An update.

OMG...Where to begin?

Just in the past 7 days, My family has been through HELL!  I can not say too many things publicly, what I can tell you is that everyone, especially DCF, has underestimated how broken all of these children truly are. 

Now onto what I CAN tell you...

Spencer
After several meetings with Spencer's school RE:his IEP, I am proud to report that Spencer is doing fantastic.  He has made significant progression and has excelled so much in the last few weeks that some of his pull out services have been reduced.  His reading is finally at grade level, which I couldn't be more happy with, but it has been an uphill struggle as he still doesn't like to read.  We have also recently completed an application to place Spencer in a local charter school, since he excels in Science, and we think that it would be a better fit for where he wants to be in the future.  Sadly, we have also had to increase Spencer's therapy visits as he is really struggling with his OWN space since the "Littles" have arrived.  We are looking into putting up some walls and giving him his own room in the long term.  We also allowed him to take a season off from sports this winter to focus on his accademics. 

Tucker
So this week we had a followup to Tucker's Cardiac Neuro Deveopmental Testing, and surprisingly, Tucker was NOT diagnosed as being on the Autism Spectrum.  Although Tucker has MANY of the symptoms, he is still classified as "Developmental Delayed".  These symptoms can also fall under an Auditory Processing Disorder.  So Dr. Henson suggested seeing both a neurologist and an audiologist as he already has hearing issues.  Many of these things can be managed in the classroom, yet, there will have to be certain amendments in place in his IEP to cover these exceptions once I have the report in hand.  We are still waiting to see if Tucker had another cardiac episode like he did over the summer.   Nothing just yet,  we have a cardiology workup in January.   He also has a dental appointment coming up as well, those are always fun!  (sarcasm)

The Littles
Both of "The Little's" are doing well.  There has been quite the adjustment for both of the kids to have no structure in their lives and to have been placed in a home where there is a strict routine has certainly been challenging.  Due to the nature of the removal from their home, K and A have exhibited some strange behaviors of late.  I have contacted trama specialists on their behalf our first appointment luckily could be squeezed in this week.  As for the status of their mother, she has blown off more than she has attended of her visits this last month.  She continues to ignore the children's phone calls and says that she is "working" or that her phone was off.   She has not even made an active attempt to finalize seeing her Children for Christmas.  Yup...she breaks their little hearts on the reg! 

A
A recently celebrated his 7th birthday with us, sadly at the end of the day, he asked me if he would be living with us for his next birthday as well.  His response was painful to say the least..."Well, I hope so, this was the best birthday that I have ever had!"  And we didn't even do much this year for any of the kids birthdays. 
I received his educational testing back and like I suspected he is delayed in regards to his peers.  He is showing that he has the ability to perform like his peers, and he has just lacked the exposure to things like writing on paper and peer socialization.     
Medically, He is up to date on all of his vaccines, yet, he has recently been diagnosed with several cavities (they stopped counting at 5) and will have to go under sedation at Boston Children's Hospital to have them all  fixed.  There is also the situation RE:Tree Nut Allergy, their mom says that he has one, yet there is no documentation supporting it.  So, testing for this to make sure that it is a true allergy, begins at the end of January.  He also came home the other day beeming from EAR to EAR, he was chosen to be music's  student of the month, also the simple mention of getting invited to a birthday party was also enough to make his day AH-MAZING!  Also, I am proud to say that although he has issues around being shown any type of affection or love, he did tell me that he loved me the other day after my boys said it to me.   Baby steps. 

K
Well, let's just say that this little girl is brilliant in compared to her peers.  They had to stop her testing at the 7 1/2 age level because that's where the preschool testing ends. (I guess that there is something to be said about being parked in front of a ipad all day everyday when she was with her mother)  Socially is something else entirely, however, she struggles to play with her peers.  She would rather play alone.  So very sad.  So, I have started to take her to the local play school here in town to become more socialized with her peers. 
She also received a great dental checkup, and I am happy to report...ALL VACCINES are now up to date...Whew!  There seems to be ALOT of separation anxiety daily with her.  She is often time so close to me that she bumps into me if I stop short.  Also there is also something about her appearing in the bathroom that creeps me out. 

