Sunday, August 30, 2009
Forgot to add...
When we saw his surgeon he did another biopsy in the office for hurshbrungs and it came back negative. No need for surgery to fix that!:)
Friday, August 28, 2009
It's been awhile...
So I have been meaning to update this but have been busy or to tired too.
July 8th we went to a down syndrome picnic. My Mom, Dad, brothers, sisters, Raul and I went. It was really fun and interesting to meet those awesome families that have the same little blessings in there lives. All the down syndrome kids LOVE to dance. They had an Elvis impersonator there and he did a great job. They had ponies, face painting, inflatable bouncers(not really sure what they are called), food and little games with prizes. It is so interesting to see the different range with down syndrome.
July 14th we went to St. Lukes Downtown for the 24hr probe to see how bad his acid reflux. That went pretty well, although he really doesn't like having anything shoved down his nose. But other then that he did great. Not so great for me, they don't really accommodate the rooms for sleep in parents.
July 16 he had a cardiologist appointment. It went FABULOUS! No more oxygen, we were super excited to not have to lug around anymore oxygen tanks. By the way I love his cardiologist Dr. Walker, she is amazing and never keeps you in the dark!
July 23 was his G.I. appointment. They didn't want to tell us over the phone the results they wanted us to come in and talk. So we therefore knew something was up. Barbie, his N.P.(also amazing), told us he refluxed a lot. His longest episode was something like 93 minutes no stop acid reflux. Poor little man. The report that they got, she let us read, said that he needed surgery or drastic medical intervention. They decided to try medication first. He was put on reglan to help him digest food faster. He was also put on Pepcid to neutralize the acids in his stomach so he wouldn't hurt so much. Reglan did have a side-affect of twitching, very rare though. But we needed to watch him for it. He had also lost weight down to 7lbs 11oz, he was 8lbs 6oz.
July 25 I thought I saw him twitch so I called the on-call G.I. doctor and he told me that he was fine and not to worry about it because I only saw it happen once. Anyways I had notice that he kept looking skinnier and skinnier. You could see all of his ribcage and collar bones. He also was not eating good at all and preferred to sleep. I was getting really worried.
July 27 I called the G.I. and told them what was going on and they told us to come in right away. We got there and Dr. Smith saw him and was really concerned. He had lost more weight and was just not happy. Dr. Smith said that he was really really skinny and that he had to think over what he wanted to do. He told us he was thinking about admitting him and having a feeding tube(NG) put in and doing a probe. He said he was definitely going to be admitted but he had to think about everything else. So we sat there for a little bit until he decided. I really liked that he took time to talk to the other Doctors and Barbie. So they decided that all of the above needed to be done. We went to the pediatrics unit and they put a feeding tube in and all the lovely monitors were placed on him. So that day we pretty much feed him from the feeding tube because he would not take a bottle and breast feeding obviously wasn't doing much for him but I still did it for 10minutes. They would come in and check his stats every three hours.
28th & 29th pretty much the same thing. They increased his feeds each day though. And he would actually take a bottle so not always fed through the NG tube.
30th we went down to pre-surgery for the probe at 5:15am. I was soo nervous and scared. It's so difficult knowing that you little 2month old baby was going under anesthesia for something like this. I had a very hard time keeping my emotions under control. We met all of the nurses and anesthesiologist that would be in there. It was nice because I had him asleep(he was not happy because he was not allowed to eat past 10pm that night) and this nice older nurse took him and said we will take really good care of him. Dr.Smith told us of all the possible things that could happen like an accidental perferation of the intestine when they took tissue samples for the biopsy(the biopsy was to test for hurshbrungs disease). He was also having a lung washing to see if he had fluids going into his lungs from his reflux, which was done by Dr.Beck(E.N.T.). We also met her she is super nice. She would also be checking his esophagus to see if any damage was done by reflux. This all would take 40mins to an hour.
