Crazy Day

This post is all about me.  Hyrum is doing great, he is still making every noise possible to enjoy it from the right side. But today didn't go as planned, and I needed to vent it out!

It started off as a normal day with breakfast and a hike in Griffith Park (trying not to exert Hyrum...yeah right).  Yesterday, John had noticed that my phone was "bulging" and thought I my last dropping might have done more damage than we thought. So we went to the Apple Store after our hike. (I'm thinking gross, I need a shower. But we went anyways.) We set an appointment for that afternoon at 2:20 or they would text us if we could get in sooner.

We went home and had lunch, John got some work done and backed up my phone, Hyrum got some homework done, and I struggled with my lap top to connect to the internet so I could do some scouting stuff with Hyrum. The text came about an hour earlier (SCORE!) so I left the boys and ran back by myself to the Apple Store. 20 minutes later, I'm told that I had 15 minutes to get there from the time they sent out the text and that not only did they cancel my "early call", but they had canceled my actual appointment also.  I was not happy and told them what I thought about that...then John calls me to let me know about the text and he and I go the round as John is telling me just what I got done telling the employee (with the employee standing there listening in on the conversation). I get off the phone and he "squeezes" me in to see another apple guy to get my phone fixed.  1/2 hour later, I'm told that my phone has a bad battery that is causing the bulging (yeah for me, not my fault so I don't pay for it).

So I get my new phone and am told I can get it started now or at home.  But as I open the phone, I realize that John did the back up with it attached to his apple, not through the wifi...so I would have to wait until I get home to set it up.  This gets me to the next problem.  I'm in LA and usually use the GPS to tell me how to get around town.  Luckily, I'm pretty good at not getting lost and this is the 2nd time to get to the apple store...so I'm able to avoid that problem.  But this brings me to my next problem without a phone, how am I supposed to tell John that I am outside the apartment complex and ready to come in when he has the key!

Now it's time to get creative.  I don't want to throw rocks at the window. But I'm chewing gum and I look down and see a few ABC bits of gum that are hard and in wrappers. So I get a brilliant idea to throw them at the window, because I know that John is at his computer right at that window...nope doesn't work. So I set off the car alarm...twice...nope that doesn't get his attention. So back to the car, to think about how to get his attention. I find a stash of trail mix that we had made up for the trip and eat one of those (thinking on a full stomach is a good thing). I decide...what the heck, I'm in my exercise clothes anyways (still) and it's been awhile since I have gone for a run and my foot is feeling much better.  Who knows, maybe I'll get the nerve up to borrow a cell phone from one of the homeless people and call John.

So I leave him a note, "No way calling as my phone needs reboot with wifi and your computer. Went to park. Maybe I'll find someone who doesn't gross me out enough to call you with their phone. Gotta Love it! Jen".  I lock my phone and wallet in the car and head for the park across the street.

And I counted my steps to keep track of my time.  I know that the program I was using before I got injured started you off with 30 seconds running and 45 seconds walking...doing this 8 times.  So two times around the park, no way was I finding anyone to "borrow" their phone. So I headed home, knowing that it has been 1/2 hour to an hour since I left the car.  Low and behold, John is reading my note!  We have a good laugh.  Glad that I can run again and not have it hurt and that I didn't have to pay for my phone...but my computer was still down and would probably need to be replaced.  John decided to try one more thing while I showered. (Because now I really needed one)

I asked John why he didn't hear when I set the alarm off in the car. He said, "it's LA car alarms are going off all the time"

I fixed dinner, John fixed my computer(YEAH) and I ended the night with a phone call from Karl to discuss his day and merit badges he got from scouts!

Post Op Day 5

We started out today retracing Hyrums steps to let me see the view of the hike. As we were heading home, Hyrum told us "I heard a loud popping sound and now I can hear better out my new ear. This is a very huge positive sign for Hyrum. We are very excited for the coming weeks. 

From there we went home and showered and went to the grocery store for a few things. On our way in one of the workers stopped to ask Hyrum questions. On our way out, the same young man asked if he could buy Hyrum a treat. This is what we walked out with.

As you can see, he was pretty happy. From there we went home to get some laundry done and get some homework done. 

At Hyrums first follow up appointment today, the Doctor cleaned around his mold. And clipped off his graft gauze. He warned us it would get itchy. 

Next week, the doctor will take his mold off and show us how to wash his hair without getting any in his ear canal. 

