13???

Where has all of the time gone??? I can't believe I have a teenager living in my home. This young man has brought us so much joy. Ryan is a fun, loving, caring individual. He is smart and has so many hopes and dreams. He knows where he wants to go to college, yet he is just barely starting 8th grade. Ryan is funny. Ryan is a good friend.

We awoke on Ryan's birthday to our sidewalk decorated with chalk. Happy Birthday Ryan was written everywhere. He felt so special.

Ryan had wanted a party with his friends, but since we had been home less than 24 hours from the hospital he still wasn't feeling up to doing anything. He did have a couple of friends come over and spend a few hours with him visiting. The visit was great for Ryan's spirits.

Around lunch time our good friends the Williams family came to wish Ryan a Happy Birthday. We don't have too many true friends, but Ben and Emily are definitely true friends. When Ryan was in the hospital when he was a baby, they shaved their son's head when Ryan began chemotherapy. We still have the picture of Evan with a bald little head in a picture frame that says "You Are My Sunshine". They are so special to us, and we loved having them come to wish Ryan a Happy Birthday.

Here are a few things Ryan received for his birthday

Mustache and Beard

Crown, Sword, and Awesome Glasses
Vampire teeth, Bling, a Kazoo, and who knows what else - 13 things for a 13-year old

The Lomax family also brought Ryan a bag full of goodies. He received some candy, a fun card game, and origami paper. I know there were other things that I have missed, but I didn't write them down.

Ryan had a great day. His appetite wasn't that great, but we were able to keep him medicated and happy.

Happy Birthday Son. You are an amazing young man.

Lung Biopsy - Day Two

I woke up at 5:30am anxious to get to the hospital. I knew that I had to clean my room before they would allow me to check out. The walls were paper thin, but I didn't want to go back to the Ronald McDonald house just to clean the room. Once I got to the hospital, I wanted to stay at the hospital.

I got up at 6am and showered. One of the items on the check-out list was to reline the trash can. You could get the liners at the front desk. I did not know if there would be anyone at the front desk that early, so I was very careful what I had to throw away and carried it all with me. I had heard the neighbors just as I was getting out of bed so I went ahead and vacuumed the room. I hoped they didn't hate me. I'm pretty sure the lady that I checked out with hated my guts though. She was NOT happy that I had vacuumed that early in the morning. Oh well. It was done, and I checked out.

Ryan had an X-Ray scheduled early in the morning. Nothing had been done before I arrived, which is what I had expected. Brett's report for the day was that Ryan slept well - I'm so glad. Brett even got some sleep himself. We were worried that he wouldn't be able to go to sleep because he slept all day, but thankfully he was able to drift of and get some much needed rest.

Shortly after 8am we took Ryan for the X-Ray. He still had his chest tube in and he was still feeling pretty rotten. The nurse had told me that once that tube came out he would feel 100% better. I didn't believe her. He looked miserable.  During the X-Ray process he dry heaved again. Poor little buddy didn't have anything to throw up.

The X-Ray looked great so the decision was made to remove the chest tube. It took a while before anyone came to remove it, but the nurse was right - as soon as that sucker came out, Ryan perked right up. I couldn't believe it.


Ryan has an amazing friend  that came and visited. We are grateful to the Rockwood family for coming. Sydney and her friend also came up to visit. For some reason I didn't get any pictures of that.

We spent the rest of the day resting and getting Ryan to eat. He wanted a steak so bad, so that is what he ordered for dinner. I was surprised that he ate most of it as up until that point his appetite had been nonexistent.

As we were leaving the hospital on day two, we opened the door and a lady was standing there with her dog. She asked if we wanted to participate in 'dog therapy'. Ryan loves dogs so we agreed. Below is Liberty, the big black poodle. She just laid on Ryan's bed and he played with her 'fluffy' hair.

By 7:45pm we were walking out the doors of the hospital. It is always good to be going home.

Lung Biopsy - Day One

With the new revelations in Ryan's health, the doctors decided the best course of action was for Ryan to have both a bronchoscopy and an open lung biopsy. Our scheduled date was August 12th, and since two doctors had arranged to perform his procedures, we were the first appointment of the day. The nice thing about having two doctors perform procedures at the same time is that there is very little chance that you get bumped as they are working with their schedules.

We were asked to be at the hospital at 6:30am. That means we had to leave our house at 5:30am. Sydney stayed the night at her friend's house. She was thrilled at that because we do not allow sleep-overs at our house so the thought of being able to be with a friend was thrilling to her.

