Looking Back

Since I wrote my post reviewing 2009, I have also been thinking about the past decade. So much has changed in the last 10 years and I thought it might be interesting to highlight some of the major events that have occurred in that time.

• 2000: Finished my junior year of college and began my senior year at Trinity Christian College in Palos Heights, IL. I worked at Steelcase for the last time as summer help. I had knee surgery in December.
• 2001: I did my student teaching at Southwest Chicago Christian School -- Tinley Park (6th grade) and Chicago Ridge Public School (4th grade). I graduated college with a B.A. in elementary education. I spent the summer back in Michigan working at Gap and babysitting before moving to Illinois. I began working at Westminster Christian School (WCS) teaching 7th and 8th grade math, 8th grade bible, and a computer elective. I also met Ryan.
• 2002: Ryan and I began dating on February 14. We were engaged in June. Ryan went into the hospital for the first time while we were together. We began wedding planning. I continued teaching at WCS.
• 2003: Ryan and I bought a townhouse in Lake In The Hills, IL. We got married on July 5 and went to Hawaii on our honeymoon. I continued working at WCS and Ryan worked at Precision Twist Drill.
• 2004: Ryan began working at Ameriprise as a financial planner. We flew to Connecticut for his best friend's wedding. We had a puppy for 6 weeks. :)
• 2005: Ryan had a major CF crash in April that lead to us beginning transplant evaluation at University of Wisconsin -- Madison. We began pursuing IVF. We found out that we were pregnant with twins in September -- YAY!
• 2006: I went on maternity leave and Ryan lost his job at the end of March. Lily and Wyatt were born on April 3 (33 6/7 wks). Ryan worked part time through the summer in Illinois. He found a job in Grand Rapids, MI. We moved to Michigan in September and lived with my parents. We sold our townhouse the last week of December.
• 2007: We started renting a townhouse. We enjoyed watching Lily and Wyatt grow. Ryan's health began to take a turn for the worse at the end of the year. We again began pursuing a lung transplant, this time at U of M.
• 2008: Ryan finished his lung transplant evaluation and was listed on March 17. He went into the ICU on March 23 and was never able to return home. Ryan went to heaven on June 6 after 10 1/2 weeks in the ICU. God became my source of strength during the most difficult time of my life.
• 2009: I bought a home for Lily, Wyatt, and myself. We took a trip to Disney with my parents. I continued to rely on God...

It is so great to reflect on where I have come from. When the last decade started I was far from being the person that I am today. I made choices based on what I wanted for myself and not on what God wanted for me. He has used the events of the past 10 years to draw me closer and to transform me into who I am today. Some of the things He has used have been fun, happy, joyful things. Some of the things He has used have been difficult, trying, sad things. Through them all I can see God's faithfulness. I can see how He orchestrated situations in my life to show me who He is. I am so thankful for a God who loves me and provides for me. I am thankful that even with an uncertain future, I can KNOW that God will provide for all of my needs and that I am loved!

Our Story (The Condensed Version)

I have realized that there may be a lot of readers out there who do not know our whole story, so I thought that I would give the condensed version here in case you didn't have hours to spend reading the blog.

The first time I met Ryan was on September 11, 2001. I was a first year teacher, fresh from college. It was only my 6th day teaching. I had no idea what to think about the attacks of that day, and I was unable to answer my students' questions about the World Trade Centers.

I worked with Ryan's mom and Ryan came to visit her because he wanted to be near family that day. The P.E. teacher, Mr. Funkhouser, ask Ryan if he would go answer student questions in the new teacher's classroom. Ryan told me that he had it all planned out what he was going to say to the students, but then forgot once he got into my room and saw me for the first time (evidently it was love at first sight for him :) ).

To be honest, I don't "really" remember Ryan from that day, I was a little overwhelmed. I do remember him leaving the room and the students asking me, "what did he just say?" My response was somewhere along the lines of, "I have no clue!"

I did not know about Ryan's "instant love," but we did get to know one another little by little over the next few months at Amanda's (his sister) basketball games and a Super Bowl party at his parent's house.


Our first date was on Valentine's Day, just as friends. We both wore black because we were both a little bitter about the day. Ryan had a rose for me and told me that ever girl needed to get flowers on Valentine's day. We enjoyed a nice dinner together and got to know one another a little better. I left excited, but did not know if it would go anywhere.


