Wednesday, July 31, 2013

Out of surgery

Joshua came out of surgery about 3:30 this afternoon.  We have been in to see him in the Cardiac ICU (CICU).  He has moments of waking up. When he is awake he is fussy so we try and calm him back into sleep.  His blood pressure and heart rate go up when he wakes up. He really wants a drink of water and can't have one until 9:00 tonight. I am not sure how we are going to get him through until then.  He isn't going for the usual distraction methods. He told us to turn off the movie we had on to distract him.  He told me he wanted to get rid of all this stuff (wires and IVs) and get in the elevator to go home.  As soon as we can we will.  Hopefully, tomorrow we will be about to get some tubes and wires out to he can be held. For tonight when he gets fussy I am just going to climb up on his bed and be beside him.  He is feeling weepy and emotional. He told me he just can't quit crying and that he was just sad. I am going to spend the night in the ICU with him.

Dr.Burch said the surgery went well. The hardest part was getting through all the scar tissue. Joshua's aorta had pretty much embedded itself into his sternum with scar tissue. Dr. Burch took measures to help it not attach so if they ever have to do surgery again it will be easier.  They were able to put the full size tube in.  Everything looks like it is doing what it is supposed to.  Joshua's oxygen level tonight it 95%. He is on a little bit of oxygen.  He isn't on a ventilator. I am so grateful for that. It is always so hard to see him on a ventilator.  He is doing well.  Everything has gone as well as we could possibly hope.  So far he has only had to have one surgery. Dr. Burch said that Joshua wasn't being a wild man tonight.

We feel so blessed. Thanks for all your prayers today.  We are grateful tonight!!

Surgery update #2

Sorry it has taken so long to update again.  I have been waiting to hear something more to update.  It took a lot longer than anticipated to get through all the scar tissue.  Joshua is on the bypass machine now (has been for about half an hour).  Dr. Burch is doing the repair right now.  Everything is going well as far as we know.  After the repair they will do an echo using a tube going down through the esophagus to get a really good look and make sure everything looks good. I'll update again when we hear something else.

Thanks for your prayers today.

Surgery update #1

Joshua went into surgery about 8:30 this morning.  He had some Versed to help him relax and not be too nervous. Unfortunately, he spit some of it out when I tried to get him to take it, so it didn't completely work. He was a little clingy and nervous.  A nice lady from Child life came and offered to let him play her ipad while he was taken to surgery.  It really helped him want to go.  We should hear something from Dr. Burch in an hour or so, when we do I'll update again.

Thanks for all your prayers for Joshua. It was a difficult discussion with Dr. Burch this morning. It is always hard to hear all the things that could go wrong.  I have complete confidence in Joshua's surgeon.  The first thing Dr. Burch said to us this morning was that his goal was to only do one surgery on Joshua today. It made me feel good that he remembered Joshua's history of requiring two surgeries to get it right.

Tuesday, July 30, 2013

Cath update

Joshua has been out of the cath lab for a few hours. He has to lay flat until 5:00 this evening. They didn't have to do any ballooning so we will be able to take him home (back to the Ronald McDonald House) tonight.  He is doing an amazing job of resting quietly.  He is eating a popsicle and watching Teenage Mutant Turtles. When he finishes that he can try eating anything else he wants. He was ordering a  corn dog and ice cream when I left to get some lunch.  Yesterday that was his choice of lunches also.  We went to Arctic Circle yesterday with Rebecca for lunch. He knew exactly what he wanted. He could get used to eating corn dogs everyday.

Dr. Martin only had to coil off one long vessel that was taking blood where it didn't belong. There was another that could cause him to have too low of oxygen in the future, but they decided to just wait and see if it needs coiled off sometime in the future.  Joshua is having some issues with irregular heartbeats and SV rhythms instead of sinus rhythms. We are checking with cardiology to see if they are very concerned.

