3rd Birthday and Continued Medical Dramas

I swear, between Sam and Luke, our insurance is probably freakin' out over all the medical junk they have had to shell out cash for recently.  Long story short: Sam has his normal cardiac stuff, then heart cath, ENT stuff with a new set of tubes, and new GI issues that are now sending us up to Atlanta. Luke had a fall at daycare that resulted in a skull fracture with subsequent visits to the ER and Atlanta neurology, and just had his 'hypospadias' repair with upcoming follow-up in Atlanta, not to mention he just got his first ear infection.  GUH!  By the end of the year, we will have seen specialists in cardiology, gastroenterology, neurology, urology, audiology, and otolaryngology...all of those in Atlanta.  I'm not complaining about the Atlanta thing though...we would be fools to think anyone in Macon could come close to being as good as those doctors and that facility.

I will return to the medical dramas in a minute.  First, this past Saturday was Sam's THIRD BIRTHDAY!!  What a milestone.  We decided to mark the occasion with a birthday party in our back yard.  We didn't want to drop a ton of cash, so we put together a 'homemade' idea.  We took medium sized boxes and put them together and painted them to look like cars.  Sam and his neighborhood buddies decorated them and had a blast running around the back yard.  We had a blast hanging out with the neighbors.  Poor Sam got super fatigued after running around for an hour or so, and actually ended up taking a nap on our bed (he has ALWAYS refused sleeping in our bed up to this point) mid party.  But he was revived and we turned the birthday party into a SEC championship game watching party.  It was really a great day, and Sam thoroughly enjoyed getting attention and presents! 

The day before the party, Sam had his normal 3 month cardiology follow up.  While his doctor was clearly very pleased with the results of his heart cath, Sam's oxygen levels were lower than normal (around 79-80).  Dr. Cardis feels we may be headed into the Fontan surgery sooner than later.  He wants us to consider April of this upcoming year.  Sam's most recent heart cath would still be 'valid' and we wouldn't have to do another.  Also, it would be after cold and flu season.  I just wanted to go longer.  I had given up hope for the longest prediction we were given, which was age 9.  But I was hoping for Kindergarten or 1st grade age.  Not 3 years old.  But, I don't want to wait too long and get in trouble either.  I definitely do not want to crash land into this surgery the way we crash landed into the last one.  And when Sam ended up begging for a nap mid birthday party, it became very apparent to me that April may have to be the time.  We will see what his oxygen levels look like in March and make a decision then.

Little Luke had his urological repair yesterday.  It was a simple surgery, but a compounding cold (and hard to find veins) kept us in the hospital most of the day.  Poor little guy got brought back to me from surgery with a nasal cannula and on 2L of oxygen.  The doctors were worried because his oxygen saturations were around 93...I had to chuckle a little...Sam has NEVER seen 93...93 sounds like a blessing from God to me!  Luke took a while to recover from the medicines, but has basically acted like nothing happened to him at all.  I have to take the bandage off tomorrow though, which should be fun.  He's so sweet and carefree, I hate to see him in distress at all.  But he (and Sam) is a trooper, and I am amazed at what he has gone thorough in his short life with a smile on his face!

~Kathy

Cath Master!

So Sam had his heart cath on Friday.  It went far better than expected! 

We stayed the night in Atlanta at the Georgia Power House (like Ronald McDonald House).  We had left Sam in Macon with Chris's parents, and surprisingly, Sam wasn't too sad about leaving them all behind for a car ride with Mommy and Daddy to go visit "Sam's hospital."  We got up early and checked in at Egleston.  Sam was pretty happy and wasn't too suspicious.  The cath lab set us up with a room, got Sam a hospital gown (and a stuffed animal to keep).  We had to wait a bit as there was one case before Sam's.  When the nurse came with the Verced to make Sam sleepy, things started getting rough.  He wouldn't take the medicine, and it had to basically be forced down his throat by the nurses.  He was upset about it, and was crying, and then started gagging.  Now, I just KNEW he wouldn't throw up, since he hadn't eaten anything since late late the night before (surgical precautions, and all).  But suddenly he vomited a whole kidney bean shaped basin of chunky food....from LUNCH the day before!!  OBVIOUSLY our GI issues did not end with that last barium study, and I have a feeling our GI will be doing a scope after hearing about this. 

