Last night I sat on the couch aside the Christmas tree admiring the lights on this magical object that is adorned in our living room. We had just finished reading the "Forgotten Carols" children's book and I was reminded of Christmas miracles that come and go each year.
As I looked up at our tree I reflected on all of the ornaments, each with its own story. My eyes fell upon the different faces of my son as he has grown over the years. We have ornaments from preschool and throughout elementary school, toothless smiles and hand-colored frames. My eyes took me to the top of the tree where hangs the ornament that we made last year with a picture of him running cross country in Jr High. My heart began to break as I wondered if I would ever see that again. I wanted to turn back the clock! I got up and moved to the larger of the two couches and had him come and sit next to me. I held him. It feels so different to hold him now. The once very bony child is no longer bony. His body is a body that is now the direct effect of what prednisone does to one's self.
I then reflected of his life and the life of Him who gave us life. I am so grateful to a loving Heavenly Father who has allowed me to be the mother of a very special young man and a very special young lady. I am so blessed to be their mother. They both have health trials. It is hard for them, yet they both love outside of themselves and I am better because of it.
So at this season of gifts, and trees, and family and love, I honor Him whom we celebrate and praise God for the Miracles of Christmas in my home.
Tuesday, December 03, 2013
Tuesday, October 15, 2013
Raising a Man
Last year I read an article about a mom who watched her son become a man over the summer. Her husband had a plan that their son would build a fence around their property that was several acres. Every day the boy would get up early and go and dig fence posts. Every day he would come in complaining and exhausted. This mom protested! Her husband was overworking her precious baby. As time went on, the complaining and protesting ceased -- it was to no avail. The husband knew what he had in mind, and nothing was going to change his plan for his son. As the summer came to an end the project of digging fence posts came near completion. The conversations at the dinner table changed. What was once feared as breaking the child labor laws of this country was now a sense of pride for one young man. Plans were made between dad and son to line the fence posts with wire to complete the project. This mother saw what her husband's plan had been all along. Her young baby boy was now a man, and he became a man by learning how to work.
Oh how I loved this article. Oh how I had my own plans of turning my young son into a man! This summer I vowed to make sure our yard was void of weeds. Ryan's job was going to be to keep up with the never-ending mess that our yard has become. As the summer wore on I failed miserably. I wasn't ready to take his childhood away, so instead I resented the yard and let it go. Week after week the weeds grew. Week after week I watched as my son mowed the lawns of neighbors to earn extra money, and I let it go. "Forgive me for my shortcomings," I would pray. "Please help me in some way to teach Ryan about becoming a man without taking his childhood," I pleaded. Little did I know that what was coming would ultimately turn my son into a man.
Sometimes our prayers are answered in ways that we don't fully understand. This past August when Ryan was diagnosed with his lung disease our world was turned upside down. Just as the axis tilts in a favorable direction, we topple over and start again. I have questioned, "Why Ryan?" What is it that I am supposed to learn from this? What is it that Ryan is supposed to learn?
Yesterday I had the opportunity of sitting in on a conversation that Ryan had with a special man. The question was posed "What is it that makes you come to me at this time of your life? You are only 13." Ryan sat there for a minute and with tears streaming down his face he said "Well, I've had to begin some medication and the diagnosis has made me think of what my Heavenly Father's plan is for me, so I've come to you." This Sunday Ryan will have the privilege of receiving his Patriarchal blessing. This is a sacred time for him and for our family. Over the past 2 months I have watched as Ryan has gotten up at 5:57am and read his scriptures, written in his journal, and practiced his piano. I have watched him walk out of the school grinning from ear to ear and letting me know just how happy he is, when by all other accounts he should not be happy.
I don't need my son to pull weeds in my yard over an entire summer. This trial we are facing is sometimes more that I can bear, but my Heavenly Father knew just what I needed and He knew better than I how to raise a man.
