What do ya know, the boy is looking good!

Ashton decided to start running a fever on the way to the hospital, so when they saw this, they decided not to sedate him for an echo. We asked if we could just have them do the echo without sedation and they agreed to give it a go. I don’t know why they always want to sedate him. Don’t they realize that he is way more interested in what is on TV than what they are doing with that slimy thingy on his chest? I wouldn’t be surprised if they could do surgery on Ashton if they had the TV on, especially if Cars was playing. Lol.

His cardiologist says that the blood flow through the pulmonary artery is almost nonexistent, but the flow through the Glenn looks really good. He doesn’t have any leakage in his valves and overall they are really happy with how he is doing. He stressed that they don’t want to do surgery on Ashton at this time because he is way too young. At minimum, they want him to be 2 years old, but it sounds like they would like to wait as long as possible.

We got some clarification on how to adjust the O2 flow and where we need to keep his sats. We have been told that we should use the oxygen continually, for various reasons that would be lengthy to try to explain. But then we were told to keep his sats within certain parameters. Then there are those times when his sats are higher than they tell us they want them to be, but he is on room air so what do we do, put a pillow over his face until he needs oxygen? We were told during this visit that if he is within the parameters they have given him, then he doesn’t have to be on oxygen but that we should put him on at night while he is sleeping. It is so confusing sometimes and it is hard to know what the significance is to some of the direction we receive. So, we do the best we can figure to do and then try to find some time to treat Ashton like a regular little boy who loves to run and play. We do our best to give him the care he needs, but I would hate to have something happen and have him go out of this world without having some fun. Sometimes I think that the food for the soul can heal some of the needs of the body. Hopefully he won’t get sick quite as much as he did last winter season. He is up to date on his shots now and he has received the flu shot this year and his cardiologist told us that if they give us a hard time with the Synagis shot for RSV to let him know and he will help us with encouraging the insurance company to pay. They have paid the last 2 years, but it is not something they really like. The first year the shots were about $1,200 per shot and he had them 1 time a month for 5 months. Last year, they were $3,200 per shot. It is based on his weight, so I can’t imagine what it will be this year. We are lucky that our primary insurance pays for this shot 100%. We just have to impress upon them the importance of him having the shot and that seems to always be a fight.

We are glad to have some positive news! We have our next appointment in March, so hopefully it will be uneventful between now and then.

One thing that is discouraging is that we wanted to go see Shanna’s grandma (who has been in a care center now for several months due to having a stroke) in SLC. Ashton had a fever so we thought we shouldn’t take him in there and take the chance of him getting some of the elderly people sick. That was Friday that we came home. Today (Saturday) we got a call telling us that she passed away today. It sounds like she was struggling and may not have been up to a visit anyway, but it would have been nice to see her. She was in her 80’s and has lived a good long life. She has been on 3 missions; I think it was, but maybe 4, for the LDS church. She has done more genealogy than anyone I know and she has always treated us with love and kindness. We will miss her but are glad that she is able to be with her husband again after being separated for so many years.

For those heart families who check on us, we hope you have a healthy winter and can enjoy the holiday season AT HOME! We check on those of you in Intermountain Healing Hearts, but it is amazing how fast the group has grown, it is hard to find time to keep up with everyone, but we want you to know that we keep you in our thoughts and prayers.

Nathan & Shanna Hardman

Posted on CarePage also: ashtonhardman

Our understanding is that we don't understand?!.

After reading through some of Ashton’s recent medical records yesterday, we are again concerned for him. I think what really happened is that it just reminded us of how serious his condition is. We have had our ups and downs over the past year but over all we have not dealt directly with his heart, rather symptoms (such as getting sick easy because of his condition). If I understand correctly, his body is growing faster than his Glenn. What exactly this means, we don’t understand but he has an appointment scheduled for Nov. 6th with his Cardiologist. He will have an Echo and we will try to understand what is going on and what the future holds.

Nathan

We may not know much but we do know we love him and he is cute!

