Update and Thank You From Sue 2/11/2025

To my family and friends,

It is now almost 3 months after surgery! I am extremely grateful and happy to say that the surgery was a huge success. Huge to me because I lived through it, and have my left lung working again! I am recovering from a surgery that had not been performed before in the states. I am not back to work yet. The healing has been going well, but it was an extensive surgery that really is taking a while to heal from completely.

I am also extremely grateful for a brother-in-law who did not stop trying to figure out how he could help me breathe again normally.

Not to mention the surgeons who were willing to do this surgery that had not been done before in the states, and the team of staff that cared for me while recovering!

Then there was my family and friends who were continually praying and asking their Bible studies/life groups and extended family and friends to pray! The emotional support and prayers were overwhelming. I definitely could not have gotten through wearing Oxygen on my back for the last year without those prayers and support! Thank you to those of you who brought food over to me and my family once I got home! A huge support for us because Davis and Elly (who were staying at my house), worked all day and I physically could not have done it. There was this GoFundMe set up… and family and friends who contributed financially to help out with medical bills… again something that I was completely overwhelmed by with the amount of generosity. There are too numerous of ways that we received help, and I thank you so much!

Though without all of the above occurring, I am most thankful that God was in control of all of this, and must have wanted it for me. I believe we as individuals want and pray and hope for so much… And we don’t always get what we want or pray for in life sometimes… this I know… so I am grateful that God got me through all of this and most definitely give him the honor and glory❤️

Again, thank you all so much for everything!

Sue❤️

Update 12/11/24

Sue had a Pulmonary Rehab consultation today! She had a great experience at the appointment and they are ready to support her and her efforts to get off of oxygen. She is continuing with the OT and PT but the pulmonary rehab will be more specifically geared toward strengthening her lungs. We are excited to see improvements over the coming weeks/months! Sue is driving now and is staying very active. Her head and hearing has been improving too which is a huge answer to prayer! Thank you for your continued prayers and generosity! ❤️

Update 12/5/24

Sue had her appointment with the ENT doctor and it was very encouraging. He did NOT find anything that would make him suspect her internal sutures are leaking spinal fluid and thinks the hearing issues and head pressure will resolve with time. Despite this, we are still keeping close tabs on everything they said to. She gets her pulmonary test results tomorrow at another appointment and had OT and PT appointments today. They’re keeping her busy! All good things that will continue to help her to the long term goal of normal breathing with no oxygen. Thank you all again and again!!

Update 12/1/24

Sue is still doing well at home, doing her exercises, eating well, and trying to be active every day. She has been experiencing some hearing issues she describes as muffled, feeling like she’s is in a tube, and some kind of reverberation sound. She also has some stiffness in her neck and pressure in her head. All of this has her more tired and anxious than usual but she has an appointment with an ENT (ears, nose, and throat) doctor tomorrow to address this. We are praying they are able to help provide an explanation and hopefully some relief for these symptoms. She also has an appointment with the pulmonologist tomorrow to do some breathing tests so we are hoping the results are encouraging for her! Thank you for the continued prayers, support, and love as well as the amazing food that has helped us be able to focus more on Sue and spending quality time with her. We (especially Sue) are BLOWN AWAY by the generosity and outpouring of love from all of you. THANK YOU!

Update 11/25/24

Things are going well at home for Sue! She is sitting up, standing, walking, and showering independently! She is still short of breath and on oxygen and we don’t know when this will change. She is meeting with the PA tomorrow morning so we’ll hopefully find out how her CT scan that was done last week looked and get a game plan for the next few weeks. Her physical therapist is also coming to her house tomorrow afternoon for her first appointment which is very convenient! We ask for prayers that the PT goes well and for her lung to continue to gain strength so she doesn’t have this shortness of breath and can get off the oxygen. Thank you all again and we hope these updates are helpful. ❤️

Update 11/22/24

Sue is now home!! Thank you to everyone who stopped by to sign her welcome home banner! She walked up the stairs to her house and wasn’t winded which is a very exciting improvement. She is eating well, continuing her breathing exercises, and very much her normal self. The doctors are having her continue to stay on oxygen for now as she regains strength and starts out-patient physical and occupational therapy. Please pray that these appointments help her to heal quickly and that they give her encouragement as she improves! We are so thankful that she is home and for everyone’s constant love and support! It is also extremely generous and beyond helpful that people have signed up for our Meal Train: https://www.mealtrain.com/trains/47mq15

Thank you thank you thank you!! ❤️

Update 11/18/24

Sue had her first occupational therapy and physical therapy appointments today and the neurosurgeon said she’s doing great. He wants a CT done on her lung this week to check things out. She can stand and walk (“like a drunkard”) on her own! She is still on the CPAP machine at certain times and continuing her breathing exercises to strengthen and retrain her lung. Since Sue is not in the ICU now, she can have visitors. If you are wanting to visit, please text Landon or Davis so we can coordinate a time. There’s a lot going on and we want to make sure Sue has time to rest and that visitors aren’t waiting while she’s having a therapy session. Thank you for understanding!