So we went to the waiting room and it seemed like it took forever! We kept looking at the surgery monitor tv. And no change was made by his name. An hour had come and gone then 30 more minutes finally Dr. Smith comes out. He looks at us and looks around and asks one of the ladies that keeps tabs on everyone in there if there is a room he could talk to us in. This was my biggest fear because you know things aren't right, and the look on his face wasn't right. I was so nervous and so was Raul, we just looked at each other. While we were walking to the room he started telling us about how things went I think to assure us that Brody didn't die or anything. Once we got in the room he said that while doing the biopsy(taking the tissue samples from the intestines) he perforated the intestine. I started to silently cry and Raul just looked away and listened because he was so upset. He told us he caught it right away which usually doesn't happen, they usually go home without knowing and have to come back in symptoms of infection. He stopped right away when he knew what happened and called the surgeon. He told us this was the first time it has ever happened to him and he kept going over it in his head and there was nothing he could have done differently. I could tell he felt so bad. He said that when the surgeon got there in 15 minutes they would come back in and talk to us about what he was going to do.
Dr. Beck came in and told us how things went for her and showed us some cool pictures that I will post later of his esophagus and such. He esophagus was really red and irritated but other then that in good shape. His trachea was in a C shape instead of the normal oval, which means he has tracheomalacia. He will grow out of that but it makes the reflux worse. They did find fluid in his lungs and were going to have them tested to see what the fluids were. She finished talking to us and left.
Dr.Curnow, the surgeon, and Dr. Smith came in. Dr.Curnow told us that he was going to try and do laparoscopic surgery to stitch up the intestine but if he couldn't find the hole he would have to make a big incision and do exploratory surgery. All in all they said that the surgery would take and hour and a half. So we got to spend most of our day waiting. An hour and a half had come and gone and then 2 hours and finally Dr. Curnow came out. He told us everything went great he stitched it up no problem and they didn't need to do exploratory surgery. He said it took so long because he fixed his hernia under his bellybutton and made his bellybutton normal(he had had an elephant trunk looking bellybutton before). He told us that we would probably have to wait 30mins to see him.
30 minutes came and past finally I went and asked one of the ladies if he was ready to be seen yet and she was like oh yeah they just said that you could come back and see him if you wanted to. And DUH we wanted to. We went to post surgery and he looks so white and not himself. But I was SO happy to see him. He would kind of wake up and whimper and go back to sleep. We waited a little bit before they had the room ready in the PICU for him.
The PICU room is soo much bigger than the peds room. The nurses were one on one that night. Which was really nice. They told us that he probably wouldn't be able to eat for 2-3days and would be in the PICU for that long. When he woke up he definitely wanted to eat and he was in pain. It was so hard not to be able to help him. The one downside about that room is with all the monitors and IV's on him I was on a pretty short leash when I held him. He was also on the most oxygens he had been on sense he was born which was a little disappointing because he had just got off it. But late night/early morning the nurse took him off it and his stats were great! She also told me that Dr. Curnow said he could eat because he was looking so good and doing so well and he obviously wanted to eat. He wasn't allowed formula or breast milk for a few days just pedialyte which he gladly took. He was doing so well that we had the choice to go to peds that night. But we had decided that we felt safer here one more night with him being monitored.
The next afternoon he was transferred to the clean pediatric side(no sick babies or contagious things to worry about). Dr.Curnow visited us a few times a day and checked on him and updated us. He told us that he would be in there for probably a few days and that he could eat normal food now!! Which was way sooner than expected again because he was doing phenomenal. He came back by at like 3am and took off his bandages. Brody's bellybutton looks amazing, and his incisions! He did such a good job. Dr.Curnow told me that he could go home tomorrow night or the next morning if he was continuing to do so well but it all was really up to me and how I felt he was doing. So the next morning the nurse came by and told me again that Dr.Curnow said that he could go home that night or the next morning all depending on how I felt. So we talked about it and decided that we felt comfortable enough to go home that night.
