Life

So the last few months have been really good. Kenzen has been home and growing really fast. He can now pull him self up to things and stand. He hasn't figured put how to walk along furniture yet but I'm sure that will come in the next few weeks. He still army crawls everywhere but I do see him on his hands and knees to get closer to furniture and he also pushes trucks along the floor on his knees. Maybe in a few weeks he will decide to crawl on his hands and knees.  We went to his cardiologist last week and the appointment went pretty well. They wanted to do an echo on him but we don't want to sedate him so we had to try and get a 19 month old to sit still for 30-45 minutes. It ended up taking the doctor doing the echo and the tech and a nurse holding Kenzen and giving him things like toys and crackers to distract him. His heart function is really good right now. There aren't any concerns about his heart at this time. What he really wanted to see was if his blood flow is still going the wrong way in his left pulmonary artery and that we couldn't see clearly kenzen would need to arch his back and sit really still to see that. I was pretty bummed we couldn't see that. Now we just need to decide what to do with him in the near future. It is possible for his lung pressure to be getting higher and if we don't do anything about it they will get to a point that there isn't anything we can do. We are hoping that they are getting better but the only way of knowing for sure is to do another Cath. Well those don't go very well with him. The last two he has had have put him in the icu for a month and on a ventilator for most of that month. It is really scary to see him that way so I really don't want to do that. I think for now we might just watch him but that is scary to because if his pressure are still high and we can't get then down he cant have the third surgery he needs or a transplant. So when his heart does go into failure there wouldn't be anything we could do. We are trying not to focus on it to much yet because this is kenzens first christmas really last year he was in the hospital and on a vent over christmas so we are really excited about having him home this year. Also with are new house in saratoga springs they should be starting to dig in about 2-3 weeks and we should moved in around the beginning of april. It would be nice to be moved in before kenzens 2nd birthday which is april 5.

Kenzens new walker.

Life never goes as planned

So in my last post I had mentioned that we were going to move down to Arizona for Kenzen's health. We went down there at the end of august and signed on a house that is supposed to be done late January or early Febuary. Since that time Kenzen has actually seemed to make some improvements. He is able to be off oxygen sometimes and not desat into the 60s like he did before. He can stay in a good range. We are hoping that means that he is starting to get better and his pressures are starting to get lower. Dave has been trying really hard to get a job down there but he hasn't even gotten one phone call. The company he thought he would have the best chance with has really taken a turn for the worst right now and aren't hiring anyone. Because of all those things we have decided for the time being that we are going to stay in Utah. We are in the process of building another home in Saratoga Springs about a mile away from our other one. It will be done around march of next year. We still have renters in our home we already have so we will still be living with my grandma until the house in finished. Kenzen has also been making a lot of progress is his develpement. He now army crawls everywhere and I mean everywhere. He is learning how to do stairs. He still doesn't like to put a lot of weight in his legs so he wont stand yet but that will come soon I'm sure. He is also off of formula and does whole milk now in a sippy cup. Im the last week or so he has really showed and interest in eating what we eat. He is doing really well with that. Before this past week if he had anything that wasn't pureed he would just gag and throw up. He has now had bread, corn, pancakes, and puffs without gaging. That is a huge step for him. For now he still needs to be on oxygen full time but when he pulls it off, which he does pretty often now, the doctor said we can leave it off for a few hours. Another big step he has taken is he is off all his diuritics. That is huge most kids have to be on them for their whole lifes. That shows us that his heart is doing pretty well right now. We still don't know what the future holds with him needing the third surgery. As of now he still isn't a candidate for that. I have heard of some kids that have had it with only one good lung and if it comes to that point we will have to move to sea level or it wont work. We are really enjoying life outside of hospitals and doctor visits for the time being and are grateful for everyday we get to be together as a family.

