There is really nothing new to report. We are still waiting for Dr. Ojo to give the thumbs up to be re-listed on the lung transplant list. Ryan continues to do well on the trach mask; he is now spending 14 hours per day on the mask and only 10 on the ventilator.

Ryan is also doing well with his walking. He went 464 feet this afternoon on the ventilator (acceptable to Transplant) and then he walked 298 ft later in the afternoon just on the trach mask. The staff up here is so excited for Ryan and all the progress he has made – he has his own cheering section every time he goes out for walks.

Tomorrow is the start of a new month and that means there will be staffing changes. All of the doctors will be changing, except the Intern who started last week. Dr. Hyzy came in to say bye to us today. He told Ryan to keep up the good work. Dr. Sisson will be taking over as the attending doctor, so we will see if the plan changes in anyway. Also, Dr. Ojo will be the doctor who is rounding for the Transplant Consult team, so we will be able to see her more often!

Prayer Requests:

Ryan would remain infection free
Ryan would have better mornings – it takes a few hours each morning for him to get used to the trach mask and really get in the groove of things.
Ryan would be able to continue getting a good night of sleep.
Ryan would be re-listed – SOON!
Ryan would get new lungs – SOON!
Pray for the donor family who will lose a loved one in order for Ryan to get new lungs.
Strength and energy for both of us!

Three Weeks

It was three weeks ago today that things were looking so grim. Ryan's oxygen level was 100% and the doctors were not seeming very hopeful. I am so thankful for those of you out there who kept praying and never gave up hope. I am so thankful for God's grace and mercies which have been new each morning. I am so thankful that today there has been serious talk of reactivating Ryan on the lung transplant list!

That is right, you just read that they are talking of reactivating Ryan on the list. He has been doing his trach mask for 12 hour days (today is day 3, but should be day 4). He walked 450 feet again today, this time on FLO-BI (oxygen only setting on the vent). His walk time today was about 8 minutes, but would have been shorter if we had not been having such a hard time with the vent. The doctors must have been pretty excited because Cathy, from transplant, was up in Ryan's room within 1 hour of this occurring. They wrote orders for Ryan to have blood sent to LIFE SOURCE, the company that will help with the cross-matching that will be necessary due to his blood transfusion. Dr. Ojo will be the one who gives the official thumbs-up and she would like to see Ryan be able to walk 450 ft a few days in a row. We are beyond excited!!!!!! God is so good! The staff up in the ICU is smiling from ear to ear too.

It is actually a surreal feeling! Cathy said that Ryan was surprising everyone with how fast he was recovering. Our God is an awesome God and I hope that the doctors, nurses, etc. can see his hand in all of this. They appreciate Ryan's attitude and say that he will do really well with his transplant too because of it.

Please continue to pray that this road we are walking stays "smooth". Pray that Ryan continues to be infection free (other than his lungs). Pray that our attitudes stay positive. Pray that Ryan's strength will continue to increase, along with his appetite (they bumped him up a level in his diet too).

I am so happy and excited today and rejoicing in what God is doing in our lives!

Weekend Update

It was a great weekend!

Ryan was able to do his trach mask for 12 hours two days in a row. On Saturday, he walked 300 feet and today he walked 450 feet! Now we just need to figure out what the actual details with the walking need to be: vent or no vent? He also needs to get his time down a little, but at least he is able to go the distance. Ryan also had a great time visiting with his mom and grandma while I was home.

I enjoyed my time with the kids so much! Their hugs, kisses, and "Mommas" were all priceless! Going to church this morning was also a huge blessing! It was so nice to be back with our church family and feel their support in a tangible way. Community worship is so good for the spirit too! The time that I had at home was just what I needed to be able to keep helping Ryan.

I am looking forward to seeing what God has in store for us this week. I am hopeful that Ryan will be re-activated on the lung transplant list this week or next. Please be in prayer that we are able to get our questions answered about the walking and that Ryan's strength continues to increase. Please also continue to pray that Ryan stays free of secondary infection (this could be a set back for getting/staying on the list).

FOOD!!!

The big news of the day is that Ryan was able to eat food for the first time in almost 5 weeks. He was finally able to have his swallow study done today and he passed with flying colors. He is on a level 2 diet which mainly consists of "soft" solids....meatloaf, lasagna, ice cream, applesauce, and any kind of liquid, etc. If he does well with that over the weekend they will come back and retest him to see if he can eat more solid foods. He was ecstatic!


We were also able to meet someone from recreational therapy today. We got a Scrabble game to play in the room and we were able to go down and play the Wii (not sure if I am spelling that right). That will be something that we can do on a regular basis if we want. They will hopefully figure out a way that Ryan will be able to use the computer in his room as well, since we lose the Internet if it is moved even 1/2 in in the window. They might also get us a TV with a DVD player if they can.


Ryan's goal for weaning today was between 10 and 12 hours. He made it to the 10 hours fine, but since we got started late with the whole process (long story), we did not try for the 12 hours. He was also able to walk about 200 feet!


I am planning on leaving for home around noon tomorrow -- I am just a little excited :)!!!! I will miss Ryan, but I know it will help me be a better wife and cheerleader. Please pray for Ryan that he won't have any anxiety with me being gone and that I will be okay with being away too.

They had to dye the food blue for the swallow test to make sure that Ryan was swallowing it properly and that none of it was going into his lungs. He was in a really good mood for the test -- can you tell for the pictures? :)

Ryan's 1st meal in almost 5 weeks. He actually only ate the strawberry jello and some of the lemon ice, but hey you have to start somewhere.

