Owen has been recovering nicely over the past week. Monday was a big day for him as he got to eat for the first time in seven weeks. Melissa fed him yogurt and he was in heaven! About two hours later it came back up. On Tuesday I fed him a half container of yogurt and he did great. We think on Monday he ate too much and his stomach was not ready for it. Today he ate another half container of baby food and seems to be doing fine. He gets so excited now when dinner time comes.
The feeding tube is still in but it is much better in the stomach that it was in the nose. Today Melissa took him off the tube for a few hours in the afternoon and he was so happy to be free. He worked his way around the house and had a ball. He is ready to be done with the equipment.
Owen will be going back for a third surgery on March 15. They will stretch the esophagus and apply more glue to the hole. This will also allow the surgeon to evaluate the hole. It should be an out-patient surgery and he will be home that night.
Iris has been sick for a few days. Melissa took her to the after hours clinic as she was really miserable last night. They told us she did not have the flu or strep throat and gave her some Tylenol. She seems to be a little better today but still not up to 100%. Hopefully tomorrow she will be back to her normal self.
Owen has been coughing a little and we are praying he does not get what Iris has. So far she is the only one who is sick.
Wednesday, February 29, 2012
Thursday, February 23, 2012
Owen Is Recovering
Owen is recovering in ICU tonight but should be heading home tomorrow. The ICU seems to be precautionary since they were in his airway a lot today. We are happy with our change to KU Med and at the end of a long day we are glad we made the switch.
The plan today was to move the tube from the nose to the stomach. A port in the stomach will keep Owen from pulling it out and will be more comforatable for him. Another plus is that the tube in the nose can increase his issues with reflux - why put it there to start with? So the surgeon informed us that a GI doctor would help place the port and check things out from a GI viewpoint. Good plan! About 30 minutes into the surgery the GI doctor came out and told us he found a major restriction in his esophagus and wanted permission to put a balloon in there and stretch/open it up. He told us this was a huge problem and could have been causing a lot of issues with reflux. This would also explain why Owen could not eat solid foods without gagging them up after a few bites. The food would basically just sit on this restriction and could not pass down. We obviously approved opening this up.
About thrity minutes later the GI doctor came back out and explained what he had done. The good news is they found it and will start correcting it. The bad news is Owen will have to go back in three weeks and have the esophagus stretched again. This will have to be done several times which requires Owen being put under each time. The other down side was that the GI doctor told us they had not done anything to the fistual (hole) and would re-evaluate in three weeks when they stretch the esophagus again. Melissa and I were instantly bummed out. We sat there for about an hour wondering why they did not address the hole while they were in there. This thing is never going to end!!!
The surgeon finally came for the consultation with us and informed us he did address the hole. The GI doctor had left when his part was done and did not realize the surgeon was not done working. He addressed the hole by applying a "glue" to the opening. Again, this is a 50/50 if it works but he was able to access the hole and get the glue where it needed to be. There were some other details he explained but overall he was pleased with what he was able to accomplish today.
The surgeon was very pleased that they found the restriction in the esophagus. He feels this was probably causing most of Owen's issues, more so than the hole. He will "glue" the hole again in three weeks when the esophagus is stretched. The surgeon thinks we can try giving Owen some soft food (yogart, baby food) via the mouth sometime next week when his throat is not sore from the procedure. Owen will be so excited to put food in his mouth, even if it is just a little bit. With the esophagus opened up he thinks Owen will be much improved. How in the world was the restriction in the esophagus not seen at the other hospital? Well probably because Owen never saw a GI doctor during any visits or stays!
Melissa and I are very happy with out decision to move Owen to KU Med. Owen still has a long way to go but we really feel he is going in the right direction now. Speaking to the surgeon it sounds like we will continue to try the glue as long as we are in there stretching the esophagus. If the hole does not close using the glue and we finish stretching the esophagus he thinks it will be time to open Owen up and surgically close the hole. Hopefully the glue works and the hole closes in the next few weeks.
On a side note, Owen is such a handsome little man and he is getting so much attention at KU Med. Doctors, nurses, strangers stopping us to tell us how cute he is. He even got a "he is the cutest little boy I have ever seen" from a complete stranger. He also had nurses coming in who were not assigned to him and said they heard he was beautiful and had to see him.
Please pray for Melissa. The ICU is not the best place for parents to have to stay. The room does not have its own bathroom or bed for the parent. There is a chair that folds out. I hope she gets some sleep.