Big decisions and big changes

As most of you know Kenzens last cath didn't go well. We were told that his pressures in his lungs are really high and the blood flow to his left lung is going the wrong way which is putting a lot of pressure on his heart and it makes it so he can no longer have the third surgery for his heart and if his heart fails he will need both a heart and lung transplant. They also told us that he could come home and just start getting really sick and we might have to do something drastic like cut out his left lung. The reason why is because his heart only pumps blood to his body and the blood flow does a circle and goes to his head and then it drains into his lungs through his left and right pulminary arteries to get the oxygen that it needs. The blood flow is going the wrong way in his left artery so it means he isn't getting the oxygen his body needs from that side. Also the pressures in his lungs were really high. It's like having a bottle of pop if you shake it it builds up pressure and will squirt out. That is what is happening with him if his pressures are to high the blood can't drain into his lungs like it needs to. The doctors are worried that it will eventually lead to him not getting enough o2 and dying. They don't have very good options we can try to correct it. The things we are trying here are he is on o2 all the time and a medicine called sidenafil. We has a family have decided that to give him the best chance at living a long and healthy life he needs to live somewhere closer to sea level in elevation. When you get to sea level it is like being on o2 just by being there. These kids with heart conditions do a lot better at lower elevation. We ended up renting out our home in Saratoga Springs and we are now living with my grandma in Orem. Dave is looking for work in both California and Arizona. Most likely he will get a job in AZ. We were there last week for vacation and Kenzen was able to be of his oxygen the whole time we were there. It was just confirmation that that is where we need to be. Since his cath the doctors have told us that there have been a few children that have had the third surgery with only one good lung and they have done pretty well but only at sea level. It has been hard on our other kids to leave there friends and everything familiar to them. The good thing about Arizona is we have a lot of family down there that are really supportive of us being there and it will help a lot to still have family. Also my kids will have a lot of cousins there own age down there. I'm excited about going it is a big change but I fill it will be worth it. We are hoping Dave has a job and we are down there by the end of August so our kids can start school down there.

Home Sweet Home

Kenzen got to come home today. We were able to leave the hospital around 10 we got to leave so early because I really wanted to take him home yesterday but they wouldn't let me. We compromised and we did all the meds and everything else that needed to be done yesterday so we could leave really early today. He is doing really well we already went to his pediatrician for a follow up and she was so happy with him she was even comfortable with giving him the rest of his immunizations. He has been very happy and sleepy since we got home. It is so hard for him to get good sleep in the hospital so whenever he comes home he sleeps a lot for the first few days. The other kids are very happy that he is home they really did miss him this time.

Getting close

Kenzen has seemed to turn the corner. He was on cpap for a few days and that was able to open back up his lung. He has been able to get off cpap and back on to just a nasal canula today that he will be on for when he comes home. I wanted to take him home today but they wanted to watch him for another 24 hours. We are really hoping he will be able to come home tomorrow. He was also able to have a bottle today for the first time in almost 3 weeks. He did really well and ate just like he does at home. It should be just a matter of days before we can pull out his feeding tube and be back on just bottles. He was so happy being able to get a bottle and be full. I'm sure he is the happiest baby tonight.

1st failed attempt

So Kenzen was able to get extubated yesterday morning. He did really well and was so happy to have that tube out. We were able to hold him again which he loved but he is definitely harder to handle this time. Last time he would just be happy sitting on our laps this time he wants to grab everything and I mean everything. He did great until around 4 am in the morning his lung collapsed again. He looked fine like his sats stayed the same and he didn't work any harder to breath. They are just going to try cpap to see if they can get it open again. Last time though they had to reintubate to get it to open up again. I guess it's a good thing that he didn't change clinically because he might have to get that lung cut out one day with how high his pressure were and with how the blood flows through that lung.

Still just slow progress

Nothing much has changed for Kenzen in the last few days. His lung is still open and his xrays continue to look better each morning. They are starting to wein him down on the vent so we can try to get him off. They are going very slow like maybe making a small change once a day. At the rate he is going he might be ready to take out the tube in one week. The biggest thing he needs to get over now is just being able to keep his lung open on his own once he's off the breathing machine. They have changed all of his meds back to oral and he is now just on methadone and adavan to help keep him calm. He will wake up and play with toys but you can tell he is just really relaxed. I'm glad that he is able to be that way because he doesn't really get upset and he even leaves all the tubes alone. He has the breathing tube in his mouth and a tube through each nostril that I thought for sure he would try and pull out once he was awake. I think the medicine is doing its job in keeping him very calm and content.