Oh how I loved this article. Oh how I had my own plans of turning my young son into a man! This summer I vowed to make sure our yard was void of weeds. Ryan's job was going to be to keep up with the never-ending mess that our yard has become. As the summer wore on I failed miserably. I wasn't ready to take his childhood away, so instead I resented the yard and let it go. Week after week the weeds grew. Week after week I watched as my son mowed the lawns of neighbors to earn extra money, and I let it go. "Forgive me for my shortcomings," I would pray. "Please help me in some way to teach Ryan about becoming a man without taking his childhood," I pleaded. Little did I know that what was coming would ultimately turn my son into a man.
Sometimes our prayers are answered in ways that we don't fully understand. This past August when Ryan was diagnosed with his lung disease our world was turned upside down. Just as the axis tilts in a favorable direction, we topple over and start again. I have questioned, "Why Ryan?" What is it that I am supposed to learn from this? What is it that Ryan is supposed to learn?
Yesterday I had the opportunity of sitting in on a conversation that Ryan had with a special man. The question was posed "What is it that makes you come to me at this time of your life? You are only 13." Ryan sat there for a minute and with tears streaming down his face he said "Well, I've had to begin some medication and the diagnosis has made me think of what my Heavenly Father's plan is for me, so I've come to you." This Sunday Ryan will have the privilege of receiving his Patriarchal blessing. This is a sacred time for him and for our family. Over the past 2 months I have watched as Ryan has gotten up at 5:57am and read his scriptures, written in his journal, and practiced his piano. I have watched him walk out of the school grinning from ear to ear and letting me know just how happy he is, when by all other accounts he should not be happy.
I don't need my son to pull weeds in my yard over an entire summer. This trial we are facing is sometimes more that I can bear, but my Heavenly Father knew just what I needed and He knew better than I how to raise a man.
Monday, September 09, 2013
Into the Twilight Zone
Time for an update....
We received Ryan's lung biopsy results. Ryan has been officially diagnosed with Bronchiolitus Obliterans - a big word for a chronic lung disease that he has likely had his entire life post transplant. This condition is both irreversible and progressive. The treatment, to hopefully stop the progression, is a combination of steroids, immunosuppressants, and antibiotics. I feel like we have gone back in time. The difference here though is that Ryan is older and he knows what is going on and it is MUCH harder now.
I remember when Ryan got RSV. That diagnosis and 11-day hospital stay just about sent me over the edge. That particular hospital stay made me realize that we had been carried by a higher power during our journey in Los Angeles.
Now, 12 years later we are faced with more medical bills, more medications, the risk of contracting illnesses, weekly blood draws, and monthly tests. I have not learned my lesson well enough. I thought I had, but I realize that I was filled with much pride and I commit to be better.
I spent the day today cleaning and catching up on laundry. I didn't even come close to getting everything done. I stress that he might contract something that will put him at risk, yet I want him to live. He already knows he is different. He has been given several restrictions and it is killing him. It's a strange feeling knowing that what you are asking your child to ingest every day is the very poison that is killing what you fought so hard for. It's a strange balancing act.
Our prayers have been for Ryan's doctors. We've prayed that they will be guided in his treatment. My only challenge now is to have the faith that our prayers are heard and that the treatment he is receiving is the exact treatment that he needs to prolong his lungs.
The doctor told me to take all of the negative google searches I have read and wipe them out of my brain because Ryan will be healed. I can only cloud them over. I am a realist, and it is my safety mechanism to look at all scenarios, both good and bad.
When Ryan was on high doses of steroids as a baby, we called him 'Tiny' because he wasn't. His cheeks are starting to puff a bit and tonight he asked me to start calling him 'Tiny' again.
So, into the twilight zone we go my little 'tiny goose'.
We received Ryan's lung biopsy results. Ryan has been officially diagnosed with Bronchiolitus Obliterans - a big word for a chronic lung disease that he has likely had his entire life post transplant. This condition is both irreversible and progressive. The treatment, to hopefully stop the progression, is a combination of steroids, immunosuppressants, and antibiotics. I feel like we have gone back in time. The difference here though is that Ryan is older and he knows what is going on and it is MUCH harder now.
