Two months

Yesterday was two months since our sweet Ryan’s passing.  We remembered him by wearing orange.  Thank you to those who joined in and did the same.  It really means so much to our family that he is still being remembered.  We even noticed perfect strangers joining in and wearing orange.  How sweet of them.  My new favorite color is orange.  I even caved and allowed Jaime to become the owner of a new little orange kitten, who happens to be named Ryan.  We didn’t want Ryan Kitty to be lonely so his little sister Texie came also.  Just for the record we do like orange things but I will draw the line.  I do not want any orange snakes, lizards, tarantulas or sharks… even if you name them Ryan.  Someday I do think it would be fun to have an orange car, hint hint.  In the evening we ate dinner as a family at Ryan’s grave and set off balloons.  A sweet little old man was there visiting his wife and was kind enough to take our picture.  Later at home, we tortured ourselves by watching the video of Ryan that was shown at the gathering.  At one point Ethan said, “Why is everyone crying?”  Later Adam stated, “This sucks.  This is crap.”  We are doing very well.  Our lives will never be the same but we continue to feel comforted.  Thank you again for all those who continue to love us and pray for us.  You truly are a blessing in our lives.

                                                          Jaime and Texie and Ryan Kitty

I received the most beautiful bouquet of flowers today.  I was surprised to see they were from our health insurance company.  I guess they are just being nice before they give us the boot.  Just kidding.  They have actually been very good to deal with.  I am sure they are really from the heart and I am very thankful.  Sorry Mike, they are the prettiest flowers I have ever gotten.

Alex is doing pretty good and hopes to be able to walk on his own soon.  Just kidding.  He was messing around at the medical suppy store.  He can’t wait to be able to do things other than sit on the couch and watch tv and play Xbox.  I will remind him of this in a few weeks when he is not happy I won’t let him play it more.  I took him for a checkup a few days ago.  The doctor poked all around him.  It was pretty hard to watch and it hurt him.  I had to look away a few times as the q-tip explored all around.  He drained quite a bit and bled.  It was gross.  Then the doctor proceeded to pack the little hole (about the size of a pencil eraser) with 8 inches of ¼ inch gauze.  I was then told I would have to remove it and then repack it myself.  What!!!!!!  Well, I am proud to say that I have become quite the nurse.  With the help of my parents I got 4 inches in my first time.  I am supposed to change it twice a day and put at least 3 inches in each time.   Alex is so brave.  Once again we have lots of video and pictures for those interested.  We are used to it now and it’s fun to gross everyone out.  Alex likes to stand up and then we just watch it drain and drain.  I still like to tease Alex by asking him, “On a scale of 1 to 10 what is your pain level?”  He was so sick of being asked that by all the nurses at the hospital.

We had a little more excitement here tonight.  We had a huge wind and rain storm.  Mike and I were watching Adam and Ethan running around in the rain on our driveway.  We saw a flash of light from a distance.  I thought it was a firework.  It then didn’t go away.  I told Mike I thought a power line had caught on fire.  We got in the car and drove a block and saw the power line on fire.  A transformer had blown.  I called 911 and a fire truck came and put out the blaze.  Ok, it wasn’t very big.   It was a little bit exciting though.  We got to chat with the firefighters for a moment.  They did say it was good we had called or it would have burned a little more and the line would have fallen.  Glad that didn’t happen.  Adam and Ethan thought it was pretty cool, and I admit Mike and I thought so as well.

                                             Thank you again to everyone.  We love you all.

Lunch With the Girls

L-R  Andrea, Catherine, Jeri, Liz

Today Catherine and I met with Andrea and Liz for lunch at PF Chang's in Salt Lake City. They are two of the nurses at Primary Children's who cared for Ryan. It was wonderful to see them again - outside of the hospital.

Pictures from July 5th - Doctor Visit

Catherine asked if I would post some of the pictures taken the day of the 

visit to the Cardiologist. 7-05-12

Alex chose Olive Garden for supper on the way home. He ate his first meal in two weeks! 

Alex having his blood pressure taken. 
They brought a lawn chair/recliner for him, as it is hard for him to sit straight. 

Jaime after she had the echocardiogram done.

Adam having his blood pressure taken. 

Ethan fell asleep during his echocardiogram.  Most definitely made it easier for the technician.

Ethan having the holter monitor applied.

Ethan with the holter monitor all hooked up. After the leads were all on, they wrapped him first with gauze, then an ACE bandage - to hold the leads in place, and to help prevent little hands from pulling them off. At Ethan's waist sits the box all the wires hooked in to. He wore it for 24 hours, and his folks say he did great!

Lotts more to tell...