I've Been Tagged

This is a fun and different type of post than I have been doing lately...enjoy....

I am: A mom, wife, daughter, sister, caregiver and friend
I think: what life will be like when Ryan gets his new lungs; what Lily and Wyatt are doing
I know: I am loved
I want: to be home and for life to be back to normal
I wish: for hugs and kisses from Lily and Wyatt
I hate: WORMS
I miss: the kids
I fear: losing those I love most
I feel: tired, overwhelmed, bored...
I hear: someone filling a vending machine, phones ringing, an annoying commercial
I smell: hospital smells
I crave: fresh air and a change of pace
I search: for answers
I regret: when I lose my temper
I love: my husband, Lily and Wyatt, my Lord, my mom, my dad, my sisters and brothers, my friends and the list goes on and on.....
I ache: when I have to walk away from Lily and Wyatt
I care: that God is glorified in our current situation
I always: tell Ryan, Lily and Wyatt that I love them
I am not: patient
I believe: in Jesus
I sing: in the car
I cry: when I just can't take "life" anymore
I fight: when I am crabby
I write: on the blog and in emails
I win: games and arguements :)
I lose: my mind
I never: imagined life would take me down this road
I confuse: what day of the week it is :)
I listen: to the CD that I was given by a friend
I can usually be found: in my husband's hosptial room
I am scared: of thunderstorms....don't ask
I need: some peace and quiet
I am happy about: the progress that Ryan is making
I hope: that Ryan will get his new lungs SOON!
I am tagging: Jessica, Tami, Stefanie, Kristen, Valerie, and Kandy

Yesterday was another day of progress. Ryan walked a lot farther than he did on Wednesday...about 180 feet...with much greater ease than he walked the first time. He also did his trach mask weaning for 8 hours. We were again able to go outside too! It was a beautiful day and we sat in the Japanese Garden for about 20 minutes. It was the last nice day that we are supposed to have for awhile, so I am glad that we were able to take advantage of it. I am hoping that the next time the kids come to visit Ryan will be able to come outside and see them or at least come down to the waiting area and see them. (Our concern with them seeing Ryan has been more with the "bugs" up in the ICU than with Ryan's sickness.)



We were visited by Cathy from the Transplant team yesterday. Ryan really has not heard too much from them because they have not visited as much since he has been feeling better. We wanted to hear from them about Ryan's progress and what they wanted to happen yet before getting back on the list. We are getting closer! They want Ryan walking the 450 feet in 6 minutes (on trach mask, so far his walking has been on a portable vent) and on trach mask for 12 hours a day. They will probably want/need different vent settings at night than what he is currently on, but I am not sure about that. Next week??? Maybe?????? Pray that Ryan's strength will continue to increase and that we will get there sooner rather than later.



I am excited because I will (probably) be going home for a little bit this weekend. Ryan's mom and grandma are coming to visit this weekend, so I am going to take advantage of that to go home and spend some quality time with the kids. I am hoping to get to church too! I will be leaving on Saturday once they arrive in Ann Arbor and come back on Sunday afternoon. It will be a short visit, but I am hoping it will be just what I need to be able to keep on keeping on. Please pray for Ryan specifically about this trip for me. It took some convincing for him to be okay with it, but he knows that it is what I need right now.

This is a picture of Ryan walking on the first day. PT wanted Ryan to hold onto them just so that would be able to "help" him better. Yesterday PT just walked next to him and let him go at his own pace (much faster). The first time he walked he had to take more breaks, yesterday on the long walk he only sat down one time! Ryan is doing such a great job! He works so hard every day! Thank you, God, for giving him the strength to do all things!

More and More Blessings

Today was GREAT! Ryan walked this morning with the help of PT. They figure that he walked about 55 feet total. They also got him a Passy-Muir valve for his trach. It is a cap that goes on the end of his trach while he is on track mask; he is then able to talk. He sounds great! So much like himself, just a little quieter. He was able to talk with Lily and Wyatt and they LOVED it. They kept saying, "Daddy, Daddy, Daddy". My mom said that they had the biggest smiles on their faces as they talked with him. He was also able to talk to his mom, dad, grandma, and aunt. We were also able to go outside again. God's blessings came in big packages today!

More pictures of Ryan outside. Wyatt, the one with the crane is for you :)

Blessings

Pictures of our adventure outside!

Today was a day filled with blessings! First, Dr. Hyzy wanted Ryan to do trach mask for 6 hours today. Ryan's start was difficult, but after a little nap, some suctioning and a breathing treatment he really got going! (His sats started in the low 90's and ended around 97%.)

We were also blessed to be able to go outside! It was the first time that Ryan has been outside in 4 weeks. I am not sure who enjoyed it more, but it was great for both of our spirits! ICU patients very rarely get to go outside, but the nurses made it happen for us and Ryan was able to do it while on trach mask. The only bad part was when we got stuck in the elevator on the way back to Ryan's room :)

Our third blessing of the day was a visit from some people from Ryan's work. They arrived just in time to join us outside. Ryan really enjoyed hearing about work and talking about different market issues with them. Thanks Susan, Scott, Steve, and Tom for stopping in to see us! Thank you to the entire team for the fun care package for us as well.

God has been so good to us! Dr. Hyzy told me two weeks ago that he was not sure Ryan would be able to wean from the vent and he is doing it with flying colors. Roxanne, Ryan's nurse, told Ryan that he was doing so well and that many patients have a much harder time weaning. The resident told me tonight that Dr. Hyzy is impressed with what Ryan has been able to do. All that either Ryan or I can respond with is that God is doing mighty things for us! He has given the doctors wisdom and He has given Ryan the determination.