It did not take long for me to find out how Ryan felt. Within a week or two we were spending a lot of time together -- almost everyday. Ryan was a hopeless romantic and was always coming up with different ways to make me feel special. On Father's Day of 2002, 4 short months after our first date, Ryan asked me to marry him and I said yes!


The very next day, Ryan went into Northwestern Memorial Hospital in Chicago for a scheduled "tune-up". This was the first time that his cystic fibrosis really impacted our relationship. He had not been in the hospital at all while we were dating and he had only gone to one or two clinic appointments during that time. I think I was still oblivious to the reality of CF, but we enjoyed spending hours together in the hospital talking about our wedding and our future. I was tested to see if I was a carrier for CF so that we could start discussing the possibility of children in our future. I was not a carrier -- yeah!


We were engaged for just over 1 year. We spent a lot of time together during that year. We bought our first house on February 28, 2003. We repainted every room and put down new flooring too. I moved into the townhouse in April of that year and could not wait to be joined there by Ryan in July!

We had a beautiful wedding on July 5, 2003 and we spent 1 week in Maui, Hawaii on our honeymoon. We enjoyed being newlyweds and we enjoyed our first home together. Ryan continued working for Precision Twist Drill and I continued teaching at Westminster Christian School. Ryan would go in to the hospital for "tune-ups" every 4 to 6 months, but most of them were scheduled around my school vacations, so I would go and stay with him in the hospital (romantic, I know).

In March of 2004, Ryan started a job as a financial advisor at Ameriprise Financial. He loved what he did, but the long hours and excessive commute were difficult for him. He would push himself to keep up with office expectations and it ended up taking a toll on his health. In April 2005, Ryan had a major "crash". Dr. Boas, his CF doctor, first brought up the idea of transplant to us and it was devastating. We knew that a transplant would be necessary in our future, but we had always talked about it being years away. We had just started to think about seriously pursuing the idea of children using IVF treatments (a necessary means due to CF) and we were left wondering whether or not we should even consider having kids. Dr. Boas was fantastic and answered all of our questions about transplant and we realized it wasn't the end of the world.


We decided that we were going to go ahead and pursue IVF starting in June 2005. It was an emotional time for both Ryan and I, but we knew that it would be worth it in the end if we were able to get pregnant. While doing this, we were also looking in to the transplant program at the University of Wisconsin -- Madison Hospital. In early August we headed up there for 2 1/2 days of intense testing for Ryan and a lot of emotional stress for both of us. We came home on Thursday night and we found out on Friday morning that our first round of IVF treatments were unsuccessful. We did not give up our hopes and we decided to do another treatment the next month.


While waiting to see if our second cycle was a success, we were making trips back and forth to U of W to see where Ryan would fall in terms of transplant. At that point, he was considered borderline for transplant and it was recommended to us that we wait to get listed, but Ryan would continue to be monitored every three months. Within two weeks of that news, we found out that I was pregnant -- praise God! Two weeks later, we went in for our first ultrasound and we saw our double blessing -- TWINS! We were so excited, we were actually hoping that it would be twins.



My pregnancy went well, other than having morning sickness 24/7 for the entire time. Ryan was now doing "tune-ups" every three months to avoid another crash. We were anxiously preparing for our two little ones, which we found out in January 2006 would be a girl and a boy. I stopped teaching at the end of March, so that I would be able to carry the babies as long as possible. Unfortunately, while Ryan was in the hospital doing his last tune-up before the babies were born, he was given the news that he had lost his job with Ameriprise. Now we were both unemployed and expecting twins. The stress of everything put me into early labor on Saturday, April 1, 2006 (the twins were due May 17) -- Ryan was actually at a job interview when I called my doctor and he said "come in, I want to see you".


Off we went to Good Shepherd Hospital. They started me on magnesium right away and they were able to stop my contractions, but I had developed toxemia. My doctor decided that it would be in my best interest, as well as the best interest of the twins to induce me. On April 3, 2006, Lily Grace Sweeney was born at 9:20 pm weighing 4 lbs. 3 0z. She was followed by her big, younger brother Wyatt Ryan Sweeney at 9:37 pm weighing 4 lbs. 13 oz. Both kids were breathing on their own and were only kept in the NICU to learn how to breath. Wyatt came home with us on April 19 and Lily followed one week later on April 26.