After the Verced kicked in, Sam was reasonably content, though he didn't want to see those nurses again! When it came time to take Sam back to the cath lab, he did NOT want to go with the nurse.  They graciously allowed Chris to carry him to the lab table.  Sam was silly happy by then, and happily allowed the anesthesiologist to place the gas mask on his face.  Chris said he went to sleep while having a tickle fight with one of the nurses...adorable.  Chris and I went down to the cafeteria and had breakfast and a coffee.  We were touring the hospital and reminiscing about our stay during Sam's surgery.  Suddenly, we got a cell phone call saying Sam was all done and the doctor was ready to talk to us!!  Good or bad?!?!

We quickly ran upstairs and met the doctor.  He said everything looked much MUCH more stable upon cath exploration than can be seen during an echo.  While he did have some narrowing of his pulmonary artery, it actually was more of a 'kink' in the artery, and the pressure on either side was perfect and equal.  And as far as the collateral arteries go, there was only one that would have required coiling (though he has many others that aren't necessarily a danger).  That particular one, however, was super small, and he said it wasn't worth the effort.  He expects it to grow slow, and not cause us any problems in the near future.  Since we didn't have to do either an artery ballooning or a collateral artery coiling, we would get to go home as soon as Sam recovered from the anesthesia! 

The best news all day was that the doctor feels that with as stable as Sam seems to be, we can continue to hold off on his next open heart surgery!  He felt we could probably last as long as 2-3 more years (to age 4-5).  Sounds great to us!!

Sam returned to our room, not too happy but not as bad as recover from his ear tubes.  He didn't want the nurses around, so when they needed to do an Echo, he wasn't thrilled about being touched by the Echo tech.  He eventually settled down by being put in his hospital bed and having Mommy laid up in the bed next to him watching Yo Gabba Gabba videos on Mommy's phone.  Within an hour or so, we were being discharged!

We came home and relaxed with Chris's parents.  The next day I had to remove his bandages (they went in for the cath in his neck and groin).  They used big strips of tegaderm, and Sam fought like hell as clearly having the bandaged removed hurt.  We'll have to request a 'Bandage Change' bead for that one...Ya Ya will need to get one too, as she had to hold Sam down while I worked on the bandage.  I'm pretty sure she's got some bruises!  Speaking of beads, Sam earned 3 more "Beads of Courage" beads...an IV bead, a Cath bead, and an Echo bead (which is the coolest one, because it glows in the dark). 

To cap the weekend off, we went to the Georgia State Fair.  We didn't stay long...just long enough to see the cows, pigs, horses, and the wild animal petting zoo complete with giraffe and zebra.  Sam got to ride a pony, which was the highlight of his weekend I think! 

We couldn't be happier with the results of the Cath.  It was completely unexpected to not have to go through some interventions and have to stay the night...and we feel so blessed.  Sam has really been nothing but a miracle when it comes to all of his major heart events.  Looking at it all in hindsight, it seems so guided and planned. I just get the overwhelming sense that this is all meant to be.  Sam is meant to be.  Just the way he is.  And he is meant to be here.  And he will be here for a long time.

Beads of Courage

Sam has officially gotten his Beads of Courage bead collection started.  If you haven't heard of this organization, please check out their web site.  If your child or someone you know might qualify, check the list to see if their hospital participates.  To date, Sam has 129 beads, each representing a cardiac treatment, doctor visit, or event.  He will earn several more this Friday, when we go to Atlanta for his second heart cath.  We have started his journal, which will help him remember what each bead represents so he can know just how much he has been through.  This is what we wrote on the first page of his journal.

