It's been awhile

It has been 6 months since my last update. Kenzen has been doing really well he learned to walk a few weeks ago and is now working on running. He is also climbing on to everything. He has been having issues since last September with ear infections. He had done atleast 4 rounds of antibiotics between October to February and it just wouldn't clear his ears up all the way. Because of that we made the dicision to have tubes put in his ears and because he hasn't had a good experience with surgery for a long time we also decided to do a sedated echo at the same time. We were really nervous for it because when we got to the hospital we found out they would be intubating him and every time they do that it ends up with a long stay in the ICU. I am pleased to report that he did amazing this time. He had no issues and was so awake that he was carried out of the or by one of the nurses when I saw him he was talking away and drinking a sippy cup. We were able to take him home two hours later. He is going to have a hearing test in a few weeks to see if the tubes have helped. As far as the echo goes his heart function was really good but the flow that was going to wrong way in his LPA is now not  flowing at all. So he is only functioning on one lung. If you saw him you would have no idea he looks so good and is off of oxygen. None of the doctors really know what to do now we don't know if trying to open it back up will make him worse or help we don't know what the pressures are like in his good lung and we hope this doesn't make them worse. For now we are just going to let him be a toddler and do nothing until he starts getting sick or showing signs that he needs something done to help him. As far as our house goes they were delayed by a month in the dig process. It is complete now but we are waiting on our financing to come through and it should be any day now. We are really excited to get our family back into a home again.

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.