Everything looks great...Praise God!!! We will have a follow up EKG and appointment with his cardiologist in 6 months and another echo in a year!
Slightly longer Version: =0)
The night before the ECHO we had to keep Stephen awake until midnight and get the poor guy up at 5:30. An ECHO takes about 45 minutes to complete, and since most 2 year olds wont hold still for that long, they use an oral sedation drug to put them in a deep sleep. They prefer for the kiddos to come in exhausted in hopes they can give them less of the medicine and have them fall asleep relatively quickly.
We succeeded in keeping him up until 11:45 watching his favorite videos and sipping milk =0)
To my surprise he woke up happy and the next task was to keep him awake during the 50 minute drive to the hospital...his pal Dusty in Disney Planes did the trick.
Dr appointments and waiting rooms have become more difficult lately. Since he had to go in and get 2 shots almost every month this year he has associated them with unpleasant memories and therefore cries, points to the door and asks to leave immediately. It breaks this mamas heart. Even areas that look like waiting rooms stir up emotions.
So to help ease his fear we let him listen to his favorite song..."The Happy Song" Total success. We were able to check-in without one tear shed =0)
Next came vitals...surprisingly he rocked them! The nurse was excellent and blew bubbles to distract him from all the machines and wires and he he only cried when they laid him down to weigh him...he seriously hates that. His sats looked great! He was resting in the low-mid 80's! A huge improvement from birth when he would ride the low 70's and dip down into the 60's at night.
We moved right along to the exam room where the NP did a small check up and then ordered the anesthesia. It is not pleasant tasting, and he let us know it, but all in all it was quick and easy. Now all he had to do was fall asleep. Since he looked like this before the drugs (yawning) we thought it would be no problem.
He did great. Actually he was pretty awesome and hysterically funny. He had many of those moments that would have gone viral had we been able to video tape them. No joke...the whole room was cracking up! Then came the end...oh how I wanted to be anywhere but there. The last images they needed were up on his neck and that sent him off the deep end. You see one side effect of this drug is that it can make the room spin and the kiddos irritable and well down right crazy. Enter drunken meltdown. He started flailing and asking for "Happy Song" "Jack" and "baby Violet" We tried showing him pictures but that didn't cut it. Total hysterics set in.
The team was awesome and completely understanding...heck they did it to him not me. Normally nap time is easy. I put him in his crib, give him his pacifier and blanket, turn out the light and close the door...done. Once they got the last pictures we were sent down to cardiology for a follow up with his doctor...what a nightmare.
Stephen non stop cried and asked to leave. We were "that family". No one in that waiting room knew what he had just been through...that he was not a bratty little boy but was sleep deprived and drugged. I am sure Joe and I just looked like 2 deers in headlights with a belligerent 2 year old. I so badly wish I could have announced to the entire waiting room, especially a few women giving me looks, what was really going on but instead the chaos ensued all the way until while in our exam room Joe finally laid him on the table and he went from screaming to snoring in literally 6 seconds. The dude was done. He finally gave up and was out. This is how he should have looked during the ECHO!
When the doctor came in he asked if that was Stephen. I lowered my head said "yes" and then said it was his fault for drugging him =0) He too completely understood and said next time since Stephen will be 3 we could try with no sedation...SCORE! No more sedated ECHO's!!!
Of course the results were music to my ears. It had been a year since his last one and going that long without knowing was hard. I know full well that just because he looks so great on the outside doesn't mean everything is perfect on the inside. I asked a bunch of questions and the appointment ended with the heads up that next year we will be discussing the need for another cardiac catheterization and then the dreaded 3rd surgery. I told him I wasn't ready for that and he let me know that was why he was giving me a year to prepare.
Okay...tears just came as I typed. A year? It sounds like a long time today but it will be here before I know it. How do you even begin to prepare for something like that? Yes I have come along way in my faith. Yes I trust God. Yes He has brought so much good from all this but still I find myself right back to hating it all. I wish I could heal my son. I wish I cold trade places with him in the waiting rooms, appointments and most certainly the operating table. The thought of handing him over again is too much. The possibility of loosing him even more so. So I won't prepare (think about and worry) for a year. I will pray for him as I always do. I will pray that God would protect and strengthen his heart and that he would give him what he daily needs, and when the time does come, God will see him through that day like he does every other...well...hopefully with a few extra angels. (I should clarify that this doesn't mean he will be having surgery a year from now...but that the timing of it and the planning will be discussed and options considered).
So please pray for Stephen and our whole family over this next year. Pray that God himself would prepare our hearts and continue to give us all just what we need.
After such a long day of on Thursday we took the family to Legoland on Friday...and Stephen was right back to his joyful smiley self!
Thank you all for your love, support and prayers!
In Him,
Kim
