Tag Archives: Doernbecher

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

Home Stretch

30 Friday Aug 2013

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Iris is entering the home stretch.

She had her echocardiogram yesterday and an appointment with Dr. Armsby. Her echo looked good. Dr. Armsby was pleased that Iris’ left lung is getting sufficient blood flow. That was a concern since her left pulmonary artery is so tiny. I was able to see the right pulmonary artery on the echo for comparison. The size difference is dramatic.

So the next step will be a procedure in the cath lab on September 16. Aside from follow-up appointments, this will be Iris’ last procedure. Dr. Armsby will perform a balloon dilation to increase the blood flow through Iris’ left pulmonary artery. The success of the balloon dilation will determine whether or not Iris will need a stent. Fingers crossed.

It’s hard to believe we just reached the 2 month anniversary of Iris’ open heart surgery. The only sign that she’s been through a major surgery is her beautiful scar. She’s healthy and strong, and breathing far better than she was prior to her surgery. In fact, earlier this week we were walking the dog and Iris started running. Really running. I knew she’d stop herself when she tired, so I let her go. She didn’t run far, but what mattered was that when she stopped she wasn’t panting. Solana watched in amazement and said to me, “Iris ran. She couldn’t do that before!” Running took too much out of Iris so she avoided it, along with other physical activities. She still can’t keep up with other kids .. but considering her remarkable recovery from having her heart repaired and her airway reconstructed .. it won’t be long before she’s keeping up. And passing by.

Here’s a picture of Iris and Barbie hanging out waiting for Dr. Armsby:
Irisdocappt

And here’s a picture of Iris and Solana on an airplane later last night. With Iris’ continued good health, I finally felt comfortable venturing beyond arms-length from the good doctors at Doernbecher, so we hopped a flight to San Francisco for the holiday weekend …
IrisSolanaSF

We wish everyone a wonderful Labor Day weekend.

Hugs to all from the Hickey girls!

Back On Track

20 Tuesday Aug 2013

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Dear pneumonia … you didn’t stand a chance.

It lingered, but is now completely out of Iris’ system and she picked up right where she left off. She and Solana have been making the most of these gorgeous summer days.

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And … Iris got her ears pierced.

I took her to Claire’s and, after looking over the available earrings, she decided on the “rainbow daisies” … if you know me, you can imagine my delight. As Iris was sitting on my lap waiting to get her ears pierced, a large family gathered to watch. The grandma was outspoken (understatement) and decided to take bets, with her family and other customers, on whether or not Iris would cry. Normally I would have found her behavior rude, but instead I started giggling. And when the rough-around-the-edges grandma proclaimed loudly, “I betcha five bucks that little girl is gonna cry!” … I couldn’t contain my laughter. Really grandma?

I should have placed a wager but my reward was watching the astonished looks on their faces as Iris talked and smiled through both ear piercings. No tears. No flinching. Guess grandma failed to see the beautiful, and clearly visible, scar on Iris’ chest.

Mission accomplished Iris. She’s part super hero … squashing challenges and naysayers with her smile and charm.

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Iris’ medical journey continues next week with an ultrasound followed by a visit with Dr. Armsby. Her balloon dilation (and possible stent) procedure has been scheduled for September 16 and she’ll spend one night at Doernbecher so they can monitor her.

We continue to move forward. Our new normal is working out just fine … I honestly could not feel happier or more blessed.

Hugs to everyone.

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4 Weeks

26 Friday Jul 2013

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It’s hard to believe that 4 weeks ago I was sitting with Iris in ICU as she was waking from surgery.

The day began with a tram ride up to Doernbecher at 5:30am. There were only 4 other people on the tram with us that morning and they all worked at Doernbecher/OHSU. They looked adoringly at Iris, with no clue that this little girl was on her way up the hill to have open heart surgery.

We checked in at the lobby, received our bracelets and proceeded up to the surgery waiting area. It was empty and quiet. So quiet. Iris was called back to the surgery prep area within minutes and that began a procession of nurses and doctors stopping by to get her ready. Dr. Langley and Dr. Rutter stopped by to say hello and address last minute questions. And then Dr. Kelly Ryan came by. Kelly is an anesthesiologist and she comes highly recommended. She explained that her primary job is to ensure that Iris is comfortable and safe throughout surgery. Kelly discussed the medications she’d be using and gave me a good overview of how they impact the body. She then asked if I had any questions or concerns. I responded, “just keep her comfortable and safe.” That’s all I wanted.

