Tag Archives: Dr. Rutter

Wagons

18 Friday Oct 2013

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Iris took her first ride in a little red wagon at Doernbecher in early July. She had just been transferred out of the PICU, detached from most of her tubes and equipment, and well on her way to recovery. I pulled her up and down the hallway of her unit … sometimes escaping the double doors for a trip around the hospital to fetch her favorite treat … a hard-boiled egg from Starbucks in the lobby. She loved it. It was a chance to explore and feel like a child when she was going through something that was anything but an innocent, childlike experience.

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Today we were back at Doernbecher. Iris had a follow up bronchoscopy with Dr. Milczuk to check her airway. Iris’ tracheal stenosis was caused because her left pulmonary artery was wrapped around her trachea causing a malformation and extreme narrowing. During her main surgery Dr. Rutter (Cincinnati Children’s Hospital) cut her trachea in half horizontally and then made a vertical slit along the front side of one half and the back side of the other half and slid the two together. So her trachea is now shorter but wider than it originally was. It’s still much narrower than a normal trachea but Iris has something to work with … and she’s making the most of it. I was excited today because I thought if the bronchoscopy went well she wouldn’t need another one for 6 months. It’s hard to imagine what it would be like to have that long of a break but I wanted it … for Iris.

It went well. Fantastically well. If Iris remains stable this winter (fingers and toes crossed), she will see Dr. Milczuk in clinic next spring. No procedure necessary! Her airway is clear and there hasn’t been any narrowing since it was reconstructed. WOW!

So today Iris took another wagon ride … all the way down to the front doors of the hospital. I’m not sure if it’s her last wagon ride at Doernbecher because she still needs additional procedures related to her arteries, and I’m not sure if today’s wagon ride felt differently to Iris … but it did to her mommy.

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The Red Thread

16 Monday Sep 2013

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“An invisible red thread connects those destined to meet, regardless of time, place, or circumstances. The thread may stretch or tangle, but never break.” – Ancient Chinese Proverb

As I sit in Iris’ room at Doernbecher tonight, I am reminded of this proverb. An invisible red thread connected me to both of my daughters and them to each other. At the right time. At the right place. Life has presented challenges and tested every part of my core, but I honestly cannot imagine my life any other way. It is exactly how it was meant to be and, even on challenging days, I feel grateful.

So today’s news:

The balloon dilation went well. The complicated part is that the vessels coming off of Iris’ left pulmonary artery are severely hypoplastic and very close together. It makes ballooning them tricky because ballooning one might compress the other, making it difficult to get the wire in it to perform the balloon dilation. Dr. Armsby placed wires in two of the vessels before she ballooned them and was, therefore, able to balloon them both … but they’re still tiny and Iris will need future procedures. It’s the nature of her unique heart. Its imperfections are what makes it, and her, so strong and beautiful. At this point, Dr. Armsby plans to balloon the vessels once a year, and in 2-3 years they will be a sufficient size to have stents put in. The stents will be replaced every few years until Iris is fully grown. Nothing is certain, but this our plan as of today.

Here is a photo of Iris’ pulmonary arteries (the lines going up the left side of the photo are her sternal wires). You can see the line coming up from the bottom that the catheter followed to the larger opening. That opening is her main pulmonary artery, and the left and right pulmonary arteries branch off from it. The right pulmonary artery (shown left in the photo) is normal with great blood flow. It extends out and then branches off. The left pulmonary artery doesn’t extend out in the same way. Since it was wrapped around her trachea, part of it was removed … so those teeny tiny branches come off almost immediately, which is problematic:

Irisballoondilation

So today was a good day in the sense that we have a better understanding of our path. There will be plenty of doctors’ appointments and more procedures in her future, but Iris’ health is 180 degrees from where it was a few months ago … which takes me back to the red thread.

A red thread connected me to my daughters … but it also connected Dr. Langley, Dr. Rutter, Dr. Armsby, and Dr. Milczuk to us. At the right time. At the right place.

Here is Iris sleeping peacefully tonight in her hospital bed. I truly have more blessings than I can count:

IrissleepingDCH