It is much easier to keep everyone updated in real time on Facebook than it is on my blog, even though I prefer the "coziness" of the blog (can anything in cyberspace really be cozy?). So in case you are not on facebook (or you want a more detailed readout on our trip), I just wanted to post a quick update here to let you know that everything last week in Philadelphia went so very smoothly. I am praising God for safe travels, for praying friends and family members, for comfort and calmness for Lilly despite the unpleasantness of some of our days while we were there, for fabulous accommodations at the Ronald McDonald House within walking distance of CHOP, and for some time with Grammy, Pop Pop, and Aunt Judi.
Here's how the week went (not such a short summary):
Lilly and I flew up on Wednesday, arriving in Philadelphia at 5:30pm Wednesday. My task once we got the rental car and got checked in at the Ronald McDonald House was to keep Lilly up late, wake her early Thursday morning, and deprive her of food and water for 8 hours prior to our show time of 11:30 am. I had been quite nervous about this task, until we got checked in at the house and I saw what it had to offer.
Let me tell you about it. The Ronald McDonald House is a charity that opens rooms to out-of-town families receiving medical care at area hospitals. The house in Philly (the first one to exist, I believe) has over 100 rooms. They are typically full, but they squeezed us into a room with one queen bed and a bathroom in the hall. We put an air mattress on the floor for Lilly and it was perfect. They provide lodging, volunteer-prepared dinners each night, free access to the pantry and shared items in the fridge and freezer, play rooms, books, toys, DVDs, a teen room with game tables and video games, computer rooms, outdoor playground, volunteers come in to entertain and play with the kids...absolutely amazing. I wanted to cry with relief during our tour as my anxieties about entertaining LIlly for all those hours melted away. All for only $15 a night per family. Until having the need for a facility like this, I could never have truly understood how wonderful it is. And Lilly and I technically really didn't "need" this facility for just a quick 3-night stay. We could have made do in a regular hotel room somewhere (I had used about 80% of my small suitcase space for books, toys, puzzles, playdough, and games), we could have eaten out, we could have used our rental car to get to CHOP rather than walking, and we could have afforded to pay more for a few nights. But how convenient, how nice it was to have all they offered at our disposal.
And we met some amazing families. Families from England who have been living there since January and will be there until July because of the extensive cancer treatments their children are undergoing. Families from South America. Families from New York staying for a week. Each family with its own story, its own reason for being in town, its own disease or malady or deformity or trauma and the associated anxiety, heartache, and stress. So how wonderful it is what the Ronald McDonald House was providing. I can't say enough good things, and I am so relieved to know it's there for our future visits. There are no Air Force bases in Philly, so the likelihood of us ever living close to where LIlly where receive her medical care over her growing hears is pretty much nil. We'll be back.
Enough about that...back to Lilly. So we successfully made it through our morning of fasting, and showed up for her pulmonary function testing on Thursday around 11:30am. By 1pm, she was receiving her dose of chloralhydrate to help her go to sleep for the test. They allowed me to administer it orally via syringe and she only fought it a little bit (they warned me it would taste nasty) and neither of us were wearing any of it when she had finished taking it. YES! About 10 minutes later, after some crying and whimpering as I rocked her in my arms, she was out cold. They transferred her onto a little bed inside a glass chamber, got a mask over her face, got a vest around her chest, and began the test. The test itself is amazing...it involved measuring her lung capacity, air flow, and a host of other factors by blowing air into her lungs, and taking measurements as she exhaled. Sometimes they would apply pressure (the techincal term, really, for that was to "hug" her) to force air out to measure other things. I won't go into all the medical jargon. But after the 45-50 minute test was concluded and Lilly was back in my arms to snooze for a bit longer until the meds wore off, the pulmonologist went over the results with me. The bottom line: she has severe restrictive lung disease, with only 30-40 percent of the lung capacity and air flow that would normally be expected for a child her age and size. Miraculously, she compensates for that by breathing more rapidly than most people and stays fully oxygenated. These bodies God created surely are amazing.
Lilly slept in my arms for another 40 minutes or so, and just as I was going to lay her down so I could use my hands, she began to be rudely awakened by some, ahem, gastro-intestinal issues that were the result of air being forced not only into her lungs, but also somewhat into her stomach and gut. She began to awaken, and drank some water, which satisfied the nurse who then allowed us to get dressed and head back to the room. For the rest of the afternoon and evening, Lilly was sort of like a hyperactive but drunken 4-year-old, wanting to be down and walking around, but too wobbly to do so safely. Her words were slurring and she was saying funny things. She kept me on my toes, as I had to prevent her from hurting herself as she continually fell over or bumped into things. By the time we went to bed that evening--after a snack, some playtime, some dinner, more playtime, and a bath--she was pretty much back to herself, just in time to face more in the morning.