When I first heard about the Beads of Courage program, I thought it was a truly genius idea. Complex medical conditions that affect a child and require lots of treatment are difficult enough for adults to understand. How can anyone expect a child to fully comprehend such a condition, its consequences for their own life, and its consequences for their family? Often times our instinct is to forget our ‘bad’ experiences in life. But you can’t just forget what you have to live with everyday. These conditions just become part of your existence and your personality, whether you want them to or not. How should a family turn the ‘bad’ of that type of condition into ‘good’, and help their child accept and embrace what simply cannot be changed?

That’s the real genius behind Beads. Giving a child a bead that signifies each event of treatment can turn an event that is unexplainable, painful, or scary into something that can be counted, and showed off as unique and special. It can provide a physical history of treatment, but in a language more appealing to children.

When Beads of Courage came to Children’s Healthcare of Atlanta, you had already been through two years of treatment. I sat down with the Bead tally sheet and our baby journal for you, and started to tally up your treatment history. I was saddened and joyful at the same time to discover you had earned 129 beads in your first 2 years of life! I was sad because it reminded me of all the things you had been through as a baby, and how unfair it is that any baby should suffer. But it made me joyful to think of what you have overcome, and reminded me that if you have survived these trials, surly you were meant for great things.

Tonight, I am starting your journal for your beads. I want you to be able to not only know you survived a particular treatment, but the story behind each one. Each bead and story should serve as a testament to your own strength, the love and support that surrounds you from your family and friends, and the blessing of top notch medical care that has brought you this far. I can’t wait for the day that you can physically help me write the story of each bead in this journal, and then one day take over writing this journal yourself.

I hope that these beads bring you a sense of accomplishment. I hope that you look at them and feel pride and strength over what you have experienced. I hope you take the beads with you to show-and-tell, write an essay about them in English class, carry them with you to college, display them in your first apartment, share the stories about them from your journal with your wife, and count each one with your children.

Don’t look at these beads and feel sad or cheated. Yes, these beads also symbolize a condition that may have severe consequences for your life span. Yes, these beads may represent pain and suffering. But you must remember that nothing is promised to us in this life. We were never told we would not suffer. We were never promised perfect health and happiness IN THIS LIFE. A person who is born perfectly whole and healthy could find themselves in a more dire situation than yours in a moments time.

Everyone carries a unique cross through life. These beads define yours. Always remember that this cross was chosen for you, and just for you. You have to make the most of your cross, turning the sad and unfortunate into something grand. Our cross is to have to watch our first born suffer, but raise him to overcome and strive for greatness anyway. I hope we succeed.

Medical Updates

We have had (or are in the middle of) a month of medical crazyness with the boys.

Sam had his tubes surgery last weekend in Atlanta.  We did preop at Egleston and then went to the Atlanta Aquarium.  Sam had a great time, although by the time we had been there an hour or so he was spent.  We stayed the night at a facility run by Georgia Power.  It is a house for employees of GA Power who have to stay in Atlanta for medical procedures - like Ronald McDonald House.  We woke up bright and early the next day for Sam's tubes.  He was NOT a fan of putting on a hospital ID bracelet, and NOT a fan of putting on the gown.  But he was flying high after getting some Versed.  The surgery went fine, and Sam was brought back to us flying higher than when he left.  He was loopy, and agitated.  He puked a few times, which I thought was a bad omen for the rest of the day.  We loaded him in the car carefully (he still needed total assistance to keep his balance), but sleeping on the ride home and then taking a nap when he got home helped tremendously.  He apparently didn't have that bad of a time (or at least he has already totally forgotten) because he asked to go BACK to the doctor the next day!

And back he went.  We had our GI appointment in Macon this past Tuesday.  The GI feels that Sam's vomiting is highly unusual, and the fact that he throws up OLD food is highly unusual.  We are being sent for an Upper GI Series next week (Barium milk-shake and xrays) to look for any obvious anomalies.  If that isn't satisfactory, we will be going for a sedated scope...sigh.  Anything with sedation is a risk with Sam, so I'm sure it will be in Atlanta if we have to do it.

