Brady's 11th Year

Brady celebrated his 11th birthday at the beginning of the month and we are so thankful to still have him with us and him doing so well.  Yes, he was diagnosed with arthritis in October, but with the help us his weekly shots he is moving around significantly better.  After a recent rheumatology appointment Brady was put on an additional med (copay of $1500) that is also a weekly shot since his arthritis had not completely gone away.  He was still having significant morning stiffness and new joint pains popping up.  So every week I have to find fat on his arm (which does not exist) and attempt to give him shots that are pain free.  He is a good sport and doesn't complain.  

Brady saw cardiology in December and had a thorough evaluation done of his heart and his aortic repair is holding up well.  His heart pressures were elevated a little more than they had been and there was a discussion to possibly put him in the cath lab to have a stent placed in his pulmonary valve, but there was a worry that when the stent was popped open it would cut off the main artery supplying blood to his heart.  Dr. Day determined that Brady was doing well so we were not going to tinker and possibly cause bigger problems.  His pacemaker is still functioning well and the battery has another 4 years before it needs to be replaced.  The last two uploads from the data on his pacemaker has revealed unusual events.  The first one occurred in October and we were given the exact day and time of the event.  I chuckled because it occurred after he had done a 90 foot rappel into Goblins Lair and was jumping on Goblins.  We were sure we would hear of another event occurring on December 24th as Brady rode on all the scary rides at Knots Berry Farm, but rather it occurred on some random Saturday in December.  The events are enough to catch their attention, but nothing that needs to be done.  

The arthritis meds are working to make his pain better, but they weaken his immune system so this winter has been challenging.  He has had several sicknesses each lasting quite some time.  He caught a virus in March that laid him flat for several weeks.  He was more tired than I had ever seen him and we were concerned that something was going on with his heart.  After blood tests and a few other tests we were told his heart function looks great.  The tiredness must be coming from his arthritis.  Such a juggling act.  

He continues to have his Cyclical Vomiting episodes every 11 weeks and they last for nearly a week.  Brady has some medicines he takes during these episodes that make them much more manageable, but he is always grateful when another round is finished.  His symptoms are vomiting, dizziness, sensitivity to light and tiredness.  

I feel Heavenly Father is incredibly merciful with Brady.  He may be sick a lot and has a lot of days where he doesn't feel well, but he always is well when we have big events planned.  We went to California over Christmas and visited Disneyland, Knott's Berry Farm, the beach and he even hiked Angels Landing in Zion's on the return trip.  We have been rock climbing and rappelling several times and for Spring Break we visited Goblin Valley, Ding and Dang canyon and Arches.  He was sick before these events and following, but was well when it counted and was able to fully enjoy the trips themselves.  

Here are a few photos from the last 6-7 months.  

 Halloween Costume - how appropriate is the tin man!

 Playing on the beach in CA

 Angel's Landing.

 90 foot rappel into Goblin's Lair

 Advantages of being skinny you can fit in places others can't.

 A little fun in Toon Town in Disneyland.

 Could not keep this boy off the scary rides at Knott's Berry Farm. 

He even rode the Xcelerator.

 Hot tub in the backyard of the house we stayed at in CA.

 Plenty of this the last few months.  Sick in bed.

For your enjoyment this is an X-ray of Brady's chest.  

All those marks that look like pencil marks are his sternal wires.  

The Fun Never Ends

For the last 4-5 months Brady has been suffering from leg pain that seems to get worse daily.  At first we thought it was a consequence of taking Brady off of his overnight oxygen. Despite putting Brady  back on oxygen, things did not improve.  Brady had a 4 day trip to heart camp, 2 weeks visiting grandma and grandpa in WA, followed by his mother having major surgery and she was basically not aware of anything going on!  Brady's pain intensified throughout the summer and fall, so an appointment was made to see an orthopedic doctor.  The appointment was set for the end of October.  A few weeks ago Brady woke up in more pain than normal and he said he didn't know how he was going to wait three more weeks to see the doctor.  I called our amazing pediatrician who ordered some tests and was able to get us in to Orthopedics that week.  Brady had several x-rays done to look at his legs (revealing fluid on his knees), and a doppler on his femoral artery to check blood flow (revealing great blood flow).  The orthopedic doctor wanted to remove the fluid on the knees and test the fluid.  This was done under sedation and the fluid revealed nothing, although the doctor removing the fluid noticed some damage to his synovial sack on his right knee.  This led to a referral to see a rheumatologist, which occurred today.

