I am always amazed at what Xavier is able to do. I realize I say that all of the time, but it's true! I'm probably even more amazed than your average parent because of all the extra "stuff" Xavier has been through. For that reason, you will have to forgive me for feeling the need to share my amazement with all of you...over and over and over!
Xavier is now walking all over the place by himself. It is so cute to watch him walk around, carrying his toys with him! He officially took his first independent steps about two months ago, but he has finally gained enough balance and confidence in his own legs to do it consistently. Over the weekend, Matt and I took him to Babies R Us and Xavier walked around the ENTIRE store by himself, and if you have ever been to BRU you know it isn't a small store by any means. We weren't in a hurry so we just followed him around as he checked out the shoes, toys, and baby gear. We did pause for a minute to check out a potty chair, but Xavier kept reaching down between his legs into the bowl. I don't think we are quite ready for that...haha!
My other bragging right comes from how smart Xavier is. Matt and I have been teaching Xavier sign language to help him communicate since he isn't talking yet. He has been doing really well with it and I was curious about how many signs he knows. I made a list of all the signs he has done multiple times, unprompted, and came up with 36 signs! Wow!! Here is a list of the signs he knows: milk, more, eat, all done, up, down, dad, bath, bubble, ball, football, tree, flower, hat, shoes, car, helicopter, airplane, dog, cat, fish, bird, butterfly, lion, giraffe, bear, alligator, hippo, elephant, seal, monkey, cow, horse, mouse, pig, octopus. I'm sure that I am missing some and he is learning more every day! He also likes to point to other little boys and then back at himself as if to say "hey, those kids are like me!" He is so smart and is becoming so much more aware of his surroundings. It is so much fun watching him learn new things!
I love this little boy with all my heart! He is so special!
Monday, September 26, 2011
updates...the medical side of things
It has been awhile since I've written and I thought I should share a few updates about Xavier.
Most importantly...he is doing much better! He was discharged from the hospital on September 7, a week and a half after being admitted, and has been doing really well since he got home. Before we left the hospital, we couldn't even get him to sit up in the hospital crib. Matt and I were definitely worried about how much the surgery had set Xavier back and how much pain he might be in. I assumed we would have a few quite days resting and cuddling on the couch...I couldn't have been more wrong! The minute we got home and I sat down with Xavier on my lap, he was squirming his way down to the floor and walking along the couch to get to all of his toys. I was so happy to see him active and wanting to play, but honestly, also a little sad to miss out on more cuddle time. ha. You would never know by looking at him now that he had a 6-inch section of his intestines removed four weeks ago today. He is just as active and spunky as ever (if not more so)! He seems to be eating better, but is still falling short on the growth charts. As of last week he was still less than 20 lbs. I'm not concerning myself as much about where he falls on the growth charts, as to how he is eating and his energy level. Although we still have him on a high-calorie, high-fat diet to help him gain more weight.
Last week, Xavier had appointments with his cardiologist and his intestinal surgeon. Both were very impressed with his recovery and said he was doing great. I love hearing good news from the doctors! Both doctors also gave their approval to proceed with his next cardiac surgery, which is scheduled for a week from tomorrow on October 4. It's coming up much too quickly!
I'm really hoping that Xavier will get a little break from the hospital after this next surgery...he deserves some time to just be a kid!
Most importantly...he is doing much better! He was discharged from the hospital on September 7, a week and a half after being admitted, and has been doing really well since he got home. Before we left the hospital, we couldn't even get him to sit up in the hospital crib. Matt and I were definitely worried about how much the surgery had set Xavier back and how much pain he might be in. I assumed we would have a few quite days resting and cuddling on the couch...I couldn't have been more wrong! The minute we got home and I sat down with Xavier on my lap, he was squirming his way down to the floor and walking along the couch to get to all of his toys. I was so happy to see him active and wanting to play, but honestly, also a little sad to miss out on more cuddle time. ha. You would never know by looking at him now that he had a 6-inch section of his intestines removed four weeks ago today. He is just as active and spunky as ever (if not more so)! He seems to be eating better, but is still falling short on the growth charts. As of last week he was still less than 20 lbs. I'm not concerning myself as much about where he falls on the growth charts, as to how he is eating and his energy level. Although we still have him on a high-calorie, high-fat diet to help him gain more weight.
