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.