Update 11/17/24

Yesterday they removed Sue’s lumbar spinal drain and today they removed her chest tube! These are very big important steps to getting her back home. We were a little worried last night because she had a slight fever, but she has had no fever today and no neurological signs! She was transferred out of the ICU this evening into a normal hospital room and will most likely be able to come home in a few days once she gets physical therapy started! We are so excited that each step has gone well and that she is so strong. There is a long journey ahead but Sue is a fighter and has an army of support behind her. Thank you again for the love and prayers and check back for more updates. ♥

Update 11/15/24

Today Sue sat out of bed in a chair for 30 minutes and stood up as well. This process is really tiring so she has been sleeping a lot and is very sore. It is difficult for her to find a comfortable position in bed with her incision and the pain. She is still having to use the CPAP machine at night and periodically during the day as well as breathing exercises. She is eating and drinking well. The doctors have decided the lumbar drain will come out tomorrow but the drain in her chest will stay in a little longer. This will help them monitor if there is any leaking from the closure site inside her chest. With the lumbar drain out, they also have to watch for any neurological signs in case pressure builds in her spine. This next step brings new anxiety, so we ask that you pray for the removal to go smoothly, that she experiences no neurological issues, and there is no leaking from the closure site. Sue is still not up for texting/phone calls at this time. Thank you again for the love and support. ♥

Update 11/13/24

Big day over here! Lots of updates and more wins. Sue is now off of IV pain medication and is taking them orally. She got her Starbucks latte and then really wanted a McDonald’s kids cheeseburger. She ate the whole thing! She also got to brush her teeth, have her hair brushed, and the nurses helped her up to sit on the edge of her bed! She is still on the CPAP machine at night and 4 times a day as well as doing breathing exercises at least twice a day. The exercises make her cough and, unfortunately, coughing is painful. She has been sleeping a lot which is great and when she’s awake she’s much more herself. We are continuing to pray that she improves more every day, that her pain is minimal, and that her closure site continues to hold strong. We cannot say thank you enough and appreciate every single one of you reading, praying, donating, and supporting Sue and the family! ♥

Update 11/12/24

Sue will stay in the ICU a little longer than expected so that the staff can monitor her lumbar spinal drain for longer and make sure it is taken out at the right time. Her pain level was a 9/10 at one point today but once it was under control, they were able to decrease the number of pain meds she’s on while still keeping her reasonably comfortable, which is a move in the right direction. She has eaten small amounts of food, is drinking water, and is able to be in a more upright position. She even said she is craving a Starbucks latte! The surgeons are pleased with her condition and her nurses have been phenomenal and very responsive. We ask for continued prayers in regards to her pain and comfort levels and for the little wins to continue. Thank you! ♥

Update 11/11/24

Sue is out of surgery and it went well! The surgeons were able to remove the meningocele and feel that they achieved a secure closure. Her left lung has some scarring but it reinflated and is functioning! She is fully breathing on her own. She will be in the ICU for a few days while she has a lumbar drain in place. This will slowly drain spinal fluid to decrease pressure on the closure site. Once the drain is removed, she will stay in the hospital, but out of ICU, until they release her. We do not know when that will be but our hopes are high that it will be sooner than expected! Thank you everyone for the continued prayers and support! Please continue to pray that she has a smooth recovery and, since this is a very painful procedure, that she experiences as little pain and discomfort as possible. She is very strong and had an amazing surgical team!

Update 11/3/24:

We are now one week away from Sue's surgery date and she has completed her pre-operative testing (labs, EKG, etc) and appointment with the neurosurgeon. She is good to go for surgery and now we are planning for what she will need afterwards: care for her dog, food, people to stay with her, etc. We have set up a Meal Train for anyone who would like to participate: https://www.mealtrain.com/trains/47mq15 .

Many aspects of the surgery are still unknown. There is still a chance the surgeon could open her up, look at the situation, decide it is not worth the risk, and not perform the surgery. We ask that you pray for the surgeon to be able to perform the surgery and for her to experience as few complications and as little pain as possible. Thank you all again for your prayers and support! Check back here periodically as we will be regularly posting updates. ♥

Update 9/15/24:

Sue's surgery is scheduled for November 11, 2024 (3 days after she turns 60)! She met with the neurosurgeon again and this is the soonest date we could get due to the surgeon needing a full day to be available for the surgery since there is so much unknown: length of the surgery, what they will be able to accomplish, her recovery, etc.

