Follow along and read about how Ryan spent his final days surrounded by those he loved the most... his FAMILY.

You can follow my blog at: Our life in Letters to Ryan

March 31, 2010

Counts that DONT want to come up

Yesterday, the mouth sores and cough still weren't improving much. Luckily, Ryan was not coughing nearly as frequently as he once was before. In the morning, Ryan started running a fever of 102...NOT good. The fever really has the team puzzled because they just can't get on top of this infection and figure out what it could be...

In order to find out EXACTLY what is brewing in those lungs, a bronchoscopy needs to be done:
They have been putting it off since Saturday because Ryan's platelet and WBC count are so low. They don't want to put him at risk of bleeding or getting an infection from the procedure, especially with these counts:

WBC- .2
Platelets- 11

It posses a HUGE RISK.

The pulmonary team is divided. One feels they need to be aggressive and should go ahead with the procedure. Another says, lets wait a day, give a more BROAD spectrum of antibiotics and hope this time...they get on top of it. The third Dr, who is the one we met with, feels torn...she did say though, if it were her husband, she would wait.

Ryan and I both didn't feel good about doing the procedure today. Instead, we put it off until THURSDAY. Hoping and praying that with some time, the new antibiotics will help to improve Ryan's overall health.

Since Ryan's counts were so low yesterday, he got blood products all day long. 2 units of red blood and 1 unit of platelets. They did labs after all the transfusions and his hemoglobin went up from 7.9 to 9.6, but his platelet count DROPPED!
It went from 11 to below 5!


He needed more platelets immediately and received more last tonight. The nurses and I kept a VERY close eye on him, to make sure he didn't bump into anything or fall.
(Platelets help your blood clot)

Meanwhile, Ryan received a blessing... something we are very grateful for.

After checking his counts after the 2nd platelet transfusion, they barely climbed from 5 to 7. So in the middle of the night, he received more. His platelet count today was 15.

After the 3 transfusions, his counts still aren't great, but 15 is not NEARLY as dangerous as a count of 5.



Ryan had a better day today. He ate a little breakfast, showered and was even awake enough to check the last two posts (and comments) on the blog. His mucositis, cough and pneumonia are all about the same. The team is HOPING his white blood count starts the upward climb very soon. They feel as his WBC rises, his mouth and pneumonia will improve greatly!

The team also feels that all the different meds may be doing their job and getting to that infection. Therefore, they feel the bronchoscopy may not be necessary, especially with his platelets so ridiculously low. This afternoon, Ryan had a chest x-ray done to check on the pneumonia. We should get those results back tomorrow...
At this point, there is NO action plan because Ryan's counts are ALWAYS changing.

Being in the hospital is no fun, but Ryan continues to be hopeful and still manages to be silly and make me laugh.

Before I left today, I asked him what he wanted for Easter. I think you know the reply:

"I just want to be out of here"

Keep up the fight Ry, and we'll keep up the prayers!


March 30, 2010

Hanging in there...

Things are still about the same.
The mucositis is bad, the double pneumonia is hanging around and the cough is really thick. Ryan's WBC is still low, but rose to .2 today!
Yesterday, he was having trouble with urinary retention, so he didn't want to take as many pain meds. He was fine as long as he was sleeping, but whenever he woke up... poor mouth, poor Ry!
Since the pain is still very intense, and to help with urinary retention, they are changing up Ryan's pain meds. They also decided to start the PCA pump:

So now, instead of asking for his pain meds... Ryan just pushes this little button:

and some medicine is pumped right into his IV.
It is so hard for him to eat/drink ANYTHING. If he can get something down (when the pain is somewhat under control), he coughs SO much. When it DOES go down, sometimes it comes back up a few minutes later (from coughing...not nausea).
Luckily, he has this HANDY DANDY tool:
It really helps with getting all the mucus and sloughed off skin out of his mouth/throat.
After breakfast, it's usually time to take a shower. The IV has to be covered to keep any moisture out.
So fun to take a shower with tubes and coverings all over you....



NOT anymore!

The team felt it was best to get rid of the IV and put in a PICC line.

Here's a look:
It is somewhat similar to the the central lines Ryan once had, although this is a smaller line and MUCH less invasive.

Ryan getting his veins checked

There it is...the PICC line before it is inserted
The procedure went GREAT and Ryan is enjoying having his new line.
Even though Ryan isn't feeling great, he is doing a little BETTER than yesterday. He was able to go for a walk today, the first time since THURSDAY!
And through it all, he still manages to crack a smile


March 27, 2010

Fast tomorrow

The Fellow came in this morning and said they had some results back from the CAT scan.

Ryan for SURE has pneumonia in the left lower lung and possibly some starting on the right.

The pulmonologist later came in to discuss what happens biopsy or not?

Ryan's platelets are still low and they worry about doing anything that can cause bleeding. They have decided to hold off on the biopsy until tomorrow and see if any of the new antibiotics will help.

They are getting the cough under better control and managing the pain very well. He is currently eating breakfast (YAY) and feeling MUCH better then yesterday (WaHOO!)

He will receive another unit of platelets today

We are going to be doing a special fast for Ryan tomorrow, please join and spread the word!

(LOTS of pictures below from our trip to Star Valley )

March 26, 2010

Good times...

