Monday, August 26, 2013

How to get wet in only 3 inches of water and BIG changes at our house this week

Have you ever wondered how to get completely soaked in only three inches of water? The other day the middle children were playing in the neighbors pool. Lydia really wanted to play, but I didn't want to take her over there. We got out our little pool and she had so much fun in her three inches of water.  She came in completely soaked. Here is how you can get soaked in three inches of water and have a great time doing it.
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I don't know why the video in the middle doesn't work. It was really cute of Lydia jumping rope and singing while jumping on the trampoline. I've tried to upload it a couple of times with no luck.  Sorry about that.

We had some big changes at our house this week.  On Monday we had a loss of wisdom. Bethany lost all 4 wisdom teeth. She is our first child to have this done. She did really well.  She even felt like doing a little shopping in the big city afterwards.  We took Julia and Emma with us to Billings to do some clothes shopping.  We had fun and they all found some good buys.  Neil made jello while we were gone so Bethany would have something cool and soft to eat.  Someone was caught redhanded in the jello. I'm pretty sure it was Joshua.

Another big change involved moving bedrooms.  Matthew has been living in his yert for awhile now. On Thursday we moved Bethany into the dorms here at Northwest.  On Saturday Matthew moved into Bethany's room.  It doesn't take long around here for your bedroom to get claimed.
Ready to begin this college adventure

Bethany's new domain

Matthew's new room

We also did a few home improvement projects, here are a few pictures.  I really like this idea for storing wrapping paper. It was really easy to do.  We took the carpet out of the boys room and put these foam tiles down. They like the checkerboard pattern.  We also put hooks in both halls for bath towels. I hope this will help with all the laundry around here.  Oh, and we bought a new top load high effiency washer on Thursday. My other washer was randomly ripping clothes. I had had enough and so we bought  a new one. I can fit so much in the tub!! It is so nice.
Storing wrapping paper behind the door
Each child has their own hook for their towel

New flooring in the boys room

We had the missionaries over for dinner on Saturday. Lydia got excited when we told her they were coming. She said, "Hooray! Grandma and Grandpa are coming today."  It was so cute. I was happy that she remembered Grandma and Grandpa are missionaries. She prays for them everyday!! We love you and are glad you are serving the Lord in Scotland.

Saturday, August 17, 2013

A busy week at the Waite house

There has been so much happening this week. I'll try and give you a quick run down.

Sunday we took Joshua just to Sacrament meeting and then had Bethany bring him home when the YSA ward finished their meetings.  During Sacrament meeting Joshua discovered he could take his oxygen off and run free.  Several people in the ward had to smile as he pulled off his oxygen and took a run around the chapel.  I am sure they had to shake their heads that he just had heart surgery and was off running.

Some of the week's activities included signing Emma up for classes at the Middle School, Primary meetings, a free lunch downtown, swimming, playing with friends and a Snow cone stand.  Emma and her friends made $28 doing an afternoon snow cone/brownie stand.  I think I should go into the business if it pays that well.

This morning Neil, Matthew, Emma and Julia went to the temple to do baptisms.  They had to leave at 6:00. I stayed up and wrote the Primary Sacrament Meeting presentation. I was really happy with how it went.  Emma stayed in Billings and helped babysit for a few friends while they went to the temple.  This afternoon we went to the free day at the Powell pool.  Lydia, Dallin, and MaryAnne loved doing the obstacle course. Lydia was so determined that she wanted to try it.  Dallin started out so slow and careful, he really didn't want to fall. By the end he was getting much faster and braver. Bethany, Julia, and Matthew decided to stay home. Joshua would have loved going, but no water for 6 weeks after surgery. Emma came later when she got home.

Tonight all the children are tired and ready for bed. Sounds like an early bedtime is in order.

Thursday, August 8, 2013

A slideshow of Joshua's fontan journey

Here is a slideshow I put together of the pictures of Joshua's hospital stay and the first day home.  Hope you enjoy seeing our little heart hero and his journey.

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Also just for fun here are a picture from the Glenn surgery when Joshua was 6 months old and the fontan surgery. It's amazing how much they are the same.

Home has been good for Joshua

Sorry I haven't posted since we came home.  It has been so good to be home!! It has been busy again, though. Getting back into the routine of having everyone together again and taking care of household things has kept us busy.  It was so good to come home and see the children again. Some of the children waited up for us and it was fun to be welcomed home.

Joshua has done amazing since being home. He has been so happy and enjoyed playing with the kids. We are trying to keep him doing quiet activities.  He is still on oxygen so he can't go too far or get into too much mischief.  He is sleeping upstairs, so I can check him several times a night.  It's really true, there's no place like home.  His rash has gotten much better. He is just doing amazing!! We feel so blessed. Thanks for all the prayers said for our family and Joshua.
At home watching a movie. He was just grinning from ear to ear, but I couldn't capture it on camera.

We went and saw Dr. Wiggins yesterday.  He said everything looks really good. We are going to keep Joshua on oxygen for the next month, just to help his lungs adjust to the new pressures in them.  Joshua had a bit of a fit when he was asked to put on a hospital gown for his chest xray. He wanted nothing to do with that.  He did let them take the xray without his shirt.  He was nervous at Dr. Wiggins office at first, but he warmed up before we left. I can't blame him for being nervous after all he has been through lately.  Dr. Wiggins took out the stitch left in where his chest tube was. Joshua was even brave through that. Joshua's SAT's were at about 90 without being on oxygen. We haven't seen him that high since he was about 6 months old. We were so glad to hear everything looks good, but I wasn't surprised because he acts like he is feeling better. 