The plan today was to move the tube from the nose to the stomach. A port in the stomach will keep Owen from pulling it out and will be more comforatable for him. Another plus is that the tube in the nose can increase his issues with reflux - why put it there to start with? So the surgeon informed us that a GI doctor would help place the port and check things out from a GI viewpoint. Good plan! About 30 minutes into the surgery the GI doctor came out and told us he found a major restriction in his esophagus and wanted permission to put a balloon in there and stretch/open it up. He told us this was a huge problem and could have been causing a lot of issues with reflux. This would also explain why Owen could not eat solid foods without gagging them up after a few bites. The food would basically just sit on this restriction and could not pass down. We obviously approved opening this up.
About thrity minutes later the GI doctor came back out and explained what he had done. The good news is they found it and will start correcting it. The bad news is Owen will have to go back in three weeks and have the esophagus stretched again. This will have to be done several times which requires Owen being put under each time. The other down side was that the GI doctor told us they had not done anything to the fistual (hole) and would re-evaluate in three weeks when they stretch the esophagus again. Melissa and I were instantly bummed out. We sat there for about an hour wondering why they did not address the hole while they were in there. This thing is never going to end!!!
The surgeon finally came for the consultation with us and informed us he did address the hole. The GI doctor had left when his part was done and did not realize the surgeon was not done working. He addressed the hole by applying a "glue" to the opening. Again, this is a 50/50 if it works but he was able to access the hole and get the glue where it needed to be. There were some other details he explained but overall he was pleased with what he was able to accomplish today.
The surgeon was very pleased that they found the restriction in the esophagus. He feels this was probably causing most of Owen's issues, more so than the hole. He will "glue" the hole again in three weeks when the esophagus is stretched. The surgeon thinks we can try giving Owen some soft food (yogart, baby food) via the mouth sometime next week when his throat is not sore from the procedure. Owen will be so excited to put food in his mouth, even if it is just a little bit. With the esophagus opened up he thinks Owen will be much improved. How in the world was the restriction in the esophagus not seen at the other hospital? Well probably because Owen never saw a GI doctor during any visits or stays!
Melissa and I are very happy with out decision to move Owen to KU Med. Owen still has a long way to go but we really feel he is going in the right direction now. Speaking to the surgeon it sounds like we will continue to try the glue as long as we are in there stretching the esophagus. If the hole does not close using the glue and we finish stretching the esophagus he thinks it will be time to open Owen up and surgically close the hole. Hopefully the glue works and the hole closes in the next few weeks.
On a side note, Owen is such a handsome little man and he is getting so much attention at KU Med. Doctors, nurses, strangers stopping us to tell us how cute he is. He even got a "he is the cutest little boy I have ever seen" from a complete stranger. He also had nurses coming in who were not assigned to him and said they heard he was beautiful and had to see him.
Please pray for Melissa. The ICU is not the best place for parents to have to stay. The room does not have its own bathroom or bed for the parent. There is a chair that folds out. I hope she gets some sleep.
Wednesday, February 22, 2012
Tomorrow - Surgery #2
Sorry for not posting sooner. We met with Owen's new doctor yesterday and we are feeling very good about our decision to make a change. Owen is scheduled for his second surgery tomorrow and we are ready to get on with it. I think we are most excited about the fact the doctor wants to move his feeding tube out of his nose and put a port in his stomach. Good thing because tonight Owen is trying to pull it out. The tube in the nose has been the biggest challenge. The port in the stomach will not allow Owen to pull it out (hopefully).
We will try to post an update tomorrow after the surgery. Please pray for Owen and the doctors.
We will try to post an update tomorrow after the surgery. Please pray for Owen and the doctors.
Thursday, February 16, 2012
Stop this ride, I want to get off
Owen had this check up today..... This crazy thing will never end. Our surgeon who scheduled this appointment, was not there. In his defense, he did tell us that he would not be here. He was going to be out of town. No big deal, his partner could do the follow up visit. So we go into the surgery clinic after the radiology appointment. There is no one there. ALL the doctors are in the same seminar! So much for his partner. So we say that is okay, we don't need to see him, we only need to schedule an appointment for surgery since the hole is still not closed. The nurse says okay, Dr. Juang will be out of the office until March 2. Then she will get us in for a clinic appointment. Dr Juang will schedule surgery at that time. I try to tell her that that is not acceptable. Owen will not wait 2 weeks for him to decide when to do the surgery. So we ask if any of his partners can do the surgery sooner. She says she will talk to him on Monday and see but for right now all she can do is schedule us for clinic on March 2.
