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.
Sunday, June 24, 2012
Life after surgery #2
So....I think it's obvious by now that I am not the greatest at updating this blog. My intentions are there, however having time is not. I was planning on doing updates ever day when Xyler was in the hospital but was too tired to do it. I guess I am just getting old. :) I will just have to recap everything right now.
Day One In Hospital - In my last post I briefly talked about how Xyler was after surgery. I still won't go into too much detail. His surgery was set for 8:30 AM and we had to be there by 7:00 AM. We had to wait for quite a while before they finally called us back to get Xyler ready for his surgery. Dr. Kaza(Xyler's surgeon) met with us briefly. He couldn't believe how big Xyler was and he thought he was so cute and loved his dark eyes and long eyelashes. Then the anesthesiologist came in and talked to us. After we got an employee to come in to help Scott administer a priesthood blessing to Xyler before they took him back for his surgery. Saying goodbye before they take him is always so hard. I was doing good up until that point. They just had me carry him to where he needed to go as far as we could go. I gave him a lot of kisses and a big hug and with tears in my eyes I had to hand him over to the anesthesiologist. Scott and I made our way to the waiting room and began our long wait. It is nice that they update you throughout the surgery and I was always watching the clock waiting for an update. After a long wait we were finally able to see Xyler and by this time it was 3:30 PM. This one was longer than his first but they also had to do more this time.
In his first surgery they put in a BT Shunt so that he would get blood flow to his pulmonary arteries. they also had to widen both his left and right pulmonary artery. Both of those looked good so they didn't have to do anything with them during the second surgery. So, this surgery they had to take out the BT Shunt, patch up his hole between the lt and rt chamber(which we have a piece of the material they used and were told that his hole was really big), and put in what they call a conduet, which is from a donor, for his pulmonary valve. Xyler did not have a pulmonary valve before this surgery.
It is always such a relief when the doctor comes and talks to you about the surgery and then when you can see your child. I don't even get scared at seeing him with so many tubes and IV's after surgery because I am just so relieved that he made it!
I was so happy and surprised when they told us they would try to take the breathing tube our that evening. It happened sooner than we thought it would! Yay!
He slept most of the first day after surgery, which who can blame him. It's hard getting the anesthesia out of their little systems and then add pain meds on top of that and you have a nice sleeping concoction. We did see some eyes a few times but only for a few seconds, but he did kick his legs up a lot. That was one reason why they took out the tube sooner than expected.
It is now late and I am once again super tired. I think I should just blame it on my kids and not from being old. :) I will try my hardest to get on here tomorrow, or I guess I should say later today since it's after midnight, and finish telling about this surgery and add more pics.
Day One In Hospital - In my last post I briefly talked about how Xyler was after surgery. I still won't go into too much detail. His surgery was set for 8:30 AM and we had to be there by 7:00 AM. We had to wait for quite a while before they finally called us back to get Xyler ready for his surgery. Dr. Kaza(Xyler's surgeon) met with us briefly. He couldn't believe how big Xyler was and he thought he was so cute and loved his dark eyes and long eyelashes. Then the anesthesiologist came in and talked to us. After we got an employee to come in to help Scott administer a priesthood blessing to Xyler before they took him back for his surgery. Saying goodbye before they take him is always so hard. I was doing good up until that point. They just had me carry him to where he needed to go as far as we could go. I gave him a lot of kisses and a big hug and with tears in my eyes I had to hand him over to the anesthesiologist. Scott and I made our way to the waiting room and began our long wait. It is nice that they update you throughout the surgery and I was always watching the clock waiting for an update. After a long wait we were finally able to see Xyler and by this time it was 3:30 PM. This one was longer than his first but they also had to do more this time.
In his first surgery they put in a BT Shunt so that he would get blood flow to his pulmonary arteries. they also had to widen both his left and right pulmonary artery. Both of those looked good so they didn't have to do anything with them during the second surgery. So, this surgery they had to take out the BT Shunt, patch up his hole between the lt and rt chamber(which we have a piece of the material they used and were told that his hole was really big), and put in what they call a conduet, which is from a donor, for his pulmonary valve. Xyler did not have a pulmonary valve before this surgery.
