daily exam.  She said the xray looked even better than Monday's.  I was filled with relief, but wouldn't let myself think about it.  The decision was not hers, that had to come from Dr. Abraham.

Eli wanted out of the room so we made plans to go to the play room.  As we were getting ready, we had a visit from the therapy dogs.  We met them in the hallway and petted them.  As they were leaving, Sara came to us.  She said that she had talked to Dr. Abraham about the xray.  We were already in the hallway and Sara squatted down & told Eli she had a question for him.  I knelt down beside her as she asked him if he wanted to go home today.  I felt weak with relief and leaned against the doorway.  My persistent son who didn't understand the real meaning behind her question simply replied, "No home, play room."  Sara turned & asked me if I was ready but I was too choked up to answer.  I'm really not a crier, but the feeling of knowing this long ordeal was nearly over and we were actually getting to go home was overwhelming.  She got teary-eyed too.  As she & I were in the doorway crying together, we realized Eli was headed down the hall.  Apparently he'd given up on us and was going to the play room!  I retrieved my son and we went over some of the discharge instructions.  It was going to take a while to get everything together on their part, some time on my part to get the dorm room packed up, and Eli was getting very impatient for his long-promised trip to the play room. 

Off to the play room we went.  While we were in there I started talking about home.  He kept telling me, "No home, play room."  This didn't bother me at all.  In fact, it was the opposite.  Initially he was very apprehensive of the hospital and the staff, but by this time he was comfortable and it showed.  He knew several nurses by name, many more by sight, and had made many friends who worked in departments whose jobs had nothing physically to do with him (Sarah in housekeeping, Derrick in supply, and Katie in dietary).  It was comforting to us to know he had finally let some of his guard down and knew he could trust these people.  Also, we knew once he got home he would adjust and would not beg to come back to the hospital play room.  So we played.  Talking of home did nothing.  Then I said, "Do you want to go see Daddy & Bubba?"  That did it.  "Daddy?  Bubba?  Alba?"  He was obviously showing me that home is truly where the loved ones are, not a place on a map.  We built on that excitement and were able to get back to the room pretty quickly.  I kept telling him we had to take our stuff to the van so we could go see Daddy & Bubba. 

It took a while to get the room packed up.  Because it was such a small space, we had never really unpacked, but we had stuff on the shelves, on the walls, in the fridge, and in the bathroom to gather.  Eli was very unhappy as I took down the cards people had sent us and the pictures Zachary had drawn.  He was crying and actually took some off the stack and tried to put them back on the wall.  I had to keep explaining over and over that we were taking them with us to Daddy & Bubba.  Finally I got him in his crib with a movie and some snacks.  Someone had brought us a wagon (a very large wagon!) to make the trip to the van easier.  It definitely helped...three times!  As I was packing, Dr. Abraham came in.  He and Eli gave each other the once over and he discussed some of the discharge instructions with me.  As he was leaving he tried to shake my hand.  I said no and leaned over to hug him.  He smiled and hugged right back.  That's a big deal with him because he's the type of doctor who cares from a distance.  That's okay.  He's in a field where you can't let yourself get too attached to all your patients because a lot of them are lost despite the best skilled efforts you give.  I get that, but I also got a hug!

Once the nurse had all her paperwork and verification from our home health supply company that the equipment we needed would be at the house before we were, she could wrap up our discharge.  The last medical thing we had to do to Eli was pull his PICC line.  We waited until the very last minute just in case something fell through and we had to stay.  Those are not easy to put in and we saved it as long as we could, but it was finally coming out.  Eli screamed the whole time.  I'm sure it didn't feel good, but his screams had nothing to do with pain because they started before he was ever touched.  However, once the bandaid was on and he was convinced we were done, he was buddy-buddy with her again. 