The kids were healthy and doing well, but we were still unemployed. Ryan began looking for jobs not only in Illinois, but also in Michigan near my family. God was totally at work here. He provided a GREAT job for Ryan at 5/3rd Bank in Grand Rapids. It was basically his dream job -- analyzing stocks. He did two more tune-ups with Dr. Boas in Chicago, but it was too difficult emotionally and so he switched to a doctor here in Grand Rapids in the spring of 2007. That was another "God-thing". We found out that Michigan has a special insurance for CF adults that would cover all costs of CF treatment not covered by primary insurance -- HUGE blessing!

By the end of 2007, we were well aware that Ryan's health was failing. We had not been good with the transplant evaluations every 3 months (it wasn't a concern of doctors), so we didn't know exactly how far Ryan had deteriorated. We were able to schedule a visit to see Dr. Ojo at the University Hospital at U of M on December 20, 2007. Our follow up visit with her was on February 21, 2008. It was a day of a lot of tests, but we left feeling like we knew where we were headed.

Februray 22, 2008, just one day after seeing Dr. Ojo, I brought Ryan to the ER here in Grand Rapids. He was struggling to breath and they discovered that he had Influenza A (which Lily, Wyatt and I all proceeded to get) which led to pneumonia. Ryan spent two weeks in the hospital, but he was able to finish up almost all of his necessary transplant tests. Ryan came home from the hospital feeling a little better, but still not great. A few days later, March 12, Ryan was scheduled for a procedure at U of M. It was his final test for transplant evaluation, but the doctors decided that he was too sick and he was immediately admitted to the hospital.

I left Ryan at the hospital in Ann Arbor because we were scheduled to move that weekend. So while Ryan was sitting in a hospital, I was packing like a crazy woman. Thanks to the help of 15 people from my family and our church, we were moved and mostly unpacked within 4 hours!

On March 17, 2008, Ryan had his final test done and found out a few hours later that he was listed for lung transplant at #1. His scores did not indicated that he was "that sick", he was just the sickest in his category for blood-type and body size. I went and picked him up from the hospital the next day.

By Saturday (March 22) Ryan was really not feeling well and I thought about taking him back to U of M. He told me he would be fine, but in the middle of the night, he woke me up and asked me to call an ambulance. I was unable to go with him because I had the stomach flu, but my parents came over to help out -- my dad sitting in the ER with Ryan for hours while doctors tired to figure out what was going on.

I received a call from Ryan's doctor telling me they were going need to put Ryan on a ventilator. I was able to get up to the hospital and see him before they did, but he did not remember me being there. I called his parents and they were soon on their way to join me at Ryan's bedside, along with Amanda and his Grandma. I was also able to talk with someone from U of M who told me it was important that Ryan get flown there as soon as possible, unfortunately all of their ICU beds were full.

Two days of anxious waiting in GR led to an ambulance trip (a high wind advisory stopped the helicopter) to University Hospital where Ryan spent the last 10 1/2 weeks of his life. Those 10 1/2 weeks were filled with many ups and downs. Ryan was on and off the transplant list a few times during those weeks, but EVERYONE believed that he would get his new lungs. Ryan continually impressed the staff of the CCMU with his determination.

In the end, Ryan's lungs gave out. There was nothing more that the doctors could do for Ryan. Lungs did not become available. Ryan went to be with our heavenly Father on June 6, 2008. At the time, those 10 1/2 weeks in Ann Arbor were hard, but I would not do it any different if I had to do it again. Ryan and I spent 12 hours a day together for those weeks. We were able to laugh together and cry together. We were able to tell each other our hopes and dreams for our future and for Lily and Wyatt. We were able to say I love you to each other every day.

God has blessed me with my two children. Lily and Wyatt are a constant reminder of their Daddy. God provided for Ryan for our entire marriage, helping us through both good times and bad. He continues to sustain me

I HATE...

the fact that 6 months ago today we were at U of M finishing up Ryan's transplant evaluation. Why didn't we get there sooner?

Pleading

I have been pleading with God for our miracle to come. I do not understand his timing and I wish that I could see his big picture. My heart breaks each time I walk into Ryan's room and see him lying there sleeping. I know that the window of opportunity for Ryan to get his new lungs in closing, but our God is bigger than that little window. I have to hope and believe that God will provide Ryan's lungs at just the right moment.