Friday morning, we headed straight to the hospital after awakening, which made the morning fast a bit quicker and easier. After a little confusion over where exactly we were to be checking in for the day, we got checked in and gowned up and ready for anaesthesia. Lilly was acting much more anxious on this morning, not wanting to remove her coat (even though it was hot in the hospital) and sort of huddling in my lap, not wanting to get down and play as she normally does. I was expecting lots of wailing when it came time to get vital signs and height and weight again, but God gave her a calm despite her anxiety and the wailing never came. In fact, this was the most cooperative I have ever seen her in a medical setting. She held out her arm for the blood pressure cuff, held out her finger for the pulse ox monitor, willingly stood on the scale for weight...way to go Lilly! The nurse who checked us in doted on her, gave her birthday presents (a stuffed lion that she fitted with some socks since Lilly was keeping her socks on too), stickers, bubbles, etc. Even though Lilly did not show her appreciation so exuberantly, I could tell she was enjoying the attention and the gifts. The lion proved to be a useful therapy tool as the lion told Lilly that he was a little bit scared Lilly (in her Chinglish): "I little pa (scared), too"
Finally the time came to get her into the anaethesia room where the anaesthesiologist had me hold in in a bear hug while he placed the mask over her nose and mouth. She was not happy about the mask, didn't like the "flavor", and cried a little, but after just a few minutes she had given up the fight and was soundly asleep in my arms. He took her from me, laid her on the stretcher and excused me so they could get her intubated and into the MRI room. It was so hard to walk away from that room with her on the table...but I did. And went out into the cold to find a Starbucks without a line a mile long (difficult to find in the university district of Philly, but after a long cold walk I found one). Then back to the hospital for about a 3.5-hour wait. Time to pray, time to read a parenting book about connecting with your teen, time to talk to my friend Cindy and my Mom on the phone, time to pray some more, time to text Tom with updates, time to walk and stretch my legs, time to "people watch" the many families in the waiting area with children in surgery or under anaesthesia. Finally, they called my cell phone and told me to head back downstairs to radiology where they would be bringing her in shortly after her final CT scan.
They made me wait outside the room while they got her breathing tube out, but once they let me in, she was already beginning to wake up. She was clearly uncomfortable and unhappy, but allowed me to pick her up and cuddle her as she slowly gained awareness of her surroundings. She quietly snuggled in my lap while they finished her paperwork, got me a disc with a copy of all her scans on it, gave me instructions on followup care, and waited for her to drink something. They said she did great. We had to peel off all the stickers they had stuck on her and get the IV out, get the pulse ox monitor off, and remove all the other paraphernalia that was still attached here and there, but finally we were able to leave.
Because our walk from the Ronald McDonald House to the hospital in the morning had been so very frigid, I decided to catch the shuttle back to the house from the hospital and the timing worked out great to catch it after just a short wait. We arrived back at the house just in time for Grammy, Pop Pop, and Aunt Judi to arrive for a visit. We got Lilly some soup and hard-boiled eggs to break her fast, and then she got to open birthday presents which brightened up her day considerably! Then she got to enjoy the attentions of lots of loved ones in the play rooms, and I got to relax a little bit with a few extra adults around. They stayed for a quick bite of salad at dinner time at the house, then headed back up to meet Uncle Doug on his way in from Canada for the weekend.
Since our flight out was early Saturday morning, I did all of our checking out Friday night, which includes vacuuming and emptying the trash in the room. Got everything packed up and got us to bed after a quick bath for Lilly. The next morning was an early one as I was a little anxious about finding our way to the airport, stopping for gas so I wouldn't have to pay $13 for the measly 1 gallon of gas I had used this week, and getting checked into our flight.
All went smoothly...flights were mostly on time and Lilly napped a bit on each of the two flights.
SO good to see Tom, Jared, and Anna at the Ft. Walton Beach airport when we arrived! Lilly was funny--she had fallen asleep on the flight and awakened as I was carrying her (and my backpack and her back pack and her stroller) into the airport from the plane. She groggily said "where are we?" When I cheerily said "we're home!" she took one look at the airport and said "THIS no home!!" I guess you have to be more specific with this girl!
Anyway, now we wait to hear from the surgical team after than have sat down together to look at Lilly's results and make decisions about a timeline and an exact surgical course. I am eager to hear what they are recommending, and hoping that if they want to perform the surgery this summer, they can do it in mid to late June, since Jared and Anna go back to school on 5 August this year--yikes it is a short summer for them!!
That would give them time to hang out with cousins and grandparents, give LIlly time to recover, and still give us some time at home before school starts again.
Of course, if I have learned nothing else in the time since we began this adoption adventure, it is that waiting on God's timing is key to peace of mind. So whatever the timing looks like, I know our sovereign Lord has it in His good and capable hands. Stay tuned...I'll keep you posted.
For now, we are enjoying spring break with lots of household chores, yard work and a few fun things thrown in as well...
Thanks for reading!
