Tuesday, September 16, 2014

Dayson's 3rd Hospital Stay

Dayson on his walk.

Dayson had a clinic visit on Monday August 4th and his lung function was up to 103%, so he didn't have to go to the hospital in August, which we were very happy about. But then about 2 1/2 weeks ago, he came down with a fever and started throwing up and coughing, so after about a week of staying home from school, we decided he needed to go in and see the doctor because his body was not able to fight this sickness off. We packed a bag for him and Chet, pretty much knowing that they would admit him into the hospital. That Friday, September 5th, he was admitted into the hospital and he had already lost about 7 pounds, which is about 10% of his body weight. They did a chest x-ray and they were able to see about 3 different spots on his lungs that was causing an infection in his lungs. Comparable to pneumonia for normal people. So they started him on IV antibiotics, and breathing treatments & chest physiotherapy 4 times a day. It took a few days for the fever to break, but once it did, he finally started feeling better and has been getting better every day. Yesterday they tested his lung function and it was at 78%. So he's dropped quite a bit from the beginning of August, but every day it's getting better. They will retest him on Friday and hopefully let him come home on Friday as well. The first week, they didn't want me at the hospital much with him because I'm nursing Paisley, so after a week I was able to start taking a turn and staying the night with him. Luckily Paisley takes a bottle as well, so I just pump when I'm not with her. Chet, and Chet's mom and I rotate staying the night with him and trying to be home with the girls and trying to get work done. It's very tricky! So when Dayson is in the hospital, Chet and I feel like we are constantly on the go and trying to stay afloat. It's rough. But hopefully we only have 3 more days! I'm trying not to stress out or worry, but I think it's just a natural thing we do when our child is sick and we are pretty much helpless. I try not to think about all the negative things about this disease, but when he's in the hospital you kind of have to face them. The doctors are so nice and try to give it to me straight, but also probably sugar coat some things. I'm just hoping and praying for a drug that will help him stay out of the hospital. He's such a sweet kid, and has had to go through some tough stuff that no one should have to go through. Thank you all for your love, prayers and support!

Dayson and Chet

Friday, August 1, 2014

Dayson & Hospital Stays

Well, I've learned that I need to not make a big deal out of hospital stays, because it looks like they are probably going to happen about twice a year for the rest of his life. They aren't scary, they are to make him healthy. Chet took Dayson to his CF clinic visit on Monday, July 21st. They wanted to admit him that day. Chet bought us 2 weeks, so he's been on an antibiotic and we've been having him exercise more than usual and trying our hardest to get him healthy so that when he goes back on Monday, he'll be where the Doctor wants him to be, otherwise, he'll be admitted Monday. But, with all of that said, hospital stays are really hard on our little family. Financially, emotionally, and physically draining. I'm so grateful for his doctors and his medications and all of the hospital staff that work so hard on getting him healthy when he's there, but ideally he would only have to go once every few years. We definitely got spoiled for the first seven years of no hospital stays. This Sunday is Fast Sunday and we are going to have a special fast for Dayson. I feel so bad because I feel like I'm always asking for prayers for him, but I don't know what else to do, it's how I get through these things. My heart breaks for him. I wish I could trade places with him. I wish I could take it from him. But I can't. So I pray and pray and ask my family and friends for prayers. He really is the sweetest boy in the world. 

Sunday, July 27, 2014

Paisley Jane

This beautiful miracle was born on June 11, 2014 at 9:09 pm and weighed 7 lbs 6 oz and was 19 1/2 inches long. She is the sweetest baby and we are all so in love with her. When I was only 6 weeks pregnant with her I started bleeding and I thought I was miscarrying. I cried and couldn't stop crying for about 3 hours. I called my IVF doctor and the nurse said not to worry and that I could go in for an ultrasound the next day. I of course went to Google that night to see if there was another reason I was bleeding and I found some people that had done IVF had bled because of a blood clot and their baby was fine. That gave me hope, so I was able to get some sleep that night. The next day at the ultrasound I was able to see her heartbeat, and I couldn't stop crying tears of joy. The information I had found on blood clots was exactly what I had. I just wish the doctor would have warned me that that happened sometimes. He said to take it easy for the next few days, and that everything would be fine. Everything obviously was fine, but I was so worried the next few weeks, but my regular OB was so sweet and would do an ultrasound at almost every visit to ease my mind. And then at about 18 weeks I was able to feel her move, and from that point on I was fine. Emotionally fine that is. Physically this was the hardest pregnancy I've had. At 36 weeks I found out she was breech, and I honestly think that's why I was so uncomfortable. But at 37 weeks they were able to turn her via an external version and after that it was a hundred times more comfortable and I felt like I could breathe again. Then the last week and a half it got really hot and I was constantly sweaty and cranky, my poor family. But we finally made it to June 11th and after a very long day she came out with a full head of dark hair and I was questioning if they had put the right embryo in (haha!). She was so alert and beautiful, we instantly fell in love with her. For the next couple of weeks, I would cry every day because I was so grateful that she was in our family and healthy. Prayers of gratitude were sent up every hour almost. I couldn't believe after the long road of IVF that she was finally here and so sweet and beautiful. I love the peace and love that a newborn brings to the home. I was really worried about how Layla would do with the new baby in the house but she has done amazingly well. Everyone has adjusted to her being here and I feel so grateful for that. Our little family is complete now and I couldn't be happier. 