The thoracic surgeon will have to resect at least 2 ribs (most likely more due to Sue's scoliosis) to create a window big enough for the neurologist to work. The neurosurgeon will do his best to detach the meningocele from the surrounding structures, drain it, and remove it, patching the hole that is left. He is not sure how well he will be able to patch it, if he gets that far. If he cannot patch it in the ideal way, it may slowly fill with fluid again. If this happens, the hope is that it fills so slowly (like it has for the last 30+ years) that it won't affect her breathing significantly for the remainder of her life. Other unknowns are how quickly her left lung will reinflate after surgery, how long she will be in the hospital post surgery (could be as little as 1 week but nothing is certain), and what her recovery will look like at home.

Thank you all for your continual prayers and support! We are so thankful to finally have a date on the calendar and are trusting that God has a plan!

Update 8/5/24:

Sue has met with the thoracic surgeon to go over more details of how the first surgery will be executed and now needs to meet with the neurologist again. After that they will be able to set a date for the procedure and it doesn't sound like it will be far out. We will continue to post updates here about surgery dates and costs as it is difficult for Sue to keep everyone updated.

Hello friends, family, and generous readers!

We are raising funds to help cover medical costs for Sue as she goes through an extremely serious and costly surgery to remove a meningocele (explained below) that has slowly grown over the last 30+ years and is now taking up her entire left lung. This surgery has never been done in the United States and the only successful attempt that we know of has been done in India. After she recovers from this procedure, she would then undergo a second surgery to correct her scoliosis that was caused by the meningocele.

Sue is currently on oxygen support at all times and it is becoming more difficult for her to continue with her active lifestyle. Sue has two sons, two daughter in laws, and tons of friends and family who love her dearly and need her to be around for years to come! Sue is such a vibrant lively person who can talk to anyone, loves the Lord, and doesn't think twice about going above and beyond for others. She has so much more life to live and we are asking for your help so that she can have these surgeries and live out the rest of her life with the use of her left lung again.

A meningocele is an extremely rare condition where the meninges, which encapsulate your spine, has an out pocketing that slowly fills with spinal fluid. Sue was misdiagnosed in her 20s and later on was finally diagnosed correctly but by that time, the meningocele had grown so large that no one would operate on it. She was told that if surgery were done it would burst and she would not survive. She has lived her life being told that surgery was not an option until recently when her brother in law found a doctor in India who had successfully removed a meningocele from a patient. The patient walked out of the hospital a week later with full lung capacity. This gave us all a new sense of hope! Sue has spent months and months trying to find doctors who will operate on her here in the US and it is becoming more of a reality every day. She has gotten MRI after MRI, CT scans, and every test you can think of and we are finally at a point of getting a surgical team together who will operate. We cannot emphasize enough how scary surgery is but it is the only option to improve her quality of life and prolong her life.

Something else that makes things that much harder is that Sue's husband, Chris, the father of their two sons, passed away 9 years ago from cancer, specifically adenocarcinoma in the small intestines, which is also an extremely rare condition. This loss effected her and the boys, as well as the entire family, in ways we cannot describe. Chris was an amazing God fearing husband and father who was the life of the party that everyone remembers fondly. The loss of Chris has not only been life changing mentally and emotionally but also financially. He was the breadwinner and ran his own electrical company to support the family. Sue has worked for Starbucks for 25 years and now also does real estate but with the stress of house upkeep, medical bills, being on oxygen support, and an increased cost of living, this surgery and recovery poses a very real financial issue.

If you've read this far, thank you. Words cannot explain how much we need Sue in our lives and how much more life she has in her! She will be the ultimate grandma someday and we want her to have that opportunity. We appreciate every single share this story gets and every single dollar that you are able to donate. Thank you and God bless! <3

A Thank You From Sue:

Elly, Davis, Landon, and Emily, thank you so much especially Elly for such an endearing, kind write up of my scenario with all of my medical “stuff.” It is something that you guys know I don’t like to talk about nor have I shared with many people. I never wanted people to feel sorry for me, or always divert to how am I, how is your back, etc. I knew there was nothing I could do from what the doctors had told me so I didn’t want to have to talk about it the rest of my life. I knew from the age of 17/18 this was going to be a part my everyday life and only Chris and I really needed to worry about it…so I thought. It wasn’t until Chris got cancer that he shared it with our Bible Study Group. The evening he did, he told the group he was going to have an angry wife when everyone left, and then proceeded to tell them about the history of my spine and situation. I realized when he was sharing, it was probably the kindest thing he could do. He wanted everyone to know so they could be praying for me because as he said, he won’t be around to be praying for me anymore and I needed prayers he said.

With all of that being said, I am absolutely humbled by the financial support, love, prayers and kindness from everyone! It is hard to put into words how I feel. Thank you seems so trite. But that is what I am. I am thankful for the friendships, family and support that I have been so blessed with. Thank you all so much! I love my family and friends dearly, and I’m so thankful you are in my life.