Tuesday, March 27, 2012

4 Incredibles and 1 Bummer

So often when you read about medical advancements for kids with congenital heart defects, the protocol is still yet to be approved by the FDA, or the process is stalled at a need for grant funding. So to read that an actual four year old girl underwent the Fontan operation (Luke's next heart surgery) with a cavo-pulmonary conduit created from her own stem cells instead of Gore-Tex, was to say the least, incredible to me. This experimental surgery was performed by Dr. Christopher Breuer, a Yale pediatric surgeon, who says in a Wall Street Journal article, "We're making a blood vessel where there wasn't one, ...We're inducing regeneration."

The Gore-Tex conduit's purpose in the Fontan operation is to reroute blood flow returning to the heart directly to the lungs from the lower half of the body. This takes the job of pumping blood to the lungs off the heart, allowing the single ventricle to do only one job: pump oxygenated blood out to the body. And the Gore-Tex tube works. However, it is vulnerable to clotting and infection, and of course does not grow with the child.

A tissue-engineered blood vessel? Incredible. Incredible to think how many more advances we may see in Luke's lifetime.

You know what else is incredible? My son is officially registered for kindergarten. It was definitely a "moment" for me walking out of his school last week. A moment of reflecting on all the "what-if's" that came with Luke's diagnosis and early road of fragility. During those days of heart failure and hospital stays, we could no more allow ourselves thoughts of kindergarten than we could have grown wings and flown Luke out of the hospital. But it's here. He's here. It has taken a team effort and will continue to. We'll add the school nurse to our team, but I don't foresee much need for her involvement. He's going to kindergarten to be a kindergartner. Pretty incredible.

I'll switch to Laney for our third "incredible". This girl's booty-scooting is a sight to behold. Luke never used this method for getting from point A to point B, so it is fascinating to me! Fascinating and a feat of physics. I love it. And it's a slower method of movement, so it still allows me to leave her alone for a minute or two :)

The "bummer" has to do with Laney, too. Two nights ago, she awoke shrieking in pain. It was hard to console her and I just knew her ears were bothering her. We gave her some Tylenol and we were able to get her calm enough so she would nurse back to sleep. Yesterday the doctor confirmed our diagnosis: A double ear infection. This is her third round of infections, and our pediatrician has been watching the fluid in her ears in between infections. He has mentioned a couple of times a possible visit to an ENT and after yesterday's visit, he does want us to see one. I know tubes are so not that big of deal, but still a bit of a bummer. She has inherited her mama's ears :(

How we all feel when Laney's ears are infected.

How we all feel when she's on antibiotics.

I'll end with one final "incredible". Back to Luke: Last night he started his second sport. T-ball! Coaches David and Roger (Daddy) are teamed up again to coach the Mighty Mets. Luke loved practice and thankfully the rain held off.

In one part of the practice, the coach had the kids run around the bases twice. Luke's endurance is pretty strong for a single ventricle, but my first question to Roger was, "Did he make it around twice??" He told me that he went around once and then started walking the second time around. Coach David pulled him back to home plate and he was the "high-fiver". This made me a little sad until I asked Luke last night in bed what his favorite part of practice was. His incredible answer? "Running around the bases and being the high-fiver!" What a reminder for me to be careful not to be sad for Luke, but to let him decide how he feels about situations.

There you have it!

Wednesday, March 14, 2012

Life is HARD

It's been a heavy week for me. There was the shock of Dr. Stefanelli leaving; the news of a sweet baby girl passing away from complications from her heart defect (it feels so wrong to have to attend an infant's funeral), a dear friend hearing devastating news about her unborn baby.

Life is hard.

And I so needed this "rap" today:

(Don't worry. If you can't understand him, I don't think even he knows what he is saying! He was just in the groove.)

Saturday, March 10, 2012

Change is HARD

My little joke at the end of my last blog post declaring that we'd pack our bags and follow Dr. Stefanelli if ever he were to move maybe wasn't the funniest of all jokes, but it is nowhere near funny now. A few days ago we found out, all joking aside, our beloved doctor really is moving. These past few days I have see-sawed between disbelief and sadness, fear and frustration.

As this question swirls around my head: "Will we ever find another doctor that cares for Luke as much?", I hear God speak to my heart: "Do you trust me with Luke's heart, or Dr. Stefanelli?"

I am so sad to see him go. He has been a huge part of why Luke is where he is today. He is a part of our family and we grieve his leaving. We will get to have one more appointment with him in May and we'll work together to figure out where we go from here. I know logically Dr. Stefanelli is not the only good cardiologist out there and that Dr. Obayashi will take great care of us, but a part of me wants to throw a big ol' temper tantrum.

Or maybe I'll just take Luke's suggestion: "Mama? Why don't you just tell Dr. Chris not to move?"