May 1st 8pm Brody was discharged from the hospital. The surgeon wanted us to go by his office weekly and get him weighed. Dr.Curnow went on Vacation until August 20th and wanted to see us that day to discuss his NISSAN surgery and decide when. The Nissan surgery is to stop his refluxing because it is so bad. Also his G.I. doctors wanted to see him weekly. OHHH and while we were in the hospital the 2nd day he started to twitch really bad so they took him off the reglan
but he has sense continued to twitch, which the G.I. says shouldn't be happening.
May 5th & 6th Brody turned 3months on the 5th and we to the surgeons to get weighed and he weighed 8lbs and 8oz!! We went to the G.I.(Dr.Thompson this time) and talked about getting him on some extra calorie formula and about the twitching he said that he thinks that it is cause by immaturity sense he is so small for his age. But to keep an eye on it but he should stop once he starts really growing. Then we went to the cardiologists and she said he was doing great and we don't have to see her for 3 months!!
He has been gaining great he weighs 10lbs 2oz now. We talked to the surgeon on the 20th and he had originally said the end of August he wanted to do surgery but he has changed his mind and wants him to get really big so surgery is scheduled for sometime in November. We will go back in October and he will check how things are. But if he starts losing weight or other symptoms occur surgery will happen really soon. Also they don't want to do surgery so close to such a big surgery he just had and the laparoscopic surgery they have to hold the liver up with a clamp and it makes it bleed so they don't want to do that again so soon. But I hate having to see him in so much pain and things are just getting worse, he coughs a lot and spits up way more and is super wheezy sounding in is chest. They told us things will just get worse until surgery, so it's to be expected but still not fun and flu season will be in tow in November. We have an appointment with the neurologist for a second opinion on his twitches since they are still happening, but that's not until late September.
Other then that things are great, Brody is doing amazing despite his reflux. He is such a happy baby and has quite the personality. He definitely knows what he likes and dislikes. His PT and OT are super happy with how well he is doing with his muscle tone. He is so strong and loves to kick and try and stand, he also loves to talk and play with his toys. He can hold his head up pretty good on his own and look around. He LOVES his swing and music and singing. I will post pictures soon!
July 8th we went to a down syndrome picnic. My Mom, Dad, brothers, sisters, Raul and I went. It was really fun and interesting to meet those awesome families that have the same little blessings in there lives. All the down syndrome kids LOVE to dance. They had an Elvis impersonator there and he did a great job. They had ponies, face painting, inflatable bouncers(not really sure what they are called), food and little games with prizes. It is so interesting to see the different range with down syndrome.
July 14th we went to St. Lukes Downtown for the 24hr probe to see how bad his acid reflux. That went pretty well, although he really doesn't like having anything shoved down his nose. But other then that he did great. Not so great for me, they don't really accommodate the rooms for sleep in parents.
July 16 he had a cardiologist appointment. It went FABULOUS! No more oxygen, we were super excited to not have to lug around anymore oxygen tanks. By the way I love his cardiologist Dr. Walker, she is amazing and never keeps you in the dark!
July 23 was his G.I. appointment. They didn't want to tell us over the phone the results they wanted us to come in and talk. So we therefore knew something was up. Barbie, his N.P.(also amazing), told us he refluxed a lot. His longest episode was something like 93 minutes no stop acid reflux. Poor little man. The report that they got, she let us read, said that he needed surgery or drastic medical intervention. They decided to try medication first. He was put on reglan to help him digest food faster. He was also put on Pepcid to neutralize the acids in his stomach so he wouldn't hurt so much. Reglan did have a side-affect of twitching, very rare though. But we needed to watch him for it. He had also lost weight down to 7lbs 11oz, he was 8lbs 6oz.
July 25 I thought I saw him twitch so I called the on-call G.I. doctor and he told me that he was fine and not to worry about it because I only saw it happen once. Anyways I had notice that he kept looking skinnier and skinnier. You could see all of his ribcage and collar bones. He also was not eating good at all and preferred to sleep. I was getting really worried.