He's a pack-in

Well Ashton has a few days under his belt with his backpack. His sister took him for a walk around the block tonight and then he played for about another hour around the yard after that, all with his pack on. He is getting the hang of it pretty good! I weighed it yesterday and found that it is just barely over 4 lbs when the tank is full. There is a trade off to some degree I suppose. He has a little harder time getting up and down but he still can do it. The upside is that he can go from the front yard to the back yard. He also is able to move around without having the tubing get caught on things or wrapped around things.

Here is a little clip of him getting around. My camera is a little blurry for some reason, so sorry for that, but you can get the idea of how he can get around with the tank on his back.

Ashton in our backyard jungle

A Sad Day

Today was Ashton's last day with his Occupational Therapist as she is moving out of the state. We will miss you Judy:-( He will have a new therapist and I'm sure we will grow to love her too, but Ashton has been working with Judy since the beginning.

He has had a speech evaluation and qualified for speech therapy. Tomorrow his new speech therapist is coming to put together an addendum to his care plan and then we will start working on getting him caught up on his speech. Everyone is pretty positive that he won’t be long in catching up once he figures out the benefits of being able to communicate what it is that he wants rather than screaming until we figure it out.

He is back on oxygen after about a year of being off most of the time. We started out putting him on oxygen at night but now have moved to keeping him on 24/7. He just seems to feel better. His sats do change a little but his coloring, energy level and mood are so much better when he is on the O2 so we have decided to keep him on. I think part of it has to do with the heat also. He is usually tired in the day but then wants to be up at night after it cools down. We were concerned about him getting tangled up in the tubing at night so we requested more nursing hours. We got it, so we now have a nurse for 40 hours a week during the day and a night nurse for 30 hours a week. This is so nice to have help to allow us to get some other things done. It’s not too bad now that the weather is nice but when those cold winter months return and he needs to stay inside more, it will really be nice to not have to drag him out when running our other kids places or running errands.

This summer is the first time he has really been able to be outside much and he is just soaking it all up. He loves to play in the water and if we turn our backs too long we will quickly find him in the sprinkler. We have a 50 foot tubing on his concentrator so he can go out into the yard, but then when the kids go to the neighbors and he wants to follow, he can't follow them. This is a good thing and a bad thing. We don't want him to get frustrated and feel confined but it is kind of nice that he can’t easily get away from us. He was running out the door the other day and I had to restrain myself from stepping on his tubing to stop him:-) I don't want him to get to where he resents the O2. As I have said, it was so hard to get him to keep the cannula on. He just kept ripping it off of his face. Some of the parents told me that he would get used to it and want to have it on once he understood that it made him feel better. Well, you were right. I now catch him putting the cannula back in his nose if it comes out or he adjusts it if it isn't in quite right. I had little faith that this day would come when we put him back on. I have been trying to find a way that he could have a little more freedom, so I have been talking with Praxair to see if anything is out there that is pediatric approved that we can use for Ashton. The units they have with liquid O2 are not approved for kids as young as him. What I finally came up with today was this. We picked up an M6 tank and they found me a really lightweight regulator to go with it. I ran around to the sporting goods stores and found a hydration pack for $20 at Big5 that fits the tank almost perfectly. All together the tank, regulator and pack weigh about 5 pounds. He is on a 1ltr flow and this should last him 2.8 hours. We have E tanks we can use to take him out other places, but with his pack he can run around on his own. Ashton is weighing in at about 25 pounds so this pack is borderline heavy for him. So, we took it for a test-drive tonight and he did really good with it. I walk down the block with him, holding his hand. He wore the pack for about 20 minutes and then I took it off. He did Ok but he really needs to build a little more muscle in order to use it full time when he is out playing. I bet within 2 weeks he will be able to use it full time. Ashton is pretty solid so he will do Ok with it. His therapist said we should keep the pack no more than 1/3 of his body weight, so we are good there. It is exciting to know that there is a solution that will allow him to participate with the other kids in the neighborhood.