Ryan's oxygen levels have been between 95 and 100% since last night. He seems to be resting comfortably this morning, but I know that his night was difficult. There is not a whole lot of wiggle room with the ventilator anymore, but I know, and must believe, that God can do more than I could ever ask or imagine.

Please continue to storm the throne of God on Ryan's behalf.

In Need of a Miracle

I know I have said it before, and God has always answered, but we are in need of another miracle. Ryan's lungs are giving out a little more each day. He has been between 90 and 100% oxygen since midnight. He is very tired and has spent the majority of the day sleeping.

Cathy, from transplant, came in to see us today and told us that she would tell us if she didn't think it would happen, but she fully believes that Ryan will get his lungs. Lungs have come up in other states, but the number one person from those states has taken the lungs each time (who can blame them?). Dr. Ojo was encouraging when she came in too. She said that the walk that he did yesterday would buy him a day or two of rest -- that's good, no walking is going to happen today.

God has blessed us richly in this experience. There are so many staff members here that are fighting for Ryan almost as much as we are. There are doctors that have moved on in their rotations, yet they continue to check on Ryan. The staff has become our family here and they make the pain of the hard days a little easier. The hugs and encouragement from them is what helps us both get through the day.

We also appreciate our families and friends for their support. We had a good visit with Ryan's mom, sister and sister's boyfriend as well as his grandma, aunt and uncle. It is all the visits, emails, and phone calls that lift us up and let us know that we are supported even though there are many days we are here by ourselves.

Sunday Update

Today has been another day of ups and downs. Ryan is now requiring 100% oxygen almost any time he exerts extra energy. If they are able to give him the 100% before he begins different tasks, he is able to recover somewhat quickly; if they wait until after the task is completed, he really struggles to recover. His lungs are just really tired and really sick and just seem to be giving out. We need new lungs!

I also wanted to give an explanation about the ability to get lungs from other states. Ryan is #1 in the entire Midwest for his blood type and body size. In order for him to receive lungs from another state, the person that is #1 in that state would have to turn the lungs down (that person would most likely be too sick or on hold to receive lungs at that time). If the #1 person in that state would turn them down, they would automatically be offered to Ryan. Sometimes lungs are turned down because they are not "healthy" enough, in that case we would not want them either.

Our time with Lily and Wyatt (and my parents) was great! The kids are the best medicine for both Ryan and I right now. I let the kids come up to his ICU room again. They played on his lap and in his bed for almost an hour! We can't wait until we are home to be with them full time.

Ups and Downs

Today has been filled with lots of ups and downs. Ryan's oxygen levels have fluctuated between 75% and 100%. He actually reached 100% twice, but is now back down to 75% as I am leaving tonight. We are praying and praying that the lungs will come sooner rather than later!

I have spent a little time with the kids -- they are the best medicine for me and I am hoping that they will be able to be medicine for Ryan tomorrow. I enjoyed a nice dinner out with my parents and the kids tonight as well as a nice lunch out with friends!

Organ Donation

Over the past few years, and especially in the last few weeks, I have learned a lot about organ donation. Organ donation is a personal choice, but I would encourage all of you to research it and make a choice for yourselves. It is something that you can do in a tragedy to bless the lives of others.

Here are a few facts about organ donation:

• Almost 100,000 people in the U.S. are on the waiting list for an organ.
• An average of 18 people die every day because not enough organs are available.
• Kidneys, hearts, lungs, livers, pancreases, and intestines are the organs that can be transplanted.
• Blood vessels, bone, bone marrow, connective tissue, corneas, heart valves, middle ears, and skin are among the tissues that can be transplanted.
• Organ donation does not change the appearance of the body for the funeral service.
• Organ donation costs NOTHING for the donor, all costs related to donation are paid for by the recipient and their health insurance.
• Every effort is made to save your life before donation is considered.

Check out the following websites for more information or to sign up to be an organ donor:

• http://www.giftoflifemichigan.org/
• http://www.organdonor.gov/

Ryan has been having a difficult morning. He woke up with a start around 5:00 am and things have spiraled downward since then. At one point he was on pressure control with his oxygen at 90%, but they have returned him to assist control (regular) with his oxygen at 85%. They were able to get a mucus plug out of his lung and he is sleeping now, so hopefully he will be feeling better soon.