We were finally cleared to leave.  We were about to walk out the doors.  I had left the unit many, many times in our weeks there, but never with Eli.  Now he was leading me.  Several of the nurses had been stopping by our room throughout the morning to say good-bye to us but now we were actually heading out and we got to say good-bye to them!  We had a goodie bag for the staff with microwave popcorn, Twizzlers, and assorted cracker & cookie packages.  We also had a card in there thanking them for all the care, friendship, and support they had provided.  While shopping for those cards (weeks earlier) I decided the card for the third floor staff needed to be a "thank you for your hospitality" card instead of a general thank you!  Eli gave a couple hugs, several fives, a few fist bumps, and many bye-byes.  As we walked down the hall to leave, Eli started to turn at the elevators used to transport patients.  Those were the only elevators he'd known for nearly two months.  I told him we weren't using those, we had to go out in the hallway to use the other elevators.  He said "ooohhhh" and walked straight to the double doors, made the turn to the right and went to the visitor elevators like he knew exactly where he was going.  We didn't leave the hospital yet because we had a thank you card & goodie bag for the PICU staff as well.  We got to see Brittni, who is unofficially Eli's main PICU nurse throughout the past two and a half years.  After that, we made a quick trip to the gift shop for new Peyton Manning Children's Hospital tshirts for the four of us. 

Then we walked out of the hospital.  Exactly seven weeks earlier, we walked in for his preop testing.  Now we finally got to leave.  Before we walked out the doors, I had looked around to see if anyone could take a picture of us walking out.  Yes, I knew it would be a strange request and am also aware that I would walk out only to come right back in to get the camera from whomever took our photo.  It didn't matter though because the lobby was empty except for two people who were obviously on important calls.  We weren't waiting any longer so we went to the van.  Eli had not seen it for almost two months and that slick little twerp tried to climb into the front passenger seat instead of his car seat.  The rotten little monkey knew exactly what he was doing. 

We left the hospital and grabbed some lunch.  We stopped at my sister's bank on our way out of Indy and surprised her.  Ashley knew there was a good chance we were getting discharged, but because she was working she didn't know it really happened and I had been too busy to call anyone but Bryan.  When she saw us she came running and hugged me & Eli.  At that point she & I were both crying and I'm sure it was an odd scene for some of the customers, but we didn't care.  We only stayed a few minutes because we had to get to Daddy & Bubba. 

The trip home was pretty uneventful.  Eli had taken a short nap on the way to my sister's bank, but stayed awake the rest of the trip.  When we turned onto our road I saw balloons.  They were tied to the stop sign, the mailbox, and were all over anything they could be tied to at the front of our house.  There was also a sign welcoming us home.  Later I was told to look in the street and I saw chunks of bread.  That was my mother-in-law's joke related to the Facebook status I had posted when I found out Eli was being discharged ("HELP!!!  I need directions from Indy to Washington because Eli is coming HOME!!!!!"). She left me a bread trail to find my way home.

It felt so good to hug Zachary & Bryan again.  Eli was following Zachary around and doing whatever he was doing.  We were home in time to unpack the van, pack a diaper bag and go to Zachary's ball game.  We hadn't planned on taking Eli "out" that soon, but decided we needed that family time.  We made sure to keep him away from most people.  Eli had his own plans and had brought a ball, glove, and bat so he could play ball while Z's game was going on.  He took breaks to watch Zachary at bat.  Eli would either stand at the fence and yell "GO, BUBBA!" or he would stand with his bat and swing at the pitches being thrown to Zachary.  While Z was in the dugout, Eli would go beside it to give him fives.  Zachary kept showing Eli to the other kids and his coaches.  He'd say "This is my baby brother Eli.  He just got home from the hospital because he has a sick heart.  I'm so glad he's here!"  Going to that game was exactly the right decision.

Since we've been home:  We've had a lot of adjusting.  Eli's medication schedule was completely different from what we were used to preoperatively.  He also has nighttime feedings throughout the night to supplement his diet.  He's on a low fat diet because of the chyle present in the chest fluid.  Eli is also on oxygen when he's asleep for naps or through the night.  That's new to us as well.  Because of the multiple procedures he had while hospitalized, we're still practicing "sternal precautions" with him.  That means we can't pick him up under the arms for a couple more weeks and we aren't supposed to lift both arms above his head.  He also can't have a bath yet or get in a swimming pool.  It's been crazy and kind of stressful to find a whole new routine as he readjusts to home life.  He & Zachary are obviously happy to be back together full time and he hasn't once asked for the play room at the hospital!  Eli had to have a chest xray the Monday after we got home (almost a week).  We have to keep track of his oxygen sats at random times (with and without oxygen) and let the cardiology group know how he's doing.  I was really nervous for that chest xray because we had (purposely?) left unsaid what would happen if there was more fluid present.  We didn't have much to worry about though because it showed the effusion is resolving!  Only then did I start to relax a little and realize that we were probably home for a long time!  I still haven't unpacked my suitcase yet.  However, that's mostly due to the desire NOT to wear any of those clothes for at least seven weeks!