Makeing some progress

Kenzen had a pretty good few days. Today they changed the settings on his vent and when they did an xray his left lung was finally open. He has also been able to pee better so he isn't as swollen. His head and arms are pretty swollen but they think some of it has to do with pressures from him being on the vent and having that left lung collapsed. They took him off of the paralyzing drug yesterday so he could cough more and try to help get that lung open. He was still pretty out of it today though so they are going to wein down his sedation drugs a little bit more. He still has a long road ahead of him. Last time it took three different tries to get him off the breathing machine before he could keep that lung open on his own. I'm hoping that because the doctors know this they can better prepare him this time by not trying to soon.

Just another day

Kenzen had a bronch today to get a better look at his lungs. They take a small tube and put it down his breathing tube. They can see how they look and also help clean them out. They were able to clean them out a lot but his lung is still collapsed. I think that he just needs time and maybe stronger settings on the ventilator to pop that lung back open. He is also very swollen today they had to up his diuretics and they think some of the swelling in his head and arms is caused from his lung collapse and being on the vent. With the way that his body works from his repairs is different then what the vent can do so it can cause issues. They usually don't do very well on vents so they want to get him off as soon as possible. I don't think he will be ready for at least a week after they get his lung open to even try taking him off the vent. It sucks having him back up there but tonight Dave and some other elders gave him a blessing. The blessing said that his lung would heal and he would get back to his normal. I know he will get better and be able to come back home I just don't know how long that will take. I'm just hoping that it's not longer then 30 days like it was last time.

Not a good day

Yesterday Kenzen went in for his cath. We had to be at the hospital at 10:15. He was such a good boy he didn't even cry out of hunger he just played and then took a nap while we waited for them to come get him. His cath time was much shorter this time maybe 2 hours instead of 4. Because of that I thought things had gone good. When we got in the room to talk to the doctor he said he had nothing but bad news to tell us. He let us know that his stent was still good and it looked the same. His problem is that his body has been making a lot of extra veins which for him is a very bad thing. It has made his left lung pretty much worthless. Also because of the way it has made his blood flow his pressures in his lungs are pretty high. That makes him not be able to get the oxygen that he needs and that's why he has been desating lately. They also told us that because of that he is now not a candidate for the third heart surgery. He also let us know that when they were taking him off the breathing machine he started to bleed from his lungs so they had to keep him on the breathing machine. Now we are in the icu again. The bleed has gotten better but now his left lung is collapsed again. Tomorrow they are going to take him to the OR and do a bronc and try and clean out his lung and get it open again. I was very upset yesterday and angry with the situation. I took yesterday to mean that he was going to go home and die soon. I was able to talk to his cardiologist today and he let me know that there are some kids that don't have the third surgery and they are teenagers. They do usually have lower sats and not as much energy. But that made me feel a lot better. We still aren't sure what the plan is going to be for him they are going to meet with the team of doctors over the next few weeks to see what there recommendations would be. The doctor said that he is the worst case for having so many extra veins that he has ever seen. He also said that there isn't a good answer of things to do it's kind of like cancer it just grows and grows and they don't really know what to do to help him. I will continue to update when things change.