Continuing Progress

Ryan continues to make great progress each day. He was able to do trach mask for 4 hours today while sitting in the chair. He was actually in the chair for about 8 hours. He is much more comfortable there -- his back tends to ache while sitting in the bed. He also pedaled his "bike" two different times today: once for 5 minutes and another time for 10 minutes.

The trach mask, sitting in the chair, and bike pedaling all builds up Ryan's endurance. Dr. Hyzy had the RT get a portable vent for Ryan today. This will allow him to start working on his walking and attaining the goal of 450 feet in 6 minutes. I am hoping it will also allow us to venture outside to the courtyard on a little wheelchair road trip too!

Ryan is quite strong and walks from the chair to the bed with very little support! Many nurses, techs, PT and doctors have been impressed with his strength. It is so great to see that God has sustained Ryan's strength through this whole ordeal ("they" said that he would not). I was even able to have a standing up hug today!

Please pray for:

• Ryan's continued strength and endurance
• Ryan to remain free of secondary infections
• Ryan and I to be able to take a road trip outside
• Mental strength and endurance for both of us (some days are really difficult especially when we don't have an ending "date")
• Ryan's anxiety levels to remain low (he has done great the last several days, although he still likes me to be there early)

In Just One Week...

In just one week:

• Ryan has gone from 8 minutes on trach mask to 3 hours (in one sitting)
• Ryan has gone from being stuck in bed, to sitting on the edge of the bed, to standing, to doing some walking
• Ryan has gone from communicating a little to communicating a lot via a whiteboard and lip reading
• God has done numerous miracles in our little corner of the world

Today ended up being a good day as far as Ryan's progress is concerned. He was able to do 3 complete hours on the trach mask and will be going for a goal of 4 hours tomorrow. He did not sit in the chair today, but he did sit on the edge of the bed. Matt (our tech) helped Ryan get to the edge of the bed to sit and then encouraged him to try standing. Matt gave him support and Ryan was able to walk in place for several minutes. He also did some squats! (This is not supposed to be done without PT so ... shh!) He is tired early and ready for sleep so I will be headed back to the Transplant House early too.

Please continue to pray for both of our strength for the long haul. Ryan is doing so well, but has so far to go. He was asking me different questions about our "future" tonight as far as being in the hospital and lung transplant go. It was very overwhelming for him to realize what we have to do yet: get back on the list and then wait for some lungs before being able to go home again (probably). It is overwhelming to me too, but we will take it one day at a time and trust God for the strength to get through each of those days. It is hard to believe that Easter Sunday was 4 weeks ago already, but God has sustained us thus far and we are confident that He will continue to do so.

I had a great time seeing the kids (and my parents). It breaks my heart every time they leave to go back home, but I am thankful for the brief moments that I do get to spend with them. I am praying that Ryan will make it out to the "floor" soon so that Lily and Wyatt can come see Daddy too!

Yesterday was a good day. I got to hug and kiss my babies as well as see lots of other family! The kids are so funny and they seem to be growing up so quickly. I must confess that I have not taken a single picture of them this weekend...too busy playing :)

Ryan had a good day yesterday. It started out a little rough, but after a good nap in the morning he was able to do his trach mask for 2 hours! He then moved over to the chair and sat there for 3 hours.

This morning he was very motivated to get started on his 3 hours of trach mask (Dr. Hyzy's goal for today). He wanted to do it from the chair, but after a brief trial with way too much activity he went back into his bed and back onto the vent. He is resting now and hoping to try for his 3 hours later. That is good, it will give us something to work on when everyone else leaves.

Please pray for safe travel for Ryan's dad and my parents and kids as they go home today. Pray for strength for Ryan and I as we continue to walk this ICU journey together! Thanks for all the support you have all given!

Sorry that I didn't update yesterday. I decided not to take the computer with me to the hospital and it was really late by the time I got back to the Transplant House.

Yesterday was another good day. Ryan's aunt and uncle and I went out for a nice breakfast and they came to see Ryan at the hospital. He had gotten a good night of sleep and was ready for a big day. He walked to the chair and sat there for well over an hour. He needed much less help getting there than he did on Wednesday! He was also able to do the trach mask for 1 hour and 15 minutes. He told me he would have been able to go longer but the RT put him back on the vent. Ryan's dad also arrived yesterday morning and will be staying through Sunday.

It is difficult to have 5 RT's in one weeks time, especially when only 1 of them has had Ryan as a patient. They are more cautious with weaning because the don't "know" Ryan. Please pray that we get some consistency with the RT's so that weaning will go more smoothly.

Ryan's morning hasn't started as well as most have this week. He is really tired because for some reason he did not sleep well last night. His parameter numbers for weaning are much lower than they have been, but he is taking a nap and will hopefully feel better when he wakes up. We also have one of our favorite nurses back, so I was really excited about that.

I am also excited because my parents and the kids will be here in a few hours! I can't wait to see them, hug them, kiss them and play with them! I wish that they would be able to see Ryan, but we just don't want to risk exposing them to the other "bugs" in the ICU. My sister and her family will also be here for a little while today and possibly some friends from church who are on this side of the state for a family party.

Today has been another day of progress. Ryan has done some pressure support on the vent as well as 1 hour on the trach mask (Dr. Hyzy wanted to let Ryan get better at doing the hour before increasing too much...he doesn't want Ryan to go backwards because they are pushing too hard).