Eli has a check up in Indy next week.  He'll be seen by his main cardiologist for follow up, another cardiologist who's in charge of the pacemaker, and either Sara or Dr. Abraham (or possibly both).  He'll have an echo and possibly a chest xray & bloodwork.  It will be another long day, but it will be fine.  Later in the week he'll have a check up with Dr. Amy.  We've seen her once for follow up care since we've been home, but plan for her to keep a close eye on him as well. 

Eli's been doing great since we've been home.  He plays, he makes messes, he pets Albert, and he saw all four of Zachary's baseball games that happened after we got home.  He's happy.  He's pink.  He's silly and seems to have grown three inches since prior to surgery.  His appetite is less than it was in the hospital, but honestly I think he's just too busy to eat.  He will eat but is easily distracted (you know, like a two year old?).  We're not worried because he's eating enough and is getting the special formula every night while he's asleep. 

It's strange to put him to bed.  It's not just getting him into the crib and sneaking out.   We have to get him in, hook up the oxygen monitor, place his oxygen tubing on his face (if we didn't do it when he was awake), turn on the oxygen, and hook up his tube feeding.  At night he has three tubes or wires running off his body for various monitoring or deliveries.  Zachary is learning how to program Eli's feeding pump and mix the formula.  He wants to, he asks us to show him. 

Eli isn't sleeping well though the night.  He cries out in the night and asks for the couch.  Sometimes I can get him back to sleep in his room, other times, he comes to the couch.  I don't know if it's because he's used to sleeping with an adult within arms' reach, if it's too quiet at home compared to the hospital, or if all the equipment is bothering him.  The equipment is pretty quiet and we play a lullaby CD in his room.  He's done this before.  After we got home from his Glenn (second heart surgery), he went through several weeks of night terrors as he readjusted.  It's tough on these kids.

I'll get some photos posted sometime.  I know it does our prayer warriors good to see how great he's looking.  Thank you for every single prayer that's been said on our behalf.  The support we had was amazing.  The boys loved getting the cards and packages in the mail.  Our request was simply a card or note, and they got those and so much more.  Thank you to everyone who sent anything.  The boys have received coloring books, blankets, new toys, snacks, gift cards, stickers, etc and Bryan and I were even given care packs of snacks, a new Thirty-One bag, gas cards, and, most importantly, words of encouragement.  THANK YOU!  I would love to get individual thank you notes to you generous people, but in all honesty if it hasn't happened by now, it probably won't.  Please don't take that as I was raised without manners (we had a barn I spent time in but I was not raised in it), it's just that I'm so busy with Eli's needs and very sleep deprived right now.  This blog post has been a five day process, I don't even know if it flows coherently!

Specific prayer requests:
- thanks that we're home, together, and happy
- that Eli's cardiac check up and testing next week continues to show improvement
- for Eli to be able to rest well through the nights
- for momma and daddy to have enough sleep to function and get slightly more than the bare minimum done around here!
- for Zachary to feel content and just as important as Eli.  It's hard to balance with Eli needing so many physical things and Zachary has had a few rough days since we've been home despite how happy he is that we're finally together. 

So That's a Feeding Tube!

This is a photo of Eli when he turned one.  It's a good shot of his scars and his MicKey button.  Photo courtesy of Reflections by Mindy.

 
People are always curious about his feeding tube.  Some of the most popular questions are about how it works, what exactly do we use it for, how often we change it, does it hurt him, and how long will he have it?  This post is an explanation of why Eli has the tube, how it works, and answers to the previous questions.  So here goes!

Does it hurt him?
No, the tube doesn't hurt him.  It was a surgery to put it in and, yes, he was in pain postoperatively, but now it's just part of him.  He has been playing with it more these days and I know he's going to pull it out on his own sometime, but for now he just touches it.  I don't mind his curiosity, it's part of his body and he needs to be comfortable with it. 

