Thursday, December 23, 2010
Thursday, October 14, 2010
Emory is Home
Hey Everyone,
Just in case you don't know, Emory came home from the hospital on Wednesday afternoon. He is doing a little better, but we are still working on some feeding, formula, and digestive issues. I will post more later on. Thanks for your prayers.
In Him,
Twila
Just in case you don't know, Emory came home from the hospital on Wednesday afternoon. He is doing a little better, but we are still working on some feeding, formula, and digestive issues. I will post more later on. Thanks for your prayers.
In Him,
Twila
Tuesday, October 12, 2010
Emory in the Hospital
Hey Everyone,
I'm sorry it's been so long since my last blog. To say things have been busy is an understatement. Nothing extra or out of the ordinary, just life.
Emory and I went to the emergency room at Children's Hospital on Sunday afternoon due to a virus and diarrhea that he had been dealing with for almost 12 days. They admitted him and he is still there today. I came home last night in order to take care of some things with all of the family schedules and to get some rest. Hopefully, when I get there today, he will have enough progress to come home today. I will post again soon to update everyone.
Thanks for your prayers,
Twila Williams
I'm sorry it's been so long since my last blog. To say things have been busy is an understatement. Nothing extra or out of the ordinary, just life.
Emory and I went to the emergency room at Children's Hospital on Sunday afternoon due to a virus and diarrhea that he had been dealing with for almost 12 days. They admitted him and he is still there today. I came home last night in order to take care of some things with all of the family schedules and to get some rest. Hopefully, when I get there today, he will have enough progress to come home today. I will post again soon to update everyone.
Thanks for your prayers,
Twila Williams
Friday, August 20, 2010
Update
Dear Friends:
It has been a busy week but thankfully, our niece Sarah was here to help. The week started off with preschool orientation on Monday and the first day of school on Tuesday. Both boys have great teachers and enjoy their classes immensely!
We only had one dr. appointment this week and that was the post op appointment with the surgeon for Emory. His chest xray looked good. It still showed a little bit of fluid which they said should go away in time. The nurses and dr. were both pleased with how well the incisions have healed and said he looked really good. He had not lost or gained any weight, which was a little disappointing to us that he had not gained weight. The surgeon told us not to expect much weight gain until a month after surgery. When Emory came home from the hospital, he was on a regimen of taking 9 medicines. After our GI follow up appointment, we eliminated one of those medicines. After the follow up appointment with the surgeon, he eliminated 2 of those medicines. So, now Emory takes 4 medicines on a regular basis throughout the day in addition to 2 medicines that are to be given on an "as needed" basis.
Overall, Emory is doing well. He is still taking all of his feeds through the ng tube. We turn off the feeding for an hour at a time twice a day. He also still throws up once or twice a day. Although it isn't nearly as bad as it was, we are still trying to work towards him eating from the bottle and not throwing up. The surgeon suggested that in order for him to gain weight for us to increase his feeds from 30 ml an hour to 32 ml an hour. But, when we did that, he seemed to throw up more. So, we are back down to 30 ml an hour. People keep telling me how common all of this is with cardiac and digeorge babies, but it's still challenging and hard to get used to. But, that is our biggest goal for him for right now....to eat from the bottle and keep it down.
Most babies have their second round of shots at 4 months of age; however, Emory will wait and have his at 5 months of age due to us needing to wait till 6-8 weeks after surgery. He also will start his rounds of rsv vaccinations in October and they will come to our house and administer those so that we don't sit around all the germs in the pediatricians office. This is something that the pediatrician set up for us....thanks Dr. Barnwell! Our next appointment is next week when we follow up with the cardiologist on Friday.
Emmitt and Eli are doing well. They are soooo full of energy these days. We keep trying to stop them from running up and down the halls and from being so loud.....they are 200% boy! Emmitt is a big helper and Eli just repeats everything Emmitt does and says. Everything is a competition with them. Our niece Sarah came in last Saturday and her mom, Aunt Dawn, came in Wednesday night to get her. They both left this morning to go back to FL. But, the boys LOVED having them both here. Today was our first day in a very long time when it has been just us here at the house without any visitors or family members. We have just stayed in and done stuff around the house, played, watched some tv, etc. It's time for us to get into a more structured routine and hopefully we won't have too much drama with Emory for a little while.
That's the update for the kids.....everything is about the same for Claude and I. I kind of stay in a state of being tired, but my mom so kindly informed me years ago that it would be that way for at least the next 18 years. Claude is coaching football and subbing at Landmark. Although it's not ideal and doesn't make sense, at least it is bringing in some income. Please continue to pray for him to find full time permanent employment. We see that God has us here for a reason and are not sure what exactly that is. But, we also need that secured employment.
Hope everyone has a good weekend.......be blessed!