Here are some pictures of the Transplant House for those of you interested in seeing where I am staying (I have been asked by a couple of people). Just click on the picture and you will be able to see different views of the house with captions.

Ryan's Transplant

We love having visitors, but I need to make sure that too many people are not coming at once. Please let me know if you are thinking about coming so that I can let you know if there are too many people scheduled to come at any one time. Ryan's rehabilitation is very tiring for him and he needs to nap throughout the day when he is not working. Ryan is such a social person that he would want to be awake and be able to entertain who ever is here. Please do not take this as us saying "don't visit". Visitors are encouraging to both Ryan and myself; in fact, I would load up all of the waiting rooms with our family and friends if I could! I just need to make sure that Ryan is getting the best of both things: visitors and rest.

Wednesday

Today has been another day of progress for Ryan. He did the trach mask for 1 hour straight today. They also just put him back on the pressure support setting so maybe he will stay on that for awhile too.

Physical therapy had Ryan out of bed today as well. He stood up and used a walker to take some small steps. He was then able to sit in a chair for awhile. All of these things are steps in the right direction.

He was so cute when I walked in this morning. He said, "watch this" and he sat up in bed without using his hands! He was so proud of himself (so was I for that matter)!

I am praying that God will use this situation in our lives to reveal himself to those around us. It has been interesting talking to some of the doctors in the last week. May God receive all the glory for Ryan's accomplishments and stepping stones over the last week!

Also, I have "moved into" the Transplant House today. The opportunity was opened up to me through our nurse asking one of the transplant staff about it being a possibility. It was checked into and it was an option for me. It is one more blessing from God as it is closer to the hospital and less than 1/2 the cost of the hotel. There is a kitchen and laundry facilities available to me while I stay there. It will be nice to have a house to go to at the end of the day!

Thank you for your continued prayers! We have come so far but we still have a long way to go.

Ryan sitting in a chair! Yeah!

Meeting Goals

Dr. Hyzy set a goal for Ryan today. He wanted Ryan to be able to stay on the trach mask for 30 minutes straight....he did and he did it well. He was stating between 95 and 98% the entire time. His anxiety was much lower today! Praise God for that answer to prayer. Tomorrow Dr. Hyzy wants Ryan to go for 45-60 minutes straight. Also, Ryan stayed on the pressure control settings for a total of five hours today!

Ryan had physical therapy this afternoon and stood up for the first time! It was very tiring for him, but it was a HUGE accomplishment. He also sat on the edge of his bed, sat in his bed in the chair position and rode a "bike" and learned how to do different exercises using a strength training band.

The progress that Ryan is making is so great! God deserves all the glory for the things being done in this hospital room.

Please be in prayer for Kim and her family. She is in a room just down the hall from Ryan. She was healthy, other than a cold a few days ago, and now she too is on a vent. She has two kids: 13 and 10 years old. They are praying for Ryan and our family too! Being a part of God's family is such an encouragement to me.

Ryan standing and riding the bike!

Sunny Day...

Today is such a beautiful day! The sun is shining and that always helps boost my spirits. Ryan's day has been rather low key to this point. He did not use the trach mask yet today, but he has been doing pressure support for most of the morning! He has napped a lot today too because his night was a little less restful. The took out his arterial line that they were using to measure blood gases which is another step in the right direction. He continues to do really well on 40% oxygen.

God has provided another blessing to me. I was made aware of a transplant house. It is housing for patients and families as they deal with transplant issues. The cost is much cheaper than the hotel and it will allow me to have groceries, do laundry and cook. It is very near to the hospital so I could walk if I wanted too. I am very thankful for this gift! Hopefully it is a place that I will feel comfortable staying.

Please pray today for Ryan's continued strength and well being. He seems to be less anxious today which is a HUGE blessing. Pray also for our care givers. There seems to be a little tension today and that makes things more difficult.

Another Good Day

Ryan has worked so hard today! After his 2 hour afternoon nap he was able to go on FLO-BI and the trach mask (the only support he was getting was oxygen) for 35-40 minutes total...20 minutes of it was on trach mask. He then continued breathing on the pressure support setting (just a little boost from the vent) for another hour and a half. He is struggling a little with anxiety, so please pray that he is able to overcome that. It is very normal for people to be anxious as they are weaning from the vent.

• Please continue to pray that Ryan is able to get the rest that he needs at night so that he is able to wean more and more each day.
• Pray for his anxiety levels to go down.
• Pray for his body to continue gaining strength.
• Pray that Ryan would realize how much he is accomplishing each day and not get discouraged (he wants to be doing more and he is already doing SO much!).

Random Update

I am actually updating the blog from Ryan's room today. The connection is touch and go, but it is nice to be sitting in here typing instead of down in the cafeteria or back at the hotel.


Ryan continues to make slow progress. He went down to 40% on the vent last night just before I left (I forgot to include that last night). He has remained on the 40% except for when they have adjusted the vent to allow him to do more of the work. He was on pressure support (he does the breathing with very little support from the vent) for 2 hours this afternoon! Yes, 2 HOURS! He kept saying he was hot, not because he had a fever but because he was getting such a workout. He was also able to do the trach mask for about 10 minutes this morning and might try again in about 1 hour. Currently he is on his regular setting and taking a little nap.


Ryan also had physical therapy this morning. They have come in at other times and done some work with Ryan, but today they had him doing exercises. He was also able to sit up on the edge of the bed for about 2 minutes (after a lot of other work this morning). The physical therapist was pleased with how strong Ryan was and she said that maybe tomorrow they would try and get him standing next to his bed!