This was the first picture taken of him after having surgery for his feeding tube placement.  If you follow the green wire it runs into the disc that was part of the feeding tube.  It's difficult to see but there's a white tube coming off that disc.  The disc & the tube make up the outer portion of his newly placed feeding tube.  The wires were to monitor his heart rate & rhythm and respirations. 02/14/2011

Why does he have it?
One of the things that led us to seek help prior to his diagnosis was that he wasn't nursing as much as he had been.  We are a family who likes to eat so we knew something was wrong!  After his first heart surgery, the only thing he would allow in his mouth was a pacifier...and only a certain brand at that.  The fact is Eli needed nutrition, he wasn't eating and we had to have a way to get milk into our baby.  Initially, he had an NG (N = nasal G= gastro, meaning a tube inserted into his nose and fed down into his stomach).  It had to be taped to his face, immediately made him look different, had to be changed weekly or more often, had to be checked for proper placement prior to each use which was multiple times day and night, and could easily be dislodged or pulled out by Eli or Zachary (Z was only 3 when Eli had the NG).  Then he started having bloody stools.  It was about two weeks after we got home from his first heart surgery and we didn't know if he had GI problems or if we had scratched him when we changed the tube.  Further testing revealed he had a milk protein intolerance.  While he was in the hospital for that, our cardiologist made a push to get the feeding tube surgically placed.  Bryan and I were on the fence about the permanent need but agreed that if we were going to do it, this was the time.  The GI doctor wanted to do an EGD (a tube down the throat into the stomach to allow the doctor to see the tissues and take samples for biopsy) and colonoscopy (a tube up the rectum and through the intestines for the same reason)  and Eli would need to be put out for those.  Since he was going to be under anyway it was the perfect time to place the feeding tube.  Our decision was made and we have not had one regret since. 


How long will he have it?
I don't know.  Some parents whose little ones have feeding tubes are very anxious to get them removed and I understand that.  It's not a natural part of your baby.  It's a visual reminder that something is wrong with your perfect child.  Bryan and I weren't thrilled about getting it in the first place, but once we did we quickly realized how much better it is for Eli.  We are not in any hurry to get rid of it.  He had stopped requiring tube feedings for several months, but is now needing them again.  We're so glad we have that access.  As long as the hole stays healthy and the surrounding skin doesn't have any breakdown, we're much more content to have the button and not use it a lot than to be rid of it and need it again. 

How did they get it in there to begin with?
It was a surgery and it took two doctors.  One was our pediatric GI (gastrointestinal) Dr. Maisel and the other was a pediatric general surgeon Dr. Kokoska.  Dr. Maisel had the scope in Eli's stomach for the EGD and found the spot for the G-tube from the inside.  By the way, at this point it was called a G-tube meaning gastric tube (gastric = stomach).  Dr. Kokoska found Dr. Maisel's spot from the outside and made the incision where Dr. Maisel wanted it.  It took two of them because the internal organs in babies that small are very close together and they didn't want to inadvertently puncture other organs.  Remember, Eli was under 10lbs at this point.  At first it was a long tube about 18 inches in length that led to a disc on the outer part of his belly.  The pictures below were taken throughout the procedure and show what it looked like on the inside.  He kept this tube for almost two months.  Have you ever had your ears pierced and had to keep the original piercing studs in for a few weeks before you were allowed to change them?  This is the same concept.  Once the hole had time to form a tract, he was put under anesthetic once again so that tube could be removed and his new button put in place.  It's called a MicKey button and it's what you'll see in later pictures.

Photos given to us by the doctors who placed his G-tube.  Image 2 notes point out his liver and his stomach.  Image 4 notes say "stomach" and "pulling PEG tube".  Doesn't he have the cutest little internal organs ever?!?!

How often do we change it?
Monthly or more often if necessary.

What necessitates a change?
 -if the tube is pulled out
 -if the tube is blocked and we can't get anything to flow through
 -if it's getting visibly dirty/gunky.

Who changes it?  Where is it changed?
We change it.  We do it at home, usually on the changing table in his room.  We carry an extra kit in our van in case we have to while we're out sometime.  Bryan and I have always done it together but one person could do it alone.  It's easier with two because one can occupy Eli while the other gets it done.  The whole process takes less than 5 minutes.  Some people have asked if we're allowed to change it because I'm a nurse while other families would have their doctor do it or go to the hospital.  No, I'm not Eli's nurse, I'm his mommy.  We were taught, as his parents, to do this regardless of our occupations.  