We had a happy 4^th of July.  We went to the Hooper parade for the first time.  The kids got a ton of candy.  It was so fun.  Alex had been up late the night before from playing Xbox so we let him sleep.  He might not have the strength of a teenager yet and walks like an old man still but he still has the mind of one and has really been enjoying all the gaming time he gets now.  Just so everyone knows, I do not usually let the kids have free reign of playing video games.  I keep the controllers in my room and monitor their playing or they would never stop playing other than to breathe.  Later we had a nice BBQ and went to the fireworks in Hooper.  We started a new family tradition of sitting by Ryan’s grave to watch them.  It was the perfect spot.  We were by ourselves and the view was great.  We could even hear the music playing from the fairgrounds and see fireworks going off in about 5 other locations as well.  The kids made glow stick necklaces and bracelets.  We put a few on Ryan’s grave and then Ethan proceeded to take some to the other graves.  He said he was sharing with the other dead people who were his friends.  He said he loved them.  It was very cute of him.  We ate some snacks and even put a few cookies out for Ryan.  It was a special time to be there and yet hard as well.  We really missed Ryan and some tears were shed.  

 As we looked in the sky we noticed the full moon glowed orange.  It was beautiful and it didn’t last for too long.  I told the kids Ryan did that for us.  Mike asked others from different locations if it was orange where they were.  They said no. 

Yesterday we spent the day in Provo at the pediatric cardiologist.  Long story short, the kids all seem fine for now.  They all had EKGs and echocardiograms.  Hypertrophic Cardiomyopathy usually shows up in teenagers so we will have to get our kids tested each year when they are between the ages of 12-18.  As adults we will all need to be tested every five years.  Mike and I go in for our echocardiograms in a few weeks.  I am sure we are fine but it will be nice to know for sure.  If either of us shows signs then our siblings will need to be tested.

We were at the doctor’s office for around 4 hours.  Our kids were very good.  I had brought treats, a portable DVD player and some iPods.  Thank goodness for modern technology.  We even brought a reclining lawn chair so Alex wouldn’t have to sit up straight.  The kids had to lay still for about 45 minutes for the eco.  We wondered how Ethan would do and he fell asleep and that made that easy.  The doctor did discover an extra heart beat with Ethan.  I am not exactly sure what that means.  He isn’t too concern since his eco came back good but he did want to monitor him for 24 hours.  Ethan had to get about 6 wires hooked to his chest.  We wrapped him up with an ace bandage so he won’t mess with the wires.  The wires and machine would moniter his heart and send the report back to the doctor.  Wow.  Crazy.  He pretty much looks like he had a bomb strapped to his chest.  It is so cute and we can’t believe he is actually keeping it on.

The staff at the doctor’s office was great.  They treated us so kindly and gave special care to us.  It really made things go very well.   Mike’s mom Jeri came with us and we played musical kids as we took turns with different kids.  It was sure nice to have her there, especially with Alex unable to help.  Alex wanted to go eat at the Olive Garden so we went there for dinner.  We let the waiter know that we needed to hurry because he couldn’t sit for long.  The waiter was very kind and we had a nice meal.  We were so happy to see Alex eat his first meal in 2 weeks.  He finished it all and we were so shocked.  So far he has lost about 10 lbs.  He still doesn’t have much of an appetite and is still super picky.  I did enjoy feeding him a Frosty the other day while he was playing video games.  I just kept shoving it in.  When he wouldn’t open his mouth I just let it drip on him until he did.  He learned his lesson quickly.  He finished it all!!

Alex is doing very well.  His incision looks kind of yucky and we are concerned it might be a little bit infected.  We do have him on an antibiotic and hopefully that will take care of it.  He isn’t in too much pain and that is wonderful.   We love Alex.  He had been so brave through this all.  It has been a very bonding experience for us all and has brought our family closer to one another.

Again, I would like to thank all those who have reached out to us and especially to Alex.  You have helped lift his spirits and make him smile.  As a mother, that means so much.  Hug your kids more and don’t let a moment go by without showing them you love them.  Life is much too fragile and they grow up way too quickly.

We love you all.  Thanks so much for continuing to check the blog.  It still touches our hearts to see how many are concerned about our family.   Catherine and Mike 

Good Things to Come

If a picture is worth a thousand words, what's a video worth? This one's worth at least a few minutes of your time. - Luke

Welcome Home Alex!!

Yeah we are finally home after spending 6 days in the hospital. 

We weren’t quite ready to go home yesterday so when the doctor told us we weren’t cleared to go I was relieved. As of yesterday Alex still wasn’t eating very much and they were watching him closely to make sure his bowels were working properly. His intestines were still kind of asleep so they kept us another day to make sure there weren’t any complications. I was a little nervous when they told us we could go home today and his bowels still hadn’t performed their proper function (he hadn’t pooped). I was told that by now his stomach would have been swollen like a pregnant woman and he would be in a lot of pain and have a fever if they were obstructed. He had none of these symptoms and had been passing gas and his gut sounded good. It’s odd how certain bodily functions are exciting in the hospital. I hope he forgets this soon and tries to show proper self control now that we are home again. :)