I'll be honest, when the doctor suggested seeing rheumatology I was anxious.  I started to imagine a life of pain for Brady that would interfere with his and our family's active lifestyle.  I was concerned with the type of life Brady would have to lead aside from his heart condition.  I was relieved to hear today, after receiving Brady's new diagnosis of juvenile arthritis, that it is treatable and with the right medicines he can be pain free.  I even learned that 25% of the time it will go away, never to come back again.  Brady is always in the small minority when it comes to medical conditions, so we can hope for the 25% right?

These are Brady's knees today after 15 cc's of fluid was removed from his right knee and 10 cc's of fluid from his left a week ago.  The doctor explained that the arthritis has been going on for a long time and because Brady is so tough and apparently doesn't complain of the pain he is feeling, we had no idea he was suffering. When an area of the body is swollen, like his knees, extra blood goes to that area and increases the bone size, hence Brady's really big knees are a sign of his arthritis.  

Not only does he have arthritis in both knees, but both shoulders and both elbows as well.  Before we can start a treatment plan the doctor will be talking with cardiology to determine which medicines will be okay with his heart.  We should hear back in about a week and start a treatment plan then.  

There is a 5% risk of developing Uveitis when you have juvenile arthritis, which is an inflammation of the eye.  Unfortunately, by the time you see that your eyes are inflamed the damage is already done.  What this means is Brady will have to see an eye doctor every six months to be screened for Uveitis.  

He cannot seem to catch a break, but he doesn't let it get him down.  He remains positive and upbeat wanting to make the most of each day.  

This past weekend we spent time in Goblin Valley and the Moab area hiking and repelling.  Scott has a new found love of climbing and rappelling and took the family on some new adventures.  We were all terrified, but we did a 90 foot repel into Goblin's Lair.  

 Amy is repelling, Addison is being lowered

Brady rappelling

We feel blessed every day that we get to enjoy life with Brady despite the challenges that come along with him.  He is a great young man and I know you all agree with me!

Status Update - long overdue

I appreciate those who continue to ask and are genuinely concerned for Brady's well being.  I haven't posted in awhile because he is doing so well there really isn't much to report.  Here is a summary from the last few months.

Brady was very diligent to follow the doctor's orders with his activities and looked forward to April when he could finally return to normal activity again.  For our spring break trip in April we went camping with some friends and went on some great hikes.  On the last day Brady learned how to kayak and loved it.  

Red Cliff Recreation Area

Getting dirty at the Virgin River 

Kayaking at SandHollow Reservoir

He celebrated his 10th birthday by attending the Lego exhibit and having an outdoor movie with family friends.  He said it was one of the best birthday's ever.  Brady loves all things Lego.  He has so many sets that he has acquired over the years and he takes them apart and rebuilds them over and over again.  Visiting the Lego Exhibit opened his eyes to all the different things he could do with Lego.  

 There was a large area blocked off with Lego covering the floor where kids could come and create.  Addison and Brady spent almost 2 hours creating.  

He requested mini-cupcakes for his birthday treat because he could fit one into his mouth in one bite.

 A Sunday outing to a local park.

Easter Sunday

Since his surgery he has been able to gain 2-3 lbs.  That may not seem like a lot for your average child, but he is not average.  Brady has been about 55 lbs for the past year or more and could not gain weight even though he eats so much food.  His heart has to work so hard to keep going that he burns extra calories.  His surgery has been able to help his heart not have to work as hard.  