Now to the not so great news...Out of the blue, the birth father of both of the children has called DCF(Which are only involved because they had an open case under the kids mother) and would like to pursue obtaining permanent custody of both of the children.  Now just to give everyone a little background on this situation.  Their father hasn't been involved in their lives in almost FOUR years!  Thats right, he hasnt seen A since he was about 2 1/2 and K since she was about 8 months old.  Several years back he was ordered to attend supervised visits with the children and he did not comply to those rules, and hasn't paid any sort of child support almost that long as well.  Even being paid partially under the table so that he can pay less child support for them.  He is a known drug dealer and apparently has claimed both children on his taxes the last FOUR years!  OMG...WE HAVE A REAL FUCKING WINNER HERE...!

Our next court date will be in January and I am beside myself.  I will be going to the lawyer of the day after Christmas in the Worcester Probate Court to see what I can do to make sure that the kids rights are protected.  I also will be petitioning the court for the judge to assign a Guardian at Lightum to speak on their behalf.  We will also be asking for permanent custody.  

Let me finish by telling everyone how humbling these last few months have been on our family.  I have heard that it takes a "village" and I wouldn't be able to help these kids without the amazing support of my wonderful friends and family.  The notes of support (the monetary donations, gas cards, bottles of wine, groceries and the endless Christmas gifts) that seem to arrive just when I am about to crack under all of the daily pressure have kept me motivated to continue this fight.  From the bottom of my heart...THANK YOU!

Clearly, Gary and I have alot of work cut out for us, however, all of these people don't know who they are dealing with!   
 
SIDENOTE: As we compile our court case, If anyone would like to write the court a Letter of Character Reference for either Gary or myself, please send it to one of us and address it to the following:

Worcester Probate Court
225 Main Street
Worcester, MA 01608

Tis the season

So here we are...less than three weeks until Christmas, and I am a friggin nightmare.  Let's be honest...I was a mess with TWO kids...Now with FOUR...Well...you get where I'm going.

I honestly hate this time of year.  I never know what day it is, I am always messing up my "To Do" lists.  I went to the store 3 times since Monday and forgot to buy milk EVERY SINGLE TIME this week.  AND THE SNOW IS COMING!  Don't get me wrong, the declining warm weather brings back some great memories of vacationing in Maine when I was a kid, yet...there are always some not so great memories that come back too.

Someone once asked me, "What will be the greatest gift that you can instill in your children to leave this world a better place than the way that they found it?"  And for years, I have thought about that...What would be the ONE gift that I could give them, which would allow them to leave this world a better place?  And although, this is still a CONSTANT work in progress...especially for Tucker, I think that we have found the right answer for us.  I would want them to be Generous yet Humble, in all that they do.  Because at the end of everyday...I am floored by the outpouring of support that has been shown towards my family over the years.  God, how lucky we are to be surrounded by people who constantly check in with us to see how we are and see if we need anything to make our lives a little easier.  What a wonderful gift. 

So this year, I am going to try to not worry about all of the little things, and I am going to try to enjoy all of " the little things".  Which is staying "true" to my new years resolution from many years ago..."Simplify your Life"  I will make this season spectacular and I will try to make it the very best that I can, even if we can't do everything that I try to cram into a weekend.  We have already made tons of memories for "The Littles" that they will remember this holiday for a lifetime.

Cheers to a wonderful holiday season!
(UGH...and I just realized that we haven't seen Santa yet!)

"Watson party of six?"

Have you ever stopped and thought about change?  The actual definition of the word is "to make or become different."  Well...to sum up that thought...The Watson's have had some BIG changes recently.

