We decided to use this online site to help keep everyone updated on Maddie's status here in St Luke's Medical Center in Manila. We ended up having so many text and email threads that we got pretty confused about who got what and when. Hopefully, this will help. For those of you who are just hearing about what happened to Maddie, here is a brief summary of events that led up to where we are now:
Maddie was rushed to the ER of St Luke's Medical Center in Makati (Manila) with a bad chest infection on the 31st December. We had just returned from a 3-day visit to the beach the day before which also happened to be her 11th birthday. We had noticed already then that she was starting to sound a little junky but we managed her secretions as per our normal regime of nebulizations, suctioning, and chest PT. However, her condition rapidly worsened and she ended up in the pediatric ICU with respiratory distress. Her chest X-ray showed she had pneumonia and subsequent blood tests showed she had many of the blood markers for sepsis. In just over 24 hours, she had to be intubated and put on a ventilator. She got worse and then stabilized. However, during this period they were struggling to wean her off the ventilator which was worrying the pulmonologist as the vent settings were high and had the potential to cause permanent damage to her lungs and heart. On Saturday night (Jan 5) into Sunday she rapidly went down hill with all the symptoms of ARDS (acute respiratory distress syndrome).
After consulting with the entire team treating her, it was agreed (albeit, a tough decision for us) to put her onto an ECMO device which is basically a heart-lung machine. Unfortunately, Maddie had to be transported to another hospital to have another more experienced team perform this procedure. This is where she is at present. She is on a partial bypass to allow her lungs and heart to recover while still maintaining everything else. Thankfully, they managed to hook her up onto this machine without having to open up her chest which was a possibility due to her very small veins. After a little over 36 hours on the ECMO, she remains stable but we are not seeing much significant improvement in her lungs as of yet which according to her doctors, is not unexpected. This, obviously is a little frustrating for us as we were hoping and praying for quicker improvement.
We expect to be on the bypass for a few days, but as Maddie’s response to everything so far has been unexpected we are not sure.
William and Emma are with my mom in Makati and are being well-looked after by everyone. They've been spending a lot of time with their cousins which is wonderful. Starting this week, we will try to keep them busy with piano, art, tennis, Tagalog lessons, and homework. We are all coping, hanging on and praying that our little warrior continues to fight! Thank you so much for all your prayers, best wishes, gifts, and support. We are completely overwhelmed by the outpouring of love and support from everyone across the globe. Maddie is one loved little girl - we are so blessed!
Please keep her and our family in your thoughts and prayers and we will keep you in the loop.
Stuart, Maddie and I finally made it back home last night. After a few minor hiccups along the way (flight delay, flight rerouting, and lost luggage!), we got back home to our house in Chapel Hill just before 1am. Unbelievable journey!
Maddie did extremely well on the flight and was all smiles throughout the trip. It was definitely a tearful homecoming with Beverly, Maddie’s CNA of 5 years and William, and a huge welcome home banner and posters from our neighborhood friends to greet us. Emma was fast asleep but opened her eyes briefly and smiled when I kissed her in bed.
And at the bus stop this morning, many of our friends and their children surprised and welcomed us back with mimosas and all!
It is truly great to be back home after almost two months and a most incredible journey with Maddie. I will definitely be writing about this!
Thank you again for being with us all throughout. Stuart and I are so lucky and blessed to be surrounded and loved by so many wonderful people in Manila, Chapel Hill, Brisbane and everywhere else in the world. We, honestly, could not have survived this journey without you.
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