Last week, Xavier had appointments with his cardiologist and his intestinal surgeon. Both were very impressed with his recovery and said he was doing great. I love hearing good news from the doctors! Both doctors also gave their approval to proceed with his next cardiac surgery, which is scheduled for a week from tomorrow on October 4. It's coming up much too quickly!
I'm really hoping that Xavier will get a little break from the hospital after this next surgery...he deserves some time to just be a kid!
Saturday, September 3, 2011
back in the hospital
We had finally gotten a date scheduled for Xavier's next heart surgery. September 6 was to be the big day. I had started mentally preparing myself for that awful moment when i would once again have to hand him off for surgery, and for the ups and downs of the subsequent hospital stay.
It turns out that Xavier had other plans. He bacame very sick last Sunday and Matt and I were concerned enough to warrant a visit to the emergency room. We were very hopeful that we would leave a few hours later with an expensive diagnosis of stomach flu. I think a part of us knew it wasn't going to be that simple, but had no idea just how serious the situation was. They decided to admit Xavier based on his history, and while we waited they took x-rays and did a CT scan of his abdomen. The doctor in the E.R. Told us it looked there was a possible obstruction in Xavier's intestine, but they were waiting for the surgeon who performed his Ladd procedure to review the film. They finished the admission process and took us up to his room. By this time it was 5am and I had been awake for over 24 hours...I was so exhausted and ready to let Xavier sleep and hopefully get a little sleep myself. We got Xavier settled and I layed down on the pull-out chair in his room. An hour later, the nurse came in the room saying they were preparing to take Xavier to surgery. I was stunned. I never expected emergency surgery. I wasn't sure what to say or think...just completely stunned. By this time though the adrenaline was flowing and I was wide awake. I immediately called Matt to have him come back to the hospital. Then the fear started to settle in. It's fear that sets in quickly and could easily be overwhelming, but I had to be strong for Xavier so I had to push it aside. I followed Xavier to the pre-op area where I was able to talk with the surgeon and give Xavier a kiss on the forehead. The fear returned with a vengeance as soon as they wheeled him away on the bed. Thankfully, Matt was able to make it back to the hospital before they took him away. I don't know what I would have done if I had been there alone.
It is always so nerve wracking when you finally get called back to talk to the surgeon. What are they going to say? Did everything go well? Any complications? How is Xavier doing? The surgeon eased our minds when the first words out of his mouth were that Xavier did really well. It turned out the surgeon had to remove six inches of Xavier's small intestine that had coiled tightly (kinked) causing a blockage. The surgeon believes this has probably been happening for awhile and may likely be the reason behind all of his recent GI issues. We hope that much of this is behind us because his GI issues always end to flare up after his heart surgeries and slow down hs recovery. By the time we went home Monday night, we had been up for 42 hours. We were both completely exhausted so we decided it was best for both of us to sleep at home since Xavier would remain sedated overnight.
Xavier is doing well now (5 days post-op) although he still has limited bowel sounds and is not allowed to eat or drink anything. It took them two days to get him off the ventilator because his oxygen saturation levels kept dropping (his normal level is mid-80's and they were dropping as low as the 30's), requiring the nurses to "bag" him. It was so hard to watch his sats start to drop, willing him to take deep breaths on his own, knowing the nurses were going to have to intervene to get his oxygen saturation back up. Every single time, I worried whether or not their intervention would work.