Brady had his follow-up appointment with his cardiologist on Tuesday this past week where an echo revealed his repair is holding and nothing remarkable on his EKG.  Brady had his pacemaker put in at age 4 and ever since then he has paced between 20 and 25% of the time.  That means his pacemaker would shock his heart every 1 in 5 or 1 in 4 heartbeats.  Most of the pacing was done during the nighttime hours when his heart rate would drop below 60 bmp.  When his pacemaker was checked on Tuesday he was only pacing 9% of the time.  That is a significant drop in use.  A great sign that his heart is doing better.  Brady also asked the doctor during this appointment if he could come off his nighttime oxygen.  In all of Brady's 10 years of life he has only had 1 year where he didn't sleep with oxygen.  The doctor felt like he could try for a month without his oxygen.  If he felt more tired or developed any other symptoms then he would need to go back on.  We will see what happens over the next month.  For the time being Brady is getting use to falling asleep without the hum of the oxygen concentrator. 

We are beyond grateful for how well Brady is doing.  In the last month Payton's body seems to be falling apart and has required several doctor's appointments, an MRI on her leg and physical therapy appointments.  Both girls had a bad virus in April.  Addison will be getting her tonsils out this Thursday.  Brady has been the healthy one and he isn't shy about telling his sisters this.  He has really gotten back to living a very normal life.  His heart is far from perfect as he runs out of energy pretty quick and is out of breath after little physical activity, but he doesn't let this stop him.   

Thank you for your continued support and prayers.  I know this has made all the difference.

Pinewood Derby - The Mystery Machine

The Bumpy Road to Recovery

Brady's surgery was 4 weeks ago and he continuing to recover quite well.  A day after arriving home he was on the floor building Lego's.  I kept thinking that sitting on the floor, hunched over, can't be comfortable, but he was determined to return to his normal activity.  Within a week of coming home he was off pain medicine during the day, although we would still give him some Tylenol before bed to help him sleep more comfortably.  Brady runs around and jumps up and down just to show people how well he is doing.

Despite how well Brady is doing, we have visited two ER's in the first week of being home.  The first trip was to the American Fork Hospital.  Brady's nose started to bleed his first Saturday home around 9 pm.  We went through our normal routines of plugging it up and waiting for it to stop.  After an hour and a half we started to get serious and squeezed the nose and applied ice.  When that did not stop it I tried a few oils and the nose kept on bleeding.  Katie and Scott gave up waiting for it to stop by 11:30 and went to bed, since they were both mostly asleep before that.  By midnight there was no end in sight.  Brady and I said a prayer and asked for it to stop or if he needed to go to the ER that it would be apparent.  Well, the nose plugs kept getting saturated with blood so off to the ER we went to get his nose cauterized.  By the time we made it to the ER Brady's nose had been bleeding for 3 1/2 hours.  The doctor first had to stop the bleed by stuffing his nose with a cotton ball soaked in Lidocaine and Afrin nasal spray.  The doctor then put on a nose plug and left it up for about 20 minutes.

After about twenty minutes the doctor returned, suctioned his nose and determined where the bleed was coming from.  The bleed was about the size of a pinky finger tip.  The doctor then proceeded to stick up match-like sticks to burn the area that was bleeding.  By this time it was 2:30 am and we were both exhausted.  The ER is an exciting place on a Saturday night.  There was a patient screaming at the top of her lungs, "Stop that!"  "Leave me alone!"  Brady and I had quite a laugh because we imagined that would be his sister Payton if she had to go to the ER.  She does not like anything to do with hospitals.  It turns out the lady screaming was incredibly intoxicated and the police brought her to the ER because they didn't have anywhere else to take her.  She did not want to be there, hence the yelling.

Following this incident the week was fairly calm.  Brady seemed to be short of breath always and he was incredibly itchy on the Friday.  I called up to the surgeon's office to get some input.  They were concerned that he was short of breath so we were sent for a chest x-ray to check for pleural effusion.  Before we even made it home from the hospital we were called to say the x-ray looked better than it did a week ago, so it was not pleural effusion.  They were puzzled as to why he would be so itchy.  He was told to take Benadryl and that seemed to help.  The itchiness was gone by Saturday.