I will attempt to start at the beginning so that you will understand how quickly things happened...several weeks ago a family member physically assaulted one of her children. As a result of the incident, the local Police were called to a campground where the family of 5 was living in a dilapidated camper and in tents.  The child, whom was assaulted was temporarily taken in by the children's grandmother.  Because DCF (Department of Children and Families) was already involved with the children while they were in their mother's custody, they were called out to his new residence due to it being an ongoing investigation.  The DCF investigator heard what she considered " a lot of concerning information", yet, DCF did not feel that the other three children were in imminent danger.  Our family, however; disagreed.  It was evident that there were honest living concerns with how these children were existing.  So, three members of our family went to probate court and filed for the children to be removed by the state police through emergent temporary orders immediately.  Myself, and two other family members, went before a judge and each of our individual requests were all granted. 

SO, the Watson family is now; a family of SIX. 

Based on the method of removal from the home, being that the court removed them as opposed to DCF, there are no funds available to help us care for them. "The littles" as I will refer to them for legal purposes (as I do not want to print their names) are great kids and are adjusting well.  This has, very much, been a period of transition, especially to our daily routine as we acclimate to living together.  Tucker and Spencer have been instrumental in helping the littles adjust to living within the Watson Home.

 As most already know, I decided to leave my job earlier this summer, as a result of some ongoing health concerns with Tucker.  Thankfully, Gary works two jobs to help provide for our family, but I fear that it may not be enough.  The littles came into our home with little to no belongings.  We have received a large amount of donations, in the way of clothing and toys, from close family and friends. Please understand that, due to the circumstances, very few people were aware that any of this was taking place.  We felt that a close, quiet, transition was in the best interest of the children.  These children have been in a very difficult situation, for a long time. Sadly, they were blissfully unaware, of how little they had, until they began receiving the donations. Something as basic as three square meals a day, with snacks whenever they want one, has been the biggest adjustment. They eat as though they have never eaten before.  Which, with only one of working, has made the grocery bill substantially more than ever before. But, I want these children to know, that although they just ate dinner, they will never know the feeling of hunger again. Nor, will they ever have to worry about the most basic necessities, such as a warm bath and clean clothes.

But, as I said, with only one of us working, things financially are very tight.  We have received help in the way of gift cards for groceries, some monetary donations, clothes, shoes, coats, toys and books (which is by far, their favorite of all).  These gifts are a God send and are so desperately needed. We, as a family, want to give these children all that they deserve, which is hard without the potential of financial assistance from DCF, and only one of us working. Although, it is my intention to return to work, for the time being, it is important to be available for all four children, and especially to be with the little one who is not old enough for school just yet. These children have been through so much, and for the first time in their little lives, they have their own beds, their own things, and unlimited access to food and shelter. They have a home.

The kindness of those who have already reached out to us, has been the most humbling experience.  The generosity of the people in our lives is unprecedented and will truly never be forgotten. We still have a very long road ahead of us, but in true Watson style, we will take each day as it comes and see it for what it truly is; a blessing.   

Adiós Appendix

Spencer went into surgery just before noon today.  The surgeons concern was that they could see a large area of fluid, which could mean that the appendix had perforated, or it could be the start of appendicitis.  Either way it has to come out, so that it will.  So around 10am they brought us up to the pre-surgery area.  Spencer has what we now know as "severe anxiety"  could even be PTSD of sorts.  Especially now that he is getting a little bit older, he is starting to understand how serious Tucker's heart condition really is.  He was terrified from the moment that we stepped foot into the ER.  Even going far enough to ask Gary and I if he would have to get shots or have a big boo-boo on his belly like Tucker.   It broke our hearts...

We were blessed to receive a Linus Project Blanket in the pre-op area.   Spencer was so cold, so it was very much appreciated as we arrived in the ER with only the clothes on our backs.   WOW...the irony.   #warminghearts

After a little over an hour...Spencer's surgeon came to the waiting area and advised us that they had just got his appendix out before it burst into his plural space.  It was huge and had been large and growing for quite some time.  At Spencer's request, he wanted to see what it looked like,  as the surgeon said... it looks like a little worm.  Looks more like a giant snake to me.   

