Sorry I didn't update on Thursday, it was just a long afternoon. There were long waits in the waiting rooms. Ellie really did well when Dr. Ostlie pulled out her j-tube. And, yes, he literally pulled it out. Dave said he did it quickly. I had my eyes closed while I held her hands and waited for a cork popping sound and screams of bloody murder. Didn't happen. She cried but not as loud as I anticipated and there was no cork popping sound. He put in her button and it looks sooo much better than the contraption we had on there. He also said that we could go off the Prilosec (antacid) now. He said she can reflux, but that she no longer has the area that secretes acid, so any reflux would not hurt her. So now we are totally off medicine!!! Dr. Ostlie also snipped some stitches that were poking through on her scar. Even though they are disolvable, some do manage to work there way out. Finally, he told us that we can take her off her feedings for an hour before oral feeds to try to get her hungry. He also said we could increase her continuous feeds a few mls after oral feeds to make up for any lost calories. We want her to continue gaining weight. As for her weight....you know, all these scales are different. They had her at 16lbs 1 oz....of course, two weeks ago she was 16lbs 6oz on our Peds scale. I can't imagine that she's losing weight. I'll try to get her weighed this week on the Peds scale again.
So after all that, we had to go to Radiology which was another hour long wait. We didn't get called back until 4 pm. Our appointment was at 3 pm and she hadn't eaten since 11 am. Surprisingly, she was doing fairly well. So the technitian takes us to the room and gets Ellie all set up. Setting up means she is laying on a board with a strap across her legs, a strap across her chest under her arms and with her arms pulled up over her head and strapped. She was not happy. Then she said the radiologist would be in soon and left. We waited about 7 minutes while she cried and we tried to soothe her. I finally got the tech and asked if we could release her arms since she was so unhappy and she did and left the room. I hear them calling for the the radiologist to come to our room over the speaker. The tech comes in and says she'll be in soon. About 10 minutes later and my singing Ave Maria about 10 times (this is what calms her down), I go track the tech down again. I explain how uncomfortable this is for our baby and she says the radiologist is reading our file and will be in soon. So she does arrive soon and they put the contrast in her button site. On the screen you can see the contrast inside her body and how it is moving its way through the intestine. The radiologist then looks at Dave and I and says, "where exactly did he tell you this was placed?" So much for reading Ellie's file. We explain about the pull-up and then she understands and tells us there are no leaks. Hooray! And believe me, Ellie was so happy to get out of that contraption and start eating.
Her site is still a bit sore but she's doing better each day. There's a little oozing coming from the spot but Dr. Ostlie says it's fine. Last night she threw up in the middle of the night, but it was just saliva...this happens sometimes. Of course it was enough to make me paronoid and I kept checking her color, her head to see if it was warm, her tummy for swelling and her j-site. Of course she's fine. Well, she's crying, gotta go.
Friday, February 29, 2008
Thursday, February 28, 2008
Today's The Day
We are heading to Children's Mercy soon. Ellie has an appointment to have her j-tube replaced with a button. Yes, a defective button is what caused all the problems in December (we're pretty sure anyhow), but now that the surgery site has healed and the intestine has adherred to the abdominal wall, everything should go smoothly. Dr. Oslie says there is a tiny possibility of making a hole in the intestine when placing the button but it is uncommon (of course, uncommon seems to be Ellie's middle name!). Just in case (because we are all taking precautions after the last episode) she will go to Radiology afterwards to make sure there are no leaks. I'm not really looking forward to them taking out her tube. I was told it will sound like a cork popping. That just doesn't sound pleasent. She will get some Tylonel before, but I had to stop her feedings at 11 am because of the Radiology appointment...so she's going to be really hungry on top of being mad and hurting. Hopefully it will all go fast. I'll update you all when we get back!
Friday, February 15, 2008
Happy Late V-Day
Hi all,
How funny is it that we had a cardiologist appointment on Valentine's Day? We thought it was fun! Reagan got to come with Ellie and I this time. It sure is fun to see how different the doctors act when she's with us. She even managed to get through the echocardiogram and appointment with great behavior and no tantrums (2 hours!)!! Of course, she was covered in stickers...my periodic reward to ensure good behavior. Whatever works, right? Anyway, Ellie was pretty ticked off about the echo and this was the worst she ever handled it. We got through it though. The leaking around her patches has healed. She does still have leaking in both valves (the one that they made two valves out of) but it is minor. The one that has more leaking is on the low pressure side so this is a good thing. It is something that will need to be watched and checked again in 6 months. He did decide to take her off her lasix!! One less medicine, hooray! When her cardiologist heard about her ordeal in December he said he was not surprised that her heart was fine through it all. He just said, "that means they did a good job repairing it!" And boy are we glad!
Earlier this week we had a pediatrician appointment. Ellie weighed a whopping 16 lbs 6 ozs!! Can you believe we have been in the 15 lb range since August? It is so nice that she is gaining. We are still doing oral feeds, but she is pretty much staying on continuous j-tube feeds. Nutrition and Dave and I really wanted to see her get some weight on. As for oral feeds, she doesn't have an aversion to eating, but she is just not as motivated to eat as she was before the whole incident. We are having some luck with thickened yogurt. She seems to like it anyway.
