So, I have decided on this blog I will also write about my other kids and everything going on in our life. I was planning on doing another blog for that but.....let's face it, I have a hard enough time finding time to write on this one that having two to write on will kill me! I cannot believe the craziness of having 4 kids and two being under two. I only have two more weeks of saying that since Xavian will be two by then.
Other than some craziness life has been good post surgery for Xyler. It has been so nice being able to take him places and to go places as a family. On July first we were able to all go to church as a family since having Xyler. What a wonderful feeling it was to have Xyler there! For many people it was their first time seeing him and he was a hit! Everyone just adored him and thought that he was a little cutie and such a happy baby. He really is a very happy baby and I think he is adorable too, but I'm a little biased. :)
Xyler wasn't drinking much for a few days around the beginning of July. I figured it was because he was teething. He acted like it hurt when he would be drinking. The morning of July 2nd he started throwing up everything! I knew he was becoming severely dehydrated so I took him in to see his ped. He could tell that he was very dehydrated and figured he had some sort of stomach virus that has been going around, so he sent us over to Logan Regional Hospital so that Xyler could get an iv and get some fluid in him. The only hard time of him being there was when they put his IV in. It took them a long time and the poor kid was screaming throughout all of it. I was not very impressed but I do realize they are not used to putting IV's in a baby. Plus, he still had bruises from all of his IV's from his surgery so they didn't want to put one in on those areas.
After spending a day and a half, and getting pumped full of fluid Xyler was looking and doing a lot better and was able to go home. Since then he has done great! He is eating and drinking like he should. I am so amazed by the difference his surgery has made for him. He always wanted to sit up on his own before but didn't have enough strength to do it. He also couldn't stand on his legs for more than a few seconds. He now can sit on his own on the floor and can stand longer than he could. It is so wonderful to watch him start to do all these things that he didn't have the strength to do before.
Now for the bad news of when he came home from the hospital. My other kids caught what he had...ugh. Xander and Nika were only sick for a few days but poor Xavian had it longer. He fevered up to 104 and then broke out with red spots. When most of the spots had disappeared we took Xavian outside to play for a bit. After a while I suddenly noticed that he was covered in spots worse than before! The heat from the sun made more of them appear. He the got diarrhea and wasn't eating or drinking much. I took him to the dr because I was afraid he was becoming dehydrated too. His weight looked good so his ped just told me to bring him in in a few days for a weight check if he wasn't improving. He finally started to drink more and then eat more a couple of days later so I never took him in. Now his feet and hands are starting to peel like crazy and I have no idea why. He is really fair skinned and seems to have sensitive skin. I just don't know what to do with him! It seems like he is always fevering up from something and then normally breaks out in hives from the fever. I just hope he starts doing better and won't get sick as much.
I love my kids so much, even with all of the craziness they bring into my life! :)
Thursday, July 19, 2012
Sunday, July 15, 2012
Life After Surgery #2 Continued
Day Two At Hospital - I would say day two was the hardest day during the whole time Xyler was in the hospital. We went to the CICU Friday morning and I was so excited to see our favorite nurse/friend Carolyn as Xyler's nurse! It was so nice to have a nurse that we knew from the first time he was in the CICU. We became good friends and keep in touch so she knew that he would be there. She told us that he was doing well and she got him to drink a bottle. I was so happy to hear that he was eating! I thought it was going to be a day of him sleeping most of the day but that did not happen.
Poor Xyler was in a lot of pain from a few different things. Obviously from the surgery, his chest tubes, and he was super constipated. He fussed so much and it was heart breaking for me to see him in pain and to not be able to do anything about it. I couldn't hold him until later in the day, and the time the I couldn't was so hard! I couldn't stand the feeling of helplessness when my child was obviously in pain. I think the chest tubes were making it hurt when he would try to go so then he wouldn't go. We decided to give him things to help but they didn't do much for him. He would fuss and I would go up to him to try and calm him down, and he would look at me then start crying more. I think he was mad that I wasn't picking him up.
I was so happy when I could finally hold Xyler after he had his IV in his neck removed and the one in his wrist! We were even being told that he would probably get moved up to the floor that evening. I was so excited! I didn't think he would get moved up that fast and I wasn't going to complain, that was for sure! :)
When Xyler was doing better and it was close to shift change we decided to go out to eat. At shift change we have to leave from 7-8. We decided to eat at Joe's Crab Shack since we love it and hardly ever get to eat there. Scott and I hardly ever get to go out on a date so this was our date. The food was delicious and it was nice to be together but I was not liking being away from Xyler for very long. We hurried back and when we got there Xyler was not there. He had been moved up to a room!