So after many rounds of anxiety and pain meds,  The anesthesiologist finally listened to Gary and I and agreed to let us take him home.  By then...Spencer's anxiety was epic, and the little girl that had just got tubes in her ears was not making his anxiety any less.  (So thankful that they moved her across the floor to make him more comfortable)  So we woke him up and tried to get him to eat,  nothing.   So they discharged him home to finish recovering.  Per MD orders, he had to take it easy for a while and no sports or running until we see Spencer back in clinic next Friday.   

Feeling so sad that this had to happen to our little boy.   #blessed #nosleep #goodnight

So...This just friggin happened...

So...I guess it's time for another update.  I have been very vocal about not being a "mini van driving soccer" mom.  Hell if you know me at all, you would say how accurate that statement really is.  I swear that this GIANT black cloud keeps following our family. 

Yesterday, we had a typical day, I took the boys to the $1 movies and then out for some errands, then to Davis Farmland, they jumped and played all afternoon.  When we returned home, Spencer complained of a belly ache, as he sometimes does when he doesn't eat, so I made him dinner and he refused to eat it,  I have him a freeze pop and then he went to bed.   Around midnight, Spencer woke up screaming in pain, begging me to take him to the hospital, which was the first sign that something drastic was wrong.  I drove him to Clinton Hospital and we were there for maybe 15 minutes and he was wailing in agony.  They placed an IV line in his elbow and he couldn't stop screaming about it hurting...It was constant.   He was terrified!  So after some blood work, Zofran and an attempt at starting some hydration... we were transferred to the pediatric center in Worcester at UMASS.  Before we left they habe him some Tylenol for his pain,  which really helped his headache subside.

Spencer talked the entire ride to the EMT, asked a bunch of questions about the supplies on board.   It was cool to see him so inquisitive, but when asked, he politely declined that he would go info the medical field.  

Once we got in Worcester,  Spencer screamed for hours over the pain.   After they gave him his ultrasound he received morphine,  which had taken hours to work.   They pushed some IV  antibiotics and we waited for the results...

They think that Spencer's Appendix has preforated due to a appendiceal lumen, or a appendixlumen.  Long story short... He is having emergency surgery to remove it, the course of treatment is very different if it hasn't ruptured vs if it has ruptured...please pray for the latter.

BIG Changes are COMING!

Oh universe....I HEAR YA LOUD AND CLEAR!

I cant help but wonder why on earth it seems that some people have these lives that nothing ever phases them.  The see rainbows and win big on scratch tickets.  From the outside looking in...TODAY ESPECIALLY...I wish that I was one of those people.  Today was a difficult day for all of us.  After days of constant tears, Tuckers night terrors, and wondering what the hell should we do...I walked in to my office and had a very difficult conversation with my boss.  My position is just not possible to keep at the newspaper with Tucker's current situation.  It brings me too far away from him and that is just too unsettling for this mama bear.  So after a very difficult conversation with our daycare provider, with whom we love, we have decided that the best thing for us to do is for me to stay home with Tucker.  Because at the end of the day, I couldn't live if anything happened to him outside of my care.

I am not sure what is next down the road for me in the way of employment options, but I know that there is something out there that would be perfect for this heart mom.  The only prerequisites are that it would have to have mothers hours and be extremely flexible during flu season, because at the end of every day...This little cherubs face WILL ALWAYS come first.   

Finally, an answer...but not one that we wanted.

Wednesday July 5th

Tucker has been placed on precautions and he was not happy that he could only ride his bike in his room.  But Tucker was super excited that Matt from Music Therapy came and sang the silly name song though.  We renamed Tucker, Ucker, Carter, Bucker, and Gary...Fary.  He particularly loved that one!