Post Op Day 3-4

Hyrum woke up with his personality in full force. Making jokes and laughing.

We decided to head down the coast. We had permission to go down the Interstate. But Hyrum has a hard time with mountains anyways. We also had the time, so off we went down hwy 1. Hyrum sang pretty much the entire time. 

We also came across a beach with Sea Lions. Hyrum loved watching them and decided that there was 200 of them. 

We found a small picnic area for lunch and then found a Carl's Jr for a late lunch. 

After that we got a bit done. But moved on until we got to "Uncle James" house. We had a great dinner and another sleepless night. You don't realize how your kids sleep until they aren't allowed to sleep a certain way. This for Hyrum means he cannot sleep on his right side. Hyrum is still struggling with urinating without pain meds. We will be addressing this tomorrow at his first check up.

Hyrum had a gift waiting for him from Miss Farley (who is now Mrs Majoue). He loved his gift, but was sad for just a minute thinking about her, but the gift was priceless and he told me "mom, my book makes me feel safe"

It is amazing how often this little guy rolls. We have been given strict instructions that he can not sleep on his new ear. So due to John getting a cold, that has meant that Hyrum and I have shared the bed and John has gotten the air mattress. Hyrum does great until 2-3 am when his little body is determined to "trade sides". After a little while of fighting him, I have just grabbed him to me and held him tight for the rest of the night or until he calms down about 6 am. John's cold has been getting better and with all 3 of us on air mattresses, we put him in the middle and tag teamed him a bit better. 

During Primary, a little boy in Hyrums class kept touching him and asking Hyrum questions. The teacher finally had to separate the two boys, thinking she was protecting Hyrum as it is only obvious that Hyrum has had surgery and very recently. John and I traded back and forth as Hyrum was nervous about being in a crowd. The primary was practicing for their program and stayed in the primary room.  I watched the teacher separate the two boys. After church I met back up with John and Hyrum. I learned that the little boy was heading into thyroid surgery himself in the next couple of weeks and was very scared. He was asking questions like: does your ear hurt, does it hurt where they cut you, and does it hurt when they put you to sleep. Hyrum was very positive in his answers and the little boy knew that Hyrum knew the answers and that he would be ok. Hyrum was able to calm him down and assure him that he would be ok. I think Hyrum was an answer to another little boys prayers. 

After church we went to a park and John and Hyrum went for a walk with James, while I curled up on a blanket and took a nap to recoup from the loss of sleep the last few nights. 

They had a good time climbing the mountain, but was ready to veg in air conditioning when he got done.

Post op Day 2

We had a pretty relaxing day on post op day 2. We went to the store for lights for the car and treats to convince Hyrum to eat with.

Later on we went for a walk. Hyrum got tired after a while, so he got a ride from his dad. 

Then later on Hyrum FaceTimed with his sisters. That was great and lit his face up enough we got a crazy picture. The swelling is getting worse, but not unexpected. 

I just love this look.  His eyes are so big and the one that is swollen.  Wow crazy.

But the swelling is very noticeable and getting worse.  We were told that the first couple of days he would swell under his eyes. And so he has!

Tomorrow we are heading down the coast towards LA, we are planning on taking our sweet time and enjoy the view!

Removing the gauze

When we get the time to figure out how to put the video on my blog. We will do that. For now I just have the pre and post pictures. The pictures are still pretty bloody and if your not prepared to see them, might make you a bit queezy.  If your letting your own 8 year old or younger kids see this because they are friends with Hyrum, I would advise looking at them first, and then prepare your kids that there is blood, they are fresh unwrapped wounds and we are not allowed to wash him until we go to the doctors on Monday.  It was unnerving for Hyrum to see the pictures and he could only get to the point in the video where he gets upset because the gauze is stuck together.  When I post it you will know the point.  He refused to watch it again and he was living the video.

Hyrum was very anxious to get it all off. So as soon as breakfast was over we "got it done." So for a before the unveiling picture. We have this one. 

You can see why he would be done with it. It was getting into his eyes.

So after breakfast, we decided the best place to remove the wrap was at the table. Afterwards he let me take a couple of pictures. 

He was slouching in the above picture so I asked him to sit up more and got the below picture.  Looks a touch unsure and even painful.

At first he refused to let me take the next pictures. After talking to him though, he finally let me take some pictures of each side of him. He still wanted to see them, I think it helped to see them in picture, not video.