Note: I was asked what would happen for Ryan to be reactivated to the lung transplant list because there is a little bit of confusion. Once Ryan is able to meet the walking requirements (450 ft. in 6 minutes) and anything else the surgeons require, he will be back on the list without any other testing. They will determine his LAS based on his oxygen needs and such, but he does not need to go through all of the testing that we did to get him on the list the first time. Ryan will just step back into his place in line -- probably still at #1.


If you have any other questions about anything, do not hesitate to ask! Thanks for your continued prayers!

Here is Ryan sitting on the edge of his bed. He was getting really tired, but still glad to be up and sitting. Helen (PT) said that he was holding himself up and she was doing very little work. His hair was spikey after his bath this morning :)

Sunday Update

God continues to do amazing things for us! Ryan was breathing on his own for the first time today in 3 weeks. He used what is called a trach mask. It is basically an oxygen mask that attaches to the front of Ryan’s trach and gives him oxygen that way (like his oxygen at home). He was able to do that for 8 minutes two different times today. They were able to try him on the trach mask after he passed his vent weaning this morning…he amazed the doctors yet again! (He also did 15 minutes on the vent where he did FLO-BI which is getting the oxygen through the vent with a PEEP of 5.0) Basically it means he was off the ventilator for about 33 minutes! YEAH! PRAISE GOD!

Ryan’s spirits are really high today; so are mine for that matter. I am sure that it gave Ryan a boost to realize that he could still breathe on his own – I know that I was really excited and grinning from ear to ear!

We were both able to get some sleep last night and he said that he is comfortable with me sleeping at the hotel again tonight. I figure we can give it a try and if it doesn’t work then I can try sleeping here again. It is not going to do either of us any good if I don’t get any sleep.

He does have a low grade fever today, but all of the cultures that they took yesterday are still normal. Please continue to pray that Ryan does not develop any new infections while staying in the ICU.

Prayer Requests:
That Ryan will not get any other types of infections. This becomes a huge concern the longer that someone stays in the ICU.
That Ryan’s spirits will stay high!
That his lungs and his body will continue to gain strength – it is a HUGE workout for him to breathe on his own.
That Ryan’s anxiety will remain down and that we will both be able to get a good night of sleep.

Ryan and I having a great day together!

Ryan and his Dad. Ryan breathing on his own for the 1st time without the vent (that is his trach mask) Praise God!

Saturday Update

Progress continues to be made. Ryan had another good day. He did start the day with an oxygen level of 50% (after another night of no sleep). He also had a fever for some of the day, but it has broken and his oxygen level is back down to 45%. They are checking to make sure that there are no new infections, but he seems to be doing great!

Ryan is able to sit up with the bed as a back rest. He is able to write thoughts and questions on a whiteboard and he is getting easier and easier to understand when he tries to talk. He can lift his arms up over his head and he can lift his legs up off the bed. He continues to amaze his nurses with the amount of strength that he has retained over the last 3 weeks (yes, it has been 3 weeks tonight). We work a couple times a day on different physical therapy moves to keep his body in the best shape possible.

We have had a few visitors today too. My good friend, Val, came up for the day as well as my sister, April, and her husband, Steve. Ryan’s mom and grandma came up this evening and will stay until tomorrow. His mom is going to stay at the hospital with him tonight so that I can hopefully get a good night of sleep back at the hotel (last night was awful!).

Prayer Requests:
That Ryan will not get any other types of infections. This becomes a huge concern the longer that someone stays in the ICU.
That Ryan is able to wean from the vent even for a little while tomorrow morning.
That Ryan and his mom are able to get a good night of sleep – especially Ryan; he has not slept in 2 days.
That Ryan will start sleeping well without anyone here so that I am able to get the rest that I need too.

Ryan himself would like to say: “THANK YOU FOR PRAYERS” (he just wrote that on the white board for all of you).

Real Quick

Today has been another good day! Ryan held steady at 45% and a PEEP of 5.0. They were able to take him off the vent for about 10 minutes. It was a difficult thing for him, but he held his own and they will try again tomorrow to see if he can go for longer.

He is in great spirits tonight after an afternoon nap! He was talking with me and doing some of his exercises with a GREAT attitude. He is becoming easier to understand as he gains more strength in his facial muscles. We had a good visit with his Aunt Cathy and Uncle Dave and we are looking forward to a few visitors tomorrow.

I will be staying with him for the next few nights to see if that will help with his anxiety during the night. They have adjusted some of his sedation and that has really seemed to help today. They are also putting him on Sleep Protocol which will limit the number of times he (and I) are woken up in the middle of the night.

Thanks for your continued prayers! God is at work in room 6804! :)

One more piece of good news and blessing, we were approved for a transplant grant that will cover some of the costs both pre- and post-transplant! Thank you, Jesus!

Really Quick Update

Good Morning! Thanks for your continued prayers. I am sorry that I was unable to be update yesterday. Ryan is doing well physically! His is down into the 40's on his oxygen and his PEEP is down to 5.0. They are planning on starting to wean him from the vent today! Also, Ryan seems to be stronger than people expected, he was sitting up, raising his arms and moving his legs all by himself yesterday. Our nurse yesterday said that he didn't think Ryan would be a hard patient to recondition. Praise God!

There are two big requests for today. First, that Ryan's lungs would be strong enough to breath on their own for awhile. Secondly, Ryan seems to be having some anxiety. He gets upset, frustrated, scared, and agitated. They had to restrain him over night so that he would not pull his trach out. I am going up there early today to try and help keep him calm. Pray that I have strength and patience...it is very difficult to watch him fight the vent and it is still difficult to understand him all the time.