In the mean time, lil' Luke came down with a rough cold.  Then he started drooling a ton as he is already getting some teeth moving through his gums.  Combined, they caused one cranky baby.  He got sent home from daycare on Monday due to loose stools (surely the snot and drool he's been swallowing).  So Luke got a trip to the Pediatrician for himself on Tuesday - of course all is fine.  He went back to daycare and has been fine ever since.

BUT he will be going to the Urologist tomorrow to see what (if anything) needs to be done for his hypospadias.  It will be just me and Luke headed to Atlanta for that, so I'm planning a little trip to Ikea for us both...you know, to de-stress from all these medical things!

Our last and biggest medical event is Sam's heart cath, which will be October 14.  It can't come soon enough.  Sam is certainly getting out of breath quicker, although he doesn't seem to care or notice. 

Baptism and Appointments List

We headed to Mobile for Luke's Baptism this past Friday.  We got to go to a Mcgill (our high school) football game and see my brother-in-law in the marching band.  We got to watch our oldest nephew's soccer game, shop, and went to TWO frozen yogurt bars in one day.  Luke's Baptism was sweet.  One of our favorite priests, who has known Chris and I since seventh grade, performed the sacrament.  Luke, who is so big he was literally busting the snaps on his little outfit, had no problem with the water being poured over his lil' noggin!  We had a family gathering afterward at Wentzl's, who set aside a whole room just for us.  It was really lovely.  A few pics below.  John (my brother) is the Godfather and Lydia (Chris's sister) is the Godmother.

Up next: about 300 doctor appointments.  It all starts Thursday with preop for Sam's tubes, then tubes on Friday (all in Atlanta at Egleston).  Next week: GI for Sam in Macon, Urology for Luke in Atlanta. Week after: Pediatrician check up for Luke.  Sometime (still pending scheduling) in the next two weeks: heart cath for Sam in Atlanta.

Two prayer requests:  Say a prayer of thanksgiving and of health for Chris's cousin Josh and his wife Kimberly, who are 11 weeks into a miracle pregnancy!  Say a prayer of peace for two heart families we know who have tragically said goodbye to their babies this week.

~Kathy

Sad Day at the Cardiologist

Well, I guess we were bound to get here, one way or the other.  Just was hoping to hold off longer.  Our Cardiologist wants to do a heart cath in the next few weeks. 

We (Sam and I) went for Sam's regular 3 month Cardio visit today.  Chris is out of town and I was able to drop Luke at daycare before the visit.  Sam was SO good.  I can't even emphasize that enough.  He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach.  He weights 36lbs and is 41.5 inches tall....whoa!  Where did my baby go!

Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath.  He really can't play too long before he gets winded.  This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded.  Now, if you know Sam, you know he vomits A L L THE T I M E.  He's a gagger...it's just what he does.  But the vomiting just when winded is a fairly new development.  Cardio is going to send a referral to GI, just to check it all out.  He doesn't THINK it's heart related, which is good.  But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.

After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung).  It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before.  He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right.  He thinks the lop-sidedness might be causing the out of breath moments.  He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint).  While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming.  More of those have formed since last time too, which might contribute to shortness of breath.  He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more.  Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated.  I didn't think we would make it that far anyway, but hoped we would making a little further than this.  He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer.  We'll just have to see what they find and how much the coiling and ballooning help.

He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery)  kids on Asprin and Lisinopril to help heart function.  He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation.  He said all 3 will be life long.  I hate that.  But whatever it takes, right?

Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage.  It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience.  This is a new program at CHOA.  But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally!  My job will be to string them and start a journal for him for each bead on the string from birth to the present.  I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns.  He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is.  When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!

It may have been a blow, but we are prepared.  I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery.  It will be a rough few months for Sam, unfortunately!  He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away!  Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!! 

On a whole different note, little Luke is growing like a weed!  He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits!  He has the BEST disposition, and hardly cries.  He eats like every meal is his last, and sleeps like a champ.  He is starting to giggle, and loves to talk.  If he keeps being this good, he might earn himself a sister some day!  Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias.  I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta!  I would LOVE to snag a pediatric therapy job there! 

Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip.  We will then be headed to Mobile for Luke's baptism.  I don't think the fun ever ends in our house!

