What you are about to read is a day by day journal of what was the most terrifying and traumatic event of our lives. Rather than re-tell it, I think the blow-by-blow journal (done a few days later) tells the story best:
Patty was taking her brother Brooks, who had just been down here for a week spending time with us, to the airport for his flight home. While still in the driveway, Grace began to cry in her carseat. Because she had not yet burped from her most recent feeding Patty got her out of her carseat to see if she could burp her. Grace began to choke, spit up, and turned blue.
Patty and her brother rushed her into the house, and they were able to get her breathing again. Patty called our pediatrician, Dr. Dev, who asked her a number of questions and then recommended that Patty bring her in first thing in the morning. Grace was doing fine once again, looked good, and was happy.
Patty took Grace in to see Dr. Dev. Dr. Dev examined her and noticed that one side of her chest was higher than the other, and asked if Patty had noticed that before, which she had not. Figuring that something was wrong, Dr. Dev recommended that Patty take Grace into the hospital for a few tests.
Patty took Grace home, fed her, and then picked up Joel and they went to the hospital about noon. At the hospital they checked us in, and proceeded to do several tests on Grace. Jac and Jackie LaTour stop by around 5pm, and visit with us. Grace is sleeping soundly and looks beautiful and content.
Joel went home to get some dinner, rather than eat at the hospital. Being exhausted from the long day, he took an hour nap and got Taco Bell on the way back to the hospital. Jim Adkins from the church calls and Joel tells him "we are just here for some tests, it's no big deal."
At the hospital, Joel and his dad convinced Patty and Joel's mom to go home and get the things necessary for Patty to spend the night at the hospital, as well as for Patty to take a shower. While she was gone, Grace began to get very fussy. About 9 pm she seemed to have problems breathing and turned a little blue again. The nurse was concerned and without saying anything, she went and got Dr. Hicks.
Dr. Hicks came in and looked Grace over very carefully, asked a number of questions, and then went to look at her x-rays. When he returned he called Joel into the hallway, showed him the chest x-ray, and explained that Grace would need to go to CHOC (Children's Hospital of Orange County) that night.
When Patty and Joel's mom returned, they were informed of what was happening. It was a very difficult time as we waited for the transfer team to arrive to take us to CHOC, and when they did arrive, Grace was having another breathing episode. It was very frustrating for Joel because the team was there getting ready, and Grace seemed to be having her worst problems yet. Finally the team took her, and after trying to put her in a car seat they realized that this was not going to work. They sedated her and put her on the gurney.
Grace was now on her way to CHOC at about 1am, and Joel and Patty were to follow the ambulance over there.
1:30am - The family arrives at CHOC and is pretty much in shock. After waiting quite some time, Dr. Paul Lubinsky and a nurse come out to speak with Patty and Joel. They take them into a consultation room, and proceed to give them the news. Grace has a heart problem, and it is most likely a virus in her heart, which could possibly kill her, or an Anomolous Left Coronary Artery, which will require either Heart Surgery or a Transplant. Dr. Lubinsky uses the phrase "this is not a good report."
Dr. Lubinsky stresses that all of these things are potentially fatal, and that the surgery most likely necessary is very dangerous, and that Grace may not survive.
Patty and Joel are in a total state of shock, and take some time to pray together after the doctor and nurse leave. After praying together, Joel calls Gary Botka and gives him the news and asks him to call the Ingathering prayer chain. This is the first point at which word begins to get out about Grace's condition.
After talking with the Botkas, Joel calls his parents and gives them the news. Joel and his dad cry together on the phone. After getting in to see Grace, Patty gets settled in a chair by her bedside and Joel heads home for the night. It is about 3 am, and they will be meeting with the Cardiologist at 6am.
Joel returns home about 3:30am and calls Buck Buchanan, giving him the news. Buck assures him that they will be praying. After praying for a while, Joel goes to sleep about 4am, only to get up at 5am to get ready to go back to CHOC. Patty has gotten about one hour of sleep in the pediatric ICU department at Grace's bedside.
Joel arrives at the hospital and meets Patty at Grace's bedside. Grace has an IV and is on the respirator, but otherwise is ok. Dr. Burgess, the cardiologist, comes in and does several tests. The Echo-Cardiogram shows that Grace indeed has an Anomolous Left Coronary Artery and is going to require heart surgery. He does mention that her heart looks better this morning than it did when she came in. He suggests waiting until Sunday or Monday to allow her heart to continue to improve before attempting surgery.