Day Three - When we got there in the morning we were told that he had a fever. It got high enough to where they were concerned so they were drawing blood, getting a urine sample, and testing his snot for respiratory things. Because of the respiratory tests it was protocol to move him to a room away from the heart area. I didn't mind the move since the room he was moved to actually had a couch in it. These are so much better to sleep on instead of the pull out chair. Right before he was moved they were giving him some general antibiotics. While they were running it through his IV I got up to look at him in the crib and his forehead was turning bright red! I told Scott to hurry and get the nurse because he was having a reaction to the medicine. We were later told that the antibiotic, Vanco, would cause what they call the "red man syndrome". They would give him benedryl and set the pump at two hours instead of one for running it through his IV. It was so sad to see him looking so out of it from the drugs and from the fever.
The good thing that happened before they moved Xyler was his chest tubes and pacer wires were taken out! This is always a great thing since those chest tubes are mighty uncomfortable. Xyler couldn't tell us that they were but you could tell a difference with them out. The main chest tube is pretty big and they put stitches around it and then when it is taken out they tighten the stitches and tie it off. The other things they just pull out and bandage up. The NP was so nice and she was so impressed with how well Xyler held still.
I took this pic right before they took them out. You can see how out of it Xyler was.
My brother Wade and his daughter came to visit. My sister Heather and her hubby Casey and fam came to visit and brought my kids to visit since they were staying with them. It was so good to see my kids but so crazy at the same time! My parents and my sister Richelle also came to visit so it was a little crazy for a bit. I wish I could put a mute button on my kids sometimes, a pause one wouldn't be so bad either. :) We went out to lunch with all of them except for my parents and Richelle. We knew it was going to be hard for Xavian when it came time for him to leave with Heather. He has a hard time being away from us. The rest of the day was pretty uneventful, thank goodness! Xyler was eating better and his fever had gone away later that afternoon. Xyler just slept all day, which was just what he needed.
Day Four - When we got to Xyler's room he still seemed out of it. The nurse told us that his IV went bad so she had the IV team put another one in earlier that morning. When they started the Vanco they set it to run for one hour instead of two so even with a dose of benedryl before he still got red man's syndrome.
For some reason only the top part of his head went red. This wasn't as red as it was the first time.
The Vanco was so hard on his veins and he had to get a total of 3 IV's this day. I was ready to be done with the Vanco but we still had to wait until the next morning to see how the cultures were. So far all of the other tests they had ran were negative. Xyler just slept most of the day except when it was time to eat. He was eating almost as well as he normally did so we were super happy about that. One thing I really like at PCMC is that they will bring the sacrament to your room. They also hold a 30 minute sacrament meeting but where Xyler was having a hard time with the Vanco we decided not to go. We had the same nurse as the day before and I love that she was able to come into our room to partake of the sacrament too. We really liked her and I enjoyed talking to her throughout the day. She was so good to keep an eye on his IV's since he was having such a hard time with them.
Scott left that night to go stay at his sisters house since he was going to work the next day. We had been staying at the University Guest House up until this night. I just stayed in the room with Xyler, which I don't mind too much. I didn't like that his room didn't have a shower so I would have to use the community one. They also come in really early to draw blood and then take him for an x-ray. I was pretty tired Monday.
Day Five - Xyler was starting to act more like himself this day. He was still sleeping quite a bit but had longer awake periods. I think from all of the IV's he had to get before he was sick of everything! When the nurse would try to give him his medicine he would swat at her hands and push them away. I don't blame him for being sick of everything and being sick of all of the medicine he was having to take. His x-ray had shown he had gotten a bit more fluid around his heart than the day before so they were going to give him his lasix(a diuretic) through his IV. The good news was that the cultures were negative so then they could stop the antibiotics! The bad news was his IV went bad from the last dose of vanco and he would need an IV for his lasix. He was also going to have an echo sometime this day and if it looked good he might be able to go home within the next two days. We had started giving Xyler his oxycodone only when he needed the day before, instead of every 6 hours. I was trying to hold off on it until right before his echo since they weren't going to sedate him for it. I figured the oxycodone would help relax him.