It is always such a relief when the doctor comes and talks to you about the surgery and then when you can see your child. I don't even get scared at seeing him with so many tubes and IV's after surgery because I am just so relieved that he made it!
I was so happy and surprised when they told us they would try to take the breathing tube our that evening. It happened sooner than we thought it would! Yay!
He slept most of the first day after surgery, which who can blame him. It's hard getting the anesthesia out of their little systems and then add pain meds on top of that and you have a nice sleeping concoction. We did see some eyes a few times but only for a few seconds, but he did kick his legs up a lot. That was one reason why they took out the tube sooner than expected.
It is now late and I am once again super tired. I think I should just blame it on my kids and not from being old. :) I will try my hardest to get on here tomorrow, or I guess I should say later today since it's after midnight, and finish telling about this surgery and add more pics.
Thursday, June 14, 2012
Surgery Day
I just want to give a quick update about Xyler's surgery. Everything went well today with his surgery. It was about 6 hours long so our morning went by really slow. They have already taken out his breathing tube and have been working on weaning him off of oxygen. He was still sleeping when we left but had woken up a few times to fuss a bit. It is so nice having his surgery over with and to be on the recovery side now. We are so grateful that he is doing as well as he is and hope that he continues on this path. It has been a long day and I am ready to get some sleep so this one will be short but I will try to write a longer post tomorrow and add some pics. Goodnight.
Tuesday, June 5, 2012
Surgery Date!!!
Xyler had his MRI on May 24th. After a long wait of 4 weeks for insurance to approve it I got a call to schedule it but the soonest they could get him in was for June 13th. This was all because of the type of anesthesia they were going to use on him was only done on Wednesdays at a certain time. I was devastated since I just want to get this surgery past us. Poor Xyler is getting sick of his oxygen tube and keeps pulling it out. I called his cardiologist to see if there was anything they could do. He changed what kind of anesthesia they would use so then we were able to get him in for his MRI the very next day. This was an answer to my prayers!
Xyler did really well with the MRI. He was so cute when they were putting him to sleep. He fought it at first and then he took a big yawn and made the cutest little noise and then went to sleep. His body instantly went limp and he seemed like he would be out for a bit. The nurse took him from Scott's arms and then laid him down on the table for the MRI. Once he was laid down he instantly woke up and started wiggling like crazy! Scott and I both couldn't believe he was awake. He does not like to be laid down on tables since he normally ends up getting poked by needles when he is. I'm thinking he woke up because he was scared he was going to get a shot. :)
A week after his MRI I got the call for the date that his surgery was set for, June 15th. Well, I just got a call today and they have now changed it to June 14th. We take him in on the 13th for his pre-op. It seems so crazy that it is only a little over a week away. There are so many things I need to do to get prepared for it. It is hard to describe all of the emotions that go through me. My sister is being a saint and watching my 3 other kids. It is so hard to be away from my other kids. We are still trying to figure out where we are going to be staying so I'm stressed over this. We have options for places that are about 30 minutes away but I have a very hard time with being that far away from Xyler. It is hard enough that I have to leave him at night but it seems unbearable to be that far away too!
Right now I think I am just trying to think about how hopefully he will be off of oxygen after this surgery and will fatten up and get more strength. It is hard to think about the moment when I will have to give him a hug and a kiss and let them take him away from me and into the O.R. Right now I am just trying to keep that out of my mind but it's not easy. It is so hard to wait while knowing that they are operating on him and his heart. I am so thankful for these miraculous doctors and nurses that can do these things. He is a very strong little boy and I know he is a fighter and will fight through this. He already showed us this with his first surgery.