Then there was the Ryan Seacrest Studios BINGO, guess who won a FIGET SPINNER?  He was so adorable that Mario from the studio gave him a Patriot's Hat as well.  

So...Now we know the worst time to be inpatient is after July 1st, because its when the new residents start.  So they sent this new resident in to tell me that they wouldn't be able to do his stress test until possibly Friday.  I nearly lost my mind, which then sent her back to her attending for discussion.  Within minutes it seemed that we went from an 8am Thursday appointment to, the possibility of a 4:30pm afternoon appointment.  

SO...Looks like you have to loose your mind once an a while to get what you want.  

During his Stress test they got Tucker's heart rate up to just under 180bpm, he was a trooper running on the treadmill in the lab.  He exhausted himself out very quickly.  

It was so hard to watch his limitations.  

After the test we waited for the results, and I packed up the room.  Our cardiologist Dr. Porras, paid Tucker a visit and wanted to hear the story from me, see him and check out all of his testing, it seems to him what Tucker experienced was an episode of heat (or excercise) induced Supraventricular tachycardia (SVT) which is an 

is an abnormally fast heart rhythm arising from improper electrical activity in the upper part of the heart.  Signs and symptoms can arise suddenly and may resolve without treatment. Stress, exercise, and emotion can all result in a normal or physiological increase in heart rate.  

The rapid heart rate reduces the opportunity for the "pump" to fill between beats decreasing cardiac output and as a consequence blood pressure.  It can cause the following: Pounding heart, Shortness of breath, Chest pain, Rapid breathing, Dizziness, Loss of consciousness (in only the most serious cases)

For infants and toddlers, symptoms of heart arrhythmias such as SVT are more difficult to assess because of limited ability to communicate. Caregivers should watch for lack of interest in feeding, shallow breathing, and lethargy. These symptoms may be subtle and may be accompanied by vomiting and/or a decrease in responsiveness.  

This diagnosis is more complex in a single ventricle child than a heart healthy child.  Tucker will have to be monitored closely during the hot summer months and during any illnesses where he has a temperature.  Gary and I are terrified that this cardiac episode will happen again.     

So very much, not the answer that we wanted. 

And now other setback...

Let me start by saying that we LOVE this hospital.  We know that there is no better place in the world to take our little boy to find answers.  The biggest challenge is when their are just no tests that we can perform that will give us those answers.  It's like we are just walking on eggshells and waiting for another cardiac episode to happen.  They haven't detected even an erythmia.  

We had an uneventful Fourth by watching the fireworks over the Boston skyline which was pretty neat.  It did have me thinking of how many holidays we have spent within these walls.  This is our first July 4th on 8 east, so I guess that we can't complain.

Just before rounds this morning, Tucker's new RN Kaitlynn was in doing her assessment when Tucker coughed several times then vomited all of his breakfast.  He was not thrilled that now he is back on a liquid diet.  So during rounds this morning, the team placed him on precautions.  If you are unaware what that means, basically its like a scarlet letter that you have a communicable illness and you get locked in your room.  Essentially, it's the worst with a toddler boy, so child life brought us in a bucket for Tucker to play with, play doh,  Legos, bubbles, crayons, minions, a basketball hoop and some sensory toys.  We have already cycled through most of them already.  

During rounds, they mentioned several options, first, they are trying to get us in for a stress test, however they are completely booked today and the vomiting has them worried now so I am thinking that we will be here until we get this stress test to rule out weither or not it was an "activity induced" cardiac episode.   

On a side note, if I wasn't a complete lunatic of a HEART mom already, the RN that handed me our pediatric heart kit today, and after our discussion on what happened the other night...I am sure wishes that she could take it all back now. 

Because if I wasn't flipping out that he could code before, now I can't get it out of my mind.  I hate this CHD life! 

Nocturnal Nightmare and a HEART rock.

So last night we deceided to have a family night at The Mendon Drive In, where we found a awesome heart rock.  