I remember when Ryan got RSV. That diagnosis and 11-day hospital stay just about sent me over the edge. That particular hospital stay made me realize that we had been carried by a higher power during our journey in Los Angeles.
Now, 12 years later we are faced with more medical bills, more medications, the risk of contracting illnesses, weekly blood draws, and monthly tests. I have not learned my lesson well enough. I thought I had, but I realize that I was filled with much pride and I commit to be better.
I spent the day today cleaning and catching up on laundry. I didn't even come close to getting everything done. I stress that he might contract something that will put him at risk, yet I want him to live. He already knows he is different. He has been given several restrictions and it is killing him. It's a strange feeling knowing that what you are asking your child to ingest every day is the very poison that is killing what you fought so hard for. It's a strange balancing act.
Our prayers have been for Ryan's doctors. We've prayed that they will be guided in his treatment. My only challenge now is to have the faith that our prayers are heard and that the treatment he is receiving is the exact treatment that he needs to prolong his lungs.
The doctor told me to take all of the negative google searches I have read and wipe them out of my brain because Ryan will be healed. I can only cloud them over. I am a realist, and it is my safety mechanism to look at all scenarios, both good and bad.
When Ryan was on high doses of steroids as a baby, we called him 'Tiny' because he wasn't. His cheeks are starting to puff a bit and tonight he asked me to start calling him 'Tiny' again.
So, into the twilight zone we go my little 'tiny goose'.
Sunday, August 18, 2013
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.
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.
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.
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."
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.
Thursday, August 15, 2013
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.
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.
Sunday, August 11, 2013
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.
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.
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.
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.
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| This home belonged to Brett's grandmother and is located close to the DC temple. |
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.
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.
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| The view from the balcony at our nation's capitol. |
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| Brigham Young |
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| Lincoln Memorial |
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| Washington Monument |
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| Family pic in front of the Lincoln Memorial |
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| 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.
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| 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 :-). |
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| Me with my dear friend Jill Heaps |
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| The balcony view from the hotel. This room was a friend's room. Simply amazing. |
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| Baltimore Harbor |
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| The Aquarium at Baltimore Harbor |
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| Me, Jill Heaps and Linda Iredale |
Saturday, July 27, 2013
Summer Vacation - Day Six - Capitol Hill
Day six came a bit too early for us. The plan was for us to meet our group at 6:45am to travel to Capitol Hill.
It was Advocacy Day for the Immune Deficiency Foundation and we had meetings scheduled with our Congressman's staff.
Since we got in so late the night before, I went down and got our instructions, and then picked up breakfast for the family so that the kids could sleep a bit longer.
Once on the busses, we settled in for the hour and a half drive to Capitol Hill. Ryan did a fantastic job representing our family and explaining why we were there.
It was Advocacy Day for the Immune Deficiency Foundation and we had meetings scheduled with our Congressman's staff.
Since we got in so late the night before, I went down and got our instructions, and then picked up breakfast for the family so that the kids could sleep a bit longer.
Once on the busses, we settled in for the hour and a half drive to Capitol Hill. Ryan did a fantastic job representing our family and explaining why we were there.
Summer Vacation - Day Five - Wrapping up in New York CIty, and on To Baltimore
Day Five was our last day in New York. I have to say, on one hand I wish we had more time to spend there, but on the other hand I was ready to move beyond the fast pace of the city life.
Brett and Ryan were able to attend the Manhattan Temple, while Sydney and I hung back at the hotel and packed up the rest of our room and went and had breakfast together.
I love theater, and I especially love Broadway Theater. After watching The Lion King, the kids were sad that they didn't come with me to Phantom. Too bad so sad for them.
Immediately following our play, we went back to our hotel and gathered our luggage. We then took the subway back into Manhattan and walked a bazillion blocks to catch our bus to Baltimore. We were so rushed to make it to the bus on time. I'm really glad we hurried --as soon as we arrived, we learned that our bus was an hour and a half late. Awesome!