There are sure challenges that continue to come along as he grows and develops. I'm sure it will get more interesting as he gets into school. He has an amazing attitude that I hope he hangs onto as he realizes that some of his activities may be restricted compared to kids without health challenges. He is a good boy and we love him so much.

His newest trick as of the last couple of days is that he can now climb upon the kitchen chairs and then up on to the table. This is scary!

I tried shooting a video of him wearing his pack tonight but something didn't work so I will try again in the next couple of days.

Overall he is doing really good. He is definitely a boy. He loves to wrestle and play cars, trucks, and swords and play catch.

Take Care,
Nathan

Going to PCMC on Thursday

Ashton has an appointment on Thursday of this week. His sats have been fluctuating so we are going to go have an echo to see how the blood flow is. There is a concern that the pulmonary artery may be closing off, so we will see what is happening.

I made a post on carepages a little while back but I will update the blog for those of you who don't check the carepage.

Overall, Ashton is doing really good. His Occupational therapist and his nurse are excited at how good he is doing with his physical development. He is actually ahead of where he should be for his age. He has a nurse who comes 3 days a week for 4 hours each day and then a therapist who comes each week for an hour. Shanna and I work with him and then he has 4 older siblings who play with him, so he gets a lot of individual attention that has probably helped him come along. Oh and then there is always the fact that Ashton is just really smart and cute and funny and fun and spoiled rotten because of it all! He still isn't talking like expected for his age, but he is making more and more sounds and gestures all the time. I don't know if he can't or just isn't interested in talking. It is obvious that he understands what we are saying to him. Especially when he gets into something that he knows he isn't supposed to have and we tell him to put it back or bring it to us. Ya..that's when he turns and high-tails it in the other direction with a big grin. We have been working with him to teach him to sign a little. This has helped the screaming a little. Even though he doesn't always try to talk, he will sign to tell us what he wants instead of just screaming until we figure it out.
Something I wanted to let parents know about is a new nasal cannula that we got. It is from Salter Labs and it is called a comfort care cannula with head band. Here is a link to it if you want to take a look. http://www.salterlabs.com/documents/SLC-06_000.pdf
Anyway, Ashton acts like he doesn't notice it as much as the traditional cannulas. I don't always use the head band that it comes with, rather I use cloth tape over the bridge of his nose to hold it in place.

My last bit of news is that our family went to the temple on May 24th to be sealed. We were able to get permission from Shamra and Dakota's dad's so that I could be sealed to them along with our boys Shanna and I have together. It was so awesome! Then after we got sealed, we had a luncheon and after that, we shipped the kids off to Utah for the last two weeks. I usually enjoy having a break but this time it felt kind of weird to just go through such a special time and then have them gone. Shanna has to work, but I will be leaving at 4:30 a.m. Thursday to head to PCMC and I will meet with the kids after our appointment. We will get a hotel for the night and come home on Friday.

I'll try to post something about the results of Ashton's echo. We are hoping to be able to wait about another year before he has the Fontain surgery. We'll see if that is realistic.

Ashton got better and we made the trip!

I wanted to post this and let everyone know how special Ashton has been to my family.

For those of you who have been checking in on us for a while, you know that I struggled for 19 years to quit smoking. It wasn't until Ashton came along that I felt that I had to quit so that I didn't cause him more problems than he already has with his heart defects. So I quit when he was born. He is now 15 months old and I was finally ordained an Elder. I am going with my wife to interview for a temple recommend tonight and plan to get sealed in the Idaho Falls temple within the next couple of weeks when all of our family will be here. Shanna and I were both married before and she had 2 children before we met. Being able to be sealed to them has been a concern to me for a long time. This weekend, while out in Vernal to be at my nieces baptism, we were able to visit with my daughters biological father and after a total of about 4 1/2 hours and a lot of hesitation, he signed an authorization for us to be sealed to her. I have not been able to adopt her, but what a relief to know that she will be ours forever once we are sealed. We are anxious to meet with our one son's dad and go through the same process, but it is a relief to have one down.

What a blessing this little boy is in our lives!
Nathan

RSV!

