Lung Transplant Status

This is the email that I received from Jenni at U of M this morning. I just wanted to give everyone the latest information that we had. Thanks for your continued prayers.

Ryan was discussed this morning and everything looks good so far. We do need to wait for the heart cath tomorrow to make a final decision but things look good. One thing they were concerned with was his bone density. Is anyone following this for him and is he on any therapy for his bones?

Ryan's lung allocation score (LAS) will be adjusted every time that he sees Dr. Ojo and has new testing done. The only thing that will be adjusted in between visits is his oxygen requirements. As that goes up it will affect his score and we ask that he call us and let us know if that level changes.

Once I have his heart cath numbers I will have a better idea of where he will be on the list. I will let you know how things look later this week. Please let me know if there is anything else I can help with.

Prayer Request

Tomorrow is the day that Ryan "goes" before the transplant board (as far as we know). We won't know the results until later this week after Ryan's heart cath. Please pray for us to be free of anxiety as we anticipate Friday and the decision of the transplant board.

Also, we will be heading out to Ann Arbor tomorrow night. The kids will be staying with my parents for the time that we are gone. The heart cath is scheduled for Wednesday at 9:30 am. The procedure itself will only take about 1 hour. The recovery time will depend on the "way" they do the procedure. If they go through the jugular the recovery will take only about 30 minutes; if they have to go through the artery in his groin, recovery will take 4-5 hours with Ryan laying flat on his back (which is very difficult for him and his breathing). Please pray that it is possible for them to go through the jugular so that the recovery will be easier for Ryan (and shorter for both of us :)).

Thank you to everyone who is planning on helping us move on Saturday. We are planning on starting at 8:30 am. I will have donuts and pop available. The move should not take more than a few hours. We are so blessed with all of the support that we have through our church family and my family here in MI (and all those who offered to come up from IL).

Returning to Normal

Ryan came home today -- yeah! He is feeling okay, not great, but okay. The kids were so glad to have him come home (so was I for that matter). We are still scheduled to head to U of M Tuesday night for the heart cath on Wednesday and the move is still schedule for next week Saturday.


We had some fun this week while Ryan was gone. Lily got her first official haircut. She was quite proud of herself sitting in the little chair with the cape on! :) Wyatt had a haircut that morning as well, but was not quite as excited about it (he HATES haircuts).

Before, during, and after shots of Lily's 1st Haircut! Heather put cute little pigtails in her hair after the cut was finished.

Lily and Wyatt are both excited about "spring". They hear the birds chirping and they both do their sounds and motions for birds. They also love sitting at the slider and watching the squirrels climb in the trees...they will be disappointed next week when we move and the trees are a lot further away.

Watching the squirrels.

Lily thought that she needed a snack yesterday afternoon :)

The Next Phase

Ryan is feeling much better and they are planning on discharging him on Friday. He will be coming home on IV antibiotics, probably for another week or two. It will be nice to have him home!

His right heart cath is scheduled for next week Wednesday morning at 9:30. Ryan and I will leave on Tuesday night so that we don't have to get up so early this time. I think it will be another long day, with most of it being a recovery process for Ryan.

I have been emailing back and forth all afternoon with Jenni (coordinator at U of M). She has now received all of the test results from Spectrum and the only thing that we need is the right heart cath. I asked her when Ryan would be presented to the transplant board and she said that it would probably happen on Tuesday (3/11). They would assess everything and put a "hold" on it pending the results of his heart cath. The doctors would then look at the results of the procedure and she would be letting us know by the end of next week about his listing.

It is really overwhelming to me to think that we are moving from the evaluation process to actually being listed. I go from feelings of relief to feelings of anxiety. I am so glad for God's strength and grace to help us get through this next phase of life.

My Ramblings....

I was looking at the blog this morning and realized that in one short month Lily and Wyatt will turn 2. The past two years have flown by with many different challenges, but they have also been filled will tremendous blessings.

It is weird to think back to what was going on two years ago:

• We were living in Illinois
• I was 7 months pregnant :)
• I was working at Westminster Christian Middle School teaching math
• Ryan was working at Ameriprise Financial, commuting 2 hours each day -- ughh...