I will update as I can...Ryan didn't want me to leave last night so I got in late. I think tonight might be more of the same, but I am praying that the Holy Spirit would fill Ryan with all comfort and peace today!

Meeting

We had our family meeting today. It went okay, the doctors admitted that this was a much different meeting than they were originally planning on having with us. Dr. Hyzy (attending) told us that while Ryan has made excellent progress in the past few days we still have a long, hard challenge ahead of us. Most patients who have been on ventilators for this long struggle to ever come off. We know that God can beat all odds and that nothing is impossible for him.

GOALS (in order):

• Get oxygen down to 40% (currently at 50% because of different settings)
• Get PEEP down to 5.0 (currently at 8.0)
• Start trying to wean Ryan from the vent for short periods of time (hoping to start tomorrow)
• Get Ryan sitting in a chair
• Get Ryan walking (need to get 450 feet in 6 minutes)
• Get Ryan off the vent (during the day at least)
• Get reactivated on Transplant List

Please pray that Ryan gets the best nurses who follow the doctors orders well! The doctors have written for Ryan to get chest therapy for 10 minutes every 4 hours. Most of our nurses have been good about this, but tonight wasn't going well. I had to talk with the charge nurse before we left, so hopefully Ryan will have a good night and get all of the therapy he needs.

Please pray for me as I am really missing Lily and Wyatt. I do not want to be away from Ryan, but I really miss the kids. I am feeling some anxiety about being away from them; please pray that my spirit is calmed. I know that they are loved and safe and having fun!

NOTE: I just want to take a moment to thank all of the people who have given to us so generously over the last few weeks! I have not had the opportunity to send out actual thanks you notes yet, but I wanted you to know that I/we so appreciate your generosity! Thank you also to those of you who have sent birthday wishes and gifts to Lily and Wyatt!

More Encouragement

Good Morning! God continues to work in Ryan's body. I called his nurse this morning and they had just turned him down to 45%! Ryan has not been on that little amount of oxygen since the first day on the vent (that I can remember anyway). He did not have a fever at all over night.

Please continue to pray for healing in Ryan's body. Please pray that others can see God working and that He may be glorified in this situation. Thank God for all he has done and will continue to do!

Your prayers mean so much to Ryan and me! Thank you for sharing with other believers and getting them to pray on Ryan's behalf.

Doing Well

Ryan has continued to do well throughout today. He stayed on 60% oxygen until about 4:00 and then they lowered it down to 55%. His fever remained down as did his heart rate.

I am very encouraged, things seem to be moving in the right direction! The doctors still didn't seem overly optimistic, but they don't know what a fighter Ryan is. I also know that my God is the great healer and he can heal Ryan at any moment! I know that they need to be realistic, but we are being optimistic!

We are scheduled for our meeting with the doctors tomorrow at 1:00 pm (eastern). Please be praying as we listen to what the doctors have to say. Pray that they will be able to see the work that God is doing in Ryan's body even at this moment. Joining me in the meeting will be my parents, Ryan's parents, brother, sister and sister's boyfriend. Please pray that we all have wisdom to make whatever decisions need to be made tomorrow...pray that no decisions have to be made tomorrow except to keep on doing what we are doing.

Lily and Wyatt Update:
The kids are with my sister for the night. Their schedules are a little off, but they are having fun with their cousins. My mom brought them in for their 2 year appointment before coming out to see me today and the doctor was pleased with how they are doing.

Lily's Stats:

19 lbs. 8 oz (less that 3%)

32" (10%)

Wyatt's Stats:

27 lbs. 8 oz. (25%)

35 1/2" (75%)

God's Mercies are New Each Morning...

After a restless night I finally convinced myself that I should call Ryan's nurse before the shift change took place. I didn't want to call because nights always seem to be Ryan's worst time of day and I was TERRIFIED of what his vent setting would be. GOD IS GOOD!!!! Ryan is down to 60% oxygen this morning and doing fairly well there. Also, his fever was down near his normal range (97/98); this is the lowest his temp has been since he went on the vent over 2 weeks ago.

I know that today could still be another roller coaster of a day, but God is the great healer! He has shown himself faithful in the last 24 hours. THANK YOU, GOD! Thank you to all of our prayer warriors, please continue to pray that the oxygen goes down and stays down.

In Need of a Miracle

We need our miracle -- NOW!

If yesterday was a hard day, I don't even know how to describe today. I woke up hopeful after a good night of sleep, but walked into Ryan's hospital room to find him breathing at 100% oxygen. I immediately felt overwhelmed, helpless, and very alone. I tried to take it all in, but I knew that things were not good if his oxygen was that high. I called his parents to let them know where he was at for the day; it was two tearful conversations. The reason his oxygen was so high was because they were adjusting his vent settings. His PEEP was and is down to 8, but he did not handle that well so they had to bump him up to 100% to help him. They also have him extremely heavily sedated so that his body can rest.

The nurse coordinator, Noel, came in to talk with me and see how I was doing. He told me that they were again adjusting his antibiotics, restarting a nebulized medicine that they were doing last week, and going to try starting Ryan on some steroids. He told me that the doctors wanted to see how Ryan did with those changes, but that I should plan on a meeting with the doctors sometime on Wednesday so that we can reassess the situation and make any necessary decisions.