We woke up at 4:45am so Brett and I could eat breakfast and Ryan could have one last drink before being without food or drink for the surgery. We made it out of the house just a bit later than 5:30. I hate being late, but it turned out that it didn't really matter as there were probably 10-ish other patients in the waiting room when we arrived shortly after 6:30.

I tell you, there is fun to be had in the surgical waiting room. :)

If I ever design a children's hospital, I'm going to make sure there are clothes of all sizes. Ryan is a skinny little thing, although he's not a toddler anymore, and he's not the size of an adult. It seems that every surgery he's ever had he either had to wear toddler-sized clothing that fit in the waist, but were capris, or adult-sized clothing. This time they gave him the adult-sized clothing. I think I could have probably climbed in the pants with him.

Once we were called back to speak with the anesthesiologist, Ryan was given a warm blanket from the blanket heater (in the background....I need one of those at my house), and he was able to play a video game.

I have to say I was very pleased with the anesthesiologist. He was very personable, and spoke to Ryan as if he was the most important person there. I appreciate that.

The surgery lasted just over an hour. We were pleasantly surprised when the surgeon, and the pulmonologist came in so soon. We were equally pleased when they told us that Ryan was doing SO well that he did not need the PICU. I for one was very grateful for that.

I am usually the one that sees Ryan straight after surgery. A lot of that is because I am the one that takes him most of the time to the Dr because Brett is working. This time though we decided, or rather I decided, that Brett needed to be the first one to go back and I would go when I was allowed. We waited almost exactly 40 minutes from the time the docs came in until they called for Brett.

Once he went back I went back to my seat and waited for my turn. There was a lady there asking all kinds of questions about why we were there. I suppose it is natural to be curious, but I did not like the curiosity one bit.

Probably about 15 minutes or so after Brett went back the phone rang in the waiting room. The conversation ensued something like this:

"Surgery waiting room this is Kathy."
Pause
"Great, well, send dad back and we'll go ahead and send mom in."
Pause
"Oooohhhh. Ok then, we'll go ahead and send mom in."
Click
"Will the mom of Ryan Berger please come to the desk, we are ready to take you back."

I walked back to the waiting room to see this....

and this

I then received the low down on both patients. Brett had passed out and when he came to, he had thrown up. The nurses also said that he had a seizure and they had paged a doctor, or asked for a doctor to come in and assess Brett. They wanted to make sure that we didn't need to take him to the ER. Thankfully the closest doctor did not think Brett would need an ER visit. His convulsions were the result of the low blood pressure when he passed out. What a relief.

I of course did what any good wife would do - I laughed. Poor Brett. 

Little Ryan was laying there hoping for more pain meds. His chest tube was causing some pretty excruciating pain. He could not get any other meds until we could make it to his room. I was ready to get him to his room, but we had to figure out what to do with Brett. Our room was not big enough for two beds so they wanted to put Brett in a wheel chair. 

They brought the wheel chair in and put Brett in it. The movement caused him to throw up again. The nurse kind of freaked out a bit and they took his blood pressure again. It was within normal range so we took Brett away in the chair. I can't remember how many more times he puked -- maybe two? At any rate, he felt terrible for most of the day and he and Ryan slept the day away. 

By night time the new nurse was insistent that Ryan walk to her desk. I didn't think that would happen, but we had to get him up and at least try. We helped him to the rest room, and he barely made it around the bed before he began to dry heave. There would be no walking to any desk tonight.

I left Brett and Ryan for the evening. I was able to go to the Ronald McDonald House that was just a couple miles away. We were unsure if Ryan would be home the following day so we decided that it was most important that I get a good night's rest as I would likely be the one that didn't sleep the following night if we were in the hospital.

It's All About Trust

There are times in life when one must slow down and regroup. Just one month ago we marked the one year anniversary of Sydney's diagnosis. She isn't thrilled about having to revisit all of those memories. She keeps telling me that she wants to feel "normal". I wish I could help her feel normal, but her new normal is that of a diabetic. The days of being able to eat, drink, and exercise without thinking of blood sugars are now over.

When Ryan was diagnosed with Severe Combined Immunodeficiency Syndrome (SCID), I was a young mother that was very naive. Walking into the unknown with him was not a problem because I didn't know any different. I remember very clearly asking the nurses how long all of 'this' would go on. Their answer was "a very long time." This 'very long time' virtually ended for us on February 28th 2003 when we got the news that Ryan's immune system had completely reconstituted and he no longer needed medications.