I miss teaching, but not nearly as much as I would miss being away from Lily and Wyatt everyday. I do not miss Ryan working at Ameriprise. There are parts of being pregnant that I miss, but many more things that I don't :). As far as living in IL there are things I miss: our friends and family, our house, the "area" we lived, Dr. Boas as Ryan's doctor.

I would not trade those things for the opportunities we have here in Michigan. I love having my parents close by. I am glad that Lily and Wyatt have the opportunity to grow up knowing their cousins. I don't know what I/we would do without our church or small group. The insurance that Ryan gets from the state of Michigan is a blessing beyond measure. Ryan's job here has been so great and he loves it!

I am so thankful for all the blessings that God has brought into our lives over the past 2 years.

HAPPY BIRTHDAY, RYAN!

I just wanted to say Happy Birthday to my wonderful husband! He unfortunately is spending his birthday in the hospital, but he is feeling a lot better today. Ryan is a great husband and dad. He is a great provider for our family! He has a fun sense of humor and has taught me to have a better outlook on life.

Friday Update

I just wanted to update to let all of you know what has been going on.

Ryan is making improvements in some areas, but is still not feeling great. He is struggling to get back his energy, but we figure that is from the Influenza and the pneumonia. He has also been having some issues with vomiting. They gave him some anti-nausea medicine this morning and that has seemed to help. We are actually hoping that he can get a GI consult out of this which is one of the things Dr. Ojo wants him to have done.

Ryan has been able to have all of his "procedures" done at Spectrum that he needs to for the lung transplant. He does have to get a Hep. A and B vaccine yet, but that is a 3 shot course over the next 6 months and it doesn't need to be completed in order to be listed. He should get the first round today or tomorrow. The Pre-Transplant coordinator is setting up his right heart catherization for the week of March 10. I will be so glad to have all of the "requirements" out of the way.

For those of you who have asked, Ryan is able to have visitors now. He is not contagious anymore, although I know there are other cases of Influenza on his floor. He does have a computer at the hospital so you can also email him. If you would like his phone number just let me know.

Things Happening At Home

Here are couple of pictures from the past few days while Ryan has been in the hospital.

I painted Lily's toe nails the other day for the first time. She is very proud of them! She sat perfectly still while I painted them and did not touch them at all while they were drying. I love doing girly things with her and I cannot wait until her hair gets a little longer. (I tried pigtails the other day but her scalp started turning red. Oops, a little too tight!)

Each morning Lily is ready to get down from the table before Wyatt. She will then walk over to Wyatt's chair, climbs up on the spindle, and Wyatt will "feed" her some of his cereal. I love how he has his hand on her back. What a protective big brother. :)

Moving Day

I have been asked by several people when we are actually moving. I was able to find out from the landlord that we will be able to move into the other townhouse on the 15th of March. If you are interested in helping that would be GREAT!!! Thanks so much!

Today's Update

We are a little frustrated today. It seems like the doctors at Spectrum are lacking in communication skills. They don't talk to each other and they seem to have a hard time talking to their patients. Ryan's nurse told him this morning that this is a frustration that the nurses also have with this particular practice of doctors. Ryan had a different doctor (from the same practice) this morning who could not answer any of Ryan's follow up questions because he didn't know anything about what Ryan was asking. I tried contacting Dr. Ojo this morning to get her opinion on things, but unfortunately she is out of the country for the next few days.

We did learn that Ryan has pneumonia so it is good that they were continuing his antibiotics from the ER on Friday night. He woke up several times in the night sweating and having severe headaches, but the doctor had no insight into those. I know that Ryan would like to come home in the next few days, but I don't want him here with unexplainable symptoms...it is just too scary.

Ryan was able to talk with his boss today and get some scheduling things worked out. He will be working Mondays, Wednesdays, and Fridays in the office from 10-4 and Tuesdays and Thursdays from home. Hopefully this will be a good schedule for Ryan and please the doctors as well.

On a side note: We are planning on moving sometime in the next month into a different townhouse. It is in the same complex, but it has 3 bedrooms with one being on the main level. There is also a 3/4 bath on the main level, so Ryan will not need to do the stairs at all. It will be so nice the have a playroom/spare room upstairs for the kids and out of town guests. The backyard is a lot bigger too without water so close. I am sure that will be nice for the kids and I this summer. It will be a whirlwind over the next few weeks as we try to prepare for a move.