Shouldn't this be done in a sterile environment?
The initial surgery was done in a sterile operating room, but since then it's been what's called a "clean" procedure.  When it was converted from the larger tube they placed during surgery to his current MicKey style button, that was in a procedure room, not a sterile OR.  Each of his new kits is in sterile packaging.  We wash our hands and keep the whole process as clean as possible by laying him on a clean blanket, only touching what we have to, and keeping his hands away.  Stomach contents are not sterile like other organs.  He probably gets more germs from what he puts into his mouth than from us changing his button. 

Here's what you've all been waiting for.  Here's how we change it and use his MicKey button. 

This is the kit for his new MicKey button. 

We use good ole KY jelly (or the generic!) on the stem of the button to make insertion easier for him.  So if you see me buying it by the case at WalMart, that's why.  Yeah, that's why. 

This is the new button.  I'm holding it upside down so you can see the stem that will be inserted into the hole in his belly.  The bottom part is actually the button that stays on the outside of his body.  There's a "balloon" that goes around the stem and gets inflated with water.  That's how it stays anchored inside his belly.  We have to test the balloon prior to inserting the button to make sure it's intact. 

Here's the balloon after I filled it with 6ml of water (slightly over a teaspoon).  It doesn't look like it here, but this balloon only goes around the stem, not over the end of it.  The end is open so that his medicines and formula can flow through.  The balloon is like an inner tube around the stem.  The narrow area between the inflated balloon and the bottom of the button is 1 centimeter in length.  That's the part that goes along the tract that was formed between the outside and inside of Eli's belly.  When we reorder his buttons from the pharmacy we specify a 14 French (has to do with the diameter of the tube) 1 cm.  As he grows, the diameter shouldn't change but the depth probably will.

Here's a different syringe attached to the button that's currently in place.  We have to deflate this to take it out.  It could get pulled out with the balloon inflated but that would hurt and possibly cause some tearing around his hole.  It could happen, but so far he hasn't pulled it out on his own.  We hope he doesn't, but I bet if he does it once he won't do it again.  Once we pull the water out of the balloon the whole button just lifts out. 

A view of the hole after his button is removed.  We clean it every day and apply some ointment around it to help keep the skin in good shape, but when we change his button it's a good opportunity to really clean it.  We just have to be fast because this is a direct opening into his stomach.  Yes, gravity is a factor here.  If he rolls to his left side very much we may get some stomach contents to pour out.  Don't worry, I didn't take any pictures of that.  Incidentally we make sure to keep food & drink away from him for about an hour before we do this!  Let's just say we've learned the hard way :)

Another view of his button hole.

The new button is in place, the balloon filled, and the syringe removed.  The new button stem just slides into the hole, we inject the water to fill the balloon and remove the syringe.  He's done!

Here's the tube we use to access his button.  The end of the tube has a little piece of plastic that sticks up.  That aligns with the notched area on the face of his button.

The black line on the access tube shows where the notch is.  Line that up with the line on the button indicating the place for the notch and....

...turn clockwise just shy of a full turn.  That locks the tube into place and makes it "become one" with the button.  To remove it, simply reverse the process by turning the tube counterclockwise until the black lines line up.  Then just take out the tube and replace the doo-hickey rubber piece over the button opening so that other stuff doesn't get in there.  The button has a one-way valve inside so things shouldn't leak out once they're in, but if it's been used for a while we may get some occasional leakage (another indicator that it's time to change the button).

This is the tube we took out.  As you can see, it gets dirty, gross and gunky. 

It's very hard to see, but there's a small pinpoint opening at the bottom of this stem.  That's what all his meds, formula and water pass through into his stomach.  Even if we aren't using his tube for medicines or feedings we still have to flush it with water two times a day just to make sure that tiny opening doesn't get clogged. 

A view of the whole tube we use to give him feedings and medicine.  A close up of the white part on the right is shown in pictures above.  The left part is the head of the tube which has two ports.  In the middle is a clamp.  In this picture the clamp is open.

