Monday, June 15, 2009

One Night in DuPont


The pediatric radiologist and staff at Bryn Mawr Hospital were rooting for her. We went each week for Olivia to have an ultrasound of her hips. Each week they would ask what the specialist said, and I would repeat his words -- always optimistic: She shouldn't need surgery as long as the bones keep moving toward the socket.

But the story starts earlier than this. Only 1 day old, Olivia was diagnosed with bilateral hip dysplasia. The pediatrician on-duty that morning in the hospital recognized that at least one hip was out of its socket, and that the other was probable but needed to be confirmed with an ultrasound. She stressed the importance of seeing a specialist quickly so that treatment could be started. And that's why on April 15th, my 29th birthday and Olivia's 5th day of life, our family drove to the Alfred I. DuPont Hospital for Children to see Dr. Bowen. He walked in with confidence and an aura of reassurance. When he spoke, his soft southern drawl made him seem grandfatherly. After reviewing the ultrasound from the day before, he confirmed what the first pediatrician saw -- both of Olivia's hips were completely out of the socket.

That visit was informational and hopeful. The dislocations had been caught very early, and the treatment is often successful at that age. We were at the hospital for over 2 hours -- getting Olivia fitted for her Pavlick harness. This would hold her legs in such a way that the femur would be slowly eased into the socket. Dr. Bowen, as with every doctor before him, emphasized that this is a completely treatable condition and Olivia would grow and develop normally [as long as we started with the harness].

She wore the harness 24 hours a day, 7 days a week. As Dr. Bowen said, "Taking it off would be like dislocating her hips all over again." We had weekly ultrasounds to note progress and follow-up visits with Dr. Bowen. Progress meant surgery would not be necessary. That is how we came to be known in the Radiology Dept. at Bryn Mawr Hospital. They were rooting for her.

But on Thursday, June 4th, our visit to DuPont was different. I knew it would be. Her ultrasounds were not showing progress. Before we left the house, I braced myself for the inevitable. And it came -- Dr. Bowen walked in the room and explained that the harness wasn't working, as sometimes happens. We needed to move forward. Olivia would need surgery - a tendotomy. And just like that, we were scheduled for surgery on Monday morning. We had only the weekend to prepare. After 7 weeks and 1 day in the harness, it came off. There was no need to wear it over the weekend as it was not effective in combating the condition. We had a harness-free Livie for 4 days. I have never been so excited to bathe a child. Frank appeared much stronger than I did.

At 5:50am on Monday, June 8th, we left our house. Olivia slept through the entire ride, check-in, wait, and pre-op procedures. And with the entire choir and music ministry at Our Mother of Good Council Church in Bryn Mawr praying for her, the doctors performed a tendotomy on Olivia's left hip. This means they made a tiny incision on the tendon in her left hip. This would lengthen it enough to gently ease the femur into the socket so that it could be casted in place. Then, it would grow and develop as it should, making any further treatments unnecessary. The procedure took approximately 1 hour... an hour that went by with the pace of a snail traveling through the mud.

When it was over, the doctor came out to update us on how it went. Everything went well. She was a champ. We could go into the Post Anesthesia Care Unit to see her. I don't know how anyone can do this multiple times. I know there are other families out there with conditions and diseases far worse than hers, and I pray for them. It was heartbreaking seeing her in the PACU. She was in a child-size stretcher/bed, covered in blankets and wires, looking ever so small. And she was wailing. Not just crying but screaming with her mouth wide open and her eyes tightly shut. The anesthesia made her hoarse, and I think that was the worst part. My heart ached to see her like this but I was so happy to know everything went well. I picked her up immediately just to hold her. I didn't care that she wasn't comforted; I just wanted to hug her. The weight of the cast caught me off-guard, but it felt so good to hear her wailing in my ear.

And this is how we came to be in the 3C South wing at DuPont. Amazingly, had Olivia been just a bit older, the surgery would have been done as an outpatient procedure. Her tinyness meant she was to be admitted. This inpatient unit was full of children of varying ages. Our initial roommate was an 8 year old girl. Her mother explained that they had been there since the Friday before and wouldn't be cleared to leave until at least Wednesday. Her daughter was experiencing problems with her pancreas. Her husband was a truckdriver and couldn't be there. She had another, 14 year old daughter had home. They switched rooms because her daughter was afraid she would wake Olivia, and when she left, she hugged me and wished me well, saying she would pray for our daughter. And all I could think in my head was that at least we knew what was wrong with our daughter. At least we were going home the next day.

There was a parent resource room just off the unit -- a pleasant respite from the sterileness of the rooms. Even though we kept the curtain pulled and moved the few chairs we were given to make our space more comfortable for the night, it was still, in the end, a hosptial room. Olivia was still wired to monitors and attached to an IV. But the resource room was softer, warmer without being overwhelming. There was free coffee/tea/hot chocolate as well as computers with internet access, thousands of books, TVs, tables and couches for lounging, and vending machines where everything was 50 cents. Rooms off the main area allowed parents to do laundry and take showers. The Ronald McDonald House provided 3 rooms for families to use at no cost. This allowed Frank to stay overnight; although, he later admitted, he couldn't sleep due to constant concern for Olivia and me. Several times that night we went to the room to get free gourmet coffee and chai tea. I became so excited about the chai tea that Frank bought me a box while grocery shopping the next day. It's amazing how such a place can be so comforting when in this situation. How this area can allow one to really breathe and carry on with life's everyday nuances. And ours is an easier plight than many others who were there. We were there for just one night. Olivia's condition is well on the road to recovery. She will be in the Spica cast for at least 8 weeks, and if all goes well, this will be just a chapter in her book. She will never remember the day and night that caused her parents so much duress. And really, that's just fine by me.

2 comments:

  1. A) I had no idea any of this was going on :(
    B) I didn't know you had a blog until I just found it on R's...so now I know.

    I will pray for Olivia, I just know everything will be fine!!!! :)

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  2. A) A Pavlick harness!
    B) I didn't know you were in the church choir--that's great! I've been looking around for a place to sing myself...
    Love to you, Frank, and Liv (which, by the way, I think is the cutest baby nickname I've ever heard)

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