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. 

Rude Awakenings

Brady's morning started abruptly at 4:30 when the travelling X-Ray came to the ICU. Brady is sound asleep when the guy, who's probably been awake all night, comes into the room and awakes Brady. He is to be put into sitting position so a large, hard X-Ray board can be put behind him and he is to lay on it. Brady is in a lot of pain when he has to move. I stand at the door watching his face seeing that he is hurting and I can't do anything to help. His nurse quickly gets him a dose of morphine to help with the pain. This is followed by the removal of his arterial line. The tape is removed and she warns Brady that she is sliding it out. We quickly see Brady in excruciating pain. She discovers that there is a small suture holding it in place. I have to go get another nurse to help cut the suture while Brady's nurse tries to stop the artery from bleeding out. The best is when they tell you to go back to sleep because it's still early. Now that Brady's been officially tortured he's saying he's awake. So here I am blogging. 

Things are really going well. We should be heading to the inpatient rooms this morning. He only has one IV line left and 2 chest tubes. His central line and another IV was removed yesterday.  Several attempts were made yesterday to get Brady to sit up. The second attempt did not go well. When he was put into the seated position he became contorted and the pain was evident all over his face.  Last night though after all three of his pain meds were freshly in his system he successfully made it from his bed to a chair with assistance. Brady's was determined to get himself back into bed only requiring help to lay back down.  He's such a rock star. 

We both got sleep last night. The nurse really did leave him alone. We were awaken at 2 for medicine, but that was it till 4:30.  Hopefully we can get a nap today  to help get us through another day. 

Day 2

It's approaching 1 and Brady is resting. He has really struggled with actually sleeping for any length of time even with all the meds in him. He ate shrimp, fries and drank a smoothie for breakfast. The nice thing about Primarys is that the patient can order any food any time of the day and the kitchen staff deliver it to his room. The child life specialist brought some Lego kits for him to build. He did attempt one with his one partially available hand, but he grew tired before finishing. Even though he was exhausted he couldn't quite fall asleep. So I pulled out the lavender and he's been resting since 11. So glad he's getting rest. 

The doctors were pleased with his progress, but we were reminded that he underwent an extensive and long surgery yesterday and he is still fragile. They plan on keeping him in the ICU till at least tomorrow morning. They had him sit up this morning and plan to help him sit in a chair this afternoon. We are grateful for where he is at, but still see the huge hill he still needs to climb.

Surgery day

The day began at 4:30 this morning for Scott, Brady and I. Adrenalin was pumping and we were moving. Addison awoke before we left continuing with her tears that she fell asleep with last night. Katie was nice enough to also get up to console her so we could leaves.  By 6 am, okay so 6:15 because we were running late, we were checking into surgery.  Brady has been a rock star about this surgery. Last night he showed some emotion as we received priesthood blessings. This morning was no different.  He was a little nervous, but was easily distracted by the video games he played. To help with the separation before surgery he received a drug that made him really sleepy.  This helped make our "see you later" go much easier and only a few tears were shed.

By 7:40 he was off to the operating room. By 9 he was intubated and all lines were placed. By 10:30 the incision was made and they had to gain access to the heart. This involved carefully cutting through lots of scar tissue.  By noon he was on the bypass machine. The surgeon was able to repair his valve rather than replace. We are very grateful for the surgeons willingness to honor our wishes. He feels like the valve could work for 8 or more years. This is not a permanent fix. We are hoping for medical advances before the valve fails again. By 3 the doctor was placing some pacer wires to be used at a future date.  We finally talked with the doctor by 4:45, where he was looking very tired!  He was pleased with how things went and how well Brady did.  At a little after 5 we were finally able to see Brady in the ICU. 

He is doing better than expected after going through such a lengthy surgery, but he is not out of the woods. The ICU is such a roller coaster. He is really struggling with nausea and having periods of wrenching. Some of his levels that should be going down are going up so labs are being done constantly and medicines given. His temperature is elevated some, but that is to be expected after surgery. Hopefully he can rest well tonight, the anesthesia can work itself out and the morning will go better.

So it is 11:15 and I'm still awake. Scott has gone to a sleep room to rest till 2 then he will give me the rest of the night. For now it is monitors beeping, Brady begging for something to drink during periods of waking.  Oh the life of a hospital. 