 So below is his left ear. They tucked his ear back so they could use the skin for the other side. They also took a graft (under the bloody bandage) for his ear canal.

A few hours later. We took this picture below. You will notice that his ear is not tucked to his head like we thought. You can see the stitches better also.

The picture below is his right "new" ear. As he said "my ear hasn't hatched yet". So at least he hasn't lost his humor. It is still leaking just a little so we have a piece of gauze tucked into his shirt to help catch the fluid.  They had drains around his ear in his head, to help pull the fluid, after surgery, they pull those drains, and use gauze to catch all the fluids.

 

I tried to get him to nap, but now that he knows what was under all that gauze, he had a hard time laying down.  Just the thought of laying on "wounds" was bad enough, now he knows exactly what he's laying on and couldn't do it.

We have taken him off the hard drugs and he is now on plain Tylenol. His peeing is getting better, but he still demand that I "sing" to him.  I have this nasty habit of taking songs and changing their meanings.  The "Let it go" song will always be our "pee song" now!  He perked up a little bit before dinner when he went to play with our Host's kids, but by dinner he was done and ready to veg again.

Tomorrow we are hoping to head to LA, where we will be for the next 3 doctors appointments. He has one on Monday, then the following Monday or Tuesday of each week, then back up on Thursday October 15 to San Jose until we come home Oct 20-21 depending on how things go with each of his appointments.

Day of Surgery and Post Op Day 1

After my own shower, I realized in all the hustle and bustle of the night before that Hyrum did not get his pre surgery shower.  So in the shower with his Dad he went. I asked him if he wanted to comb his hair, he said "why they are just cutting it off anyways."  So we got a messy hair picture...
 
We were supposed to be at the center by 7 am. And we made it barely by 7. Hyrum became quiet and very calm  as the time came closer. Hyrum had to take in his "friends" to keep him company while he waited.

While waiting Hyrum became very cuddly to both John and I.  He loved sitting and having John play with his hair.

He then ended up between both John and I, so we took a second selfie (which if anyone knows me, I'm not a huge selfie person) for the day.

The staff was very good with Hyrum asking him questions and letting him answer questions. We got him back and changed with a couple of warm blankets that he loved...

 The anesthesiologist let Hyrum listen to his own heart and let his "Bing boo" listen to his heart also.
It's always hard to watch your kid be wheeled away from you.  There are so many unknowns that could happen.

It was reported back to us that he was more calm than they were used to. He went to sleep even faster.

They got a late start. A little after 8 am. Dr Reinisch came out about 2:30 pm to let us know about the urine issues  they were having and to let us know they were ⅔ of the way done. He told us 3 more hours and they would be done, then off to recovery. During surgery, he told us that the Catheter gave them grief. Hyrum would leak around it, if the balloon was inflated they would get no urine out of him, they tried different sizes to no avail. They finally gave up and just let it be. 

The only other problem that they had was that Hyrums neck does not turn to the left very well. So instead of working down on Hyrum they had to raise him up and work sideways on him. 

John and I ate dinner closer to 5 so that when Hyrum woke up we could concentrate on him and not have stomachs contending for attention. John finished, I made it half way thru when both Dr Roberson and Dr Reinisch came out to talk with us. They thought Hyrum did great. Both were concerned about the problems with his bladder. Suggested we get some over the counter stuff to help out and to call with any issues. 

Hyrum was in recovery for about 1 ½ hours. It took him a little time to wake up. And when he did. It was "I want to go home". He finally took down ice chips, started breathing in his own, and kept down some apple juice.

He tried to pee and was unsuccessful. We got a few bloody drops. We talked about what to do, went over discharge instructions and got Hyrum dressed. Again the staff was amazing, they allowed Hyrum to help take his IV out.

He allowed the nurse to transfer Hyrum to the wheel chair where he proceeded to wheel himself "outta there."
 
He did allow for a few pictures, but was overall very happy to be "going home."  I sat in the back with him, just to make sure everything was ok on the way.


At the hotel, he still had a hard time peeing.  After attempting every 2 hours without success.We decided it was time to call the doctor as he had yet to go,by this time it was 11 pm.  It was suggested to up his pain meds.  This helped and by 2:30 am he was able to manage a urination.  It was painful, but he was defiantly feeling much better for him. He continued to pee every 2 hours and we continued to give him pain meds every 4 hours. I love watching kids sleep.  Hyrum is not allowed to sleep on his right side, so he was making sure he didn't roll onto his side.
 