On Sunday we felt Brady was well enough to attend church and well on his way to a full recovery.  Sometime during the third hour Brady started to not feel well, but he didn't tell anybody anything about how he was feeling.  He found me after church and told me he didn't feel well.  Something didn't feel right.  He was kind of panicking, which in turn sent me into full "panic mode".  We arrived home and I hooked him to his pulse oximeter (yes we have a pulse oximeter) and listened to his heart.  The pulse ox machine was indicating his heart rate was 51 bpm.  His pace maker is supposed to kick in at 60 bpm so we shouldn't ever see his heart rate below 60 bpm.  I checked his rate myself by listening to his heart through the stethoscope (yes we have a stethoscope) and counting beats for a minute, and sure enough I counted 52 bpm.  I called up to Primary's to get input and while I was on the phone his heart jumped into the 100's, then back into the 70's, then to 129 and Brady is saying he doesn't feel very well.  We quickly got a bowl for him and he threw up.  We were then instructed by the cardiologist on the phone that we need to get him to the hospital.  We had Addison and Payton go to our friends house as we made the trip north to the ER.

Brady received great care at the hospital, but in the end they could not figure out what happened.  His heart was beating much faster than normal, but we didn't see the erratic heart rate like we were seeing at home.  He was monitored for a few hours, his pacemaker was checked and then we were sent home with a holter monitor.  

A few days later Brady had his post surgery appointment where he checked out great.  The holter monitor revealed nothing significant, so Brady's episode on the Sunday was a mystery.  This was very frustrating to have the doctors dismiss something that was so scary for me to watch happen, but since they didn't see it occur then they couldn't really say what happened.  I would have appreciated something like, "Arrhythmia's are typical after heart surgery, but it seems like he is okay now."  But the interrogation of the pace maker revealed that his heart rate never dropped below 60, which means I couldn't have actually counted 52 beats.  One of the doctors we saw on the Sunday said that he believed me, but just couldn't explain the discrepancy.  Since all the numbers pointed to him being well, the doctors cleared him for school the next day if we wanted.  Given we were only three days out from the Sunday's incident I was not willing to let him go so soon.  We worked the next few days on getting him caught up on all his school work and planned to send him back the following week.

Three weeks post surgery Brady was back at school.  He received a warm welcome back from his class with a doorway decorated with balloons and a welcome back sign.  Could Brady have asked for a better teacher?  I think not.

As Brady is well on his way to a full recovery I have tried to return to normal living.  I had several really hard days two weeks ago right after the second ER trip.  After a talk with a close Heart Mom friend I was able to recognize that I was stressing over my fears of the unknown and the "what ifs".   Living with a heart child is not an easy thing, wondering if his heart will stop working properly, will he catch an illness he can't fight, will he gain weight, will he grow or will he die because of something you have missed.  I really struggled with these and many other fears when Brady was a baby and I ended up in therapy to help recognize that these thoughts are just fears.  Recently I was reminded that I needed to return to living in the present and not worrying about what might happen.  Once I was able to make the perspective switch I was much happier and found joy in daily living again.  From here on we will deal with challenges as they arise and will refrain from mentally dealing with the challenges that have not and may never happen.  

We are home!

Brady had another great night last night.  He even learned how to sleep through receiving oral medicines.  Now that is tricky to do!  The doctors determined during rounds that he was fit to head home.  This made Brady very happy along with the rest of us.  The last IV was removed, instructions given, room packed up and we were heading to the car.  When we got the wheel chair to the car I expected Brady to slowly move from the chair into the car.  Oh no.  I really wish I could have caught it on video.  He practically jump up from the chair and into the car.  He said after he got into the car, "If I am in the car they can't take me back!"  

The drive home was uneventful, but sitting upright for that long did bring on some additional pain.  A stop at In-N-Out Burger drive thru helped him forget his pain for awhile.  Finally a decent meal.  I am not sure he has stopped eating since being home.  He ate a bowl of popcorn right before dinner and still ate a plate of pasta.  He lost 3 precious pounds in the hospital so we really need to get that back and more.  