Another Heart Cath

Things have been going pretty good since Kenzen came home in January. He has really increased his appitite and has started to eat solid foods. He now weighs 15 pounds. Around mid April I noticed that his saturations were starting to drop at night and there were a few nights I put him on oxygen. Then at the end of April we went on our first family vacation. We took the kids to california and went to Disneyland and hung out with family. It was so much fun. Kenzen did great he had more energy there and his saturations came back up to the high end. The lower elevation is a lot easier on his body. Since we came home he needed some oxygen to help him readjust. We went into his pediatrition for some immunizations and she didn't like the color of his face it was kind of purple that day. She called his cardiologist and he wanted to see us that day. So we went to him and they did an xray and an echo just to see how he was doing. His heart looks great his doctor said it is very strong. But they did find that his left pulminary artery that they stented back in December is really small again and the blood flow is going the wrong way again which is why his saturations are lower and why now he is back on oxygen all day and all night. His doctor wanted him to have another heart cath asap to hopefully be able to make the stent bigger. He is also thinking that his body is continueing to make new collaterals that are makeing the blood flow go the wrong way and that is a bad thing for him. If his blood is going the wrong way it doesn't get oxygen so we need to get that fixed. They have scheduled his heart cath for this coming tuesday May 29. We are just hoping and praying that everything goes as planned this time and its only a one night stay not a 30 day stay. I'm also really hoping that he has just outgrown his stent and not that he has more collaterals cause there is only so much they can do about those. I will update again on tuesday after his cath with the results and hopefully good news.

What a year!!!!!

Today is a very big day for us as a family. It was a year ago today that Kenzen had his first open heart surgery. The doctors didn't think he was going to make it and for a while there it didn't look good. But now a year later he is still here with us. It has been a very long and rough year full of a lot of unknowns, fear, joy, tears, and gratitude. I will never be able to repay the amazing team of doctors and nurses, along with the lords help, who made it possible for him to be with us today. He is doing amazing now and doing things that some doctors thought he wouldn't be able to do. Some people thought he needed a feeding tube but here he is today eating like a normal baby all on his own and growing really well. He is behind on his physical development but that's because he has only been home for 6 months out of his first year of life. He will get caught up eventually and I don't really care how long it takes him I'm just grateful that he is here with us. After his surgeries he becomes very dependent on medication like diuretics he is always needing a lot more then the doctors are really comfortable with him being on. It always amazes me and his doctors when one day his body just decides to do the work and now he is almost off of all his diuretics. I think that he wont need anymore within the next few weeks. That is a big accomplishment for kids like him most of them have to be on some sort of diuretic their whole life. Words can not express how I feel today being able to hold him in my arms and hear him laugh and just watch the joy that he finds in life. He is the happiest child you will ever find. Our journey isn't over and anything can still happen with him but I know that the lord is in charge and for now he is allowing us to raise him with us here on this earth and I'm just grateful for every moment I get with him.

Fundraiser for medical bills

So my sister in law has been amazing helping us get some extra cash to pay for Kenzen's medical bills. She ordered some bracelets that are red and they say Kenzen's Got-Heart! They are being sold for $5.00 a piece. If you would like to order some you can call or text me at 385-204-1859 or email me at shill2003@hotmail.com We have a pay pal account that can be used for payment. We will also except checks or cash. I can deliver them to you or send them in the mail at no extra cost. Thank you for all you help and support. We have really appreciated all the help we have received so far. This year has been tough on our family but Kenzen is worth it. I know that the lord has also blessed us with this special spirit to come join our family.

Kenzen's First Birthday Party

Tonight we celebrated Kenzen's first birthday. We went to my in laws house and had family come over. We did presents and cake and played games. He loved opening his presents but didn't like doing the cake. He was very overwhelmed with everyone standing around taking pictures that it made him cry. It was a fun night and it felt great to celebrate that we have made it almost a year his birthday isn't until Thursday. Thank you everyone for coming and supporting us it was a lot of fun.