 We were able to get him out of bed at 8 am this morning with the tempting thought of Waffles.  This kid will do most anything for waffles.  He did only eat half what he used to, but at least he ate something.

We returned back to the room where he decided to relax with some PBSKids so that I could pack us back up.

We returned to my cousins home with little to no problems, except that he isn't interested in eating. But I get him to drink every once in a while.  I had to do a quick stop at the grocery store, and bought him a donut (his other pit fall) for later on.

We made sure that Hyrum was well insulated for the trip to my cousins home.
 
One thing about Hyrum and surgeries that we have learned, is that he can become very non-communicative after surgeries especially the larger ones.  So he will just stare at us.  John tells me he's stoned.  I think he is still coming off the medications.  But he has loved listening to us read him well wishes from Facebook, his eyes will light up.  And every once in a while, it will come down and swoop up one of the sides of his smiler.

But as this is post op day one we are taking things very easy and lazy.

Pre-op Day

Talk about excited. I think today is worse than birthdays and favorite holidays. He kept asking to go to the hotel.

We went on a walk around the subdivision that we stayed to help buy some time before we headed to San Jose.

Hyrum, of Course, had to create his "man cave".  I think this will be the main traveling arrangements for the next while.

We left Livermore about 10:30. Found the locations of the doctors office, surgical center, and the hotel before heading to find lunch.

We realized we only had 2 hours to his appointments. We couldn't find a park that was close, so our options were Home Depot or IKEA. We did Home Depot in about 45 min and IKEA in less than 30 min. I don't think I've ever been that fast through that store. 

There was no way we could deter him anymore. So at 2:30 we headed to his appointment.

Hyrum did very well at passing his hearing test.  He loved being hooked up to all those wires and monitors.

From there we saw Dr. Roberson. Hyrum enjoyed talking to him and did well at answering all of the questions.  We then saw Dr. Reinisch, here he got his picture taken from every angle.  I snapped this one over Dr. Reinisch's shoulder to show the fun Hyrum had.

We learned that his surgery was being put off for one hour in the morning, so we don't have to be to the surgical center until 7 am.  The start time will be 8 am.  We also learned that one of us will have to be at the center the entire time.  No going back for a nap or exercising. When we want to eat, one of us will have to stay, while the other go get the food. Hyrum will get his full head of hair shaved...for the first time in his life, Hyrum will have the least amount of hair in the family.  I think he is nervous about this aspect.  He is also looking forward to the "sleepinator."

As we left the Dr's office to head to the hotel, the stress finally wore off and Hyrum fell asleep.  He slept the 45 min. to the hotel (love traffic) and got a good second wind.

We found that the hotel provides dinner Tuesday, Wednesday, & Thursday (all the days we are there) and they have a breakfast bar not a continental breakfast.  We still went to the store for Yogurt and Ice cream as after surgery that is all that Hyrum will be allowed to eat for the rest of the day...which won't be much since it's a 10 hour surgery and it doesn't start until 8 am.

After Dinner and the Ice Cream run, and the Ice Cream tasting (gotta make sure it's good), Hyrum asked to brush his teeth and tucked himself into bed (10 pm CA time).  This boy is SO excited and ready for tomorrow.

Heading to California

It can be quite the ordeal to pack for a month.  It's fall, it can be hot, cold or mild on in one day.  But then you have all the unknowns, that you aren't sure if you will need or not like to have pans, utensils, food that is easier to buy in bulk, coats, shorts, you know the usual.  So it was decided we would take our van.  More room for all things including the kitchen sink.  This meant oil changes, belts that needed to be changed sooner or later got them done sooner, and last minute it was decided it needed to have the tires balanced, rotated, and aligned.  So amongst the packing and cleaning, we went to the tire store.  We were told that two of our tires were bald and needed to be replaced, but that they didn't have the tires we wanted.  So we went to the next tire store, and was told that a bearing on our front driver side tire needed replaced.  It wouldn't make it 12 hours at 80 mph let alone lots of miles for the next month.  Of course, they could replace it...on Tuesday!  So John decided he would do it himself (sounds like his son)!  So three neighbors later, he found someone with the tools that he needed to do the job with.  Did I mention this was discovered at 4 pm on Saturday night?  We had a party in  Salt Lake City for the Colorectal Group at Primary's for the family's at 5 pm.  Did I also mention that Saturday was John's birthday?  What an awesome birthday he had, stayed behind trying to get this fixed.  I got home at 8 pm, got Hyrum's flush done, showered myself and got everyone in bed including myself by 11 pm (I had to be to work the next morning at 5 am).  John crawled into bed at 2:30 am Sunday morning.  The van was grounded.  The part failed and no way he could get it fixed before we left Monday morning.