Jim and Marleen Adkins arrive shortly after Joel and Patty get the news from Dr. Burgess. They pray together and spend some time talking. Joel again calls the Botkas and gives them the update, which is passed down the prayer chain. Jim Adkins fills in the church staff, and soon Buck Buchanan arrives. This begins a long steady stream of visitors throughout the day and evening.
Joel and Patty meet Dr. Gates, the Cardiovascular Surgeon who will be doing the surgery. They ask him several questions, and Buck Buchanan asks him several questions as well. Joel and Patty are very grateful for Buck's knowledge and concern, and are quite pleased with Dr. Gates who seems excellent. Dale and Becky Burke show up and take Joel and Patty out to breakfast.
Joel and Patty go home for another one hour nap and to get some lunch. On the way back to the hospital they are nearly in an accident, stopping in time only to witness the accident take place in the next lane. When they return Joel's parents are standing in the hallway and it is clear something is wrong. About 3pm the nurses who were attending to Grace turned her from her side to her back, something that had been done many times before since she was in. For some reason her heartrate suddenly dropped from the mid-100's to about 60. Joel's parents were instantly asked to leave and Grace's bed was surrounded by medical personnel. Joel & Patty pray together with Joel's parents and continue to wait. They later discover that this was a heart attack. The Dr. on call at that time stated that if Grace had been at home, she almost certainly would have died.
Joel's parents leave and Joel and Patty are alone in the PICU looking at Grace who is awaiting the ECMO team, who is going to put the ECMO in to provide more support for Grace's heart. The plan is to install ECMO, wait a few days, and then do the surgery. This is a low moment for Joel, and he is greatly encouraged by the words and scripture contained in the book "God's Promises in Time of Need" by Chuck Swindoll.
Joe and Molly Davis arrive, and Joel & Patty spend a little time with them and also check in to the Ronald McDonald house.
Now the number of visitors goes up exponentially. Soon we are completely filling the consultation room and overflowing into the hallway. Dr. Gates, the surgeon who will be performing the operation, informs us that there is a change in plans. Rather than do the ECMO tonight and then wait, they are going to move grace down to the Operating Room, and put the ECMO in there. If she responds well to it, they will go ahead and do the surgery. Dr. Gazaniga, the ECMO doctor, has offered to help him with Grace's surgery.
People continue to arrive, and the new plans are passed down the prayer chains. By the time Grace is moved to OR, there are over twenty people here.
The Radiology waiting room in St. Joeseph's Hospital becomes the location where we wait. People continue to arrive, and the Arthur's and Combs head out to get some food for Patty and I. Joel and his dad head home to feed the cat and pick up a few more supplies, as we will be here for much longer than originally anticipated. They return and soon the group is informed that Grace's surgery officially started at 10:25pm, which is good news because that means she responded properly to the ECMO machine.
Patty updates the prayer chain, and we continue to pray and fellowship with the group in the waiting room. About 1:25am a nurse stops in and lets us know that the main surgical procedures are done. She seems very impressed that we had both Dr. Gates and Dr. Gazaniga, as it's unusual for both of them to do surgery together.
After a time of prayer, many of the folks leave as there is a long day at church ahead, starting at 6am. Buck Buchanan again shows up around 2 am, and most of the folks leave about 2:30. Remaining are Buck, Alfie, Joel and Patty. Patty goes into the consultation room to get some sleep, and Buck, Alfie and Joel talk until 4 am. At 4, Joe Davis shows up and Dr. Gates comes in to tell us that the surgery went very well and was successful. After this good news Buck Buchanan and Alfie Mosse go home to get some sleep, and Joe waits with Joel and Patty until they can go in to see Grace.
At about 4:30 Joel and Patty finally get to see Grace. She is surrounded by more equipment than they've ever seen, she has tubes and wires coming out all directions, and she is so sedated she is immobile and unable to respond to anything, but Joel and Patty are just grateful she is alive. At about 5am, they get back to the Ronald McDonald house and go to sleep. Patty and Joel have each had 3 hours of sleep since this ordeal began, and now they sleep until 11am and 1pm respectively.