Joshua was not a happy camper this morning, but he is doing much better this afternoon. He is responding to the nurses questions and listening to them.  Surgery is scheduled for 8:30 tomorrow morning. We'll have to be here at 7:00. I am grateful for 7:00, we had to be here at 6:00 this morning.  Annie, the nurser practitioner said to plan for 7-10 days stay after a Fontan.  We can do this.

I am so grateful that everything has gone well this morning. I am glad I can sleep one more night out of the hospital before we start our stay. I am grateful for the new Ronald McDonald Family room at PCMC.  It is so nice to be able to fix lunch here and run back down to Joshua's room.

Cath Lab today

Joshua is in the cath lab this morning.  I think he is getting tired of the whole hospital thing, or maybe he is just tired. I would be tired all the time if I only had 77% oxygen in my blood.  He was fussy and clingy this morning. He refused to let us put hospital pajamas on him.  We finally got the top and socks on, but he is still wearing his striped pajama pants. If that brings him comfort,  I'll let him wear them.  He had a hard time going into the cath lab.  I walked in with him and held his hand while he fell asleep.  It was emotionally difficult even though it only less than a minute for him to fall asleep.

The cath will involve going in either his neck or under his collar bone to see his artery to his lung and another through his leg.  They will get a good picture of his heart.  If their are any collateral blood vessels off his heart they will coil them off. If any of the veins are too small they will use a balloon to expand them. If he has to have the expanding he will have to stay overnight tonight.  I'll post when we get to visit with the doctor. 

Monday, July 29, 2013

July 29th Cardiology visit

We left Powell yesterday afternoon and drove as far as Scott and Molly's house in Montpelier  Idaho.  We enjoyed the evening catching up with them. Emma was so excited to stay with Sadie. We decided to let Emma and MaryAnne stay with Molly and Scott. We are grateful they are willing to let them stay. Karan will bring them home later this week and stay a day or two. We are also grateful the children will have Grandma there for a visit. We spent the night at Molly and Scott's then got up early this morning to make it to Primary Children's for a 9:30 am appointment.  It was a beautiful drive.  We made it just in time to do chest xrays, an EKG and an echo.  We visited with Doctor Menon. He said Joshua looks good and he is happy with his heart function.  He is concerned about Joshua's size, he isn't a very big boy.  If he is too small they can't put as big of a tube in as they want to, but he doesn't think it will really be an issue.  Joshua is wearing a holter monitor tonight. It will watch his heart beat for 24 hours and make sure he isn't having any rhythm issues. If I can get pictures uploaded I'll put a picture of him with his holter monitor on.

We were blessed to get into the Ronald McDonald house. It will be such a blessing while we are here. It is close to the hospital, and it has a well stocked kitchen that is free to be used.  Tonight we had to find our own dinner, but the rest of the week there are groups signed up to fix meals for the families staying here. What a blessing this will be for us.

Joshua has to be at Primary Children's at 6:00 tomorrow morning. He can't eat or drink after midnight.  He will be in the cath lab tomorrow and it is possible he will spend the night, depending on how his recovery goes.

Tonight we are all tired and ready for a relaxing evening.  Thanks for your prayers.

Sunday, July 21, 2013

A wonderful surprise....

 On Wednesday we bought a 2007 Kia Rio. We decided to let Bethany take the Cavalier when she goes to school. We wanted another small car.  It is a fun little car to drive.  This is what it looks like.

  It was exciting to buy a new car, but that wasn't the best news of the week.  Wednesday was also the ward Pioneer day picnic.  The primary was in charge.  It went so well! Much less stressful than the Christmas breakfast last year.  It was much easier because I ordered food and didn't try and cook it all myself.  We had square dance instruction that was so much fun.  There were lots of new members and part member families there to fellowship with. It was wonderful!!

We got a wonderful surprise on Friday afternoon when Rebecca called to say she was on the way home for the weekend.  This weekend has been such a blessing to have all ten children home together before Joshua's surgery.  I needed to have them all here and spending time together. I am so grateful she came home.  She has loved being with all her brothers and sisters.