Xyler did pretty well during his echo. I fed him a bottle throughout it but he drank it fast so it didn't help for very long. For some reason while he was in the hospital Xyler decided he didn't like his binky. I kept trying to give it to him during his echo and he would just spit it right back out. With the help of a movie and a great tech we made it through it.
The echo looked good but I was told that when they run lasix through the IV they like to keep them another day so that they can give it to him orally and then see how his x-ray looks. He was taken off of Oxygen and his sats looked great! I loved having him off of it and was just hoping his sats stayed high. Scott came down to visit after work but because of this info he decided to go stay at his sister's again and then go to work the next day. It was nice to see him and be able to have dinner with him.
Day Six - Xyler was eating well and doing pretty good. I was planning on one more day in the hospital, but when the doctors came around for rounds I was told we could go home. Xyler's cardiologist was going to be in Logan on Thursday so we just had to go there for an appointment so that they could do an x-ray to check the fluid around his heart. From the moment the H word was mentioned Xyler was all smiles! He knew what was going on and he was very happy about it. :) I don't think Scott was happy about the short notice since he had to leave work to get us but I was happy about it no matter how short of a notice. My sister met us at the hospital to bring my kids. It was a good feeling knowing we were all going home.
This is Xyler when we were outside the hospital waiting for Scott to pull the van up. He was so happy! Does he look like he had surgery only 5 days before? If you notice, there is no oxygen tube and you can see his whole face! I love it! What a little warrior!
We went out to eat some lunch with my sister and her kids. This was Xyler's first time going to a resturant. I made sure I asked the nurse if it would be ok to take him. What an amazing feeling to be able to all go out to eat as a family! It was something we had not done since Xyler was born.
Poor Xyler was in a lot of pain from a few different things. Obviously from the surgery, his chest tubes, and he was super constipated. He fussed so much and it was heart breaking for me to see him in pain and to not be able to do anything about it. I couldn't hold him until later in the day, and the time the I couldn't was so hard! I couldn't stand the feeling of helplessness when my child was obviously in pain. I think the chest tubes were making it hurt when he would try to go so then he wouldn't go. We decided to give him things to help but they didn't do much for him. He would fuss and I would go up to him to try and calm him down, and he would look at me then start crying more. I think he was mad that I wasn't picking him up.
I was so happy when I could finally hold Xyler after he had his IV in his neck removed and the one in his wrist! We were even being told that he would probably get moved up to the floor that evening. I was so excited! I didn't think he would get moved up that fast and I wasn't going to complain, that was for sure! :)
When Xyler was doing better and it was close to shift change we decided to go out to eat. At shift change we have to leave from 7-8. We decided to eat at Joe's Crab Shack since we love it and hardly ever get to eat there. Scott and I hardly ever get to go out on a date so this was our date. The food was delicious and it was nice to be together but I was not liking being away from Xyler for very long. We hurried back and when we got there Xyler was not there. He had been moved up to a room!
Day Three - When we got there in the morning we were told that he had a fever. It got high enough to where they were concerned so they were drawing blood, getting a urine sample, and testing his snot for respiratory things. Because of the respiratory tests it was protocol to move him to a room away from the heart area. I didn't mind the move since the room he was moved to actually had a couch in it. These are so much better to sleep on instead of the pull out chair. Right before he was moved they were giving him some general antibiotics. While they were running it through his IV I got up to look at him in the crib and his forehead was turning bright red! I told Scott to hurry and get the nurse because he was having a reaction to the medicine. We were later told that the antibiotic, Vanco, would cause what they call the "red man syndrome". They would give him benedryl and set the pump at two hours instead of one for running it through his IV. It was so sad to see him looking so out of it from the drugs and from the fever.
The good thing that happened before they moved Xyler was his chest tubes and pacer wires were taken out! This is always a great thing since those chest tubes are mighty uncomfortable. Xyler couldn't tell us that they were but you could tell a difference with them out. The main chest tube is pretty big and they put stitches around it and then when it is taken out they tighten the stitches and tie it off. The other things they just pull out and bandage up. The NP was so nice and she was so impressed with how well Xyler held still.
I took this pic right before they took them out. You can see how out of it Xyler was.