We were pleasantly surprise upon arriving home to find our yard completely decorated welcoming Brady home.  Thank you to those who helped Brady feel loved yet again.  Katie and Addison had arrived home shortly before we did and apparently Addison said over and over again, "This is awesome!"  

Brady has continued to improve throughout the day.  We have both done plenty of resting, which has been so needed.  I am pretty sure I could sleep for the next 24 hours and maybe then start to feel somewhat normal.  Luckily rest is what Brady needs right now so I should be able to catch naps here and there and will return to normal in no time.

The discharge orders were to keep Brady home from school at least till his post op appointment, which happens at the beginning of February.  If he checks out okay he may be allowed to start back at school attending only part days to start.  His sternum is more fragile than most kids after heart surgery because of all the complications from his first surgery.  The surgeon said that his sternum is rib head to rib head.  Because of this he will be put on no strenuous activities for 3 months instead of the normal 6 week recommendation.  Brady is a 9 year old boy and really wants to get back to playing.  He pushes himself to sit up and color only to feel additional pain on his sternum.  He has shown such improvement in the last 48 hours that in 48 hours from now he will be that much better.  Hopefully we can help him see that so he doesn't keep getting so frustrated.  

As promised, here are a few pictures from the week.  

 Scott and Brady passing the time before surgery

 The Ronald McDonald family room in Primary Children's Hospital.  We spent the day in there during Brady's surgery.  We received updates via a pager.  This is a much nicer place than the surgery waiting room!

 Post surgery

 Anesthesia hadn't quite worn off.

Morning of Day 2.

Addison sure missed her playmate this week.

 End of Day 2.  We had made two attempts during the day to sit up, the second one being a bad experience because of the excruciating pain he felt.  That evening though he told his nurse he was ready to sit in a chair and he practically got himself there.  He is so determined!

 Because of all the IV's and arterial line Brady didn't have the use of one of his hands.  He really wanted to build the Legos the child life specialist brought him.  He built these with his one good hand.  

 Visit from his friend Dani. (Day 3)

 Just chill'n in the hospital chest tube free. (Day 4)

Brady's second walk Thursday out to see Spiderman.

 Visit from his friend Mirae.

 A field trip Thursday night around the hospital.

This week has been kind of a blur as I look back at these pictures.  Brady truly did amazing and we know as a family that this miraculous week was directly because of the fasting and praying that was done on his behalf.  There really weren't any hiccups to his surgery and recovery.  This morning I was sure something would go wrong preventing him from coming home.  Based on his last heart surgery experience where everything seemed to go wrong how could this one not have anything that went wrong.  Well so far so good.  Thanks to God for his bounteous blessing.  Brady is truly an inspiration in our lives and I am so glad to continue to have him here with us.

Almost There

Today has been a fabulous day for Brady.  We both slept well last night and were even able to sleep till 6 before having to go for his chest x-ray.  Brady was excited to ride in a wheel chair to get that done.  I somehow convinced Brady to go back to sleep when we arrived back and we slept till 8:30 when we were once again woken up to find out the doctors were there to do rounds.  The doctors were pleasantly surprised with how well Brady has been doing.  He was to receive a quick dose of Morphine so they could take out his chest tubes and remove the bandages on his chest.  Although Brady laid there and took it all like a champ, he really had gone to his other place trying to block out the pain they were inflicting on him.  He really shut down after they were finished, but no time to withdraw we were off to Cardiology for an echo.  Preliminary results of the echo were that his heart function looked the same as right after surgery so it looks like the repair is holding so far.  This obviously is a good thing.  We finally made it back to his room by 11 where we were met by another visitor.  Thanks Christina for coming up bearing (sp?) gifts.

With Brady's freedom from the chest tubes he is able to move around much easier.  He spent time in the chair with his feet up watching t.v. and playing lego.  After trying to sit up for too long he started to feel pain in his chest so he laid back down in bed and rested the afternoon away.  Another one of Brady's friends visited him today, although he wasn't much fun because he used up all his energy in the morning.  