After going home and thinking about this some more. I call back up there to tell her she really needs to call Dr. Juang on his lunch break and see if someone else can do the surgery. She calls me back and says Dr. Juang said since it is not a life threatening issue he will not ask anyone else to do the surgery. We will need to wait until March then we will see what the surgery schedule looks like.
So I, being so mad, start calling other hospitals in the area. I get a hold of another hospital that does kids. They haven't ever even seen Owen and they were able to get him in on Tuesday and possibly surgery on Thursday. So I call Dr Juang's office back to see how I get his info sent over. She tells me, "We have no problem sending his info to that doctor, but you probably won't get in any sooner." I said well, we all ready have on appointment set for next week! I am so tired of this hospital and everyone in it. One would think they would rather have a partner do the surgery with the possibility of doing the next one, but now we will never go back to him again. I understand that Owen's condition is "NOT LIFE THREATENING" but it is important to us and to have to wait 2 to 3 weeks is ridiculous. Never mind that he has a feeding tube in that he pulls out every week and we have to pay $100 every time we walk into the emergency room to have it put back in. Or that he is on the most expensive formula known to man. Yes, not life threatening, but still life altering none the less. Plus he will not even be able to eat cake on his first birthday home with his family.
After going home and thinking about this some more. I call back up there to tell her she really needs to call Dr. Juang on his lunch break and see if someone else can do the surgery. She calls me back and says Dr. Juang said since it is not a life threatening issue he will not ask anyone else to do the surgery. We will need to wait until March then we will see what the surgery schedule looks like.
So I, being so mad, start calling other hospitals in the area. I get a hold of another hospital that does kids. They haven't ever even seen Owen and they were able to get him in on Tuesday and possibly surgery on Thursday. So I call Dr Juang's office back to see how I get his info sent over. She tells me, "We have no problem sending his info to that doctor, but you probably won't get in any sooner." I said well, we all ready have on appointment set for next week! I am so tired of this hospital and everyone in it. One would think they would rather have a partner do the surgery with the possibility of doing the next one, but now we will never go back to him again. I understand that Owen's condition is "NOT LIFE THREATENING" but it is important to us and to have to wait 2 to 3 weeks is ridiculous. Never mind that he has a feeding tube in that he pulls out every week and we have to pay $100 every time we walk into the emergency room to have it put back in. Or that he is on the most expensive formula known to man. Yes, not life threatening, but still life altering none the less. Plus he will not even be able to eat cake on his first birthday home with his family.
Sunday, February 12, 2012
Owen Is Back Home
Owen returned home from the hospital and seems to be improving. Once his fever was back to normal for 24 hours they let him come home. At times he still sounds terrible with his breathing. His is taking an antibiotic for the pneumonia and will be on that for 10 days. He is scheduled to have his esophagus checked on Thursday to see if the hole is closed (pray for good news).
This little man is very tough and seems to bounce back with each challenge. This morning he has been playing with the kids and acts like nothing is wrong. I think being home and having his brothers and sisters to play with really helps. He gets so excited when he sees them.
We will keep updating as we learn more.
This little man is very tough and seems to bounce back with each challenge. This morning he has been playing with the kids and acts like nothing is wrong. I think being home and having his brothers and sisters to play with really helps. He gets so excited when he sees them.
We will keep updating as we learn more.
Thursday, February 9, 2012
Owen Is Taken To Hospital
Melissa took Owen to the ER this morning as he had a high fever for the start of the third day. Once arriving there she called to tell me Owen has pneumonia and they are admitting him. Melissa left the house this morning about 7:00am and will be there for at least a few days.
Poor little Owen has been through so much in his short life. We have all been hoping it would get better soon and he would become healthy sooner than later. We are afraid the hole in his esophagus has re-opened but pray this is not the case. Hopefully surgery team will evaluate tomorrow and give us good news.
They started him on antibiotics and hopefully this is all it takes to clear up his lungs. As we learn more tomorrow we will update the blog. PLEASE pray for this precious little person who needs to be healed. Also please pray for Melissa as she is very tired, both physically and mentally.
Poor little Owen has been through so much in his short life. We have all been hoping it would get better soon and he would become healthy sooner than later. We are afraid the hole in his esophagus has re-opened but pray this is not the case. Hopefully surgery team will evaluate tomorrow and give us good news.