Dr appointments

So Kenzens doctors have been following him really close. He wasn't growing the way they were wanting him to grow his pediatrician wanted to put the feeding tube back in but I said no. Every time he comes home it takes him a few weeks to adjust and then he just takes off and does great. I knew he would do that again but the doctors weren't so sure. Because I said no they wanted him to see either his ped or his card at least once a week. It was such a pain to have to take him in all the time and expose him to all the sick kids in the office that often. Well he started to grow really well and eating really well about 2 1/2 weeks ago and today we saw both doctors since I got sick and we didn't see anyone for about 2 weeks. They were both very pleased with his growth he has put on almost a pound in 3 weeks which is really good for him. His ped said as long as I keep tracking his weight at home she doesn't need to see him until he is one for his well check. His card is also backing off I think our appointment's will go to once a month or once every few months. It is so nice to be free from doctors for a while. Kenzen is such a happy boy he now weighs 11 pounds 10 ounces. He also knows how to eat from a spoon which he really enjoys. He is almost rolling over. The way I look at his development is I go off how long he has been home and able to develop which is only a little more then 4 months so he is right were he should be. I think once he figures out how to get around he will take off really fast because mentally he is almost 11 months and he really wants to figure out how to get to things and how to play with his brother and sisters. We don't get out much because we are trying to not get him sick so we just hang out at home but I think he likes that. He is also starting to wein off some of his meds I now only give him some 3 times a day when it used to be 6. Our lives are starting to feel normal again. We have waited a long time to feel some what normal. I wont be updating as often anymore when he is doing well. If things change or as he hits milestones like turning one which is coming up in April I probably wont do any updates. Thank you for all the prayers and support it has been a very long hard year but it has all been worth it.

Doing great

The last few days have gone very well. We were able to get him off oxygen. Before his cath he would drop really fast without it but now he is staying were he needs to be without it. For the first few days he would still drop when he sleeps but not anymore. The only time he drops is around 1-2am he drops a little bit but he has always done that. I think its because he falls into a really deep sleep about that time but who knows. I also pulled out his feeding tube yesterday because I hadn't used it for a few days. So now he is tube free.

Home

After much convincing the doctors let Kenzen come home yesterday. We got home around 7:30. He came home on oxygen, feeding tube, and a lot of diuretics. The feeding tube should be gone in a few weeks his stomach is really small from not being able to eat for a month so he doesn't take very much by bottle so we have to put what he doesn't eat through his tube over like an hour to help stretch his stomach back out. His sats actually stay were they are supposed to without oxygen but the doctors want him on it for a little while to help his breathing. He is so much happier now that he is home. The plan from here is to hopefully avoid having to do another cath for about a year then he will have to have another to expand the stent they put in. We all hope that in the meantime he will stay out of the hospital.

On the floor

Today they moved Kenzen out of the icu and on to the floor which is where they go when they are getting close to going home. I wanted to take him home today because he is just on a nasal canula with just a little bit of oxygen to keep his sats where they need to be. He was already on that before we had to stay but the doctors weren't comfortable letting him come home yet they are wanting to see how he handles his bottle. So if he does fine through the night I'm supposed to be able to bring him home tomorrow.

High flow

The past few days Kenzen has seemed to turn a corner. The doctors had been slowly weening his cpap to the point that it would take until next week to have him off and on to high flow. I was pleasantly surprised that the doctors were very impressed with him that they switched him to high flow around 2 am. Since then he is still doing well. The plan is to ween that everyday a little bit if he continues to do well. He needs to go from flow of 6 to about 2 then he should be able to come home.

Getting better

Kenzen has been doing much better the last few days. On Thursday afternoon they extubated him and so far his lung is still open. He hasn't gone this long without it recalapsing so that's a good thing. They put him on a cpap machine to help but they started weining the support of that today and he did well with that. They plan on taking things slow with him but for now he is doing much better.

Yep still here

We are still in the hospital. Kenzens fever wasn't going away so after three days on antibiotics and them sending new blood cultures everyday with nothing growing they switched his antibiotics and that seemed to do the trick. After two days on the new one he doesn't have a fever anymore. So the plan was to extubate him today and put him on cpap and hope he keeps his lung open but this morning xray didn't look very good. He had fluid in his lungs and what looks like a plural effusion on his left side so they decided to not pull the tube. They gave him extra diuretics to try and get the fluid off and we will see how his xray looks tomorrow. They aren't going to pull the tube until his xray looks good to give him the best chance possible it could be tomorrow or not for another week we just don't know.