Yesterday afternoon we got a call from PCMC letting us know that Ashton needed a “holster” and asked where we would like them to send the order. So I checked with Shanna to see where I should have them send the order. We had a choice of somewhere in Idaho Falls or going to Pocatello. Since Shanna works at EIRMC (the hospital here in Idaho Falls) she told me that they like to do as much there as possible. So I had the order sent there…oh… and what is a holster? It’s a heart monitor that we need to leave on Ashton for 24 hours. Oh…OK. Well we had to wait until tonight for them to get one back that they could check out to us for Ashton. So the nurse gets him wired up with 7 leads on this monitor. This part he has done several times with an EKG, however when the nurse left and didn’t take the stickers off of him he was wondering where she was going. He’s used to getting the stickers off right after getting them put on. Then we told him that he had to wear it home and that we would bring in back tomorrow. He really has been pretty good about it. The only problem we’ve had is that he was snapping the leads off and on just playing with them. So I called Primary’s and told them what was happening and the cardiologist on call asked how old Ashton is and when I told him 4 yrs he just said “oh”. Then he suggested using a rewards system to encourage him to keep it on. So we have bribed him a little and it is working. I have the wires strapped down with an ace bandage and a couple of shirts to help keep him from playing with them but there is the actual monitor that is huge on a 4 year old. I asked him to carry it so that it didn’t fall on the floor. He came to me and told me the he beat the boss and was on the next level. He was pretending it was a game boy. I hope he beats the game as long as he doesn’t really push any buttons. I think they are locked anyway but just in case.
That’s our excitement for the day. It makes us a little nervous with this being a last minute unexpected test. Then when I talked to the on call cardiologist this evening he asked if anyone had mentioned a pacemaker and I said no. His response was oh…Ok. So hopefully things don’t get crazy before we even get started. Any parent with a heart child knows what it’s like.
Ashton was granted a wish from Make-A-Wish Foundation in February of this year. Our whole family went to Florida to Disney World. We went to all 4 parks there plus Universal Studios and Sea World. On our last day we went to Clear Water Beach on the gulf coast and had a great time. We stayed at a place called Give Kids The World that is just for Make-A-Wish kids. It is very cool! If you would like to check out their website go to www.gktw.com to see what an amazing place this is for the kids. Ashton can go back to Give Kids The World any time he wants for free for the rest of his life. There is a star with his name on it in their castle along with 100 thousand other stars from other wish kids.
Several characters came to GKTW to have their pictures taken with the kids. Mickey & Minnie was a highlight. Even when we were in the parks we didn't have to wait in line, they would let Ashton go to the front of the line for pictures.
We had a special pass that got us to the front of all of the lines. I think the longest we waited for a ride was 15 minutes. Some of the rides they took us through the back stage door and put us right on the ride without even seeing a line. It was pretty cool!
We have a bunch more pictures so I will take some time again and post more later.
I made a post on CarePages but I hear rumor that it has been too long and not everyone remembers how to log into that. To tell you the truth I couldn't either. I had to try several username and password combinations.
Ashton is doing really good. We last met with his cardiologist a couple of months ago and he felt confident that we could go another year and maybe a little longer before his next surgery. He has had good health, only getting real sick twice over the last year and we didn't have a hospital stay with either of those that I recall. He is off oxygen most of the time and his sats are staying in the low 80's on room air and that is really good for him. We will go to surgery when we can't keep him in the 70's even on oxygen, so we are happy that he has been feeling so good. Sometimes it is hard to remember that he has anything wrong with him.
We got some exciting news! Make A Wish is sending our family to Disney World in February. We have heard stories about other families who have gone and can't wait to take a break and have some fun as a family.
This picture was taken about a week ago and yes he really is that cute in person:-)
I hope everyone has a great holiday season. Take Care, Nathan
Ashton has been doing so good. Our last cardiology appointment was a couple of months ago and his doc. said he looked good. We are hoping we can go a year or two before having the Fontain surgery. As many of you may already know, there are those who's chest fills with fluid with these surgery's and those who don't and Ashton is one who does, so we will put it off as long as we can. For now he is growing and keeping up with his brothers.
I guess one thing we are working on is speech. He has a therapist who comes once a week and he has recently started going to school once a week to a speech class also where he gets to play with other kids and he loves it.
His big sister has so many pictures of Ashton but she has a car now so I've got to catch her and keep her home long enough to get some pictures transferred to the computer.
Something exciting happened yesterday. We got a call from Make A Wish Foundation and they are processing the paperwork for Ashton to get a wish. She told me it takes about 6 months to get through the process; so we are excited for that.
I'm sorry I haven't kept up with everyone much. I once heard someone say that no news is good news. Ashton is doing so good! With him being so healthy, we are getting back involved with NAMI (National Alliance on Mental Illness). I received a diagnosis of Bipolar before Ashton was born but I have been stable for a few years, but our oldest son was diagnosed Bipolar also so we are learning about resources to help him for now.
Shanna and I appreciate all of you. Although we haven't made any posts, there are many of you we have talked to face to face over the past year. Your love and support has given us strength and we are grateful for your thoughts and prayers; they seem to be working so far.
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.
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!
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.
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.