John knows that I can not answer my cell phone while at work.  So I know that when John calls me, it's usually going to involve a visit and blood of some kind.  Rachel got a new type of EPI Pen, it's called an Auvi Q.  She loves it, because it tells you what you do.  She created a video of it, which I will post (here eventually) for you to see how cool it is.  Well Hyrum loved playing with her practice Auvi Q, so as John and the kids were on their way to church, they decided to drop a few things off to Grandma's on the way.  Hyrum found what he thought was Rachel's practice Auvi Q and learned very suddenly and quickly that he grabbed and used on himself Rachel's actual Auvi Q...with a huge needle it. 


So after work, we loaded the essentials into the car and left everything else to the Lord to help us out.  We were a full house, but we mostly got it in...minus a few things.

Hyrum was very excited to begin the trip that as soon as he saw the loaded up car, he wanted to go "right then".  He finally settled down enough to read himself a book, and fall asleep.

We decided to sleep in, there was no rush Monday morning.  So we didn't get out the door until 7:30 am.  Hyrum was very excited and did great in traveling.

Thanks to some friends in the ward, Hyrum had plenty of things to do.  He colored, played games, read books, and overall only asked if we were there every hour or so.

A little after lunch, we received a phone call from the billing lady for the surgeon. She had received a letter from the insurance denying our in network benefit that we had gotten approved last month.  We confirmed that not only did we know it was approved in network, but that we had a copy of the approval letter with us.  We took a picture and emailed it to her, and she then called the insurance back to let them know.  Least to say, it is still being covered in network.  But to sooth our pounding hearts, DQ came to the rescue.

A little while later Hyrum announced "Mom I think I ate too much sugar"...Me: Really how did you figure that out?..."Cause I think I'm going to be sick"

Least to say, I grabbed a ziploc back for him just in case.

We also played games by creating "Man caves" and naming the various unique cars we saw.  I'm hoping someone can explain what "Chalk Red" is?

Overall he did very good and was very happy to play with his new cousins in California...best part was they had Legos!

Hyrum is Loved

I have many support groups that I have joined over the years for various problems of Hyrums. It has been wonderful for me to learn from others and to part with knowledge that I have gained over the years. I posted on each of them to join in our prayer on Sunday and have had such an outreach of love and support that I wanted to share that with Hyrum.

As I did, I told them where they each lived. We found "friends" in Australia, England, Russia, New Zealand, Mongolia, and all over the U.S. Hyrum looks at me as says "mom half the world loves me. And I bet the other half just doesn't know me, but they would love me if they knew me"

Gift of Love

Hyrum told his dad (who's birthday is today) that he had the best gift to give.
John and I looked at each other and wondered what he could have gotten his dad. But Hyrum surprised us both, when Hyrum proceeded to give John a hug and tell him "love"

Excitement is building

After having Hyrum bouncing off the walls all evening, I was starting to wonder what I could do to settle him down. Shouldn't have worried, listening to big sister describe her evening of fun on the way home from her activity was a perfect "sleepinator"

Gifts for Hyrum

As we are preparing for Surgery, I have gained many friends that have shown an outpouring of love for Hyrum. They are people who know Hyrum from school.  One of those people has become very dear to me, and after reading this blog, she asked if she could do something special for Hyrum.

This is a facebook page that she created.  If you look back in the history to about 2 years ago. We learned that Hyrum had been made fun of at school. He was told that he was an "elf". Upon learning this, John sat him down and told him that he was half elf, and elves are very smart and live a very long time. Well Hyrum knows that he is smart, so of course it makes sense that he would be half elf. This is the background to why she created this page.

https://www.facebook.com/Elves-for-Hyrum-920210094699254/

Hyrum a Bully?

Hyrum informed me that he was a bully, but a nice bully. I asked him what made him think he was a bully. His response "well bullies have fat arms, and I have fat arms"

Surgery Prep

Button up shirts, gum, and trail mix. What else does a little guy need heading for surgery!