Ashton has had a cough and a runny nose for a couple of days and his energy has just been lower. So Shanna and I took him in to the doctors yesterday to have them take a look. He has an ear infection in his right ear. They ran a culture on him for RSV and it came back negative. Then they called me this morning and said that they had let that culture overnight and it was positive this morning. His sats were 70 % at the doctors’ office but his coloring was still good so we planned on watching him and putting him on oxygen if he worsened, but now he is going to have to go on O2.

He has been doing so good too. We are supposed to go out to Utah this weekend for my nieces’ baptism, but I don’t know if we are going to be able to do that now. I guess we’ll have to see how things develop.

Keep him in you prayers if you will.

Nathan

He's Walking!

Ashton is all over the place. He is walking everywhere now and He also loves to play on the computer.

He is so fun!

Trip to Cardiologist

Well this has been an interesting last few days. Ashton’s sats dropped considerably starting last Wednesday; this raised enough concern that he spent Thursday and Friday in the hospital in Idaho Falls. He was on 2 liters of oxygen and his sats were in the low 80’s where he is normally around 90% without oxygen. His nose was stuffy, so we had to keep suctioning him. He has rebounded for the most part. Last night, he ran a high fever and his heart and respiration were really rapid. He took some Tylenol about 3 a.m. and settled down for Shanna and myself to take a catnap before getting the other kids up and ready for school.

Ashton and Dad made the trip this morning to his scheduled appointment with his cardiologist at PCMC. For the most part, Ashton was like a new man this morning. We were told that his lungs look good and have improved since his last appointment a couple of months ago (not so wet). Something that I learned about was white blood cell count. I thought that when he was sick that he should have a high count, but when he was in the hospital last week, his white cell count looked good. The cardiologist told me today that when he has a virus it is somewhat more reassuring when his white blood cell count is not elevated as this reflects that it most likely is a virus; whereas a high count can reflect something bacterial.

I learned a lot today….more than I can take time to post, but for a dad who is always concerned, I continue to better understand the process of Ashton’s condition and what can be expected through illness. I think it goes something like…I panic and the doctor’s reassure me that it is normal and then I panic some more.

After his appointment, we got in touch with Alex’s Dad and then went to the parent resource center, to use the computer, and there was Brynn. She filled me in on the IHH meeting on Saturday and how Alex is doing. It was nice to visit with the Homers. I was hanging out for a few minutes to get a hotel through Priceline after Brynn went to check on Alex and Pat (a social worker) came in and we visited for a while. She filled me in a little about Intermountain Healing Hearts as well. We reflected on how IHH is what Shanna and I were looking for when Ashton was born. There was another organization that we were told about, but we found it wasn’t active any longer. Intermountain Healing Hearts is a good resource and the board members are working hard to structure the organization in a way that it will be around for a long time. We appreciate all of you!

I am so tired from lack of sleep and the horrible driving conditions through the Malad pass this morning. I ended up coming to a dead stop on the freeway and then inching off the shoulder…listening for the sound of the tires going over the rough part that they put on the side of the road to wake people up when they start to go off the road. I was glad to see the car behind me come to a stop also. We took it slow and made it in one piece. Salt Lake City is cold but the sun is shining.

This has been a good day. Ashton has been so cute playing here in the hotel tonight. He was playing by the closet doors that are mirrored and thought he was pretty funny. He was right…he was pretty funny!

I want to thank those of you who donated to Intermount Healing Hearts, per my request. Know that this is helping get things going. The organization has received an official status as an organization who is registered in Utah. They now have an 800 number and P.O. Box and they are currently awaiting approval of a 501 (c)3, non-profit status . The website is being developed and more families are joining daily. This organization is so important for families. I know from those I have talked with, we all appreciate all the support we receive, but it is nice to be able to talk to someone who can relate with our situation 100% and IHH makes this possible. It is important for the parents and the CHD child, but summer camp is also scheduled and will host activities for the other siblings in the family. They also need someone who can relate to them and the difficulty they face by getting placed on the back burner at times.

Nathan