My brother Wade and his daughter came to visit. My sister Heather and her hubby Casey and fam came to visit and brought my kids to visit since they were staying with them. It was so good to see my kids but so crazy at the same time! My parents and my sister Richelle also came to visit so it was a little crazy for a bit. I wish I could put a mute button on my kids sometimes, a pause one wouldn't be so bad either. :) We went out to lunch with all of them except for my parents and Richelle. We knew it was going to be hard for Xavian when it came time for him to leave with Heather. He has a hard time being away from us. The rest of the day was pretty uneventful, thank goodness! Xyler was eating better and his fever had gone away later that afternoon. Xyler just slept all day, which was just what he needed.
Day Four - When we got to Xyler's room he still seemed out of it. The nurse told us that his IV went bad so she had the IV team put another one in earlier that morning. When they started the Vanco they set it to run for one hour instead of two so even with a dose of benedryl before he still got red man's syndrome.
For some reason only the top part of his head went red. This wasn't as red as it was the first time.
The Vanco was so hard on his veins and he had to get a total of 3 IV's this day. I was ready to be done with the Vanco but we still had to wait until the next morning to see how the cultures were. So far all of the other tests they had ran were negative. Xyler just slept most of the day except when it was time to eat. He was eating almost as well as he normally did so we were super happy about that. One thing I really like at PCMC is that they will bring the sacrament to your room. They also hold a 30 minute sacrament meeting but where Xyler was having a hard time with the Vanco we decided not to go. We had the same nurse as the day before and I love that she was able to come into our room to partake of the sacrament too. We really liked her and I enjoyed talking to her throughout the day. She was so good to keep an eye on his IV's since he was having such a hard time with them.
Scott left that night to go stay at his sisters house since he was going to work the next day. We had been staying at the University Guest House up until this night. I just stayed in the room with Xyler, which I don't mind too much. I didn't like that his room didn't have a shower so I would have to use the community one. They also come in really early to draw blood and then take him for an x-ray. I was pretty tired Monday.
Day Five - Xyler was starting to act more like himself this day. He was still sleeping quite a bit but had longer awake periods. I think from all of the IV's he had to get before he was sick of everything! When the nurse would try to give him his medicine he would swat at her hands and push them away. I don't blame him for being sick of everything and being sick of all of the medicine he was having to take. His x-ray had shown he had gotten a bit more fluid around his heart than the day before so they were going to give him his lasix(a diuretic) through his IV. The good news was that the cultures were negative so then they could stop the antibiotics! The bad news was his IV went bad from the last dose of vanco and he would need an IV for his lasix. He was also going to have an echo sometime this day and if it looked good he might be able to go home within the next two days. We had started giving Xyler his oxycodone only when he needed the day before, instead of every 6 hours. I was trying to hold off on it until right before his echo since they weren't going to sedate him for it. I figured the oxycodone would help relax him.
Xyler did pretty well during his echo. I fed him a bottle throughout it but he drank it fast so it didn't help for very long. For some reason while he was in the hospital Xyler decided he didn't like his binky. I kept trying to give it to him during his echo and he would just spit it right back out. With the help of a movie and a great tech we made it through it.
The echo looked good but I was told that when they run lasix through the IV they like to keep them another day so that they can give it to him orally and then see how his x-ray looks. He was taken off of Oxygen and his sats looked great! I loved having him off of it and was just hoping his sats stayed high. Scott came down to visit after work but because of this info he decided to go stay at his sister's again and then go to work the next day. It was nice to see him and be able to have dinner with him.
Day Six - Xyler was eating well and doing pretty good. I was planning on one more day in the hospital, but when the doctors came around for rounds I was told we could go home. Xyler's cardiologist was going to be in Logan on Thursday so we just had to go there for an appointment so that they could do an x-ray to check the fluid around his heart. From the moment the H word was mentioned Xyler was all smiles! He knew what was going on and he was very happy about it. :) I don't think Scott was happy about the short notice since he had to leave work to get us but I was happy about it no matter how short of a notice. My sister met us at the hospital to bring my kids. It was a good feeling knowing we were all going home.
This is Xyler when we were outside the hospital waiting for Scott to pull the van up. He was so happy! Does he look like he had surgery only 5 days before? If you notice, there is no oxygen tube and you can see his whole face! I love it! What a little warrior!
We went out to eat some lunch with my sister and her kids. This was Xyler's first time going to a resturant. I made sure I asked the nurse if it would be ok to take him. What an amazing feeling to be able to all go out to eat as a family! It was something we had not done since Xyler was born.
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