July 27 I called the G.I. and told them what was going on and they told us to come in right away. We got there and Dr. Smith saw him and was really concerned. He had lost more weight and was just not happy. Dr. Smith said that he was really really skinny and that he had to think over what he wanted to do. He told us he was thinking about admitting him and having a feeding tube(NG) put in and doing a probe. He said he was definitely going to be admitted but he had to think about everything else. So we sat there for a little bit until he decided. I really liked that he took time to talk to the other Doctors and Barbie. So they decided that all of the above needed to be done. We went to the pediatrics unit and they put a feeding tube in and all the lovely monitors were placed on him. So that day we pretty much feed him from the feeding tube because he would not take a bottle and breast feeding obviously wasn't doing much for him but I still did it for 10minutes. They would come in and check his stats every three hours.
28th & 29th pretty much the same thing. They increased his feeds each day though. And he would actually take a bottle so not always fed through the NG tube.
30th we went down to pre-surgery for the probe at 5:15am. I was soo nervous and scared. It's so difficult knowing that you little 2month old baby was going under anesthesia for something like this. I had a very hard time keeping my emotions under control. We met all of the nurses and anesthesiologist that would be in there. It was nice because I had him asleep(he was not happy because he was not allowed to eat past 10pm that night) and this nice older nurse took him and said we will take really good care of him. Dr.Smith told us of all the possible things that could happen like an accidental perferation of the intestine when they took tissue samples for the biopsy(the biopsy was to test for hurshbrungs disease). He was also having a lung washing to see if he had fluids going into his lungs from his reflux, which was done by Dr.Beck(E.N.T.). We also met her she is super nice. She would also be checking his esophagus to see if any damage was done by reflux. This all would take 40mins to an hour.
So we went to the waiting room and it seemed like it took forever! We kept looking at the surgery monitor tv. And no change was made by his name. An hour had come and gone then 30 more minutes finally Dr. Smith comes out. He looks at us and looks around and asks one of the ladies that keeps tabs on everyone in there if there is a room he could talk to us in. This was my biggest fear because you know things aren't right, and the look on his face wasn't right. I was so nervous and so was Raul, we just looked at each other. While we were walking to the room he started telling us about how things went I think to assure us that Brody didn't die or anything. Once we got in the room he said that while doing the biopsy(taking the tissue samples from the intestines) he perforated the intestine. I started to silently cry and Raul just looked away and listened because he was so upset. He told us he caught it right away which usually doesn't happen, they usually go home without knowing and have to come back in symptoms of infection. He stopped right away when he knew what happened and called the surgeon. He told us this was the first time it has ever happened to him and he kept going over it in his head and there was nothing he could have done differently. I could tell he felt so bad. He said that when the surgeon got there in 15 minutes they would come back in and talk to us about what he was going to do.
Dr. Beck came in and told us how things went for her and showed us some cool pictures that I will post later of his esophagus and such. He esophagus was really red and irritated but other then that in good shape. His trachea was in a C shape instead of the normal oval, which means he has tracheomalacia. He will grow out of that but it makes the reflux worse. They did find fluid in his lungs and were going to have them tested to see what the fluids were. She finished talking to us and left.
Dr.Curnow, the surgeon, and Dr. Smith came in. Dr.Curnow told us that he was going to try and do laparoscopic surgery to stitch up the intestine but if he couldn't find the hole he would have to make a big incision and do exploratory surgery. All in all they said that the surgery would take and hour and a half. So we got to spend most of our day waiting. An hour and a half had come and gone and then 2 hours and finally Dr. Curnow came out. He told us everything went great he stitched it up no problem and they didn't need to do exploratory surgery. He said it took so long because he fixed his hernia under his bellybutton and made his bellybutton normal(he had had an elephant trunk looking bellybutton before). He told us that we would probably have to wait 30mins to see him.