Twila
It has been a busy week but thankfully, our niece Sarah was here to help. The week started off with preschool orientation on Monday and the first day of school on Tuesday. Both boys have great teachers and enjoy their classes immensely!
We only had one dr. appointment this week and that was the post op appointment with the surgeon for Emory. His chest xray looked good. It still showed a little bit of fluid which they said should go away in time. The nurses and dr. were both pleased with how well the incisions have healed and said he looked really good. He had not lost or gained any weight, which was a little disappointing to us that he had not gained weight. The surgeon told us not to expect much weight gain until a month after surgery. When Emory came home from the hospital, he was on a regimen of taking 9 medicines. After our GI follow up appointment, we eliminated one of those medicines. After the follow up appointment with the surgeon, he eliminated 2 of those medicines. So, now Emory takes 4 medicines on a regular basis throughout the day in addition to 2 medicines that are to be given on an "as needed" basis.
Overall, Emory is doing well. He is still taking all of his feeds through the ng tube. We turn off the feeding for an hour at a time twice a day. He also still throws up once or twice a day. Although it isn't nearly as bad as it was, we are still trying to work towards him eating from the bottle and not throwing up. The surgeon suggested that in order for him to gain weight for us to increase his feeds from 30 ml an hour to 32 ml an hour. But, when we did that, he seemed to throw up more. So, we are back down to 30 ml an hour. People keep telling me how common all of this is with cardiac and digeorge babies, but it's still challenging and hard to get used to. But, that is our biggest goal for him for right now....to eat from the bottle and keep it down.
Most babies have their second round of shots at 4 months of age; however, Emory will wait and have his at 5 months of age due to us needing to wait till 6-8 weeks after surgery. He also will start his rounds of rsv vaccinations in October and they will come to our house and administer those so that we don't sit around all the germs in the pediatricians office. This is something that the pediatrician set up for us....thanks Dr. Barnwell! Our next appointment is next week when we follow up with the cardiologist on Friday.
Emmitt and Eli are doing well. They are soooo full of energy these days. We keep trying to stop them from running up and down the halls and from being so loud.....they are 200% boy! Emmitt is a big helper and Eli just repeats everything Emmitt does and says. Everything is a competition with them. Our niece Sarah came in last Saturday and her mom, Aunt Dawn, came in Wednesday night to get her. They both left this morning to go back to FL. But, the boys LOVED having them both here. Today was our first day in a very long time when it has been just us here at the house without any visitors or family members. We have just stayed in and done stuff around the house, played, watched some tv, etc. It's time for us to get into a more structured routine and hopefully we won't have too much drama with Emory for a little while.
That's the update for the kids.....everything is about the same for Claude and I. I kind of stay in a state of being tired, but my mom so kindly informed me years ago that it would be that way for at least the next 18 years. Claude is coaching football and subbing at Landmark. Although it's not ideal and doesn't make sense, at least it is bringing in some income. Please continue to pray for him to find full time permanent employment. We see that God has us here for a reason and are not sure what exactly that is. But, we also need that secured employment.
Hope everyone has a good weekend.......be blessed!
Twila
Sunday, August 15, 2010
Back to School
Well, it's that time of year again! Time for the schedules to get tighter, bed times to be earlier, lunches to be packed, clothes to be laid out the night before, etc. I can't believe that "school" (preschool for my boys) is already back in session! You see, I was supposed to have Emory after school was out last year and instead had him 3 weeks before school let out. Can I just tell you what a blur this summer has been? Can I just tell you what a blur the last three weeks have been? Oh my word! I'm running on pure adrenalin and honestly signed on to post a short blog so that everyone could have an update. I start "hitting my wall" around dinner time which is not good when you have hungry mouths to feed and a kitchen to clean up afterwards. So, tonight's blog will be short and I'll type more at length tomorrow or another day.
Emory is healing well from his surgery. Tuesday will be two weeks post surgery and Wednesday we will follow up with the surgeon at his clinic. His incision looks great, he has been fever free, he is only throwing up about once a day, and he is acting more like himself a little bit every day in the fact that he wants all the attention. He is wearing socks on his hands so that he doesn't pull out his ng tube. We changed back to his original formula and will see how he tolerates that. We did go to Sunday school and church today, which was a blessed time. Emory stayed with us in his stroller and his "formula backpack" hanging off of the handle. As long as he has the tube in, I've got to get used to going places with him and the tube. But, until he is 6-8 weeks post-op and possibly even tube free, I won't put him in the nursery, which is so unlike me. But, as I'm learning and will blog about later, every child and the season of life that he or she comes with, is different! That is the short version of how Emory is doing. Please keep him in your prayers specifically for him to tolerate bottle feedings so that we can get rid of the ng tube. And, please keep us in your prayers specifically for Claude to find employment.