Tuesday, January 28, 2014

Dayson's 2nd hospital stay

Dayson had just turned 7 when he went to the hospital the first time. All the nurses were amazed that he had never been to the hospital. Now 9 months later when he is almost 8 he is there again. This time though, he's not nearly as sick. They were scared of how quickly things went downhill for him last time, they didn't want that to happen again, so this visit was to get rid of the infection his body was fighting and prevent him from getting super sick. When the doctor told us on Thursday to go straight to the hospital, Dayson cried. I cried. I wasn't expecting to be back in the hospital so soon. Dayson cried the entire 15 minute drive to the hospital. Chet was home with Bree and Layla and when Chet told Bree, she ran to Dayson's room and cried. The hospital visits are hard on our little family. For various reasons, but mainly our worry for Dayson and all that he'll have to endure while there and in the future. We don't think about his disease on normal days. This makes us think about it, and we all hate it. The first night there he had to get an IV. Not a huge deal, but it makes my Dayson hurt and cry, which in turn breaks my heart. The next day he was going to get the PICC line put in, but nobody knew when it would happen so he wasn't able to eat all day because of the sedation he was going to get while doing the procedure. Finally just before 4 they took him to get his PICC line. They wouldn't let Chet go back with him, but he came back happy because he said he didn't feel it. Hallelujah!! He was finally able to eat something at about 5:30 after not eating all day. The third day while there, he had to get the dressing changed on the PICC line and they had to clean the dried blood off, and that was worse than the IV. Again the poor kid was in so much pain and there is absolutely nothing I can to make it better. The nurses and hospital staff are so amazing though, and give him lots of cool prizes and things for all the hard things he has to endure. He has a pretty busy schedule while in the hospital. He does 4 treatments a day, 8 am, noon, 4 pm and 8 pm. He doesn't like eating so breakfast, lunch and dinner take about an hour each, which is super fun for whoever is making him eat (sarcasm). He has a shower somewhere in the day and he goes on at least one walk a day as well. He gets to play Wii during his vest treatments and he usually watches tv for his pounding treatments. I read him books, Chet plays games with him. His sisters miss him and he misses being home. I miss us all sleeping under the same roof at night. Chet and I take turns sleeping at the hospital and it's not a good night sleep while there. Tonight, though, Chet's amazing mother, Judy is taking a turn and sleeping there, so Chet and I can have a night together. I hate sleeping without Chet, so tonight I'll have a great night sleep, thanks to Judy. His lung function in October was at 101% and on Friday it was down to 81%. So not too bad of a drop, and again they wanted to prevent a bigger drop than that. He gets tested again on Friday and we'll know Friday if we come home after 10 days or if we have to stay the whole 14 days. On the home front, I had started potty training miss Layla on Wednesday, so whoever is here gets to deal with that fun stuff. Chet and I are trying to squeeze work in wherever we can and deal with things that we absolutely have to do. Bree is such a great help and example. The other night she was having a hard time and crying and so she decided to pray and instantly her prayer was answered and she was filled with peace. I'm so grateful that she turns to our Heavenly Father. I could not go through things like this without Him as well, and I'm grateful for the power of prayer. I'm so grateful for Chet as well. He is my rock, and my everything. One of the hardest part of the hospital stays is not being with him as much as I would like. I'm grateful for Dayson and the trooper that he is. I'm grateful for Layla because if I'm on the brink of tears or feeling really sad, all I have to do is think about her and it makes me smile and laugh. I'm also so grateful for this healthy baby girl that I'm carrying. I'm 20 weeks today and so happy that I'm half way there! I truly am so grateful to be the mother of my amazing kids, and as a mother all we want is for our kids to have a normal, happy life, so it's hard when things don't turn out that way. But we have so many things to be grateful for and we get to witness a lot of tender mercies and little miracles that we may not have witnessed without the hard times. Life can be hard sometimes, but I'm so grateful to have the family and friends that we have to help us through the hard times. So, THANK YOU for all your thoughts and prayers, we appreciate them and love you all!