Health Update

I have received several emails regarding how things are going. Ryan is still hospitalized. They started him on Tamiflu on Saturday and he started noticing some improvement late Sunday afternoon. The doctors are keeping him on the antibiotics that were started in the ER Friday night, so he had a PIC line placed on Saturday. We are still unsure of when Ryan will come home, but we are thinking that this might just turn into his "tune-up" although it would be 3 weeks early. One good thing is he might be able to get some of the tests/procedures done for U of M while he is hospitalized. Ryan did wake up this morning with some "weird" complications: disoriented, sweating a lot, and the nurse was concerned about his breathing. They ordered another Chest X-Ray and the doctor thought that is looked worse than the one that was done Friday night in the ER. I am not sure what all of this means and Ryan thought that it might be from the sleeping pill that they gave him last night. The doctor said that we would take it day by day.

The kids and I are doing well. We have all been feeling "yuck", but we are also on the Tamiflu. I did take the kids into the doctor this morning and he said that Lily just has a cold and that Wyatt has some symptoms of croup. They were both running a fever even though they were on Tylenol, but he was not overly concerned about that. He did not think that either of them had the actual flu, but was glad that they are on the Tamiflu.

Thanks for the prayers! I will try and keep you updated.

Ryan

I just wanted to let you know that Ryan is currently in the hospital (Grand Rapids). We went to the ER last night after him feeling really sick all day yesterday. It has been confirmed that he has Influenza A. They are starting him on Tamiflu and keeping him in the hospital for now (I think this is because he is considered high risk with the flu). I have also been started on Tamiflu as a precaution and the kids will also begin taking it soon too.

Feeling Overwhelmed

Early this morning Ryan, Laurel (his mom) and myself headed out for our big visit to U of M.

Our first appointment (8:15) was transplant class where we met with the post-transplant coordinator, Cathy. She explained all of the ins and outs of transplant...there was so much information coming at us.

At 10:00 we walked over to the University Hospital where Ryan had a blood gas (very painful) and did his 6 minute Hallwalk (he must always be able to walk 450 ft. during this walk with as much oxygen as he needs -- he exceeded the 450 ft. by a lot this time, but as transplant gets closer it will become more difficult).

After the Hallwalk, we went back to the Transplant Class. We met with Jennifer, the pre-transplant coordinator; Dr. Pickens, one of the surgeons; and Lisabeth, the social worker. Most of the information given to us was a repeat of stuff we had heard in the earlier session, but it allowed us another chance to ask questions as well as meet more members of the transplant team.

Around 12:15, Ryan had a Chest X-Ray done and then we went to the cafeteria for a quick lunch.

At 1:00, we went to the Pulmonary Clinic where Ryan had his Pulmonary Function Test (PFT'S). We squeezed in a visit to the Blood Lab where Ryan had 15 vials of blood drawn.

At 1:30 we went back to the Pulmonary Clinic where we met with Dr. Ojo. She is Ryan's "primary" doctor at U of M. She is very supportive and is a great source of information, but this was probably the most difficult meeting of the day. She said that Ryan really needs to cut back in the amount of time that he is working in a week and focus that energy in exercise and in life. This was hard to hear -- Ryan is such a great provider for our family! He does not want to lose that role -- it will be a difficult balancing act as we try and figure this out. She also wants Ryan to continue going to Pulmonary Rehab twice a week until he actually has his transplant. This would be a huge benefit to him in his transplant recovery, but it will no longer be covered by insurance after next week.

3:00 brought us back to the University Hospital (we went back and forth for almost each visit). Ryan had a Lung Vent. This was an hour long procedure done to measure which of Ryan's lungs is healthier -- this will have a major role in deciding which of Ryan's lungs to transplant first.

At 4:30 we were back in the Taubman Center for an EKG. This was our last "event" for the day. Thankfully for Ryan this was a very quick procedure and they allowed him to stay in the wheelchair.

We were in the car at 5:00 and home by 7:15. This long day for me was completely grueling for Ryan. Not only did he have to be subjected to several uncomfortable procedures, but he was and is not feeling well today.