A note about our bus ride - The driver was crazy. I prayed the whole way to Baltimore that we would be safe. We were driving through a terrible thunder/lightening/rain storm, and he did NOT slow down for anything.
Aside from that, it was a pleasant ride and for $20 for the entire family, it was well worth the cost.
Summer Vacation - Day Four - More New York
On Day Four we woke up early and headed out for breakfast. The plan was to eat and then to make our way to the Staten Island Ferry so that the kids could see the Statue of Liberty.
Normally, we would have planned to go to Liberty Island to actually see the Statue of Liberty, but it was closed due to the damage the statue received from hurricane Sandy. As our luck would have it, the island opened up the week after we were there. Oh well.
As seen in the last post, I apparently can't figure out the HTML coding to make my pictures sit side-by-side, so you get to see them in a big long line.
Normally, we would have planned to go to Liberty Island to actually see the Statue of Liberty, but it was closed due to the damage the statue received from hurricane Sandy. As our luck would have it, the island opened up the week after we were there. Oh well.
As seen in the last post, I apparently can't figure out the HTML coding to make my pictures sit side-by-side, so you get to see them in a big long line.
After we returned back to Manhattan, we walked and saw the World Trade Center, Wall Street, FAO Schwartz, and Grand Central Station. We were all tired from all of the walking. The kids wanted to go back to Time Square to purchase the souvenirs that they had fallen in love with. While there, Brett noticed a board that showed that many of the local broadway plays were not sold out. Imagine my delight when we saw that there were still tickets to The Phantom of the Opera!!! The kids didn't want to go, and Brett had seen it twice already so he kindly bought a ticket for me and took the kids back to the hotel to swim while I went to the play. Now that was a highlight of New York City for me!
We ended our day at the Empire State Bldg. The kids were scared once at the top and I must say, that was the most expensive escalator ride I've ever taken in my life.
Summer Vacation - Day Three New York
Monday brought some new experiences for all of us. We checked out of our hotel and did some last minute things at the cemetery and then headed back into New York. Our first stop was Ossining, NY. Brett served his mission there and thought it would be fun to go back to the area to show the kids where he lived. Just outside of Ossining is Tarry Town, home of the Sleepy Hollow Cemetery, made famous by Washington Irving in his short story about the Headless Horseman. The kids weren't too thrilled that we were going back to another cemetery. I teased them that I was going to walk around to see if I could find more relatives. They didn't think I was too funny.
We got out and took a picture by a bridge and then headed to get lunch. The kids were starving.
We made a rule for the trip that we could not eat at a 'chain' restaurant that could be found at home. We had a hard time finding such a place, but settled on a small Chinese restaurant in Tarry Town.
After lunch we hopped into the car and headed for Brooklyn, NY. The plan was for me to check into our hotel while Brett and Ryan took the rental car back to the airport and then boarded the subway back to meet us. From there we would all get subway passes and venture into Manhattan to see a few things.
We got out and took a picture by a bridge and then headed to get lunch. The kids were starving.
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We made a rule for the trip that we could not eat at a 'chain' restaurant that could be found at home. We had a hard time finding such a place, but settled on a small Chinese restaurant in Tarry Town.
After lunch we hopped into the car and headed for Brooklyn, NY. The plan was for me to check into our hotel while Brett and Ryan took the rental car back to the airport and then boarded the subway back to meet us. From there we would all get subway passes and venture into Manhattan to see a few things.
When in Brooklyn, you must have Brooklyn Style Pizza
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Our first Subway ride as a family. Funny thing happened at the subway - Brett could not get his pass to work. The lady at the booth was not impressed. Since Brett had purchased 2 passes already, he only needed 2 more for the rest of the family. Well, his wouldn't work and the lady said to him "Are you trying to use that pass for all of you?" Ha!
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| 1st Subway Ride Straight off the Subway on 42nd Ave we saw this Sketchers store. The guy out front was holding this shoe. It's as big as the kids are. |
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Time Square - The kids' favorite place
Toys R Us
Time Square at night
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