Friday, August 30, 2013

2nd opinion for Dad

Since my initial update on my dad's diagnosis, he has been suffering an extreme sore throat, earache, and headaches. We were able to take our planned family trip to the beach, but he did not feel well nor did he have much energy. But, it was good family time of course.
After much research and speaking with physicians at the Mayo Clinic, and having an extended family friend of ours that works at John Hopkins speak with their head ENT and assured us that he knew William Carroll at UAB and anything he recommended he would agree with.
This past Tuesday-Thursday they had appointments planned for a 2nd opinion at Cancer Treatment Centers of America in Atlanta, GA. They took a chance with a facility that might be able to save his throat and/or voice. After meeting with the ENT on Wednesday, he did tell dad there was a chance he could save both functions. Of course, this option was appealing and wanted to dig deeper. Thursday afternoon, he had a scheduled outpatient lung biopsy of the suspicious spot on his lung. No surgery would be performed before knowing the cancer had not spread.
 And, this is my sister's update from that moment on..
Again, please forgive me for the mass email. It's so hard to keep everyone informed and we appreciate your prayers more than you will ever know.
Tuesday, August 13, 2013
It's been a long weekend since I updated everyone on Friday. When I wrote the last email he was getting his lung biopsy. Well, during the lung biopsy, the doctors discovered as they were inserting the tube into his airway, that his airway was very small - about the size of the cord on my computer mouse (can't really think of something else that size). They went ahead with the biopsy and got several good samples. I think we are still waiting on those results. The doctor still thinks they're just inflammation, though, because he coughs and aspirates so much while he's eating that it's probably due to that. Praise The Lord that it most likely hasn't spread! Anyway, because his airway was the smallest the doctors had ever seen, they were scared to remove the tube for fear that his airway would collapse. So they left the tube in and had to keep my dad sedated and on a ventilator until an ENT doctor could come the next day to do a tracheotomy. They had to do this because otherwise my dad would wake up from the biopsy anesthesia and try to cough or grab the tube and they couldn't take that chance. My sister and I went over there Friday afternoon to be with my mom during all of this unexpected surgery and because my dad is now in the ICU.
So fast forward to Saturday morning when the ENT arrives to do the tracheotomy (aka, a trach - a surgical procedure where the doctor creates a hole in the windpipe that goes through the front of the neck through the exterior and that becomes the new breathing passage instead of through the nose - it bypasses the tumors). 9 years ago my dad woke up from surgery with an unexpected tracheotomy. We didn't want that experience to happen again. The anesthesiologist woke my dad up from the sedation briefly to break the news to him and explain what they were about to do. He seemed to understand. The anesthesiologist told us that he was able to rationalize during that conversation but that he would not remember it after he was put to sleep again for the tracheotomy. The tracheotomy surgery went fine but was very difficult for the doctors because of the location of his tumors and how large they've become. After seeing the full extent of the tumors, it was apparent to the ENT doctor that he would not be able to save my dad's voice box as he originally thought. That was disheartening, but helped our decision process since both options/opinions (CTCA and UAB) were now the same. We want to have the surgery done in Birmingham because his doctor, Dr. Carroll, has a well developed relationship with my dad for the past 9 years and because we've learned that being so far away from family when you're in the hospital is very hard.
My dad had a lot of questions after the surgery was over and he finally woke up. From his perspective, they went to CTCA to get a second opinion and run some tests. Then they planned to go home and think over the options before making a decision about surgery. The original plan was to be at CTCA for 2 days and he was supposed to leave last Thursday. The lung biopsy was pushed to Friday and then the biopsy complications occurred and now he's in ICU with a trach. He wasn't in that condition coming in and he really didn't know what happened until he woke up in the middle of it all! He was going to need a trach and a feeding tube after the cancer removal surgery (total laryngectomy, remove and reconstruct throat, remove and reconstruct nasopharynx -- a 6-8 hr operation) anyway, but he thought he still had time before that all took place.
He's been recovering from the trach on Saturday and Sunday. My sister and I left Sunday. Then out of the blue his heart rate sped up to around 164bpm Sunday evening. He had an EKG and an echocardiogram which all came back normal. They chalked it up to stress (which is understandable!). He hasn't done that again since Sunday night. We had hoped to go home soon but he's got to have some kind of nutrition plan in place first. It's been since Thursday evening since he's eaten anything. Since then he's been on IV fluids only. Monday, they were going to do a test with a speech therapist to test his swallowing ability since the swelling around his trach had gone down by then. Well, he failed the swallowing test because of too much aspiration and entering the trach. So, that means he needs a feeding tube. As I'm writing this email, we are waiting for him to have the feeding tube put in.
So the plan from here is to have the feeding tube put in, stay the night to make sure all is well and come home Wednesday. My Aunt Gwen and I are going to drive over there tonight to drive my mom and dad (so my mom can attend to my dad) and then I'll drive our car back. They want to go straight to UAB and see Dr. Carroll. His nurse said to come when you can and he will work dad in. From all the complications with the biopsy and what the ENT visually saw when putting in the trach, his cancer is worse than we thought. It hasn't spread (that we know) but just in bad shape. He needs the removal surgery very soon.
We received a huge blessing when we called on Monday to talk to Dr. Carroll's nurse, Paula. Last week my parents had cancelled my dad's appointment with Dr. Carroll that was scheduled for Aug 14 and his surgery scheduled for Aug 20 because it was going to take CTCA a longer time than originally thought to put together their plan of action. When my mom called Paula on Monday to explain what happened over the weekend, Paula said she didn't cancel the appointment on the 14th or the surgery on the 20th. She said she just had a feeling that she didn't need to do that. Praise the Lord!  I don't think he could make it until the rescheduled surgery on Sept 10!
Here are our prayer needs now:
1. Please pray the feeding tube insertion goes well and that there are no more setbacks and that we can go home Wednesday morning
2. Pray that the travel from Newnan, GA is easy for my dad.
3. Pray that Dr. Carroll is able to still go through with his original plan for surgery/reconstruction
4. Mainly pray for my dad's spirits to go up. As you can imagine, with all of this unexpected news he is very sad and stressed. The events have come at him so much faster than expected.
5. Again, my prayer is still for total healing!
I appreciate all of you so much for all your prayers, calls, emails, texts and concerns. We are so blessed right now to have so many people praying for him. If you have a prayer list at your church or know some amazing prayer warriors out there, please feel free to pass along his name: Larry Moore.
Chrisynda Price

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