One goal for the day was to walk three times today.  The tech bringing him back from his echo asked him if he thought he could walk back to his room from the elevators.  He said he would give him a prize if he did.  Brady got up out of the wheel chair and stated he would do anything for a prize!  Brady did complete the goal for the day taking two additional long walks.  He was spent after each one, but he is sure doing awesome.  

When it was time to order breakfast this morning he wasn't so sure he wanted to be at the hospital anymore.  He was really tired of hospital food and just wanted his mom's cooking again.  He did find out he could order a bag of microwave popcorn which ended up being his afternoon snack.

Katie brought the girls up in the evening and they loved Brady's new large and spacious hospital room.  We were no longer stepping on each other.  After some collaboration the kids decided Brady needed to go on a field trip in the wheel chair.  We went down to the cafeteria for an additional dinner for Payton and Addison.  During this meal time Brady's sense of humor returned.  His face was lit up and he was cracking jokes.  It was so good to see him smile again.  

I am home this evening for a sleep at home.  Addison and I drove home in a car together and even though it was 9:00 at night she had so much to tell me that she couldn't fall asleep.  She talked my ear off the whole drive home.  I think she missed me a little.  Scott is at the hospital for the night.  It appears that Brady will come home in the morning.  The medical staff have been hinting at this today, but we will know for sure after rounds in the morning.  

Thank you for all the prayers that have been offered.  Brady's surgery itself has amazed many of the doctors that such fine work was able to be done to repair his valve.  Brady has made remarkable progress all week long.  I know this is a direct result of prayer.  Thank you.

We have been taking pictures all week of Brady's journey.  Once we are home and settled I will post pictures on the blog.

End of day 3

The day is ending better than it began. We finally made it out of the ICU and onto the floor. We were told this morning that we would be transferred before lunch, but a message sent wasn't received that Brady was in need of a bed on the surgical floor. One of Brady's nurses from his early days (infant stay,who we adore) went to check things out and resolved the communication error. We made it to his new room by 5'ish. We love the new room. We have a room with a window, although the air quality is terrible, it's just nice to see outside.  The room is twice as large as the one we left, it's own personal bathroom, a bed for me to sleep in, a place for all our stuff and no crazy visiting hours.  We are happy. We will be thrilled when we get to go home.  As I've been typing this the tech just came in and made up my bed for me. I'll say it again, we are happy to be on the floor. 

Brady has had a great day. He started the morning out with pancakes, bacon, sausage and strawberries. He asked to sit in a chair and played hospital bingo there. After 2 hours he got back in bed and continued to sit up and build Lego kits.  While putting together the puzzle he won in hospital bingo the pain got the best of him and he shut down. He received some extra pain meds and laid low the rest of the afternoon catching a nap or two.  He did get a visit from Addison and Katie for a little bit during that time.

Shortly after making it to his new room Brady's friend Dani and her mom (my good friend) came to visit and also Brady's awesome 4th grade teacher made the long drive as well. We truly love the visits from healthy friends because it helps break up a long day. My college roommate came yesterday and I was very grateful to her for that. She was able to help me move my stuff to our new location in the ICU.  

To finish the day off Brady will be getting cleaned up and hopefully this will lead to a restful nights sleep except when we get woken up for meds every three hours and a trip down stairs to have a chest X-Ray at 5 am.  Oh the life of a heart kid in the hospital. 

I do need to mention another miracle that has taken place. Some of you are aware that I have been battling with nerve pain caused by a bulging disc for several months. I've been seeing a chiropractor and have been making progress, but haven't been symptom free yet.  I sleep at home mostly on my back with a good pillow to avoid numbness in my finger tips or my arm feeling electric shocks radiating down my arm. Nights have gotten better over time, but only with carefully chosen sleeping positions. That was until Monday. I've been sleeping with what the hospital calls pillows, in chairs and recliners (not comfy ones).  I've slept in whatever position I could. I should be in complete pain, yet I am not. I have been very worried abou how sleeping would go for me. I know my prayers have been heard and answered for both Brady and myself. If when I go home and the pain is there again, I will be okay because I didn't have to suffer while I'm here tending to Brady.