The larger port on top is for feedings and the smaller one coming off the side is for his medicines.  They feed into the tube the same way, they're just different sizes for different syringes to attach. In the background you see a syringe that is full of water.  The syringes that fit into his feeding tube are called a "slip-tip."  Some people assume we mean a syringe that could also hold a needle (like for a shot) but these just have a little tip on the end that fits into the port.

The slip-tip syringe fitted into the medicine port and filling the tube.  We prime the tube with water prior to attaching it to his button for any feeding or medicine.  Otherwise we'd be pushing a bunch of air into his belly and make him burpy or even sick.  After the medicine or formula is in we flush the tube with water before detaching it from his button. 

Here's his nightly line up:  Prilosec (to help decrease stomach acid), a daily vitamin (tablet is crushed up & mixed with water because he won't eat them yet), Captopril (helps his heart function), and the water flush.  The clamp on the tube is closed to hold in the water. 

Eli has started helping with his medicines.  He'll put his finger on the plunger and help us push it in.  He's half asleep in this photo.  You can see how it's hooked up to his button and the medicine syringe is attached.

Some people want to know how we keep it straight.  Most of the time it's pretty easy because his meds are pretty consistent.  Two of them he takes twice a day, his vitamin is everyday, and he gets half a baby aspirin every other day.  We do that one on even dates only 2nd, 4th, 6th, and so on).  If a month has 31 days then he will he will have his aspirin the 30th, miss the 31st, miss the 1st, then have it again on the 2nd.  Otherwise it gets too confusing!  I created an Excel spreadsheet with his meds, their purpose, the amount & dosage, how many times a day he gets each one, a list of "as needed" meds & their dosages (Tylenol, Dimetapp, etc), and a place to mark Zachary's daily vitamins.  I printed that and cut it to fit into an 8x10 frame.  We use dry erase markers each day for the date and times we give him the meds.  There's room to add additional info we have for the day.  For example, he's on an antibiotic right now so it's written to the side with its times given.

A look at our daily board

The first picture I took of our daily board being held by our lovely model.

That's all there is to it.  When we were still in talks about going the G-tube route it seemed like it would be a lot of work and a big deal, but it isn't.  We just made it part of our routine and hardly even think about it.  It's so convenient to be able to give Eli his medicines and feedings.  We don't have to wake him if something is due when he's sleeping.  We don't have to fight to get him to take multiple meds multiple times a day.  He takes some by mouth, but when he initiates it.  We figure he's going to be taking medicine for the rest of his life so why make it a negative experience for him?  Using the tube became so normal to us that I messed up when Zachary was on an antibiotic for the first time.  He was 3 1/2 and had been sick enough to require an antibiotic.  It was liquid of course and supposed to be given every 8 hours.  I gave him his first dose as soon as we got it from the pharmacy which was about 4pm.  Next dose at midnight, right?  Well, midnight rolls around and I wake to my alarm ringing, go to the kitchen, measure it out and go to his bedside.  Only after getting him to roll onto his back in his sleep did I realize he didn't have a feeding tube to put it through!!!  I felt soooo stupid.  It wasn't a momentary lapse of intelligence, it was an 8 hour lapse during which time I just assumed the act of giving Zachary medicine would be as easy as doing it for Eli.  I didn't wake him but we just changed our schedule to be more realistic for him the next day. 

I hope this answers some questions for anyone who has wondered about this.  Again, the invitation is out there for you to ask anything you've wondered about Eli's condition, how we handle it, etc. Use the comment section on this blog, use Facebook, or email me at jessveale@yahoo.com.  Thanks for reading and remember to cherish Every Little Beat...

Eli Update and a Request

This is a face of Congenital Heart Defects.

Eli has been getting some nighttime tube feedings again.  For a while he was waking up hungry in the night.  At first it was no big deal because that's just a normal kid thing...a sign of growing...a phase if you will.  But, as always, things are a little different with Eli.  His "phase" lasted for weeks and he wasn't gaining weight.  He would wake in the night and announce his wish list to his loyal servant (AKA Mommy).  The list was simple, "BOT!"  I'd give him his milk, he'd drink some, and then he'd fall back asleep.....for a while.  He was doing this multiple times a night.  At first I thought he was just trying to make me crazy/crazier, but then I realized what was really going on.  He was tired.  Duh, he is a heart baby after all.  He was too tired to stay awake long enough to drink enough to satisfy him.  That coupled with the fact that he hasn't gained weight (actually lost a little) since mid-summer led us to resume some nighttime feeds again.  He takes prescription grade PediaSure which has 30 calories per ounce.  His previous formula was only 24-27 cal/ounce and his milk is definitely less than that. 