Hope you all have a wonderful Monday!
Blessings,
Twila
Emory is healing well from his surgery. Tuesday will be two weeks post surgery and Wednesday we will follow up with the surgeon at his clinic. His incision looks great, he has been fever free, he is only throwing up about once a day, and he is acting more like himself a little bit every day in the fact that he wants all the attention. He is wearing socks on his hands so that he doesn't pull out his ng tube. We changed back to his original formula and will see how he tolerates that. We did go to Sunday school and church today, which was a blessed time. Emory stayed with us in his stroller and his "formula backpack" hanging off of the handle. As long as he has the tube in, I've got to get used to going places with him and the tube. But, until he is 6-8 weeks post-op and possibly even tube free, I won't put him in the nursery, which is so unlike me. But, as I'm learning and will blog about later, every child and the season of life that he or she comes with, is different! That is the short version of how Emory is doing. Please keep him in your prayers specifically for him to tolerate bottle feedings so that we can get rid of the ng tube. And, please keep us in your prayers specifically for Claude to find employment.
Hope you all have a wonderful Monday!
Blessings,
Twila
Thursday, August 12, 2010
Pure Exhaustion
Dear Family and Friends:
I have not blogged the last two nights simply due to pure exhaustion! Tuesday marked one week after surgery and they wanted to send us home that day but Emory started refluxing, throwing up, wretching, etc. in the hospital. When the surgeon did rounds, he said for us to stay one more day and let Emory be observed. He said that from a cardiac stadpoint, Emory was doing great and healing good. But, depending on how many times Emory threw up in 24 hours would determine if we needed to change from the NG Tube the the G Tube and to have the "Fundo" surgery. So, Claude sent me home to get some rest and stayed up there with Emory. When the surgeon did rounds on Wednesday, he did not think Emory's throwing up episodes were significant enough to warrant another surgery so soon. He discharged us to go home.
We got home Wednesday afternoon and the only thing Emory still needs 24/7 is his NG tube which feeds him his formula. We do have several oxygen tanks and a pulsox machine in case we need it. It took us a while to get all of the equipment and "stuff" from the hospital settled, but we got it all under control, ate a delicious home cooked meal that Gremmy cooked for us, got the older two boys bathed and in their rooms with a movie, and I was off to Wal Mart for a few things. Mind you, I have not been to Wal Mart in weeks. For those of you who know me well, you know that is rare! While in Wal Mart, Claude called and said that Emory had pulled out his tube. So, I quickly finished up the shopping, got home, and we started the process of reinserting the tube.
Claude tried several times and we almost went back to the NICU where Emory stayed just after birth, but Claude finally got it right. About an hour later though, Emory threw up a great deal. At this point, it was about 11:30 and I was concerned that maybe we didn't get the tube in the correct spot. So, off we go to the ER to have it checked......we went to the hospital close to our house rather than the children's hospital downtown. Once we got there, we were taken to the back immediately because of Emory's condition. We will always be taken to the back quickly because of his heart condition and his DiGeorge. But, once we got there, the pediatric ER was closed and that is when they mix in all the children with adults. They said it was a 4 hour wait and for a patient with DiGeorge to sit in an ER waiting room is not wise. So, we walked up to the NICU and the nurses there checked it. Plus, it was great to see some of the nurses that took care of him. They just went on and on about how big he had gotten. I guess for me to be with him 24/7 and to see all of his problems, it's hard to see his growth. Then we got home around 1:00, got Emory settled and closed my eyes at 3:00, and then was up and down till 9:00. Hopefully, tonight will be better.
During one of those up and down times, Emory pulled his NG Tube out AGAIN! This little guy is fiesty! Claude got the tube put back in and we started our process to leave for a follow up with the GI doctor. Emmitt and Eli had fun at Mrs. Misty's house, the three of us went the dr., and Gremmy left to pick up Papa in TN only to continue on to VA for Papa to preach at a meeting. Our visit with the GI doctor was successful for now. He changed one of Emory's medicines and gave us some instructions on feedings and said to follow up in 3 weeks. Basically, right now Emory is being fed through the NG Tube 24/7. If he continues to pull his tube out or if his reflux and throwing up gets excessive, then we will further consider the insertion of the G Tube and the "Fundo" surgery. Until then, we are just settling in here at home where it is cool. We can certainly go out with his bag of formula, but it hasn't yet become "second nature". Tonight when I finised bathing him and putting his pajamas on him, I put socks on his hands so that maybe he wouldn't pull the tube out.
In essence, I've gone from following a strict feeding schedule to a strict medicine schedule. Emory gets 8 medicines a day, round the clock. Thankfully though, he doesn't have to have any doses given between the hours of midnight till 6:00 a.m.
