I just talked to Trevor’s cardiologist and his initial review of the MRI shows that though Trevor’s aortic arch is over-dilated we do not need to schedule any surgery right now. YAY THANK YOU JESUS!
It’s ironic that when he was born, Trevor’s arch was hypoplastic meaning small, it was repaired during his first open heart surgery. Now it’s too big and Dr Shaffer discovered some narrowing in the aortic root. So it’s too big in one area and too small in another.
Thanks for your support, I will keep you posted. I should hear from Dr Shaffer in about a month once he has looked at all the thousands of images and the cardiac conference reviews Trevor’s results.
First of all, THANK YOU to each and every one of you who prayed for us yesterday. I know it helped!
I woke Trevor up telling him he was not going to school but that he had a test at the hospital he had to do instead. He started to cry and I reassured him that it wouldn’t hurt but he keep crying. I asked him why he was sad and he said he didn’t know what they were going to do to him, I love this age! He can at least tell me what’s on his mind So I explained everything to him and he bounced up and got dressed, not worried about a thing. Fast forward to 9am, I’M STARVING he’s yelling around the house. We did everything we could to keep him distracted but hey when you are hungry that’s hard to do.
Papa came from Dallas to go with us and be here when Nick got out of school so Trevor got to ride in the convertible Miata on the way to the hospital, he was no longer worried about eating He LOVED it. At the hospital he was in such a great mood, he was friendly and his usual funny self! I know all those prayers for peace helped.
We had a great experience at Dell Children’s. they did not do any “owies” before they gave him the laughing gas, so all of his memories are of him being happy and not being held down and poked. Mom and Dad are super happy about this
Trevor walked down the hall to the MRI room completely interested in what was going on, he headed strait for the machine like let’s DO this thing, ee were with Trevor as he breathed the gas and closed his eyes and faded into a deep sleep, it was weird to see that. I’ll admit my heart sank a little but I knew he was not in pain and in good hands. He woke up great, we had no vomiting this time, this is a first for us. Trevor ALWAYS throws up with anesthesia.
He ate all afternoon and night, slept well and got up raring for school. Yesterday could not have gone any better and I hope we get results ASAP so we can know what is going on in that special heart of his.
This morning Nick asked if Trevor was going to school, before I could answer him Trevor said “Yeah, they ONLY took pictures of my heart” with his little attitude. Watch out he’s full of sassy today world. Thank you Jesus I wouldn’t want it any other way!
This has been a tough week. An emotional roller coaster and a confirmation of my faith in God and His plan for each of us.
A dear friend had to let her son go this week, Joaquin was only 4 but an old soul. He has taught so many how to be strong, faithful and is a light in my life. After complication from his third open heart surgery, Joaquin is running and dancing with Jesus. You can stay up to date with Christie’s blog here: http://abeautifulwreck.com/
This loss has been so very hard, so many tears and heart ache, you know that feeling of actual pain in your heart? Yeah that much pain! I know it’s not about me or my feelings but it’s hard as a heart mom to not think about yourself in that position. Just because I am sensitive and empathetic doesn’t mean I have doubt in God. I don’t. I know with my head that Joaquin is safe in the arms of Jesus, his heart is whole and his pain is gone. I am thankful for that. I am allowed to mourn the loss of him though, don’t mistake my tears for weakness.
Trevor has his MRI on Thursday October 10th at 12:30, he will be fully sedated with a breathing tube and it will take two hours. Please keep him in your prayers. Anytime he needs anesthesia I get anxious. I am more concerned about the results of this MRI. Trevor is getting to the age of understanding and expressing fear about surgery and is adamant about taking his medicine each morning. He is so young and should not have to know about these things.
I am evermore passionate about CHD research and the technology breakthroughs coming in Trevor’s lifetime. I will never stop advocating for all kids affected by congenital heart defects, it’s my calling. My heart sometimes feels like it can’t take much more and God proves me wrong each time. It aches when my sweet baby boy needs tests, when we- the CHD community loses a child, when I comfort Nicholas because he’s worried about Trevor. especially when I comfort my Trevor because he’s scared and doesn’t want to see any doctor, he has a list of questions he asked me every time we have any type of appointment. My heart also fills with love and joy with every CHD victory, with each compassionate deed my boys do with out being asked, with being part of The Children’s Heart Foundation., with the out-pour of love and prayers when I ask for prayer Trevor or any child with CHD. When I see the joy and purity on my boys’ faces.
