Love is (a) Patient: Part 1

Here is part one  of the two part summary of our daughter’s  major surgery in Philadelphia at Shriner’s Hospital for Children. I decided to be thorough on certain details of this trip since I know of a few people going in for the same (or  a similar) surgery,  and I wish I had known a bit more of the overall process. So since I don’t have the time to sit down and pour my heart out in one blog post, and my kid is finally sleeping,  here is part one.

Night before surgery.

Watching Daddy play Mario. (This is how she likes to stand, wedged between the coffee table and couch.)

Laelia rubbing my back while playing peek-a-boo.

We  cuddled and stayed up late  the night before our trip  for those extra hours of family time. We also took that time to once again talk about where we were going and what we were doing. Yet despite that, Laelia happily announced that we were going to Disneyland while she helped me put her clothes in the suitcase. When I corrected her and talked about surgery, she corrected  me and says, “Daddy told me.” Well Daddy got in trouble. Then Daddy spent the rest of the time explaining that we weren’t going to Disneyland until much, much later. “Tomorrow?” Laelia asked. *sigh*

Laelia was a good little girl. She hand-picked one stuffed animal to come with us, her doggie, then comforted her doggie on its upcoming surgery. “There there, doggie. It be okay.” She was a good flyer. During the entire day of flying she only had one melt down. When we got on our second flight after a snow-covered Denver connection, she haggled with us, “Last plane today, okay?” Since it was, we agreed to her demands and the melt down ended. We also found out on our lay over that Ronald McDonald house near Shriners would take us for the night, and possibly for the week.

Then Mama had her own melt down after arriving in Philly when we realized we had missed several calls from the hospital. They were all informing us that our surgery time had changed from 6:30 to 10:00 am. Since I had been told 6:30 am, and that had been the plan for months, and I’m not good with last second changes, and it was  a different story than I’d heard from the  surgeon’s scheduling person, and and and… let’s just say  I wasn’t sure it was correct. And of course even though the PACU was suppose to close at 5:30, it was 5:12 and no one was there. I started to  cry, standing there  in the middle of the airport, calling people at Shriners. I reached a lone admissions desk person who, after apologizing for laughing when she realized I was freaking out,  convinced me not to show up at 6:30 just to wait for hours with a hungry toddler.  She wasn’t sure on the time, but she was sure the PACU people would have told me the correct time.  But  I just didn’t want to risk all the time and effort and set up it takes to  fly across the country with your daughter  then miss  a major, important surgery just because I wasn’t willing to wait a few extra hours in a waiting room. I didn’t know what to do.

Thankfully we  arrived at Ronald McDonald house on Erie street to a welcoming, calming environment. Instead of doing orientation they suggested we eat dinner first. In the dinning room a soccer team of girls put on a puppet show and dressed  up my daughter and another adorable girl, Sabina, like princesses and sang songs. Sabina’s dad, Michael, started talking to us about what our daughters would be doing tomorrow. It turned out he had an early appointment, 6:30 am, with Dr. Van Bosse, our doctor! Well since Dr. vB can’t be at two places at once, I was finally at peace that our appointment was indeed at 10:00 and we’d all get to sleep in. He was at the right place at the right time to calm all my fears.

I guess I should explain a bit about the Ronald McDonald house. They don’t take reservations, so the only stressful thing about them is  not getting to know where you’ll be staying until the day of your trip. That said, Ronald McDonald house is like Grandma’s: there is plenty of food, lots of toys, friendly people and you can go through the cupboards and pantries like you own the place. And you’re expected to clean up  after yourself before you leave! It’s also a place to can be alone, or you can meet other people in your situation. It is your home away from home, and a lifeline to a lot of families who can’t be with their hospitalized children without paying through the nose for a hotel otherwise.


We had a large room with two beds. But Laelia, in usual Laelia fashion, was being a big turkey and refusing to sleep. So we locked her in the closet! Haha, I’m not kidding! We put a blanket bed in there and when she immediately sat up and worked the door open, we put her back and closed the door on her!   So she had a tiny little bedroom, Harry Potter style! :) I felt bad about it  so as soon as she quieted down (about ten minutes) I opened the door. Then Charley took this picture of her sound asleep. So cute!   That dirty bottom was from scooting around in the airport on those dirty floors. I’m thankful she started the hard day ahead well rested. She woke up cheerful and full of life. I started the long day ahead with dread.

It’s a funny thing. I would think I was handling everything fine and then I would throw up with nothing to blame it on except stress and worry. This happened twice–once  Thursday night and again Sunday night–and both times I was surprised by it. Since I mostly felt very peaceful, I mean for the circumstances. In fact,  I’ve felt more peace about this surgery than any of the other three, even though this  will be the  most major. Besides being terrible at internally handling these situations, I do handle them well outwardly. Then I throw up apparently. I truly believe I did better this time because of the number of people praying for us. Sure I was stressed and worried, but I didn’t have to deal with the depression or morbid thoughts that I have before. I felt lots of peace flowing my way. And it was something outside myself.  The other several differences between this surgery and the former ones were that I was more prepared for this one, I had more say, I had more questions answered by the doctor (who I have a crush on) and  I had more hope. And, people were sending us their love, positive thoughts and praying  lots and lots of prayers to God on our daughter’s behalf.