While we were at the doctors office today, we saw a few children who were much worse off than Emory. And, although our stress level is high and we are exhausted, I was so thankful then that Emory had the issues that he has. After seeing those other children, it made our life look like a breeze!
Well, the house is quiet....all the boys are sleeping.....and this momma is gonna call it a day! The older boys start preschool next week and I don't think I've looked more forward to something in a long time. I'm ready to get into somewhat of a routine and that only seems to happen when school is in session. Have a great night everyone! Until next time.......
Take Care,
Twila
I have not blogged the last two nights simply due to pure exhaustion! Tuesday marked one week after surgery and they wanted to send us home that day but Emory started refluxing, throwing up, wretching, etc. in the hospital. When the surgeon did rounds, he said for us to stay one more day and let Emory be observed. He said that from a cardiac stadpoint, Emory was doing great and healing good. But, depending on how many times Emory threw up in 24 hours would determine if we needed to change from the NG Tube the the G Tube and to have the "Fundo" surgery. So, Claude sent me home to get some rest and stayed up there with Emory. When the surgeon did rounds on Wednesday, he did not think Emory's throwing up episodes were significant enough to warrant another surgery so soon. He discharged us to go home.
We got home Wednesday afternoon and the only thing Emory still needs 24/7 is his NG tube which feeds him his formula. We do have several oxygen tanks and a pulsox machine in case we need it. It took us a while to get all of the equipment and "stuff" from the hospital settled, but we got it all under control, ate a delicious home cooked meal that Gremmy cooked for us, got the older two boys bathed and in their rooms with a movie, and I was off to Wal Mart for a few things. Mind you, I have not been to Wal Mart in weeks. For those of you who know me well, you know that is rare! While in Wal Mart, Claude called and said that Emory had pulled out his tube. So, I quickly finished up the shopping, got home, and we started the process of reinserting the tube.
Claude tried several times and we almost went back to the NICU where Emory stayed just after birth, but Claude finally got it right. About an hour later though, Emory threw up a great deal. At this point, it was about 11:30 and I was concerned that maybe we didn't get the tube in the correct spot. So, off we go to the ER to have it checked......we went to the hospital close to our house rather than the children's hospital downtown. Once we got there, we were taken to the back immediately because of Emory's condition. We will always be taken to the back quickly because of his heart condition and his DiGeorge. But, once we got there, the pediatric ER was closed and that is when they mix in all the children with adults. They said it was a 4 hour wait and for a patient with DiGeorge to sit in an ER waiting room is not wise. So, we walked up to the NICU and the nurses there checked it. Plus, it was great to see some of the nurses that took care of him. They just went on and on about how big he had gotten. I guess for me to be with him 24/7 and to see all of his problems, it's hard to see his growth. Then we got home around 1:00, got Emory settled and closed my eyes at 3:00, and then was up and down till 9:00. Hopefully, tonight will be better.
During one of those up and down times, Emory pulled his NG Tube out AGAIN! This little guy is fiesty! Claude got the tube put back in and we started our process to leave for a follow up with the GI doctor. Emmitt and Eli had fun at Mrs. Misty's house, the three of us went the dr., and Gremmy left to pick up Papa in TN only to continue on to VA for Papa to preach at a meeting. Our visit with the GI doctor was successful for now. He changed one of Emory's medicines and gave us some instructions on feedings and said to follow up in 3 weeks. Basically, right now Emory is being fed through the NG Tube 24/7. If he continues to pull his tube out or if his reflux and throwing up gets excessive, then we will further consider the insertion of the G Tube and the "Fundo" surgery. Until then, we are just settling in here at home where it is cool. We can certainly go out with his bag of formula, but it hasn't yet become "second nature". Tonight when I finised bathing him and putting his pajamas on him, I put socks on his hands so that maybe he wouldn't pull the tube out.
In essence, I've gone from following a strict feeding schedule to a strict medicine schedule. Emory gets 8 medicines a day, round the clock. Thankfully though, he doesn't have to have any doses given between the hours of midnight till 6:00 a.m.
While we were at the doctors office today, we saw a few children who were much worse off than Emory. And, although our stress level is high and we are exhausted, I was so thankful then that Emory had the issues that he has. After seeing those other children, it made our life look like a breeze!
Well, the house is quiet....all the boys are sleeping.....and this momma is gonna call it a day! The older boys start preschool next week and I don't think I've looked more forward to something in a long time. I'm ready to get into somewhat of a routine and that only seems to happen when school is in session. Have a great night everyone! Until next time.......
Take Care,
Twila
Tuesday, August 10, 2010
Feeding Issues
Dear Friends:
Emory will not be going home today due to some feeding issues. I will give more of an update later.
Have a good day,
Twila
Emory will not be going home today due to some feeding issues. I will give more of an update later.
Have a good day,
Twila
Subscribe to:
Posts (Atom)