In time we resumed a 'normal' life. We introduced him into the outside world, wiping carts down with clorox wipes and getting crazy looks and comments from those around us. We were ahead of our time.

It is dangerous to get into a comfortable way of life. One year ago we were comfortable with our little family of four. We were stripped of that comfort when Sydney was diagnosed with T1D. Days turned into weeks, and weeks turned into months. While I do not claim to be an expert on diabetes, I am surely still learning, I began to be comfortable with our newfound life.

At the end of March Ryan told me that he was coming down with a cold. His symptoms began on March 22nd - scratchy throat, run down body. By the following Tuesday Ryan had a full blown cough. The cough was different than most coughs so I took him in to the Dr. We were sent home with some cough syrup with the instructions to return to the office if symptoms worsened. By Friday March 29 Ryan's cough sounded like that of 'whooping cough'.  I waited to take him in because I feared that if I did I would be told that it hadn't been 10 days so it was likely just the same cold and we would need to keep watching it. We kept him home from church on Sunday and on Monday morning I had heard enough of that horrific cough. I called the doctor and they had an appointment at 3pm that afternoon with our regular doctor, or I could take him in right that and be seen by the other doctor in the office. I opted for the earlier appointment as Ryan's cough was taking his breath away.

When we arrived at the doctor's office I requested that they please do a Pertussis test on him. I was declined that test as they said 'everyone else was negative' so they offered an antibiotic that would treat the cough. Ryan's symptoms did not get better. They worsened. On April 15th we returned to the Dr for his well-child check. Because it was a well-child check our Dr could not do the diagnostic tests (thanks US Government, you're the best). We returned on April 16th and the tests were performed. Ryan was diagnosed with pneumonia, and pertussis. Yay us. He was then placed on 2 antibiotics, and an inhaler steroid, with albuterol as needed for shortness of breath.

On May 16th Brett took Ryan back to the Dr for a follow-up visit. His chest X-ray was repeated and I requested PFTs. His spirometry was lower than expected so we were referred to a pulmonologist. I had sent Brett to the Dr with the instruction to request PFTs, so it was no surprise that we were referred out to a specialist.

On June 14th we took Ryan to Primary Children's to the pulmonologist for testing. What we found shocked all of us. Ryan's lungs were now functioning at 67%. Ryan has since had several more tests - CT scan, echocardiogram, and most recently an open lung biopsy and bronchoscopy. We have yet to receive the results from the lung biopsy, those will take several days to return. Our future is now unknown with our little guy.  I have refrained from putting this out there because Ryan wanted to keep things quiet. I have found though that even when you don't want your life 'out there', if you tell the right person, thinking that your confidence will be kept, you'll be surprised by how quickly news spreads. Ryan is now ready to share his story. He's scared. He's afraid that his lungs might hurt. He doesn't know how to feel. Sydney is scared.

I have many emotions. We have a history with the hospital in Salt Lake that is not a pleasant history. Without getting into details, I'll just say I feel like the doctors in Salt Lake dropped the ball. Ten years ago a radiologist noted 18 times that Ryan had signs of chronic lung disease. Imagine my surprise when I learned of these findings just 2 short months ago when I requested Ryan's medical records so that we could try to piece his medical history together. There are so many unanswered questions. So many.

Ryan has been a blessing in my life. He has taught me so many things. It was through Ryan that I turned to my Father-in-Heaven and learned that the Atonement of Jesus Christ is a healing power, not just for sinners, but for those who have broken hearts and broken bodies.

Several weeks ago I woke up early one morning deep in thought. I had an impression that my Heavenly Father missed me. It was a strange feeling, but I had the thought that while it is not my time to return to Him, He misses me and I need to turn to Him. I have not established the habits that I need to, but the only guidance I can receive is through Him who created all things. It is through Him that we will get through this trial in our lives. It's all about trust.

Summer Vacation - Day Thirteen

Our 4th of July holiday started bright and early with Sydney coming into our room at 3:30am with pink eye. She had asked me the night before to check to see if her eye had anything in it and I couldn't see anything. By 3:30am though I could see it blaring red and goopy through the glare of the night light.

We have pretty good experience with pink eye and we know that early intervention is key. Our main problem was that we got new insurance on July 1st and we did not have cards or information that we could use to take her in.