They started him on antibiotics and hopefully this is all it takes to clear up his lungs. As we learn more tomorrow we will update the blog. PLEASE pray for this precious little person who needs to be healed. Also please pray for Melissa as she is very tired, both physically and mentally.
Tuesday, February 7, 2012
Things Are Going To Get Better
So we had the check up and now have to wait two more weeks to see if the hole is closed. Well Owen decided on Super Bowl Sunday he was done and pulled the tube out, again. We had just returned from church and Ansely and Iris were watching Owen as mom and dad were changing clothes. Suddenly Ansley starts screaming and running upstairs, "the tube is out, Owen is pulling the tube out!" Ansley is like her dad and does not do well in medical situations. We calmed her down and Grandma Joy came over to watch Ansley, Elliot, and Iris. We went to the ER and spent 4 hours.
Since the tube was out we decided to get some photos of Owen.....
It is starting to really depress us when we get to the ER and they remember us by name. We have not started getting the medical bills yet and we know it is going to be scary!
The last few nights Iris has been coughing and we all new it was coming. Last night Owen started coughing and officially has a cold. This afternoon Melissa called to tell me he has a 102 fever. Within five minutes Iris' school called Melissa and said she has a 102 fever and we need to come pick her up immediately. It is going to be a long night!
We sure hope things are going to get better soon. Please pray for health and a good-as-new esophagus for Owen.
We also want to continue to thank our friends who have been bringing meals. It has been such a huge help and it truly is one less thing to worry about.
Since the tube was out we decided to get some photos of Owen.....
It is starting to really depress us when we get to the ER and they remember us by name. We have not started getting the medical bills yet and we know it is going to be scary!
The last few nights Iris has been coughing and we all new it was coming. Last night Owen started coughing and officially has a cold. This afternoon Melissa called to tell me he has a 102 fever. Within five minutes Iris' school called Melissa and said she has a 102 fever and we need to come pick her up immediately. It is going to be a long night!
We sure hope things are going to get better soon. Please pray for health and a good-as-new esophagus for Owen.
We also want to continue to thank our friends who have been bringing meals. It has been such a huge help and it truly is one less thing to worry about.
Thursday, February 2, 2012
What's up Doc?
Owen had his doctor's appointment to see if his fistula had healed. We got mixed news. First his site is healing very nicely. They took about 38 photos and just about missed the small little hole. They only saw it on the 32nd picture. Then they took more just to confirm. Sure enough, there is a tiny little spot that is still open. So now we need to go back in two weeks for another swallow test to see if there is any more healing. Then if there is still a hole he will have to do the "plug" surgery again.
So I guess we better get used to the feeding tube. I don't know why, but this such a disappointment to me. I really wanted to get rid of this thing. We are all feeling more comfortable with the tube but it is such a pain. It really hinders his mobility. It is so hard to learn to walk with a tube hanging down around your feet. Tummy time is also hard with this thing in the way. I just want my little boy to eat and play like any other normal little boy. I know that I should be grateful that our situation will end and Owen will be able to be free of the feeding tube at some point.
I am so thankful for every blessing that is Owen. He is such a wonderful little guy. You just can't help but fall in love with him. He is getting use to the feeding tube even though he would much rather eat. The doctor was tickled at how willingly he opened his mouth for the barium. It tastes horrible. He was so excited to have something to put in his mouth. Poor little man. I promise that when he gets that tube out we will get him what ever he wants. Chocolate ice cream sound about right to me.
So I guess we better get used to the feeding tube. I don't know why, but this such a disappointment to me. I really wanted to get rid of this thing. We are all feeling more comfortable with the tube but it is such a pain. It really hinders his mobility. It is so hard to learn to walk with a tube hanging down around your feet. Tummy time is also hard with this thing in the way. I just want my little boy to eat and play like any other normal little boy. I know that I should be grateful that our situation will end and Owen will be able to be free of the feeding tube at some point.
I am so thankful for every blessing that is Owen. He is such a wonderful little guy. You just can't help but fall in love with him. He is getting use to the feeding tube even though he would much rather eat. The doctor was tickled at how willingly he opened his mouth for the barium. It tastes horrible. He was so excited to have something to put in his mouth. Poor little man. I promise that when he gets that tube out we will get him what ever he wants. Chocolate ice cream sound about right to me.
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