When your child is taken back to surgery at Doernbecher, you are allowed to walk with them to the “orange line.” Kelly walked with us. I remember approaching that line and feeling my knees buckle beneath me. It is a moment, as a parent, of complete vulnerability. Handing your child, and your trust, over to another person. I gave Iris a hug and told her that I love her. I then glanced up at Kelly and, without saying a word, she looked into my eyes and ever so slightly nodded her head. A gesture that was, at once, both subtle and powerful. All I could see was compassion and confidence. Kelly knew exactly what I was feeling, and the look in her eyes provided me with more comfort than any words could.

I turned to walk away. The walk back seemed like a mile. Tears streaming down my cheeks. Legs failing me. It was the complete loss of control over my emotions. I walked into the waiting room sobbing loudly. My sister and niece immediately embraced me and we started walking down the hall so I could catch my breath.

When I finally did, I pictured Kelly Ryan’s face. And I knew … Iris would be comfortable. And safe.

I’m thankful every day for Iris’ amazing team: Dr. Stephen Langley, Dr. Micheal Rutter, Dr. Henry Milczuk, Dr. Laurie Armsby, and Dr. Kelly Ryan.

Iris continues to improve. She saw Dr. Armsby this week and received another good report. Her chest x-ray looks great. Her ultrasound is scheduled for the end of August and her next procedure, to potentially put a stent in her pulmonary artery, will be in a few months.

Until then .. we’re enjoying the sunshine, and counting our blessings at every opportunity.

This is Iris today .. showing me her “heart”:

Irisheart1

Breathing Clearly

17 Wednesday Jul 2013

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We were back up at Doernbecher today for Iris’ follow up bronchoscopy with Dr. Milczuk. Her procedure was fairly quick (good sign) and Dr. Milczuk was smiling as he approached me afterward (very good sign). He showed me images of her airway on his laptop and I wish I had the photos to post because the difference in the before and after images is literally night vs. day.

Dr. Milczuk is pleased with her progress so Iris won’t need another bronchoscopy until September.

When we started this journey, Iris needed repairs for; pulmonary artery sling, a large ASD (atrial septal defect), and tracheal stenosis. Her ASD is repaired. Her tracheal stenosis is repaired. Her pulmonary artery sling is repaired. The only step remaining is to put a stent in her pulmonary artery because it’s tiny. Too tiny. So once she’s healed, she will have a stent put in. We don’t know the timing yet but should find out during our appointment with Dr. Armsby next week.

Iris was so hungry before her bronchoscopy today. The procedure was late morning and she wasn’t allowed to eat since last night. All she wanted was an egg. Some kids crave candy, Iris craves hard boiled eggs. Fortunately I found one at the Starbucks in the lobby and had it waiting for her when she woke up .. which helped her get through the anesthesia fog. My remarkable little warrior and her simple pleasures.

We’re very thankful for this good day.

Here is Iris before her procedure:

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Here We Go

21 Friday Jun 2013

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Here we go.

Iris’ surgery is scheduled for next week at Doernbecher.  Dr. Rutter is coming out from Cincinnati to perform her airway reconstruction, along with Dr. Milczuk, and Dr. Langley will repair her heart.  They estimate she will be in the hospital 10 days to two weeks and then we’ll return home for the remainder of her recovery.

So many thoughts and emotions run through me each day, but mostly I find myself feeling thankful.  Thankful to Iris’ biological parents.  Thankful for the day Iris came into our lives.  Thankful for the abundant joy my daughters fill my heart with.  Thankful for Solana’s compassion throughout this journey.  Thankful for the wonderful doctors that care for Iris.  Thankful for the support of family and friends.  Thankful for the comfort I have found in my faith.

So we enter the biggest challenge of our lives … and I am reminded;  kites rise highest against the wind.

Soar my little warrior … soar.

Thank you for your continued prayers.

A Very Good Day

24 Friday May 2013

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Remember Iris’ cardiologist, Dr. Armsby, telling me that there will be some bad days … but there will be good days too?  Wednesday was a very good day.

I received a call from Dr. Milczuk, Iris’ otolaryngologist.  Her team of doctors had met once more to discuss her case and they felt that we had two options for her surgery:  1) We could travel to Cincinnati.  Dr. Michael Rutter at Cincinnati Children’s Hospital has more experience with Iris’ type of airway reconstruction than anyone else in the U.S.  So her heart repair and airway reconstruction would happen there.  Cincinnati Children’s is a wonderful hospital and she would be in very good hands …. Or, 2) Dr. Rutter offered to come to Doernbecher  … Dr. Rutter offered to come to Doernbecher!

I managed to ask questions regarding the benefits of each option … but honestly, one of my prayers had been answered.  We will be at home and Iris will have her surgery in a hospital that is familiar to us.  Dr. Langley will repair her heart and Dr. Rutter will perform her airway reconstruction.