We are truly grateful for our Father in Heaven, who has watched over Brady this day and has allowed things to go smoothly. We are thankful for the supportive messages that have helped lift us during the long and difficult day.  Thank you to you all. I'm not sure I can even quantify the acts of service that have been done. Thank you so very much. 

We did get visitors tonight. Katie brought up Addison and Payton to see Brady. Addison didn't want to leave his side and Payton was struggling with her emotions. She really hasn't healed since Brady's first surgery.  As goodbyes were said and Addison is holding onto my neck crying please don't leave me, I'm thinking, haven't we done this before?  So hard to have to choose between children. The hope is that this is a quick stay and we can all be under one roof again soon.

Gratitude

I felt the need to write to express my gratitude for the great amount of love and support that has been shown to us in the last week or so.  We have received messages from many letting us know they are praying for Brady and our family and Brady has received several gifts and cards, which have truly cheered his soul.

Matthew 25:40 “And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”

Thank you for thinking of us, specifically Brady.

Many people have asked what exactly Brady will be having done.  Last week we spoke to Brady's cardiologist and we were told that the surgeon will not know which of three surgery options he will do until he actually gets into Brady's heart and sees what he has to work with.  Each surgery option brings a different length of stay in the hospital.  The options are, first try to repair the aortic valve, the next will be to replace it with a tissue valve.  Because of Brady's first surgery the coronary arteries may rule out a tissue valve.  The last option is an artificial valve.  The downside to an artificial valve is that Brady would have to go on blood thinners the rest of his life.  We are hoping for a valve repair or tissue valve.  If an artificial valve is necessary then it is what it is and we will deal with it.  During the time Brady is in surgery on Monday we will get updates on how the surgery is progressing.  We will try and update the blog on Monday evening, once things have settled down.

This has been a very trying time for our family and will continue to be difficult, but we could not do this without God's help.  We feel the peace he offers and a great amount of comfort as we pray for his love and support each day.

“God does notice us, and he watches over us. But it is usually through another person that he meets our needs."  - Spencer W. Kimball

Brady after running the IHH 5K last May

Two Weeks To Go...

A wonderful Christmas season has come to an end and school started back up.  Brady will not be attending school in the attempt to keep him healthy for his surgery.  His amazing school teacher will be coming to the house a few times a week to work with him and keep him up to date with his schooling and I will also be working with him.

I feel very blessed at this time for the good health our family has been enjoying as so many people are suffering right now.  It is our hope that good health will continue in our home.  Payton will be heading to high school with a big bottle of hand sanitizer to help keep her protected.

Brady's surgery is less than 2 weeks away Sunday we had a ward and family fast for him.  We as a family are truly grateful for the countless prayers that have already been offered on our behalf and those who fasted for our hero Brady.  We know the spirit of calmness in our home right now is a direct affect of the prayers being offered.  Thank you.

Many ask what they can do to help and right now we aren't sure what to ask for.  My sister Katie will be flying in to help us for 10 days.  My heart is filled with gratitude for this and I know she will be there for Addison and Payton in the ways they need while Scott and I are distracted at the hospital.  Our needs will be hugely dependent on what happens with the surgery and post surgery.  We have been told to plan for a 3-5 day stay at the hospital.  When Brady was born we were told plan for 3 weeks and we were there 9 weeks.  For the second and third surgery we were told a week and he was home the next day.  I think we are just going to have to make decisions as we go along.

Brady is being so brave about this all.  We just went for a walk and discussed the surgery and he said he is nervous, but not that nervous.  He is more concerned about how he will feel post surgery.  Oh, I sure hope we are ready for this!  When his cardiologist started talking about surgery in July I wasn't convinced we were ready yet.  He was still doing quite well, but in the last month or so Brady has started being much more tired and breathing heavily if he exerts himself even a little.  I am grateful for his cardiologist's insight to push us towards this surgery sooner rather than later so that Brady can get back to doing the things he loves.  Brady loves hiking red rock and we already have a trip planned for April.  He created a family goal this year to hike Angel's Landing in Zion's National Park.  If he isn't up for it in April we will just have to return later in the year to compete this goal.  Here are a few pictures of Brady enjoying hiking.

Thanks again for all your support.  My next post will most likely be surgery day (20th).