We are looking forward to a visit from some of the wives of our Pointe Group this morning and then my parents and the kids coming in this afternoon. They will be staying until tomorrow and then Ryan's mom, sister and sister's boyfriend will be coming to visit on Monday on their way home from Ohio.

An Even Better Day

Shortly after I posted my last update, Dr. Ojo came in and told us that they have taken Ryan off the restriction to "Michigan Only" lungs. She mentioned that he would be able to get lungs all the way from the Carolinas so I think that means he is able to get lungs within 1500 miles. This is another example of God's faithfulness as Ryan was supposed to remain "Michigan Only" for the next month (due to the blood transfusion he had at the end of May).

We know that Ryan basically has the highest LAS (80.45) in that entire area -- Dr. Ojo had told us yesterday that he was starting to show up on the radar of other states.

This brings us one step closer to new lungs and being home again.

PRAISE GOD!!!!

A Good Day

Today is a good day. Ryan's oxygen is at 75%, but he told me this morning that he feels the best today that he has felt in several weeks! He took his walk this afternoon and went 2 laps without stopping. He says that he could have gone further, but he didn't want to overdo it and then struggle for the rest of the day.

Strength and lungs are still our big prayer requests. Thank you so much to each one of you who faithfully prays for us!

Nothing New

There is not much new to report. Ryan's oxygen level has remained at 75% for the past few days and his PEEP is at 12.0. The doctors seem okay with this as long as he keeps moving. Each day he has been able to walk further, so we are both encouraged by that. They are continuing to give him at least one dose of Lasix each day to help get the excess fluid off, and that seems to be helping his oxygen levels improve or at least remain stable.

We were able to get outside today. Ryan had to go on the laptop vent, but we had great RT's and nurse who were willing to help us have a change of scenery. Thanks, Kate, Rose, and Roxanne!

Please continue to pray for Ryan's strength and energy. Specifically pray that he is able to keep walking each day. Please also continue with your prayers for new lungs!

Thanks!

Trusting

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned; and the flames will not set you ablaze." Isaiah 43:2

It seems as though we are once again going through the waters and the rivers and walking through the fire. It has been a tough day with difficult news. Thankfully, Ryan is still listed as a transplant candidate. I am so grateful to God for that news and hoping, praying, and begging God that tonight will be the night for new lungs!

Ryan had to go up to 100% oxygen this morning because he was not oxygenating well. It is now down to 80% and the doctors are once again throwing everything in the book at Ryan. They are starting several new antibiotics by mouth and those will start going in through the IV tomorrow -- they are using today to get as much fluid off Ryan as possible. Dr. Ojo is fighting to keep everyone on the same page and to keep Ryan activated on the list.

I have only one plea to all of you, please, please, please pray. I know you are, but please don't stop.

I have now seen Ryan and he seems really, really tired today. The staff is hoping that it is due to the Adivan that they gave him this morning to make him less anxious, but there is a possibility that his carbon dioxide levels could be up which would also make him sleepy.

Dr. Gay came in and told us that he believes Ryan's oxygen requirements are up due to increased fluid in his body. They are going to give him Lasix at least 2 times and possible 3 times today to get as much fluid off as possible and hopefully make his breathing more comfortable. They are also changing some of his IV antibiotics to oral antibiotics so that they will be putting in less fluid throughout the day.

The RT has been able to suction a lot of "gunk" out of Ryan's lungs this morning, but that makes him more tired because he coughs so much during the suctioning.

Ryan's mom and sister are on their way right now. I think that they want to be here as a support to both Ryan and I while times seem difficult. My parents and the kids will also be here in a few hours. I am hoping that God just wants us all to be together when we get the call about new lungs! :)

Please pray:

• That it is the fluid causing Ryan's breathing difficulties and that the doctors and nurses are able to get that under control.
• That Ryan's carbon dioxide level is not rising.
• That Ryan is able to get the rest that he needs while also being as active as possible.
• That we would have the strength that we need to have for Ryan.
• That our families would have safe travel on the road today.
• That God would see fit to provide Ryan's new lungs SOON!