The surgery hasn’t changed, but some of the outside stresses have been eliminated (travel, housing, etc).  I would’ve traveled anywhere to give my daughter the best possible care … as it turns out, thanks to the willingness of Dr. Rutter, that place is a tram ride away.

We don’t know the timing yet.  Dr. Rutter’s schedule will dictate that.  But for now, we’re thankful for this very good day!

Here’s a picture of Iris taken a few days ago in Dr. Armsby’s office, and another one after her bronchoscopy a few weeks ago.  Doernbecher represents a wide range of things to me … but to Iris, it is a place with games, fish, popsicles and really nice doctors.  As it should be.

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Modern Medicine

20 Monday May 2013

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This week I visited with Dr. Stephen Langley, Doernbecher’s chief of pediatric cardiothoracic surgery.  He’s a guy that you pray you never need, but are grateful for if you ever do.  Dr. Langley showed me (and my wonderful sister who joined me for the appointment) the 3D CT images of Iris’ heart.  The images made our jaws drop.  Not because of her heart defect, but because the images were so detailed … they honestly didn’t look real.  Modern medicine is amazing!  I’ve seen images of pulmonary artery sling online and in medical books, but looking at my daughter’s heart while Dr. Langley described the repair was incredibly helpful.  I feel like I have a solid understanding of her heart condition and the necessary repair.

Her trachea is more complicated.  Here is a photo that shows her trachea coming down and then it branches into two bronchi.  The left bronchus (shown on the right) is significantly narrowed … and that’s an understatement.

Iristrachea

This is the tricky part.  There are only a handful of specialists experienced with this type of airway reconstruction.  But the team of doctors looking after Iris has great connections throughout the U.S. and beyond and I’m confident they will direct us to the surgeons that are the best fit for Iris.

Iris’ team includes Dr. Langley (who, interestingly, is involved with a non-profit that provides cardiac care to orphans in China .. Little Hearts Medical), Dr. Henry Milczuk (Iris’ otolaryngologist) and Dr. Laurie Armsby (Iris’ cardiologist .. she’s also involved with Little Hearts).  Words cannot describe how grateful I am to have such a remarkable team of doctors looking after my daughter.  They are reviewing her case again on Wednesday and hopefully I’ll have a better sense of direction at that time.

Thank you for your continued prayers and kind messages.  It means the world to us.

Our Journey

12 Sunday May 2013

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When I was matched with my daughter, Iris, I received medical reports indicating she had a heart condition known as pulmonary artery sling.  In the few days that I had to review her limited medical information and make a decision, I spoke to multiple doctors at Doernbecher Children’s Hospital.  I feel blessed that they were knowledgeable of her condition and able to give me the necessary assurance to proceed with her adoption.  It was a serious, but repairable, condition.  Of course, as a mom, in the back of my mind I was hoping that some information got lost in translation … that when I finally brought her home, she’d be evaluated and I’d find out it wasn’t as serious as originally thought.

Unfortunately … her diagnosis was confirmed the week we arrived back in the U.S.  An ultrasound showed that she did, in fact, have pulmonary artery sling … a serious heart defect that can only be repaired via open-heart surgery.

My heart sank.

I knew, going in, that it was a possibility … but as I sat in the cardiologist’s office, with little Iris on my lap, reality set in.  And the tears flowed.

Days passed and I was able to wrap my arms around our situation and Iris’ path to health.  I found comfort in knowing that a brilliant surgeon at Doernbecher had experience with her condition and would be the one to operate on her.

In the meantime, Iris has been getting stronger each day, but physically she can’t do what other children her age can do.  She has labored breathing on a good day and when she exerts herself, it worsens to the point where she is too tired to keep up.  She stops herself.  It worries me ….

Our next step was to get a CT scan, and a bronchoscopy to determine if there is any damage to her trachea.  Those tests were performed a little over a week ago and the results were such that her doctors wanted to review her condition during their weekly conference in order to receive as much input on her case as possible.

That conference was yesterday.  Iris’ full diagnosis is: Pulmonary Artery Sling with Tracheal Stenosis.  Two serious conditions affecting her heart and airway .. each require major surgery.  While there is a surgeon at Doernbecher that can perform the operation for the pulmonary sling … there is not a surgeon with experience in this location of tracheal stenosis.  She will most likely undergo one surgery, repairing both conditions …. but her operation will occur at another hospital.  We don’t know where yet, but the search has already begun and Doernbecher will remain by our sides through this.  They are as determined as I am to find the best possible surgeons for Iris.

Yesterday the tears flowed again.  Overflowed.  But as Iris’ cardiologist, Dr. Laurie Armsby, so gently said to me; “This journey will be an emotional roller coaster and there will be some bad days.  Today is one of them.  But there will be good days too.”  I believe that.  Completely.