Brett and I spent the next two hours online and on the phone with the on-call nurse with our new insurance trying to figure out the best course of action. In those two hours Sydney went to the rest room 15 times. She would feel the urge to go and then just go and sit. I knew then that we were not only dealing with pink eye, but that she also had a UTI and we needed to get her help. Of course that meant that we needed to find the closest ER as the closest urgent care didn't open until 10am and with Syd's diabetes, the urgency of her getting care is multiplied by 1,000.

By 5:30 I had finally gone in to wake Uncle Ken to see where we needed to take her for treatment.

We made our way to the ER and I have to say we were treated better there than most any other place we have ever gone for treatment. I was so impressed by the facility and within a couple of hours we were on our way with prescriptions. We then spent the next hour and a half trying to get to a 24-hour pharmacy. Each one we went to didn't open until 9 or 10. By the time we finally got to the 24-hour CVS, we could have sat in the parking lot of the first one we went to. Oh well.


By mid afternoon we were ready to head into DC to watch the fireworks at the nation's capitol. Sydney was feeling better and she had meds being pumped into her every few hours. We bought KFC to take with us to eat and I realized why I don't frequent the place. It was easier to do that than anything else though.

Our view of the fireworks was absolutely fantastic. I don't think we could have picked a better place to celebrate the birthday of our country and to wrap up our amazing trip.

Summer Vacation - Day Eleven and Twelve

With Sydney not feeling that great, we decided that we needed to just stay home for a day and let her body rest. We spent Tuesday watching videos and just laying around. It was a nice break from the constant movement that we had done since we had left home on the 22nd of June.

On Wednesday Brett and Ryan had the opportunity to go to the Washington DC Temple. The DC temple has a special spot in Brett's family. His grandfather Elmer Crowley documented the building of that temple through many pictures. It was a special place for Ryan to be able to go with his dad.

This home belonged to Brett's grandmother and is located close to the DC temple.

While the boys were out, Sydney and I went and had pedicures with Aunt Tricia and Kara. Sydney was absolutely thrilled. I am not a big pedicure person, but Sydney is and it was so kind of Tricia to treat us to such a fun girls day out.

Summer Vacation Day Ten

After the IDF conference was over, we took the metro out to the airport to rent a car. Stupid me chose the wrong car size for our family, even though the picture said it would accommodate 4 people and 2 suitcases. We were offered a 2 door fiat. Uh, yeah. So, we were gouged by the company and had to pay an extra $80 to upgrade. I was not thrilled about that.

Our plan was to drive to Brett's uncle's home. We love staying with Uncle Ken and his family. They have a beautiful family and they are the perfect hosts. I feel so comfortable in their home and I love them very much.

Sydney woke up Monday morning not feeling well. Poor kid felt rotten. Add diabetes on top of a sickness and you have a crappy combination. Our plan was to go into Washington DC to see the sights. We knew that the closer we got to the 4th of July, the busier the district would be. We couldn't go in with Syd feeling the way she did though.

We all ate breakfast and gave Syd some ibuprofen that Brett had gone to the store for. Within a couple of hours Sydney was acting better and feeling much better. We made the decision to go ahead and make our trek into DC where we would try to see much of what is there.

Brett's cousin works for Senator Hatch (R) - Utah. We were fortunate that because of her ties to the Capitol, we got behind the scenes treatment and we were able to see things that the general public is not allowed to see.

The view from the balcony at our nation's capitol.

Brigham Young

Lincoln Memorial

Washington Monument

Family pic in front of the Lincoln Memorial

Arlington Cemetery

Poor Sydney was back to feeling like crap by the end of the Capitol tour. We pushed her a bit to see anything else. I had to leave her meds back in Shannon's office so everything had worn off by the time we were moving on to see things. I feel horrible that she felt so bad. I am grateful for what we were able to see.

I guess we'll just have to return to DC so we can see the rest of it :)

Summer Vacation - Days Seven, Eight, and Nine

After a fun filled week in CT, and NY, we were now in Baltimore for the IDF (Immune Deficiency Foundation) conference - one of the main reasons we were back East in the first place. We were able to meet up with old friends and make new friends. We only attended one class as the rest of the classes did not apply to our family situation. I am grateful to the group of people who helped us make this trip.

The kids did a lot of swimming. In this picture, Ryan swam over with Sydney on his back and said "Super Goose and his cape" Of course I had to snap a picture :-).

Me with my dear friend Jill Heaps

The balcony view from the hotel. This room was a friend's room. Simply amazing.

Baltimore Harbor

The Aquarium at Baltimore Harbor

Me, Jill Heaps and Linda Iredale