Over the course of the day Ryan's oxygen needs did come down slowly (5% at a time) to 75% when I left. He seemed to tolerate the changes okay and his fever was also down tonight. The doctor did come in and talk with me around 7 tonight. I was very hopeful, but he still didn't seem overly optimistic. Their biggest concern right now is the fact that when lungs need this high amount of oxygen for long periods of time it becomes increasingly difficult to reverse the effects.

To be completely honest, I hate writing this right now! I don't want to think about it. I want to scream and cry and tell God that this is not fair! I am scared, overwhelmed, exhausted... I love my husband so much and I just wish that I could give him one of my lungs, I wish that there was something that I could do that would change things. I did tell one of the residents today, "No offense, but God can do things that you cannot." He agreed.

Ryan's dad and brother arrived in Ann Arbor around dinner time. His mom, Amanda and Mark will be arriving sometime tomorrow morning. My mom and dad will be arriving tomorrow afternoon and more of Ryan's relatives will be coming in tomorrow night.

PLEASE, PLEASE, PLEASE PRAY FOR A MIRACLE! PRAY FOR THE DOCTORS TO HAVE WISDOM AND TO SEE THINGS MORE CLEARLY! PRAY FOR WISDOM FOR MYSELF AND OUR FAMILY!

Hard Day

Today was a hard day! I was emotional all day knowing that the kids, my parents, and Ryan's dad would all be leaving today. I also knew that it would be hard to go past Brandi's room knowing that she was expected to pass away last night.

When I got to the hospital Ryan's oxygen was up to 90%. He was not that high for long, but he did go back and forth between 70 and 85% for most of the day. The 1st year resident was very discouraging too. She told me that the longer someone is in the ICU the worse things are. She also stressed their concern on Ryan's oxygen levels remaining so high. She told me that she didn't like saying such negative things about someone so young with such a young family, but that she wanted to be honest. (It is hard to tell you all this, but I want you to know specifically how to pray).

God did send an angel my way in the form of a nurse. Julie was Ryan's nurse last week Sunday and she came to see how I was doing this morning. Tonight after she was done working, she came to find me (it was not an easy task, I was sitting in a dark waiting room). She allowed me to cry and express some of my feelings. She encouraged me and told me that no one is giving up on Ryan. She told me no one can predict what will happen, but not to give up. She shared with me about another CF patient who just received his lungs a week ago. He was on a vent and in a similar place as Ryan, even a little sicker at some points. His oxygen needs were at 100% sometimes and there were days they didn't know if he would make it. He was telling her today about how much easier it is to breathe. YEAH! That is my dream for Ryan!

Tomorrow is a new day and God's mercies will be new along with it. I am praying that we can see and feel God's new mercies tomorrow!

Joy

I have said it before and I will say it again, Lily and Wyatt bring so much joy to our lives. It has been so nice having them here yesterday and today. I have played with them, eaten with them, read books with them, swam with them, gotten them dressed, napped with them and even changed a few dirty diapers. I do feel a little guilty that I am not up at the hospital with Ryan as much as usual, but both Ryan's dad and my dad are up there with him right now.

Below is a link to some of the pictures that have been taken already this weekend. Yesterday, Lily and Wyatt were sharing my water cup while both of my parents went up to see Ryan. Wyatt was so sweet with Lily; he had the cup but was more than willing to share. We are trying to limit their exposure in the hospital just so they don't pick up any bugs. This afternoon before naps, my parents and I took them over to the pool. Lily of course was a little dare devil and loved splashing in the pool. Wyatt was more content sitting next too the pool and splashing in the water in grandma's hands.

April 2008

Specific Requests

I have a little time back here at the hotel. I am waiting for my mom and dad to get back here with Lily and Wyatt; they took them out this morning so that I could go spend some time with Ryan at the hospital. It was such a huge blessing to be greeted by the Beebe Family (Don, Scott, John, Mark, and Ben) this morning! Thanks for making the long drive out on your "guys weekend" to see Ryan.

Dr. Hyzy (attending physician) came in this morning and talked with us. His greatest concern is that Ryan's oxygen needs are not reducing. He said that is what we need now most of all. Please pray that Ryan's oxygen can come down and that they will be able to start weaning him from the vent sooner rather than later. Dr. Hyzy said that they are doing everything for Ryan that they can be doing right now. He is concerned about any patient being in the ICU for so long; it can lead to a greater risk of secondary infection. [I think it is a little different with CF patients in that I think Ryan will be a permanent resident of the ICU even after he is weaned from the vent (and remember for Ryan that means during the day he would breathe room air and use the vent at night to rest his lungs). ]

My second request is not for Ryan or myself, but for the family in the room next to Ryan's. Brandi is a 25 years CF female. Her biggest issue is not with her lungs but rather with her liver (I am not sure how all of that works). I have gotten to know her mom, Pam, over the last 2 weeks. She is a sweet woman who is doing everything that she can for her daughter. She sleeps in her ICU room every night because they don't have the money for a hotel. Pam and Brandi have been at U of M for over 2 months now. Pam was told today that there is nothing more that they can do for Brandi. She came over and got me and I was able to pray with her (I think she is a believer). Her family is on there way down, they were planning to come this weekend anyway. They will have some difficult decisions to be making right now. Please pray that God holds Pam, Brandi, and the rest of their family in his hands during this difficult time.

Saturday Morning

Good Morning!

It is a joy to have Lily and Wyatt here and once they leave I am sure that I will have tons of pictures to post on the blog.