Key Information:
- Ryan needs to have a right ventricle catherization and meet at GI doctor at U of M before he can be listed for transplant. He has several tests he needs to get done here as well. He will probably also need to have his sinus surgery done at U of M as well.
- Once listed for transplant, we will not be allowed to travel more than 4 hours from the hospital without Ryan being put on "hold", meaning if his name comes up he would not be called. Ryan will also be put on "hold" during any hospitalizations not taking place at U of M.
- The wait for the transplant could be as little as 2 days and maybe up to 2 years.
- Information that listing goes by: blood type, size, and Lung Allocation Score (determined from all of the different tests).
- Ryan will have a minimum of 5 broncoscopies in the first year.
- Time in the hospital due to actual transplant will be between 7-14 days if all things go smoothly.
- Ryan will be on 3 medicines for the rest of his life to fight rejection.

I know that I am missing important information, but I am tired and it has been a long day. Both Ryan and I are very overwhelmed with all of the information that has been thrown at us today and we will probably need a few days to process it all. Please feel free to email us with any questions, but if possible give us a few days to figure things out before calling. We really appreciate the prayers of our family and friends! We would not be able to go through this without your support!

New Picture of Lily

Here is a picture of Lily from the weekend. Auntie Amanda had gotten roses for Valentine's Day and Lily loved smelling them.

Weekend Fun

We had a great trip to Illinois this weekend! We were able to spend a lot of time with family which was nice. The kids really remember people now and enjoy playing with everyone! Grammy had new crayons and coloring books for Lily and Wyatt which they loved. Grandpa Steve had new Play-Doh and accessories to play with out at his house...not sure who had more fun with that, kids or adults. The roads were not great on the way home yesterday, but we made it home safely and the kids did okay thanks to my sister's DVD player.

We got home late yesterday afternoon with very little napping in the car. To help get us to bedtime without complete meltdowns we played with tubbie finger paints. The kids were a little unsure at first, but ended up enjoying themselves. :)

New Update

We are currently packing like crazy people to head to Illinois this afternoon for the weekend. I wish weather people would make up their minds! :)

Wyatt and Lily Showing Off

Lily and Wyatt were being silly tonight and I was able to get some of it on video. Normally when they are "showing off" they will not do it for the camera, but tonight they were eating it up. Hope that it makes you smile! (To those of you in Illinois: hope this helps a little.)

More Winter Weather....Ughh

Unfortunately, winter weather is once again changing our plans. We are supposed to get a huge winter storm here on Sunday into Monday so we will be unable to go to Illinois. (Of course now that we have changed our plans the weather will be great!) We are really disappointed that we will not be able to spend time with our Illinois family and friends this weekend! I am glad that Lily and Wyatt are not old enough to understand that we were going somewhere fun and now we are not....I am sure next winter will be a different story.

We had a fun day yesterday for Valentine's Day. Lily and Wyatt were spoiled. Ryan had me pick up some bath finger paints for the kids...we are looking forward to using them in the tubbie! They also got new cups from Daddy: Lily got a Bug Cup and Wyatt got a Monkey Cup. Grandma and Papa got the kids some new toys too. Wyatt got a remote control truck (for 2 yr. olds) and Lily got some Potato Head accessories and a shape puzzle. They also both got a Valentine card in the mail and they have been read SEVERAL times!!!

My Little Valentines! (Wyatt didn't want his picture taken)

Just For Fun

The kids have not left the house in over a week, so I am hoping to get out with them today. They both seem to be feeling better -- YEAH!

We are planning a trip to Illinois for the weekend as long as the weather is going to be good.

Please be praying for Ryan today...he is working all day and then teaching his first class at church tonight (his class was cancelled last week).

Above are a couple pictures I have taken of the kids over the last few days. I hope that you enjoy!

Art Work 101

We continue to explore different art activities. Today we made sticker collages. It was interesting to watch the kids "design" their collages. Wyatt put most of his stickers on top of one another while Lily spread her stickers out all over her paper. Lily and Wyatt both seem to love our art time and get very upset when it is over. Wyatt loves painting, but Lily prefers to draw with crayons or colored pencils. We did the window markers again this morning since Ryan was home to be able to help. We had to fill the bathroom sink with soapy water to let the kids play with bubbles and get the "washable" window markers off their hands. I am hoping to soon get some bath finger paints and the all important playdoh.

Art Work 101