~Kathy

California, New School, and Birmingham...Oh My!!

So it has been a very busy few weeks for us...when is it not?

A few weeks ago, I flew to California with Sam, Luke, and my sister Amanda.  We met up with my parents, and spent the week visiting my Dad's mother and siblings.  I was VERY pleasantly surprised with how well both Sam and Luke did during the flight.  We opted NOT to bring supplemental oxygen this time, since Sam has done so well without needing it on previous flights.  He did great in the high altitudes too, with no obvious increase in cyanosis or his other cardiac symptoms.  Sam truly enjoyed playing at my grandmother's mountain cabin, and loved my uncle's jacuzzi and his house's proximity to the beach!  This was Sam's second trip to the Pacific, and he could have cared less how cold the water was, he was ready to dive in!  Luke was an angel, and decided it was time to start sleeping 6-7 hours at a time!  I hardly know what to do with a baby who sleeps!  The flight back was a little more rough, although not altogether bad.  Sam and Amanda sat together in a row in front of me.  Luke and I were literally squeezed in between two obese men, which made breastfeeding not only impractical but impossible.  Thank God I packed plenty of formula

The Monday we returned from California, Sam started at his new school.  It was tragic.  He hasn't been out of school more than few weeks since his birth.  This summer, not only has he been out of school for 8 weeks straight, but he has had a truly eventful 8 weeks full of Nana's and Yaya's and aunts and cousins...who would want to go back to school after all of that??  But his new school is great, and his sweet teachers have been so good.  I think they were totally baffled and freaked out when I informed them about his heart...I think they thought he might drop dead on them any second.  After a few tense days though, Sam has gotten used to his new friends and teachers, and they have relaxed about him!  He happily walked into his classroom today, and has spent everyday since the first day talking his head off about the new toys and new playground and new friends when I pick him up at the end of the day.

With Sam being out of the house, Luke and I have had some one on one bonding time...which really hasn't happened much since he was born.  Luke is SUCH a laid back kid...NOTHING like baby Sam.  Here's a photo from one of our recent busy days of doing nothing:

This past week, Chris had a business trip to Birmingham, Alabama.  The whole family came with him, even the dog.  We stayed at a nice little Embassy Suites.  We had an eventful 32 hours, which included one room change at the hotel due to leaking sinks, Sam puking in the lobby AND in his bed (sinus drainage caused a cough which caused a gag which caused...well, you know Sam...), and a brave trip to the zoo!  Which Chris was at work, I decided to take the kids out.  It just so happened the zoo was RIGHT next to the hotel, and (bonus) it was half price admission day!  Biggest problem: we didn't bring our stroller.  Thankfully, the rental stroller at the zoo was just big enough to squeeze Luke in his car seat and Sam.  (Note: stroller rental was NOT half price...)  It was warm, but not humid - a real rarity these days.  We thoroughly enjoyed our day.  Sam has a short attention span still, but loved seeing the animals.  I laughed out loud when he called the ostrich a dinosaur.  His favorite exhibit, however, was a the 'kids zoo' that included a water play area.  Luke, again, was an angel, and slept through most of the whole trip.

I have really enjoyed my maternity leave, though it has been extremely busy.  I have rarely had a single day where I just got to relax with my babies.  I don't know how, but the house seems to need more cleaning and more attention when me and the kids are home.  I feel like I'm constantly cleaning.  And I tend to get really bored in the house really quick.  Even though I LOVE being at home with the kids, I am ready to go back to work.  A) Sam's social nature and his super smarts have proven to me daycare is great of my kids development - I truly feel like he would be a different kid entirely if I had been a stay at home mom with him (and I don't mean in a good way).  B) I am a terrible person and wife after being locked in the house all day.  For my sanity and for Chris's, I need to be out and about.  C) I have a whole caseload of developmentally disabled kids who need me back at work!  For most of these kids, I'm their only option for PT.  And I'm happy to get back to them and do what I do. 

I have one more week at home, then it's back to our old routine. I'm ready.  But I'm going to live up this last week!

~Kathy