And every tear I’ve cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm
Trevor saw Dr. Shaffer today and we did the usual, pressures, EKG, ECHO and we are still watching his aortic arch. Trevor’s conduit, stent and valves are doing well and nothing has changed since his last echo last summer! YAY! His arch, however is still an issue, it’s very dilated and he needs an MRI to get a better look so we can continue to monitor it.
Ideally his arch will hold out until his next conduit replacement but since he has such a large one (19mm) we are expecting to get several more years out of it. If the arch needs repair before that, it’s an added surgery and if the conduit needs replacing in the near future then it has not lasted as long as expected which is also bad news. I am very unsettled and anxious about were we are. I will say you never want your cardiologist to say “that arch scares me”
It’s a bird, it’s a pane it’s……………… SUPER TREVOR
Trevor received his Heart Hero Cape today, what a cool thing this is. SuperFlyKids does them for free for CHD warriors . It came just in time for his 6 month cardiology check up tomorrow. As always, we are praying for a good report, the nerves get to me every time. I will update tomorrow.
Hello Friends & Family!
CHD week is over but it was another great one!
I have been so busy and really loving it, between spreading awareness, taking baked goodies to PCICU at Dell Children’s, CHF Texas Chapter debut event,planning the Congenital Heart Walk and meetings for days I can’t help but sit back and feel so blessed.
New Living Translation (NLT)
92 If your instructions hadn’t sustained me with joy,
I would have died in my misery.
That verse is from my current Bible Study and it has really resonated in me and how and why I do what I do for CHD awareness, funding and advocacy.
CHFTX hosted our first event on February 13th and I am please to say with the help of THE MOST AMAZING board of directors and some terrific donors, vendors and guests it was a success. We will have pics soon
If you would like to support Trevor’s Allstars in our upcoming walk we are taking team members and donations HERE.
Does it ever get easier? Am I too sensitive? Will I ever be able to talk about Trevor with out crying?
Maybe not, but that is how God made me and he choose me to be Trevor’s mom. So tears and all…here I am.
CHD week is hard for me, I reminisce about everything we’ve been through, I remember those children we, the heart community, have lost. I relive those moments that no mother should ever have to go through.
CHD I HATE YOU! There I said it. I needed to be said.
In honor of CHD week this post is dedicated to EVERY.SINGLE.HEART.HERO and their families, it’s so difficult to be a Heart Mom or Dad or Sibling or Grandparent or Aunt or Uncle or Friend. Each of us is affected and have the responsibility to spread awareness. Go now…educate someone and let them be part of the change in the CHD community.
I am a
Heart Hugs <3
Today kicks off the month long awareness campaign that will educate and answer questions about congenital heart defects. You will be able to find a plethora of information on social media and hopefully in your own community.
Let’s start with some facts:
1 in 100 babies are born with a congenital heart defect (CHD).
Congenital Heart Defect means an abnormality in the heart that is present at birth.
Trevor is 5 in a half now and for the first time ever, he had a check up and the Doctor didn’t want/need an echo-cardiogram! I call this a huge victory. Trevor is very stable and doing well. Thank God for this!
Trevor is loving kindergarten, learning lots and just exploding socially, not that he needed help the girls (already) love him *sigh*
In February Trevor was having some severe chest pain and after a couple different appointments and an ER visit a cat scan was ordered. Everything showed “no reason” for the pain and actually showed Trevor’s heart was doing just fine. We treated the symtoms and it eventually went away.
In May Trevor had his 5 year well visit and he had grown nearly 1.5 inches since October! Voila! growing that much with scar tissue in the chest wall =pain! We are so glad to have worked that out.
We just had a cardiology appt with Dr. Shaffer and Trevor is still doing very well and we decided not to do a heart cath right now since his blood flow in the LPA is only slightly restricted and we would likely cath next summer. YAY! I will admit I was concerned about having “new” doctors doing procedures on him. It’s inevitable but at least it’s been pushed back
We are enjoying out summer, hope you are too!