Hopefully in a little over a month we will be able to go out somewhere as a family. We have not been able to do this since Xyler was born. It will be so nice to take Xyler places and for him to experience more than just home, doctors offices and hospitals. He will either love it or be a little scared. I can't wait to see which one. :)
Xyler did really well with the MRI. He was so cute when they were putting him to sleep. He fought it at first and then he took a big yawn and made the cutest little noise and then went to sleep. His body instantly went limp and he seemed like he would be out for a bit. The nurse took him from Scott's arms and then laid him down on the table for the MRI. Once he was laid down he instantly woke up and started wiggling like crazy! Scott and I both couldn't believe he was awake. He does not like to be laid down on tables since he normally ends up getting poked by needles when he is. I'm thinking he woke up because he was scared he was going to get a shot. :)
A week after his MRI I got the call for the date that his surgery was set for, June 15th. Well, I just got a call today and they have now changed it to June 14th. We take him in on the 13th for his pre-op. It seems so crazy that it is only a little over a week away. There are so many things I need to do to get prepared for it. It is hard to describe all of the emotions that go through me. My sister is being a saint and watching my 3 other kids. It is so hard to be away from my other kids. We are still trying to figure out where we are going to be staying so I'm stressed over this. We have options for places that are about 30 minutes away but I have a very hard time with being that far away from Xyler. It is hard enough that I have to leave him at night but it seems unbearable to be that far away too!
Right now I think I am just trying to think about how hopefully he will be off of oxygen after this surgery and will fatten up and get more strength. It is hard to think about the moment when I will have to give him a hug and a kiss and let them take him away from me and into the O.R. Right now I am just trying to keep that out of my mind but it's not easy. It is so hard to wait while knowing that they are operating on him and his heart. I am so thankful for these miraculous doctors and nurses that can do these things. He is a very strong little boy and I know he is a fighter and will fight through this. He already showed us this with his first surgery.
Hopefully in a little over a month we will be able to go out somewhere as a family. We have not been able to do this since Xyler was born. It will be so nice to take Xyler places and for him to experience more than just home, doctors offices and hospitals. He will either love it or be a little scared. I can't wait to see which one. :)
Wednesday, May 9, 2012
Waiting....waiting...waiting...
I feel like all I do right now is wait. We are waiting for insurance to approve Xyler's MRI that needs to be done. It feels like it is taking forever! I also feel like we are in limbo until we get his MRI done and get his surgery scheduled. I don't dare make plans for anything since I have no idea if we will be able to do anything at that time or not. We are still keeping Xyler at home to make sure he doesn't get sick. We have also had to keep turning up his oxygen. If anyone knows a good way to keep his nose from drying out from the O2 I would love to hear it. I keep doing saling spray but his nose still get's stuffy and bloody. He is also liking to pull out his O2 tube. It will be nice when he no longer has to be on O2.
My daughter, Nika, is going to be turning 8 this month. I just can't believe my kids are getting so old! Xander just turned 9 in March and now this! It's crazy! She is supposed to be getting baptized on June 02, but it is looking like we will have to postpone it since we don't know when Xyler will have his surgery. We want our whole family to be able to go so this means it will have to wait until after the surgery. Nika is such a sweetheart and understands. She found out her friend will be getting baptized the next time so that made Nika very happy to wait until then so they can be baptized the same day. I'm so grateful for such a sweet and understanding daughter.
I'm really excited to see how Xavian and Xyler will be as they grow up. They already seem like they are going to be the best of friends. Xavian loves to come up to Xyler and tell him hi. Xyler loves it too and will just laugh at anything Xavian does. They are so cute together. Xavian also likes to make sure Xyler has a toy or his blankie all the time. I'm just hoping they don't fight as much as Xander and Nika do. Xander and Nika always played a lot when they were little since it was just the two of them, but now they seem to fight ALL of the time! I just don't know what to do with them. Having my 4 kids now has made me ask myself how people have more kids and still stay sane!?! :) Hopefully one day soon I will feel like I have a good routine down and that I'm going to survive being a mother. I truly have a lot of respect for my mom and her raising 8 kids.
My daughter, Nika, is going to be turning 8 this month. I just can't believe my kids are getting so old! Xander just turned 9 in March and now this! It's crazy! She is supposed to be getting baptized on June 02, but it is looking like we will have to postpone it since we don't know when Xyler will have his surgery. We want our whole family to be able to go so this means it will have to wait until after the surgery. Nika is such a sweetheart and understands. She found out her friend will be getting baptized the next time so that made Nika very happy to wait until then so they can be baptized the same day. I'm so grateful for such a sweet and understanding daughter.