Please Pray

I know that I continually ask for prayer for Ryan, but I feel like we have a greater need this morning. I was called by Ryan's nurse at 6:45 this morning. She wanted to let me know that Ryan was extremely anxious this morning because they had to turn his oxygen up to 80% over night. Ryan has not been on this much oxygen since April 7 when the doctors were not very hopeful. I know that the 80% he is at right now is different because he is awake and able to move around, but I still feel great urgency for his new lungs. Please pray not only for his new lungs to become available but also for Ryan to be able to keep walking and staying active. I am not sure how high they will allow his oxygen to go before they will put him on hold again, but I know they will put him on hold if he is unable to get his walking in.

Thanks for praying for our miracle!

2 Months

It has been exactly 2 months since Ryan first went on the ventilator. It has been 2 months since Easter Sunday. So much has changed in our lives over the last 2 months. God has sustained us through it all, but I (and Ryan) am ready for life to return to "normal". I am not sure what normal is going to be once Ryan gets his new lungs, but I am hoping that it will be better than before with Ryan having more energy and I know it will be better than sitting in the hospital day in and day out.

Ryan and I could really both use prayers for strength today. We both see the great need for his new lungs (not that we didn't see it before); his current lungs seem to be giving out more and more each day. He has been more tired and out of breath over the past couple of days. His oxygen requirements have been at 70% for the better part of 3 days. Please pray that Ryan is able to continue getting up and walking each day. Please pray that Ryan's CF lungs will be strong enough to hold on until the right set of new lungs are ready for him. We believe that it will be soon, because we still feel that Ryan being placed back on the list in his current state is truly a miracle from God.

We have both been told many times that holiday weekends are "good" for transplants. The unit host was telling me this morning that when she used to work in the OR they would have a page of 13 transplant surgeries almost every holiday weekend. I am saddened that someone will have to lose his or her life in order for Ryan to continue to live, but I will be forever grateful to the family who will give so generously to us in their time of grief. I pray for them each day as they will soon be losing a loved one.

Thank you again for your continued support. Ryan and I are so grateful for all of you and the prayers you lift up on our behalf!

An Up and Some Downs

The last few days have been filled with many downs and one HUGE up.

Ryan and I were under the impression that all he needed to do to be reactivated on the lung transplant list was to go through 10 days of antibiotic treatments for his C-DIF. Yesterday morning we received a phone call that they did not want to reactivate him until he had walked 450 feet in 6 minutes again. Ryan had been walking every day, but he had not been pushing it and had not completed that distance in a while. He had gone about 425 ft on Sunday but that was not documented anywhere. Dr. Ojo said that she would have to talk with Dr. Chang (surgeon) to decide if that was good enough or not.

Later in the day, Dr. Chang stopped by, but it was after a bad "spell" for Ryan and he was not feeling the greatest. We thought for sure that Dr. Chang would say that Ryan could not be listed. He said that he would talk it over with Dr. Ojo and let us know.

Ryan also tried to do some trach masking yesterday evening and that did not go well. He had an anxiety attack while doing the trach mask, but he was able to do it for 30 minutes. We were both really disappointed because it seemed that to be reactivated he would have to be doing trach mask each day for a longer period of time than 30 minutes.

When I got here this morning, Ryan was at 70% oxygen on the ventilator and still not saturating well (oxygen level in his blood). Again, Ryan and I were both disappointed and both thinking in our heads that getting back on the transplant list was fast becoming a fading dream (of course neither of us said this aloud). Dr. Ojo came in and said that being on 70% oxygen now was very different from being on 70% oxygen weeks ago -- mainly because he is still able to get out of bed and walk. She told us that we would hear from her later today once she had the opportunity to sit and talk with Dr. Chang. She also told us that doing the trach mask is not as important as doing the physical exercise so we have shifted our focus a little more (again).

Late this afternoon, Jenny (transplant coordinator) came in and said that Ryan has been activated! Thank, God!!! We are so thankful that he got back on the list and we really consider it a miracle. Ryan's LAS is in the 70's so he is still #1.

Please continue to pray for us as we journey down this road. We are both so happy that he is activated, but still apprehensive about secondary infections or anything else that might put Ryan back on hold. Please pray that Ryan will receive his new lungs SOON! Please continue to pray for the donor family who with share so much with us in their grief!