Ryan had an okay day yesterday. His oxygen was stable to up, but they did lower his PEEP to 8.0. This is the lowest his PEEP has been in quite awhile so that is a good thing! He continues to be more "awake" but it is still a huge struggle to communicate. He tries so hard to tell us things, but it so hard to understand. He is unable to write at this point, but hopefully as he gains strength we will be able to take advantage of that.

Quick Update

Good Morning!

I just wanted to write a quick update this morning because I don't know how much I will update with Lily and Wyatt here. (By the way, I am just a little excited about that!)

Ryan had a good night. He is at 65% oxygen this morning and his fever is down! He was agitated this morning, but his nurse figured out that he wanted to be turned in his bed and now he is resting comfortably. I am looking forward to a good day both in the hospital and out!

It will be a very busy couple of days. Ryan's dad is still here and will stay until Sunday. His mom is on her way for a brief visit, staying until mid-day tomorrow. Friends from church, Kelly and Scott, are stopping by this morning on their way to their spring break destination. My parents and the kids will get here a little before dinner time and stay until Sunday sometime! Ryan's friend, Scott, and his dad will be arriving late tonight and visiting with Ryan tomorrow morning. It will be good to have so much support.

Please pray that everyone has safe travels and that it is not too overwhelming for Ryan. Please also pray for me as I try and balance my time between Ryan and spending time with the kids. Please continue to pray for Ryan's oxygen levels to come down and that his fever stays down. Pray that I am able to understand what Ryan is trying to communicate to me.

Have a great weekend and Happy Spring Break to many of you!

Mid-Day Update

Today is going smoothly. Ryan's oxygen requirements have been up and down, but I am trying to take that in stride. They started him on a new antibiotic today that has shown to work against the bug he is growing -- yeah! finally!

Ryan "asked" me today why he couldn't talk. That was hard. He doesn't fully understand what has taken place over the last week and a half and he doesn't have the best memory right now, so things have to be explained more than once. When I explained about his trach he just kind of rolled his eyes. It was actually quite funny, but sad for me too. He gets so frustrated when he is trying to get me to understand something and then apologizes to me. I am not mad at all, I am just frustrated right along with him; I wish I could understand what hurts or what he needs. Please pray as we learn this new mode of communication.

Please continue to pray for the swelling to go down. They are giving him something to help with that, but they need to go slow so that his blood pressure doesn't drop. There is a difference with some of the swelling in his hands so that at least is good.

Happy Birthday, Lily Grace and Wyatt Ryan

It was two years ago that I was the one in a hospital bed. We were awaiting the arrival of our two little miracles. At 9:20 pm tonight, Lily Grace will have been in our lives for 2 years. At 9:37 pm tonight, Wyatt Ryan will have been in our lives for 2 years. It is unbelievable to me! At some times it seems as though it was just yesterday. At other times it seems so long ago. I am so thankful that God has entrusted me with these precious lives!

Happy Birthday, Lily and Wyatt! Mommy and Daddy love you!

Two Side Notes:

1. I am hoping that today is another April 3rd filled with miracles for our family! Please continue to pray that the doctors have wisdom and that we see some positive changes today.

2. Check out Confessions of a CF Husband; his wife is just got out of surgery where she received her new lungs! Praise God for the miracle occurring in another family today!

Wednesday

Overall today was a good day. When I left tonight his oxygen was at 60% and his sats were in the mid 90's.

Ryan was able to mouth some words today...he said "hi" and "I love you". Those were the two words/phrases that I understood; he tried to say more but I was having trouble understanding. That is a little frustrating when he is trying to tell me something hurts, but it is good to have him communicating.

I think most of his discomfort comes from his swelling. Please pray that the swelling starts coming down so that he can be more comfortable. The doctors did mention that there is a minimal amount of fluid on his lungs, so I am sure if they could get that off it would help his breathing too. They also talked about their desire to see some forward progress rather than seeing Ryan remain just "stable". The attending doctor seems a little more aggressive than the attending that was on last month. I am interested in what he will choose to do for Ryan.

Ryan's Dad was able to get here safely this morning. It is nice to have some company again. We are looking forward to a visit with Ryan's childhood friend, Scott, this weekend and of course seeing my parents and Lily and Wyatt is a bright spot in the next few days.

Tuesday

Today has been difficult! Ryan's nurse has not been giving the level of care that I have seen over the past week. It has been extremely frustrating and a little overwhelming. I had to talk with the unit coordinator. I truly believe that the lack of care has had a negative effect on Ryan's health today. He went from 60% oxygen to 75% oxygen and his other numbers just were not very good.

They actually ended up placing Ryan's trach this afternoon. It was scary for me because of how unstable he was today. I went downstairs to the OR waiting room while he was in surgery. The surgery was only 1 1/2 hours, unfortunately they forgot to tell me that he was done and back in his room (I found out after 2 1/2 hours of waiting total). The surgeons said that Ryan's surgery went well and that he was one of the easiest of the day. He looks so much better without the tubes going down through his mouth; he looks much more like himself.

He was quite alert after the surgery tonight and I even got a smile! He had a nurse that we have had several times. She allowed me to help with therapy tonight and I felt very confident leaving him in her care tonight. He was still at 75%, but they just wanted to have him have a few great hours.

Tomorrow is a new day! God's mercies will be new and hopefully things will start going in the right direction. Ryan's dad will be coming up tomorrow and staying through the weekend and my parents are coming on Friday and staying until Sunday...LILY and WYATT are coming too!!!!! We won't take them up to see Ryan because the doctor thinks it would be to traumatic for them, but I am sure that it will lift my spirits (until they leave of course).