I'm really excited to see how Xavian and Xyler will be as they grow up. They already seem like they are going to be the best of friends. Xavian loves to come up to Xyler and tell him hi. Xyler loves it too and will just laugh at anything Xavian does. They are so cute together. Xavian also likes to make sure Xyler has a toy or his blankie all the time. I'm just hoping they don't fight as much as Xander and Nika do. Xander and Nika always played a lot when they were little since it was just the two of them, but now they seem to fight ALL of the time! I just don't know what to do with them. Having my 4 kids now has made me ask myself how people have more kids and still stay sane!?! :) Hopefully one day soon I will feel like I have a good routine down and that I'm going to survive being a mother. I truly have a lot of respect for my mom and her raising 8 kids.
Tuesday, April 24, 2012
Update
Wow! It has been awhile since I have been on here. It seems like I never have time to do the things I need to everyday. I think we need more time in the evening and night so I can get more done and still get some sleep. :)
I thought I better get on here and write an update on Xyler. We took him in on the 18th for an echo. It went well. He kept waking up so they had to keep giving him more drugs. He was awake when they were done but still had a dazed look. He did really well with eating after so we didn't have to stay too long in recovery. The nice thing was his cardiologist came and talked to us while he was in recovery.
He told us that he was needing the next surgery now. He also said that he may need to get an MRI since the echo didn't show his left pulmonary artery very well. His surgeon was out of the country so when he came back then he would decide on if the MRI was needed or not.
Well....I got the call today and they do want an MRI. I was hoping to be told a surgery date in a couple of days but now one won't be set until after the MRI. Hopefully they will call soon with a date for it. Then we will go from there.
Waiting is hard for me. I am nervous for Xyler to have his surgery and at the same time I just want it over. I have been talking to another TOF mom and she has told me how well her daughter did after her second surgery. I hope Xyler does as well. Right now he doesn't have the strength to stand on his legs. When I try he just laughs thinking it's fun. He also doesn't sit on his own. He did just start rolling over from his back to his belly. He has been rolling onto his sides for a long time and likes to sleep on his side. One night I checked on him and he was on his belly. He has rolled back a couple of times but all of the other times he gets really mad until you move him back to his back.
I am also looking forward to him not being on oxygen after his next surgery. I am hoping he will come home without it but know it may take a bit. I have had to turn his O2 up to 1/2 a liter. He used to be on 1/4. This is also a sign that he is outgrowing his shunt and needs the surgery.
Today he is six months old. Time has gone by fast. He has added so much joy to our family and we just love him so much!
I thought I better get on here and write an update on Xyler. We took him in on the 18th for an echo. It went well. He kept waking up so they had to keep giving him more drugs. He was awake when they were done but still had a dazed look. He did really well with eating after so we didn't have to stay too long in recovery. The nice thing was his cardiologist came and talked to us while he was in recovery.
He told us that he was needing the next surgery now. He also said that he may need to get an MRI since the echo didn't show his left pulmonary artery very well. His surgeon was out of the country so when he came back then he would decide on if the MRI was needed or not.
Well....I got the call today and they do want an MRI. I was hoping to be told a surgery date in a couple of days but now one won't be set until after the MRI. Hopefully they will call soon with a date for it. Then we will go from there.
Waiting is hard for me. I am nervous for Xyler to have his surgery and at the same time I just want it over. I have been talking to another TOF mom and she has told me how well her daughter did after her second surgery. I hope Xyler does as well. Right now he doesn't have the strength to stand on his legs. When I try he just laughs thinking it's fun. He also doesn't sit on his own. He did just start rolling over from his back to his belly. He has been rolling onto his sides for a long time and likes to sleep on his side. One night I checked on him and he was on his belly. He has rolled back a couple of times but all of the other times he gets really mad until you move him back to his back.
I am also looking forward to him not being on oxygen after his next surgery. I am hoping he will come home without it but know it may take a bit. I have had to turn his O2 up to 1/2 a liter. He used to be on 1/4. This is also a sign that he is outgrowing his shunt and needs the surgery.
Today he is six months old. Time has gone by fast. He has added so much joy to our family and we just love him so much!
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