Spencer and Tucker were playing at The Giant Slide until it was time to start the movie.  There were quite a few kids in line, so there was about 15 kids at the bottom waiting for sacks, and then about 15 kids in line at the top waiting for their runway to take off.  I had brought a chair over from the car, and my cell phone was starting to die, so I turned it off after a few photos and decided to waych them play.  There was nothing out of the ordinary about this day.  Tucker was acting completely normal until he came over to me and told me that he needed a drink of water.  I said, "ok, let me just get Spencer and we will head to the truck."  Tucker then went from 3 to a 100 in agitation, in under seconds, which I chalked up to just being tired.  He was then screaming and tugging violently at my clothes, so I left Spencer at the slide and took Tucker to the truck.  I asked Gary where the water was, and asked him if he could go to go get Spencer, he told me the water was in the back, I put the back down and put Tucker on the tailgate.  His lips were blue, almost purple... Tucker then complained that his belly hurt but be was pointing to his chest.  I screamed for Gary and he came over, and saw how blue they were, then Tucker girgled and he threw up several times, he went almost completly limp, told me that he needed to sleep, then eyes rolled back in his head, then his lips went white and he was unresponsive on and off for over 5+ minutes, then he came to and threw up again and told me that he wanted to go to sleep again.  I had to shake him alert several times.  We rushed him to Milford Hospital after as we called Children's Hospital.  After speaking with the person assigned to the parent calls, Abbas, which just so happened to be the same MD that we spoke with for his cardiac catheterization just a week before.  So he was familiar with his case and the "heart block" that occured during his surgery last week.  He made the decision that Milford could monitor him, however, the safest place to be was Boston.   So around midnight we were transported to Boston Children's ER via ambulance and we were admitted around 2:30am.   Abbas was thinking that it could be one of the following: Severe dehydration, a neurological problem, a mini stroke, something similiar to heart block, or that he threw a blood clot.  So we're here until they rule out the last three.

This morning during rounds, they ruled out dehydration when his electrolytes were normal.  Then the Neurology team ruled out a seizure, when he passed all of their testing.   Now we are currently at a standstill until all of his heart testing comes back.  While we wait for answers, we got to make fireworks, Children's style, visit with some not so scary clowns, visit with some of our favorite heart friends, AND had more root beer popsicles than we can count.  

That Damn Fenestration...

I get so many people that ask me all sorts of questions about Tucker and his Congenital Heart Disease.  With everything that he has endured in his short life, someone asked me once, several years ago, "What is it like to have a heart child?"  Although I don't remember the exact long complicated answer that I gave, I think that today's answer would be very different.  

My new answer would be..."You know that feeling that you get when your a brand new parent and you put your child to bed for the first time and you keep checking that newborn to make sure that they are still breathing.  And they are, but then, 2 minutes later you check them again, and you can clearly see that they are fine, but then your mind starts to race, what if they aren't ok and you didn't check them, SO you check them again, because you will think the worst case scenario.  IF you could bottle up those feelings, ALL of that worry, sadly...THAT is EXACTLY what CONGENITAL HEART DISEASE is LIKE!  It's like a slow torture, where you are always waiting for the worst case scenario.

So although we have had a great few years, there is always such dread that comes over us when Tucker has to go back into Children's for any type of testing.  This year Tucker's Cardiologist suggested that we have a cardiac catheterization to look at how his IntraCardiac Fontan (last open heart surgery) was performing.  So last Tuesday June 20th, we reported to Boston Children's Hospital for our Pre-cath testing in the Pre-op Clinic.  

Tucker was such a trooper that he got a special visit to Davis Farmland when he was done with all of his testing for the day.

The next day...Tucker reported for his Cardiac Catheterization to Boston Children's Hospital with all of his good luck animal's in tow...