30 minutes came and past finally I went and asked one of the ladies if he was ready to be seen yet and she was like oh yeah they just said that you could come back and see him if you wanted to. And DUH we wanted to. We went to post surgery and he looks so white and not himself. But I was SO happy to see him. He would kind of wake up and whimper and go back to sleep. We waited a little bit before they had the room ready in the PICU for him.
The PICU room is soo much bigger than the peds room. The nurses were one on one that night. Which was really nice. They told us that he probably wouldn't be able to eat for 2-3days and would be in the PICU for that long. When he woke up he definitely wanted to eat and he was in pain. It was so hard not to be able to help him. The one downside about that room is with all the monitors and IV's on him I was on a pretty short leash when I held him. He was also on the most oxygens he had been on sense he was born which was a little disappointing because he had just got off it. But late night/early morning the nurse took him off it and his stats were great! She also told me that Dr. Curnow said he could eat because he was looking so good and doing so well and he obviously wanted to eat. He wasn't allowed formula or breast milk for a few days just pedialyte which he gladly took. He was doing so well that we had the choice to go to peds that night. But we had decided that we felt safer here one more night with him being monitored.
The next afternoon he was transferred to the clean pediatric side(no sick babies or contagious things to worry about). Dr.Curnow visited us a few times a day and checked on him and updated us. He told us that he would be in there for probably a few days and that he could eat normal food now!! Which was way sooner than expected again because he was doing phenomenal. He came back by at like 3am and took off his bandages. Brody's bellybutton looks amazing, and his incisions! He did such a good job. Dr.Curnow told me that he could go home tomorrow night or the next morning if he was continuing to do so well but it all was really up to me and how I felt he was doing. So the next morning the nurse came by and told me again that Dr.Curnow said that he could go home that night or the next morning all depending on how I felt. So we talked about it and decided that we felt comfortable enough to go home that night.
May 1st 8pm Brody was discharged from the hospital. The surgeon wanted us to go by his office weekly and get him weighed. Dr.Curnow went on Vacation until August 20th and wanted to see us that day to discuss his NISSAN surgery and decide when. The Nissan surgery is to stop his refluxing because it is so bad. Also his G.I. doctors wanted to see him weekly. OHHH and while we were in the hospital the 2nd day he started to twitch really bad so they took him off the reglan
but he has sense continued to twitch, which the G.I. says shouldn't be happening.
May 5th & 6th Brody turned 3months on the 5th and we to the surgeons to get weighed and he weighed 8lbs and 8oz!! We went to the G.I.(Dr.Thompson this time) and talked about getting him on some extra calorie formula and about the twitching he said that he thinks that it is cause by immaturity sense he is so small for his age. But to keep an eye on it but he should stop once he starts really growing. Then we went to the cardiologists and she said he was doing great and we don't have to see her for 3 months!!
He has been gaining great he weighs 10lbs 2oz now. We talked to the surgeon on the 20th and he had originally said the end of August he wanted to do surgery but he has changed his mind and wants him to get really big so surgery is scheduled for sometime in November. We will go back in October and he will check how things are. But if he starts losing weight or other symptoms occur surgery will happen really soon. Also they don't want to do surgery so close to such a big surgery he just had and the laparoscopic surgery they have to hold the liver up with a clamp and it makes it bleed so they don't want to do that again so soon. But I hate having to see him in so much pain and things are just getting worse, he coughs a lot and spits up way more and is super wheezy sounding in is chest. They told us things will just get worse until surgery, so it's to be expected but still not fun and flu season will be in tow in November. We have an appointment with the neurologist for a second opinion on his twitches since they are still happening, but that's not until late September.
Other then that things are great, Brody is doing amazing despite his reflux. He is such a happy baby and has quite the personality. He definitely knows what he likes and dislikes. His PT and OT are super happy with how well he is doing with his muscle tone. He is so strong and loves to kick and try and stand, he also loves to talk and play with his toys. He can hold his head up pretty good on his own and look around. He LOVES his swing and music and singing. I will post pictures soon!
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