I thought it was time to post some FUN, HAPPY pictures.
If you're not in the mood for looking at beautiful scenery and smiling faces, then this post isn't for you.
I'm warning you now... its gonna be a LONG post.

We got on the plane bright and early- 6am. It didn't matter though, everyone was so excited to go to Grandma and Grandpa's house in Star Valley, Wy.
The kids traveled wonderfully and sitting in the front row was an added bonus. Yay for short flights and happy kids.

We were on a tiny plane, so we stepped off the plane right onto the tarmac. Max was in AWE because when he got off the plane, this rolled up right next to us:

Little helper:

Once in the car, we had a 3.5 hour drive home...

Half way home, we had to slow down because we got caught in the middle of a cattle drive.
I ONLY took a picture for the sake of this blog and YOUR viewing pleasure

This guy was probably thinking, "Ugh... tourist"


Once we arrived home, the kids wasted NO time in getting dressed so they could go outside and play. We couldn't have asked for better weather during out stay.

Ryan enjoying the cool winter weather

Does this suit look familiar?

L.O.V.E it!
Throughout most of the trip, Ryan wasn't feeling too good. He had a bad cough that kept him up at night. During the day he was VERY tired and sometimes feverish, so he spent a lot of time sleeping. He was able to rest much and play little. However, from the front room couch he could look out and see this:

Yes, choosing to leave may have been somewhat rash, but it was therapeutic and peaceful. Despite the fact that Ryan wasn't able to get out and play all day like he hoped, he had a great time visiting with family and friends...
Sadly, I didn't take pictures of everyone we were able to visit.
Thank you to EVERYONE who came from near and meant so much- THANK YOU!
The kids had a BLAST sledding and I LOVED being able to capture their joy through the camera

*So MUCH fun*

Ryan got to feeling well enough to come outside for about 15 minutes to pull the kids behind the 4 wheeler.
What a happy RY...

...and Excited kids

Then Ryan let each kid push the gas during a ride

Oh, they loved EVERY minute of it!
Poor Leo, Hallie was bossing him around 24/7. I felt so bad for him, that I went out and bought him some YUMMY biscuits so I could kind of compensate for his "torture"
I love the fact that Ryan's mom saved these SWEET moon boots- SO Napoleon Dynomite

We headed into "town" which is about 10 minutes from Ryan's house... good ole' Afton, Wyoming.

Here is the world's LARGEST Elkhorn Arch:

I was excited to come here:
I love coming here to look at all the toys. You can get good toys for much more reasonable prices. Since the kids were so good traveling, we let them each pick out a toy.

Chillin' at King's while I looked around

Then we went to Rocky Mountain Seafood for dinner- YUMMMmmmm
Max was SO excited to help Grandpa plow the driveway
and I enjoyed making some homemade granola
Ryan stored up enough energy to take Max for a short 4 wheeler ride

...and succeeded at getting it stuck

Max wearing Ryan's jacket from when he was little:

The kids were SO excited to see their cousins from Idaho. They packed so much into the 2 days they saw eachother: crafts, cooking, tv watching, fake nails, GINORMOUS fort making, snow play, hot tubbing and all the laughter (and sometimes tears) that come with visiting cousins

Braiden getting Uncle Ry with his mini light saber/sword
Ryan's little brother, Mitchell also came up with a "friend." It was SO nice to meet his "friend" and see how much the kids LOVED her...
Thank you M & S for being so much FUN as you entertained the kids!

Here we are looking SILLY...
Mitchell said if we shook our face really fast and took a picture it would make our cheeks look crazy. Ummmm... I don't think our cheeks looked crazy, more like our entire face!

LOVE these two guys:
Oh how hard it was to pick from over 300 pictures for this post.

I hope you all enjoyed a little glimpse of the fun we had on our short trip to SV



Ryan had 2 units of Red Blood and 1 more unit of platelets. His chest X-ray came back positive for Pneumonia, not to worry, some of the doctors feel it is only a VERY mild case. They aren't too concerned because he is currently on so many antibiotics that at least ONE of them will take care of it.

Food/drink wise, he barely got anything down earlier today. They are trying different combinations of meds for pain management. Although, it isn't always the sores that keep him from eating, but the THICK mucus in his throat. The mucus is caused by both his cough/cold and the mucositis.

Tonight, he was finally able to get down one of these containers of tapioca pudding
We made these containers full of thinned out, HIGH CAL soups and puddings. We keep these at the hospital because sometimes the hospital food just isn't very tasty or mouth sore friendly.

If Ryan can't increase his calories in the next few days, he is going to be put on IV nutrition (TPN). Since the mouth sores are SO bad, the doctors said there will be NO chemo on Monday. This will allow Ryan's counts to come up and his mouth to heal.

The kids stopped by today and were eager to see Dad

Ryan's mom called tonight and said he was getting a CAT scan of his chest to check his lungs. We should hopefully get those results tomorrow.

Ryan is fighting the fight and fighting HARD. I am amazed at his strength through all of this and cannot help but think of this scripture, "...blessed is he...that is faithful in tribulation. For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand." Doctor and Covenants 122:5&9

How grateful I am for his example of strength and courage, and most importantly, for a loving Heavenly Father that hears and answers prayers.