On June 8, Connor was admitted to the ICU with severe pneumonia and an x-ray revealing something on his lung. He has remained heavily sedated for a majority his stay because the infection is so massive and painful. He is still being pumped full of all kinds of potent meds, pain antibiotics, blood pressure as well as oxygen/breathing machine to fight the pneumonia. It is a miracle that he has made it this far, pushing through so many obstacles to one day gain his health back.
Every single dollar makes a difference, as the doctor's have done everything in their power to help Connor fight this off without regard to cost. While he does have insurance, we are expecting this bill to be pretty high. Funds will contribute to what is not covered, and will also help sustain Connor through recovery.
Connor has been in Transitional ICU for the past week and is making strides, eating on his own, off the vent breathign machien most of the day and slowly healing from the critical lung disease he had. He is still exhuasted and trying to get on a better sleep cycle and off most of his medication. Hes got an amazing view from his room. He's also had a couple of excursions outside and has been walking a little with PT. He has such a long ways to go but we are thankful that God has sustained him and is healing him.
We are constantly in awe of Connor's patience, humility, bravery, thankfulness and humor, seeing all of his true character beaming through in these crazy times. This week has been monumental! We celebrated his birthday on Saturday, then a few days later the breathing tube in his throat was removed which allowed him to speak for the first time in a month (after about 2 days the doctors performed a tracheotomy to continue monitored breathing during upcoming therapy/transitional ICU). Yesterday the doctors hoped to remove the ECMO machine, and although Connor held up alright without the hook up, they wanted to be entirely confident that it was time before taking it out. We're looking forward to this final procedure (we hope!) being sometime this weekend. So 12 surgeries later, and each day we are feeling filled with more optimism and rejuvinated by all the Connorisms we see now that he's off of the sedation meds and more alert. He has been having physical therapy sessions each day to move his muslces and joints-- sitting up, pedaling on a little bed-end bike, and standing for the first time (today!) He was finally able to type a few words on an iPad, and today enjoyed some nice Netflix distraction. He has people all around the world rooting for him, and has won over he hearts of the CPMC staff that have been working with him during his one month stay. The whole floor checks in on him on the regular, and he has allstar doctors that even come in on days off to see how he is doing. A photograph taken on a photowalk in SF to raise money for the cause was published with an article in the SF Chronicle just days later!
After a few days of being stable and alert, Connor went in for surgery #10 to check on the bleeding and try another type of packing for faster recovery. He has been lower on sedation meds, which is wonderful because he is awake but also hard because he feels more pain and aggitation. Connor is a stellar communicator with his hands, and has been comprehending and answering very specific questions which is a wonderful sign. He's also been getting a little more physical therapy time, trying to get his muscles working again after being stiff for so long. Tomorrow is his 23 birthday and we are thrilled to share a special day with him after all this mess. Please keep praying for our bud, for increased health and patience and peace of mind. It's almost been a month!!
Connor is returning to the operation table for what we pray is the last surgery of his incredible journey. He has been slowly stabilizing more and more, and with each day there is still a balance between good and bad news... we LOVE the good! Doctors have been weening him off of sedation meds and some of the other things he's been on -- we've been able to communicate throughout the weekend with an extra special day yesterday! Connor was able to sit up in the morning and apply pressure to his feet, he had been super responsive with small head nods, and even motioned last night that he wanted to write. His sense of humor is still shining through, ad it's amazing how fast he grasps what we are saying to him. After his surgery, he will still be on the crazy blood machine (ECMO) that functions as his lung, ad still the breathing machine. The journey now is towards battling the leftover pneumonia and resulting ARDS, regaining his lungs as functioning organs, and physical therapy to get his muscles strong after laying still for 3.5 weeks. Thanks for all the support and prayers -- keep it up!
Connor went in for another operation this morning, to replace the "packaging" inside his chest that keeps pressure on his organs to reduce blood loss and oozing. The surgery was a success and Connor has been stable for the rest of the afternoon, and hopefully into the weekend. Prayer requests remain around gaining strength to get his lungs working on their own! And a nice recovery weekend for him after sooo many surgeries.
After a few long days of extreme blood loss, as well as two surgeries on Sunday, Connor's blood loss is in control thanks to a switch of medication. His other stats remain stable, and the doctors have decreased his sedation for a few minutes to allow family to speak with Connor. Tonight he responded very well, by grasping hands and wiggling his toes, and blinking in response to conversations. This is a wonderful blessing because it shows that his brain is still highly functioning, even though his body has been through so much. He is still very weak (as anyone would be after 18 days, 7 surgeries and many blood transfusions), but we are hopeful. Prayers for his maintained stability, strengthening of his body and especially strengthining of his lungs, so he can begin to breathe on his own. Next steps are in a few days-- hopes to remove the ECMO machine that pulls blood in to oxygenate and pumps back into body, as well as to get Connor breathing more independently. HUGE STEPS so please keep praying!
MOST CRITICAL EXPENSES INCLUDE:
-28 days and counting in the ICU in San Francisco
-Connor's ten (!) surgeries around searching for and repairing internal bleeding
-8-hour long Thoracotomy Surgery, one of the most difficult surgical incisions, to remove sequestration and dead lung tissue
-Three weeks and counting on the ECMO machine, an expensive, invasive but life-saving machine to oxigenate blood (http://www.oregonlive.com/health/index.ssf/2011/10/for_failing_lungs_a_risky_trea.html)
-Countless blood transfusions, antibiotics, pain killers, blood pressure medicine, breathing machine needed during the duration of Connor's time in the ICU
Updates can be found here throughout this journey. More about Connor here www.facebook.com/connormcsheffrey and here http://instagram.com/connor/.
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