He was so excited when they finally stopped his IV fluids because he was drinking more. Now he didn’t have to get up to go to the bathroom as much and that was a plus because it caused him pain to get out of bed. He did get very good at doing it without much help. My poor 16 year old boy was moving like an old man. He also got his "gut tube" removed. That’s what I called it. It collected his gut juice or the fluids that drained out of his stomach cavity. One night Alex and I and a nurse kept trying to think of what flavor of fruit juice it reminded us of. We came to the conclusion that it looked like passion fruit or guava nectar (and sometimes it had pulp). We have some pretty yummy pictures we took but I won’t totally gross you out by posting them. Before he had the gut tube removed he asked one of the nurses if it hurt. She said, “No, it just feels a little weird.” I then quickly asked her if she had ever had one removed. Of course she hadn’t. Well for the record, Alex did say it felt weird and it also hurt. I'm not surprised. How could getting a tube the size of a straw pulled out of your body not hurt. Good think it only took a few seconds. Once again I have some good pictures and even took video if anyone is interested. Today when he got the staples removed the nurse was decent enough to say that it might sting a little. Alex said it felt kind of like a shot. He really didn’t move or seem to be in discomfort as she removed all 18 staples!! There is a really neat tool they use and it is very similar to the one that removes staples from paper. I have it on video as well and Alex kept the staples as a souvenir.

Alex is so happy not to have shots anymore. He was given shots twice a day in his stomach so he wouldn’t get blood clots. His poor stomach has so many little shot marks to go along with a gut tube hole and a four and a half inch incision mark. Poor guy. I now can’t complain about all the stretch marks he gave me when I was pregnant with him. He is also happy he doesn’t have to eat hospital food anymore. To be honest it wasn’t that bad. I usually ate the stuff he didn’t. I even got him a shake a few times knowing he wouldn’t eat much of it and I would get the rest. I am sneaky. He is just super picky and had no appetite and did I say, super picky. I was glad yesterday when I discovered he would eat strawberries.

Well, I will wrap this up. We got home today at around 3pm. We arrived home to our family and cousins on the driveway to welcome us home. A huge banner hung on the garage and orange and blue balloons were tied to the porch railings. The banner was written in blue and orange because Alex loves the Denver Broncos.

We are glad to be home. I was thrilled to have a real shower. It felt so good to walk on carpet. It was so good to see Mike and the kids. This evening Mike surprised Alex by getting him an Xbox 360. We figured Alex deserves it because of all he has gone through. Plus he has to be a couch potato for the next few weeks and we don’t want him to get totally bored. You should have seen his face when he saw the box!! He tried so hard to get out of the recliner but couldn’t. Mike helped him up and they hugged. Alex said he would have jumped up and down if he could have. He was so happy and it felt so good to see him smile. This moment was like the stupid credit card commercial puts it, "priceless."

Once again we would like to thank all those who have some to our aid yet again. Thank you for the prayers, texts, visits, meals, watching kids, and so many others we can’t list. It really means so much to us and I know it touched our sweet son to know so many love and care for him. We love you all and plan to take a break for a while from trauma and hope we can have a nice and peaceful summer.

We know our Heavenly Father loves us and has helped us through this additional trial. He works in mysterious ways and someday it will be great to know why we had to go through these trials. We have learned so much and yet still have so much to learn. We are more thankful for our families and friends and the things that really matter. We are so thankful for the plan of happiness and all the joy it brings us. We know the scriptures are true and guide us as we follow their counsel. Families are forever. I am so thankful for a loving older brother, Jesus Christ, who has felt my pain and who had stood beside me and my family through all of our sorrow, hardship and pain. What comfort it brings me to know I am never alone.  

Thank you again everyone. We love you all.

Love,

Catherine, Mike and kiddos

Alex's hospital stay - Day 4

Alex has spent today shedding some of the things that have kept him tied down to his bed.  He was finally able to get rid of his oxygen, heart monitors and IV medications.  Things are looking hopeful that he will be able to come home tomorrow.  The last thing he has to get rid of are the fluids that he is still receiving via IV.  He hasn't had much of an appetite while in the hospital and those fluids have been his only source of nutrition.

I took the kids up to see him again today.  They each had fun taking turns feeding him some apple sauce so that he could take his pain pill.  We actually saw a smile because the kids were cracking him up trying to feed him.  Smiles from Alex have been rare in the hospital.  A smile generally leads to a laugh and laughs lead to a sore belly.

Jaime, Adam and Ethan also had a chance to make cards, pictures and other items to hang in Alex's room.  I think it makes his room feel a little more personal and special.  Maybe we should've done it a little sooner than the day before he goes home.

Alex gave me permission to share the following picture.  This was the first glimpse I had of the incision because they were changing the bandage that has kept it hidden.  The incision is about 4 1/2 inches long, begins just above his belly button and has 17 staples in it.  The hole in his intestine that made this surgery necessary was about the same diameter as a pencil eraser.

Hurts now, but a cool scar and football injury story later.  We love you Alex.