Tucker was first case, no doubt because he is notorious for being "not your textbook" case.  It always seems that Tucker is never the "norm" AND what never happens to others ALWAYS happens to him.  So his procedure went well, however, our cardiologist told us after the procedure that Tucker went into "heart block" during the cath.  (Heart Block Definition:  Heart block is a disease or inherited condition that causes a fault within the heart's natural pacemaker due to some kind of obstruction (or "block") in the electrical conduction system of the heart.) When they tested the fenestration (hole that they made during his last open heart surgery) it worked better when it was balloned closed, so Tucker is now the proud owner of a device called an Amplatzer in his little half of a heart.  

It seems that this new hardware is causing some drastic fluctuations with his heart rate, which could just be his new "normal".  We were discharged and asked to keep Tucker sedentary for several days while his scar tissue could start to grow into his new hardware so that it did not shift internally.  In addition, we have to bring him back next week to run more tests to make sure that his heart rate is still increasing with activity.  I guess that this is common in single ventricle kids post surgical intervention.  While Tucker was in patient, his night RN noticed that his heart rate goes down into the 40's (normal is around 70)when he sleeps, however, it does increase during activity when awake, so it is something that our cardiologist will continue to watch closely in clinic.  

So we were urged to update Tucker's Emergency Action Plan, make him a dental appointment and another Cardiac Neurodevelopmental Study appointment and to enjoy our next 6 months between cardiac appointments. 

A silver lining.

So there is something to be said for having the best possible team at the #1 cardiac hospital in the world looking out for our little boy.  Let's call it...A Silver Lining. 

Let me start by saying that this last year has been fantastic.  It's the first time that I feel as we were more "healthy" than we were sick this year.  A benefit that I thank Tucker's two amazing caretakers, his  preschool teacher and daycare provider with whom both understand the importance of keeping him healthy and out of the hospital during flu season. 

The anxiety always starts a few days before we go to clinic.  We always seem a little off, as our minds are always preoccupied with the day of testing and always waiting for the bubble to burst on our "good run".  Since this past fall Tucker's breathing has been more labored with minimal walking.  So today at our appointment I asked about it.  Tucker's oxygen saturation, post Fontan, has been higher (over 95) than they would like to see.  He should be around the lower 90's.  We have seen several episodes where Tucker just can't keep up or do what he use to, post Fontan.  And this past fall, soccer was an absolute nightmare.  He would run from one side of the field halfway to the other and then sit in the grass for 10 minutes, huffing.  Although this might be his "normal", it is not what they like to see post Fontan.

After today's echo in clinic, we discussed with Dr. Porras what could possibly be happening.  There are a few things that could be going on:
1.) Tucker's fenestration, a hole that was made during his last open heart surgery, is still open.  They had thought that over this time that it would close on its own.  It's still open and on the larger side than what they like to see.

2.) Dr. Porras also feels that Tucker's labored breathing could be a direct result of having what is called "collaterals", which are little tunnels of tissue that are formed when there is an increased blood flow to a specific area.  (Think of an icecream cone shaped tunnel that starts to grow off of an existing artery or vein.). This ties up some of the blood flow and could be attributing to his labored breathing and his blue episodes during sports or gym class. 

3.) This could also just be his "new" norm.    Since he has a history of not being the textbook case of PAIVS (or Tricuspid Artresia).

The only way to know for sure what is going on is to go in via a cardiac catheterization and explore for collaterals and tie them off and hope that his numbers and breathing both improve.  The risk with the catheterization is minimal, yet because nothing can ever be textbook with Tucker, there still are risks.

Tucker has had several cardiac catheterizations already, there is so much scar tissue in his arteries in both of his legs which makes them "blocked" and unable to use.  They can go in via an artery in either an arm or at his neck, but since he is still so tiny, the risk of them also being blocked for the future is also high. 

So after much discussion with Dr. Porras, Tucker will be scheduled for a cardiac catheterization this summer. 

The highlight of our day was seeing a few of our favorite faces in The Center For Families.