There? Every night. One night we even had to close the window because it was too cold.
And though we didn't officially run the Boston Marathon, we definitely walked all of 26.2 miles in our treks to and from CHB, and exploring the lovely city.
Ethan is without a doubt a miracle. The power of prayer and the team of supporters he had behind him is immeasurable, other than in the fact we brought him home 6 days post-procedure.
I have some very special people to thank-saving that for my next post, as this one is already going to be long enough.
He has a pediatrician appointment next Monday, and a local Cardiology follow up next Wednesday, and we are anticipating the green light for him to return to school by the end of next week!
Until every child is well
Children's Hospital of Boston's motto.
And in this case, Ethan was one of those children. But, unfortunately not every child leaves there well.
And though we rejoice in the fact that his team did something amazing, beyond amazing, miraculous, as I walked back into the waiting room after talking to Dr Porras about the cath and the valve, with the biggest smile on my face, and a huge relief off my shoulders, as much as I wanted to shout and jump and fist pump and high five everybody in there with our good results, I saw other families who weren't so fortunate.
The month old baby on ECMO who wasn't doing well, and her young parents clinging to hope and each other.
The family calling other family members telling them their daughter was not improving, and they were going back to surgery at 7am the next day.
The newly transplanted little girl who had no family present because Mom and Dad both had to be at work to pay the bills.
The sweet 14month old girl who had been bounced back from CICU to 8 East twice after a 12 hour surgery in July, and no thought of going home in the near future.
The young boy who coded down the hall from us on Thursday. And the parents that stood outside the door praying and hoping and trying to hold it together.
Until every child is well
But not every child gets well, or gets fixed, or even gets to go home. And it's not fair. And I struggle with my own guilt vs happiness because our bald guy was one of the success stories. I know he deserves it, and Lord knows we all deserve a little luck in our corner of late, but so did all those other families.
And to the Mom who was most instrumental in helping me admit what I already knew I needed to do in seeking a second opinion, my heart aches for her pain, as she celebrated her son's 8th birthday on Sunday, without him. She has endured a pain no parent should go through, yet reached out and helped me in ways indescribable.
Breathe.
You're not even there, and I'm sure you're already thinking about what your other kids will eat while you are gone.
You don't need anyone's approval.
I would pray for strength for you, but you don't need it. You would move mountains for your boy.
I know, because I was you.
The fact that this Mom puts me in the same category with her is humbling.
I don't think of myself as strong. Because the times I'm fighting the hardest for something seems to be when I feel the most beaten.
I guess that is where my strength lies. And my stubbornness.
I only wish I knew this Mother under better circumstances. And had gotten to know her sweet boy who loved trains. It is a blessing to know her and to have had her in our bald guy's corner the whole time.
Your sweet boy will live on forever in the lives you both have touched, namely ours.
Bridget, I hope you don't mind my sharing the story of your precious Jack;
www.jacksheart.com
And if any of you readers have a few extra dollars lying around you would like to go to a very, very special cause, consider donating to Jack's Heart Fund.
The little fund that could
I was told to skip all the medical mumbo-jumbo and dumb it down a little, so here goes;
Ethan got a huge valve-think garden hose size in comparison to his stick figure arms and legs-put in through his groin by catheter. I will post his post-cath chest X-ray at the end of this post, so you can see his new hardware.
He is the smallest child-by small we mean weight-to ever have had this done by cath. Ever.
FDA requirements state 30kg. Ethan is 17kg.
We had to sign a form about the valve being used "off label" and it's risks in someone his size.
And insurance may not pay for it being utilized off label.
But that was a risk we were willing to take, especially after the team in Boston told us this was Ethan's only chance, and their only option.
We knew we had to get that valve in.
Ethan's heart, though medically managed, had become so dysfunctional, and his right heart so enlarged, that it had pushed his pulmonary artery-and the conduit from his previous PV replacement so anterior-or so close to his chest wall-they felt it would have been destroyed just trying to open his chest for an open heart, and he wouldn't have done well with bypass. CPB or cardiopulmonary bypass is when the heart is stopped and it's function of circulating blood to the lungs and other organs is performed by the bypass machine. Yep-a still, not beating heart.
Once we had all the necessary information, we didn't feel a surgical procedure would have a positive outcome for Ethan.
We did what we had to do to ensure a better outcome, thus better quality of life for him.
And that they did. Home with no oxygen. Pinker feet. Less extremity discoloration. Handling this terrible Midwest heat and humidity just fine. And did I mention the increased energy?
This valve could very well begin leaking, however, the benefit of having a Melody means just going in with cath and swapping out the leaky one for a new one. Viola!
And still no open heart surgery.
What I loved most about CHB was that not once, NEVER one time did they look at Ethan as a Chromosomal Anomaly 18q- kid.
I didn't have to convince them his heart was failing.
I never got condescending looks and snide comments from the team who viewed me as a crazy Mom.
I never heard " well....we don't know why, but.....Ethan does have this chromosomal anomaly..."
They asked our opinion on resuming feeds, how much and how soon.
They asked about his baseline breathing, heart rate, demeanor, etc.
They brought me out into the hallway for rounds with the surgeon and doctors; the team not standing just far enough away from the door and speaking quietly so I wouldn't hear.
Never once did they assume to know my boy better than me.
I was as much a part of Ethan's medical team as his Cardiologist. And I appreciate the respect, especially coming from some of the smartest, sharpest doctors in the country.
I expected arrogance, and they had every right to be with what they accomplish out there daily.
But I got genuine care and concern for my little bald guy.
Until every child is well
He went to Boston just a little boy with a broken heart.
And came back with a fixed one.
Ethan's new valve-the mesh looking thing! Yep-it's that big!
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