One stresser was transportation. The rental car companies at the airport wanted to charge us  $500 for those days we would be in Philly, for their smallest cars! Our budget was $200 total. We tried to do the whole thing with cabs, but we had to go between the hospital and RMD house too often. Then while looking up prices online I stumbled across something a whole lot cheaper, but I had accidentally found something in Philly but outside the airport.  But that place closed too early and we’d miss it. So Charley found another place and flat rates for cabs  online to get there.  So we ended up taking a cab  to  another rental place, then the rental car to Ronald McDonald house. It was a round-about way to do things, but  budget friendly! I suggest it for anyone  needing to have a substancial stay in Philly. We used Enterprise in Downtown.  (Tell the cab driver their address–36th S 19th Street–or it’s hard to find.) Cab there from airport: $26.  

Our hospital is surrounded by the ghetto. I’ve said this before, but I  was hyper aware of it having to make a lot of late-night drives through it. Plus having to deal with the non-stop sirens at night or crazy  drivers/pedestrians during the day… bleh. At least this time with Charley with us, we transversed those terrible, confusing signs and streets that make up north Philly, and actually found the Shriners entrance/parking lot this time around!

Shriners’ Hospital’s Waiting Room Vrrrrrroooooooom!

We arrived at Philadelphia at 10:00 am and were still waiting for surgery at 12:45 pm. So glad we didn’t show up at 6:00 am! Every time a person came to check Laelia’s measurements, blood pressure, temperature or simply to take out the trash in the room, Laelia freaked out. She was scared. The people at Shriners are nicer than any other hospital we’ve dealt with. They care. Period.  That’s the difference most of the parents I’ve  talked  with notice first. These people know how to distract a child, talk to  them and work quickly through their screams of protest. But despite this skill, Lali was still pretty freaked.  When we walked into the PACU and saw the nurse, the first thing Laelia did was cry and shake her head, “No no no no no!” The nurse put a hand on her and said, “I have a very important job for you to do, okay? Are you ready?” Laelia nodded quietly. Then the nurse showed her a wall of bears and asked her to pick out her special surgery friend. Laelia started to relax a little.

Finally they gave her something that left her inebriated. She went from completely rigid to totally relaxed. She kept sliding off my lap even! Then my drunken baby girl began to sing silly songs while slurring her words, and with that reddish hair  it really brought out the Irish in her. :) When the man in scrubs  came to pick her up and carry her into surgery, instead of freaking out, Laelia went complacently with him.  I watched them walk down the hall as her head swung limply, like a sack of potatoes, in time with his steps.

And she was gone.

My arms, that she’d been in since we walked into this scary place, were unnaturally empty. I was clutching her blanket  really hard to remedy that empty feeling. When we stepped into the elevator to head back to our room I caught a glimpse of myself on the elevator’s reflective metal wall and I looked like some melodramatic lifetime movie reject. I made a conscious effort to relax my body and facial features  to look, what Charley refers to as,  “not crazy.”   We went to the cafeteria first off and forced down some fried food that sat in our stomachs like rocks all day. Bad move. A nurse came in while we ate to let us know they got the epidural  and IV in (a potential issue with arthrogryposis patients). We thanked her for the  news, but it became harder to  swallow after that.  We called family, watched Man Men, hung out with Sabina and her daddy for a bit and paced. Well I paced, while Charley kept trying to grab me as my course sent me within a foot of him.

I called the PACU around 2:40 pm. They had just finished with her first leg and were just about to break her second leg. Waiting after that became harder. I paced some more. The last half hour was the worst. My stomach hurt, I felt sick and  every minute felt like it had been too long and something  had to  have gone  wrong. I was on the seventh floor in the  waiting room that had large windows looking out over the ghetto. I’m afraid of heights and was going slightly mad. My mind played this trick where I could imagine myself falling as the floor melted away, and then  for a second every so often it felt like it was actually  happening. I started to think about worst case scenarios. Just as I started to get really morbid and my stomach lurched,   just under five hours after handing my child to a stranger, the doctor we’d traveled across the country to see walked into the room.

The surgey was done and we could see her in about 20 minutes. The sites looked good, but  her right leg gave him a bit of trouble. She wasn’t as straight as we’d hoped, but this was definitely a great first step towards standing up straight. But because of her epidural, her recovery would be in the ICU until Thursday. And hopefully we weren’t too set on flying back Friday.

My skin was crawling because I wanted to see her so badly. A woman led us to Lali’s room at a pace much too slow for me. Laelia started crying once she saw us. I looked at her little face, so sad and  angry and  drugged, and my mommy instincts kicked in with all the comforting I had within me. I blotted at her sweaty face and told her it was all over. She always looks so little after surgery, so tiny. She was hooked up to so many different machines. Her breathing was labored and she sounded really congested because of the liquid in her lungs. She didn’t talk or smile–so unlike her. Then I looked behind me  to see my husband, my rock, completely lose it–big tears falling down his cheeks. He excused himself from the room and sobbed.

One Response to “Love is (a) Patient: Part 1”

  1. Robin Clark says:

    About Charlie sobbing, I so thoroughly understand, although we watched an older child as a teen after having half of his spine fused. If he had been Laelia’s age it would have been so much harder, especially if I knew she would have more surgeries.

    I will continue to keep you all in prayer and for Laelia to feel comfort as she heals and for God to surround you all in his neverending love.

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