Improvements and Blessings

Today has been a good day overall. Ryan has had a good day, especially once he got a dose of lasix (to help get rid of excess fluid). He was able to do 3 laps (just over 400 feet) around the ICU and then did both pressure support on the ventilator and 15 minutes of trach mask.

Dr. Ojo came in to see us this afternoon. She told us that she expects Ryan will be re-listed on Tuesday -- YEAH!!!! Her daily goals for Ryan (build up to and continue once listed) include: walking at least once a day, trach mask twice a day for 1 hour each time, and riding his "bike" a couple of times a day. Dr. Ojo said that Ryan is the first patient that they are willing to transplant from the vent, meaning all previous patients have had to do at least 12 hours of trach masking most days. She insists that he keep up his physical strength by walking and riding his bike, but she doesn't want to push him too much with breathing because as she likes to say "we know you need new lungs". We are so thankful to God for these "reduced" expectations. We are hoping that God will use Ryan to set medical history here and help other CF lung transplant patients in the future.

We had great visits with all of our visitors this weekend. My parents have returned home and Lily and Wyatt are back with Grandma and Papa. Visitors continue to be a HUGE blessing to both of us!

I also wanted to just say thank you for all of the support that you are so faithful in giving. We are constantly reminded of all of the prayer warriors we have out there. We know that God is hearing your prayers and holding us up. We are also thankful for all of the financial support that so many of you have given. It is amazing to see what God has done in that area for us! We have been blessed beyond measure and we just wanted to make sure that we are so thankful for all of the generosity. We are also thankful for the care packages that have come our way! They have all been such a wonderful and generous surprise!

One last thing I want to share about God's faithfulness. We found out earlier this week that we were approved for another grant -- this foundation is going to cover 3 months of our rent for us! Thank you, God, we are so richly blessed!

I just wanted to let everyone know that things are going much better! Ryan is back down to 45% oxygen and feeling pretty good. We think that we only have a few more days until he gets relisted, but we don't know for sure. He has still not used the trach mask since last week, but the doctors are not pushing that as much as they were before -- they keep telling us "we know he needs new lungs".

Dr. Sisson is no longer our attending doctor, now it is Dr. Gay. He seems to be a very fun guy; he is also a consulting transplant doctor, so we will get to know him more after transplant too.

We are enjoying time with family and friends this weekend. Ryan's dad has been here since yesterday. My parents, Ryan's uncle, and Ryan's boss and his wife have all been here today. My parents will be heading back tomorrow and Lily and Wyatt will go back to staying with them. The kids have done great while my parents have been gone, although Wyatt did not want to talk to me on the phone before tonight :(

Thanks for your continued prayers and concern. Please pray that Ryan will be able to be relisted soon and then receive his new lungs quickly. Please continue to be in prayer for the donor family as well.

Potholes

Ryan and I are both disappointed and frustrated with the way things are currently going. This morning when I got here, Ryan's oxygen was up to 60% (his PEEP is still 8.0). It feels like we are going in reverse and that is a hard position to be in. The doctors are encouraging and they tell us not to be disappointed and that these are only small bumps -- to us they are the type of pothole that will swallow your car whole.

They are starting Ryan on a new medicine to fight fungus in the lung. There is no actual evidence of a fungus growing, but they want to cover all of their bases. They are also increasing the level of steroid that he is on, going from 5 ml to 60 ml. The steroids had a huge impact when things were really bad, so we are hoping for good results again. The medicine that they started on Sunday for the C-DIF does seem to be working so that is good.

Ryan has not been off the ventilator at all since Thursday or Friday of last week. When he does go back to trach masking, Dr. Ojo wants him to only go on for 2 hour stretches at a time with at least an hour off in between. Her goal would be that he could do a total of 8 hours in a day, but he will have to build up to that. He has walked each of the past 3 days, but only 1 to 2 laps each day (roughly 140 ft./lap). Both Dr. Ojo and Dr. Sisson have told Ryan to just keep moving but not to overdo it.

Please continue to keep Ryan and I in your prayers. Please pray specifically that the new meds have the desired affect and that Ryan can feel the improvement soon! Please pray that we are both able to keep our spirits up right now. Please also pray for Lily and Wyatt; my parents are taking a short, but much needed, vacation. Lily and Wyatt are staying with friends, so please pray that that goes well....Thanks, Kelly, Scott, Megan and Cody!