Sunday, August 4, 2013

Exciting news...We are heading HOME!!!!

Yesterday afternoon Joshua was having trouble keeping anything down, but today he is doing much better. When Dr. Burch and his amazing team rounded this morning they asked us how we would feel about going home today. I was so surprised!! HOME,TODAY!!!!  Joshua has been in great spirits today. We have walked the halls, gone to the Forever Young playroom, and been to Sacrament Meeting.  Yesterday we took Joshua to the playroom in his wheelchair and he really didn't have much interest. Today he asked if he could go there and played with everything. He is having a reaction to the tape so he has a rash, but he is looking good.

We are getting discharge things done, oxygen line up, prescriptions filled and heading home!!  Feeling so blessed right now!!  Thanks for your prayers for Joshua and our family.

Saturday, August 3, 2013

Saturday morning update

Joshua is feeling so much better this morning.  They came by this morning and pulled out all the pacer wires and chest tubes.  Joshua wasn't thrilled by the pulling, but he was brave and only had a few tears. After fighting Joshua every time he had to take medication orally I finally remembered that we used to put his Lasix in root beer. We did that this morning and he took his pain medicine great. It was great to not fight him over it.  Dr. Burch says we are on the launch pad to head home in a few days.  We are still working at getting the fluid out of Joshua's lungs. He is more cooperative today. 

We brought surprises for when he had to do hard things. He is finally showing interest in opening them. Yesterday he got a Go Fish and a War game. He has liked playing them.  It is good to see him show some interest in things besides movies.

Here he is playing cards.  Love this little guy!!!

To all you wonderful Waites still at home...we love you and can't wait to see you again!! Thanks for everything you are doing to let us be here with Joshua. You are each amazing!! WE LOVE YOU!!!!!

Friday, August 2, 2013

Enjoying the 3rd floor

Joshua is being much better behaved this afternoon and evening.  We have played Go Fish and War.  He has eaten shrimp and watermelon for dinner.  We are going to get him up to take a few steps now.  I hope he sleeps well tonight.

Out of CICU

We've moved!!  Hooray!! Joshua was moved out of the CICU about an hour ago. I am always so grateful to be on the 3rd floor in a room with a view.  Joshua hasn't been in the most cooperative of moods today. He needs to cough to clean out his lungs. He absolutely refuses. He won't even blow bubbles. The doctors and nurses understand that he is just a four year old trying to be in charge of something in his life. They are being patient with him.  He also needs to take his pain medication. He is spitting out his medicine if we do get lucky and get it in his mouth.  He doesn't like to take anything other than his normal medicines.  We'll get there.  I did get him to eat and drink by ordering a corn dog for breakfast.  It made him thirsty so we accomplished two things with one order.  He looks really good today. He is down to just two chest tubes, which might come out this afternoon, and 1 IV.  I feel hopeful and optimistic after a good nights sleep.

Thanks for all your prayers.  We feel so blessed!!

Thursday, August 1, 2013

Picture update

Neil is staying at the hospital tonight with Joshua.  I don't know if I dare say sleeping at the hospital because Joshua slept lots today. Neil and Joshua may be up playing tonight.  Joshua had lots of tubes and IV's pulled today. He even got one chest tube pulled. It is definitely a step in the right direction.  Rebecca came by to visit this afternoon. It was good to see her. Joshua had an IV pulled while she was there so he was a little fussy.  She read him the Villian books. Hopefully it was good for both of them. There was talk of moving out of ICU tonight, but Joshua wasn't feeling quite good enough to get the go ahead.  He isn't taking his medicine very well, eating and drinking enough, or sitting up on his own.  I held him on my lap for a little while and he kept crying that it hurt and he wanted back in bed.  His oxygen isn't quite as high as we would like on his own. He won't exercise his lungs and take big breaths. Neil is going to help him get up and walk some tonight.  Hopefully, that will help us move out of ICU tomorrow.  He did eat some chicken noodle soup for dinner tonight. I hope that helps him feel better and want to get moving.  He is doing great for only being one day out of major heart surgery.  He is my heart hero!!!

Here are some pictures from this week. He looks much better today.  Thanks for your prayers for our family and Joshua.
Waiting to go in the Cath Lab

Playing the iPod during recovery from the Cath Lab

After the Fontan

Still asleep right after the Fontan

Resting after surgery

A piece of the tubing Dr. Burch used to connect Joshua's new plumbing. It is 20 mm tubing.

Sleeping the night away after surgery

Looking good

Joshua even has pretty good color for just having surgery

Eating dinner and watching a movie on the first day of recovery

first night in the CICU

Joshua did really well throughout the night.  I stayed with him and I had the best night sleep ever in an ICU room.  He called for me a few times, probably about once an hour, but it was still a good night.  He is doing his best to cooperate with the nurses.  He has already had one IV taken out.  Hopefully today we will be able to take out several more IV's and his catheter.  He should be able to move around  a bit today.  He has been taking water and Sprite. I hope he will be able to eat today.  He has had a few moments when he gets upset and his blood pressure goes up and his oxygen goes down.  He is on a little bit of oxygen and he doesn't really like that.  His oxygen levels are a little lower this morning, that is most likely from fluid in his lungs. He needs to cough or take some deep breaths, but he doesn't really want to.  He has much better color today than he did yesterday. He looks good. There is a chance we will move out of ICU today.  We'll just see what happens.  I have pictures, I'll post them later when I can use the laptop.  Thanks for all your prayers!!  We feel so blessed.