So my point is that I'm up.  It's late and I'm tired but it's a great chance for me to have some quiet time, check my email and watch mindless late-night television.  Who needs sleep?  It's very overrated.  During these late-night computer sessions I've finally started doing some research about congenital heart defects.  I'm pretty comfortable describing and talking about Eli's defects, but I haven't done much outside of that in regards to CHD.  Some of the facts I've discovered have really surprised me.  I feel compelled to pass them along in an effort to bring more awareness to the issue of congenital heart defects. 

Some of you have heard of Lane Goodwin.  If you haven't, he's a 13 year old child who has cancer.  Children and cancer should never be in the same sentence.  Lane, who is from Beech Grove, KY, has made some national headlines with the "Thumbs Up for Lane!" campaign to bring awareness to childhood cancer.  When I logged on to Facebook tonight I saw that, sadly, Lane has lost his battle on earth and earned his angel wings.  My heart is breaking for his family.  It's a fear that every parent has, but we've been so close to losing Eli and face such an uncertain future that for us the fear of losing him is a little more realistic than for most families.  Facebook is flooded with prayers for the family, expressions of sympathy, and people commenting about holding their kids a little tighter tonight.  I love seeing the outpouring of support for this family.  Please keep them in your prayers. 

As I read the tributes to Lane and his family I have a recurring thought that I can't shake.  It's a statistic I've come across in my late night internet trolling.  Unfortunately most of us can name someone (or multiple someones) we've lost to cancer.  Even sadder is that most of us can name a child who has battled cancer.  Cancer awareness is everywhere.  Deaths from cancer are an all too often occurrence in our lives. 

It is wonderful to see the conversations and comments regarding the need for research and better treatments for childhood cancer...obviously it is needed.  Cancer is terrible, it does not discriminate, and it ruins lives.  Believe me, I get it and I hate cancer, just like everyone else.  But here's the fact that I've come across in my late night internet trolling that has been weighing heavily on me: 

Everybody talks about cancer, cancer awareness, cancer treatments, cancer research, cancer funding, etc.  I am not unsympathetic to the cause.  Cancer stole my dad.  I get it, I get the pain.  My point is that CHD kills almost twice as many children a year as cancer and yet it doesn't get nearly the attention as cancer.  We need more research, more funding, more awareness.  It starts here with the families affected.  MY family.  YOU readers.  Start talking about it.  Then tell one more person.  Keep talking about it.  CHD is a killer.  Right now in our house we have a snoring daddy, a snoring dog, two sleeping boys, a momma on a mission, and a killer. 

Again, please, please, please don't think I'm trying to take away from the importance of fighting cancer and other terrible diseases.  My point is that there are many, many battles going on and I'm trying to bring more awareness to the one affecting us most.  Also, we've been blessed with a lot of people who care about us.  We are so grateful for the support we've been shown since Eli's diagnosis.  I know that his diagnosis alone has opened a lot of people's eyes to CHD, mine included!  As time has gone by and we've accepted what is happening, we're ready to start doing more.  I have no idea what route that will be, but we're realizing the need to raise awareness.  CHD affects too many families, kills too many babies, and causes too many tears to fall to not have as much community awareness as cancer.

We've been fortunate to get to know a few other heart families.  Some we've met in person, some through the internet (thank you technology!).  Please keep these babies in your prayers:  Eli, Caleb, Madison, Davie, Nathan, Iceley, Natalie, Liam, Rylan, Braxtyn, Lauren (a 25 year old CHD patient!), and the thousands more we don't know.  Of course, please pray for Lane Goodwin and his family at this terrible time.  And please, start/keep talking about CHD.  I think you'll be surprised how many people you know have actually been affected.  I'll randomly post more facts about congenital heart defects and ways to help & raise awareness.  For now, thanks for following along and for all the support over the past couple years.  We rely on your kind words more than you realize.