Neil took Matthew, David and Dallin to Renner Reservoir Thursday, Friday and Saturday morning.  They had a great time together.  They caught lots of fish but they released them all after.  That is my kind of fishing.  Those of us who stayed home had a good time together. We watched a movie and made pizza on Friday. Thursday we had some technical difficulties with the freezer alarm, but it wasn't too big of a deal.

Today has been a good Sabbath day. It is so nice to stay home and have all the children here.  Next Sunday we will be leaving for Utah. I am not ready for this, but my faith is stronger than my fear. I just have to remind myself of that.  I found a story that is a good way to think about Joshua's heart.  Here it is:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus 'I don't want to leave, I like it here, and I will miss you'. Jesus reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, 'How about if you leave half of your heart here with me and take the other half with you, will that be okay?' The angel smiles and says, 'I guess that will work'. But the little angel is still a little scared. He asks, 'Will I be okay with only half of my heart?' Jesus replies, 'Of course you will, I have other angels there that will help out, and you will be fine.' Then Jesus gives the angel more details about his plan. He says 'When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday, And when it is time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.' -Author Unknown 

Thanks for your prayers for Joshua!!  We are so grateful. Please also pray for our other children that will be staying home alone for who knows how long.  They are responsible and capable, but it will be difficult at times.  I know there is a plan and I trust the Lord will take care of us.

Sunday, July 14, 2013

Our week activities, Paris pictures and we have a date for the Fontan surgery

We had a busy week around here, I think that is usually the case. It is good to be busy.  Julia and Emma went to girls camp Tuesday through Thursday. It was a ward camp this year instead of the whole stake. They had some interesting adventures. They had a rattlesnake in camp on Thursday morning. Julia was glad she was still asleep in her tent when it decided to come into camp for a visit.  They went on a 15 minute walk that turned in a 2 1/2 hour hike. The joke is no 15 minute walks.  They had a great time and came home tired. We are grateful for the amazing leaders who planned Girls camp and spent the time to go with them.   Thanks so much!!!

Yesterday Neil, Matthew and Emma went kayaking at Bighorn Reservoir. They went with the Forest Service on an organized trip. They had a good time kayaking for a couple of hours.  They stayed after to fish for a few hours. Matthew only caught one 4 inch baby catfish, but he just loves fishing even if the fish aren't biting.  Bethany and I clogged in Powell yesterday for Crazy Days.  Funny story...I forgot to go out for one of our songs. I saw Bethany and Lisa go out and didn't think much about it. Suddenly I realized I was supposed to be out there and had to hurry out. It was easier to smile through that song because I was still laughing at myself.

Here are some pictures the girls took in France. They had a great time together.  They came home tired, but glad they went. They experienced a pick pocket in line behind them, but none of them had anything stolen.  They nearly didn't take their camera, they forgot it and had to come back to get it. They took some neat pictures, but not as many as they would have liked. They didn't have the right kind of charger for the battery to use in France and had to borrow chargers from others in the group. They saw some amazing things and I am glad they went, but more glad to have them home again.

I have been thinking about getting my hair cut for several months and looking at different styles I might like. I finally decided to just do it. I really like my new hairstyle. It is so fast and easy to do.  Here is a look at the new look.

We are headed to Salt Lake on July 28th for Joshua's fontan surgery. He has appointments at Primary Children's on the 29th and a visit to the Cath Lab on the 30th. He is scheduled for surgery on July 31st.  I have been afraid of this surgery for a long time (ever since I knew he would have to have it). Our faith is stronger than our fear and we will get through it.  We are leaving all the other children here in Powell while we go. It will be a challenge and I will worry about them, but I know they are able to help each other and take care of each other.  In a way, I am glad to not have to always have this surgery in the back of my thoughts.  I know the Lord has a plan for Joshua, I just have to do my best to trust and follow that plan. 

Tomorrow is a big day!!

Tomorrow our sweet baby girl turns 21!!!  We are so proud of the amazing young lady you have grown up to be, Rebecca!!!  We love you and wish we were there to celebrate with you. We will bake a cake here in Powell and sing to you.  Hope you have an amazing day and year ahead!!!  Love, Mom and Dad