I really try not to think of the worst-case scenarios when we are at the hospital with Xavier, but sometimes fear brings them to the forefront of my mind. Once they are there, they are hard to shake. It didn't help ease my mind when another cardiac patient passed away in the ICU this week. While that is my worst fear ever, it is also a reality check about how lucky we actually have been so far. It's a reminder to never take a moment with Xavier for granted. Life is far too uncertain.
Needless to say, his intestinal issues have taken precedence for now and his heart surgery has been postponed "until further notice" to allow him time to recover. It's hard to imagine that we will most likely be back here again soon for another surgery. For now though we are focused on his recovery from this surgery and trying not to think about what is yet to come.
It turns out that Xavier had other plans. He bacame very sick last Sunday and Matt and I were concerned enough to warrant a visit to the emergency room. We were very hopeful that we would leave a few hours later with an expensive diagnosis of stomach flu. I think a part of us knew it wasn't going to be that simple, but had no idea just how serious the situation was. They decided to admit Xavier based on his history, and while we waited they took x-rays and did a CT scan of his abdomen. The doctor in the E.R. Told us it looked there was a possible obstruction in Xavier's intestine, but they were waiting for the surgeon who performed his Ladd procedure to review the film. They finished the admission process and took us up to his room. By this time it was 5am and I had been awake for over 24 hours...I was so exhausted and ready to let Xavier sleep and hopefully get a little sleep myself. We got Xavier settled and I layed down on the pull-out chair in his room. An hour later, the nurse came in the room saying they were preparing to take Xavier to surgery. I was stunned. I never expected emergency surgery. I wasn't sure what to say or think...just completely stunned. By this time though the adrenaline was flowing and I was wide awake. I immediately called Matt to have him come back to the hospital. Then the fear started to settle in. It's fear that sets in quickly and could easily be overwhelming, but I had to be strong for Xavier so I had to push it aside. I followed Xavier to the pre-op area where I was able to talk with the surgeon and give Xavier a kiss on the forehead. The fear returned with a vengeance as soon as they wheeled him away on the bed. Thankfully, Matt was able to make it back to the hospital before they took him away. I don't know what I would have done if I had been there alone.
It is always so nerve wracking when you finally get called back to talk to the surgeon. What are they going to say? Did everything go well? Any complications? How is Xavier doing? The surgeon eased our minds when the first words out of his mouth were that Xavier did really well. It turned out the surgeon had to remove six inches of Xavier's small intestine that had coiled tightly (kinked) causing a blockage. The surgeon believes this has probably been happening for awhile and may likely be the reason behind all of his recent GI issues. We hope that much of this is behind us because his GI issues always end to flare up after his heart surgeries and slow down hs recovery. By the time we went home Monday night, we had been up for 42 hours. We were both completely exhausted so we decided it was best for both of us to sleep at home since Xavier would remain sedated overnight.
Xavier is doing well now (5 days post-op) although he still has limited bowel sounds and is not allowed to eat or drink anything. It took them two days to get him off the ventilator because his oxygen saturation levels kept dropping (his normal level is mid-80's and they were dropping as low as the 30's), requiring the nurses to "bag" him. It was so hard to watch his sats start to drop, willing him to take deep breaths on his own, knowing the nurses were going to have to intervene to get his oxygen saturation back up. Every single time, I worried whether or not their intervention would work.
I really try not to think of the worst-case scenarios when we are at the hospital with Xavier, but sometimes fear brings them to the forefront of my mind. Once they are there, they are hard to shake. It didn't help ease my mind when another cardiac patient passed away in the ICU this week. While that is my worst fear ever, it is also a reality check about how lucky we actually have been so far. It's a reminder to never take a moment with Xavier for granted. Life is far too uncertain.
Needless to say, his intestinal issues have taken precedence for now and his heart surgery has been postponed "until further notice" to allow him time to recover. It's hard to imagine that we will most likely be back here again soon for another surgery. For now though we are focused on his recovery from this surgery and trying not to think about what is yet to come.
Subscribe to:
Posts (Atom)