Her staph infection is looking much better, but wouldn't it figure that I just got a call that the swab they took for VRE earlier this week came back positive (we had 2 negatives in a row). It will be up to Dr. Ostlie to decide what he what's to do. I'm guessing we'll probably be leaving it alone. Why it came back positive after 2 negatives is beyond me. Our pediatrician wasn't sure either.
Tonight I was rocking in the chair with all 3 girls (Ellie in the middle)....don't ask me how we all fit. Ellie seemed to be really fascinated with Sydney and Reagan. Sometimes she would look up at Sydney and grab her hand or hold her leg and sometimes she would grab Reagan's hand or the pen that she was holding. I got to tell you, it is so funny to hear Reagan tattling on Ellie. "Mommy, Ellie's taking my pen!" Those girls really motivate Ellie. Two weeks ago she signed "more" because the girls were playing and kept running in and out of the room screaming. I thought it was coincidence the first time, but then I had the girls come in and leave the room 2 more times and each time she signed. She signed it again last weekend when I was playing with her. It is just not on a consistent basis yet. Oh, and she started rolling over again this week! So, slowly we are making progress.
How funny is it that we had a cardiologist appointment on Valentine's Day? We thought it was fun! Reagan got to come with Ellie and I this time. It sure is fun to see how different the doctors act when she's with us. She even managed to get through the echocardiogram and appointment with great behavior and no tantrums (2 hours!)!! Of course, she was covered in stickers...my periodic reward to ensure good behavior. Whatever works, right? Anyway, Ellie was pretty ticked off about the echo and this was the worst she ever handled it. We got through it though. The leaking around her patches has healed. She does still have leaking in both valves (the one that they made two valves out of) but it is minor. The one that has more leaking is on the low pressure side so this is a good thing. It is something that will need to be watched and checked again in 6 months. He did decide to take her off her lasix!! One less medicine, hooray! When her cardiologist heard about her ordeal in December he said he was not surprised that her heart was fine through it all. He just said, "that means they did a good job repairing it!" And boy are we glad!
Earlier this week we had a pediatrician appointment. Ellie weighed a whopping 16 lbs 6 ozs!! Can you believe we have been in the 15 lb range since August? It is so nice that she is gaining. We are still doing oral feeds, but she is pretty much staying on continuous j-tube feeds. Nutrition and Dave and I really wanted to see her get some weight on. As for oral feeds, she doesn't have an aversion to eating, but she is just not as motivated to eat as she was before the whole incident. We are having some luck with thickened yogurt. She seems to like it anyway.
Her staph infection is looking much better, but wouldn't it figure that I just got a call that the swab they took for VRE earlier this week came back positive (we had 2 negatives in a row). It will be up to Dr. Ostlie to decide what he what's to do. I'm guessing we'll probably be leaving it alone. Why it came back positive after 2 negatives is beyond me. Our pediatrician wasn't sure either.
Tonight I was rocking in the chair with all 3 girls (Ellie in the middle)....don't ask me how we all fit. Ellie seemed to be really fascinated with Sydney and Reagan. Sometimes she would look up at Sydney and grab her hand or hold her leg and sometimes she would grab Reagan's hand or the pen that she was holding. I got to tell you, it is so funny to hear Reagan tattling on Ellie. "Mommy, Ellie's taking my pen!" Those girls really motivate Ellie. Two weeks ago she signed "more" because the girls were playing and kept running in and out of the room screaming. I thought it was coincidence the first time, but then I had the girls come in and leave the room 2 more times and each time she signed. She signed it again last weekend when I was playing with her. It is just not on a consistent basis yet. Oh, and she started rolling over again this week! So, slowly we are making progress.
Wednesday, February 6, 2008
So I'm not sure what's going on with the Caringbridge site, but I just can't seem to update there. Look for updates on this blog from now on, but feel free to leave messages at either place.
After I updated last week, I got a phone call from Ostlie's office saying that Ellie's swab for VRE came up positive again. Then she was swabbed again on Tuesday and that one came back negative. So, we will keep on hoping for 2 more negative swabs.
Monday of this week I took Ellie in to the Ear, Nose and Throat doctor. He looked at her ears through a microscope and said she didn't have any wax buildup (yeah--no need for scrapping it out). He also said that it did not look like their was any infection. As for the failed hearing tests, he has decided to wait and do another in 3 months. He said that Ellie's ear canals are so tiny that they are the same sized as the tubes he would put in and that tubes would be impossible to maintain right now. Since she does not have any noticable hearing problems and has just gone through so many surgeries, we are going to wait for her canals to get bigger and recheck them. Good news for us since we really didn't want her to go through anymore at this point.
Tuesday we had our weekly pediatric appointment for lab swabs and I really wanted Dr. Cotter to take a look at Ellie's j-tube site. It had started to look red and yucky and she was pretty angry when I cleaned it. We also had that big snow coming in and I didn't want her to wind up with a big infection and not be able to get anywhere. Wouldn't it figure that we got a bunch of sleet out here that morning. Thankfully Dave came home to take us to the doctor. We barely made it up the hill to 62nd street. We got to the pediatrician's office fine and he took a swab of it to get cultured. We got the results yesterday...another staph infection. At least it's not MRSA this time. So we will be off to the pharmacy to pick up an antibiotic today.
Outside of that, all is well. The girls and Dave really enjoyed playing in the 9/10 inches of snow we got out here on Wednesday. We are also so thankful to have a wonderful neighbor who came out on his four wheeler and plowed our drive. Of course, even with a plowed drive, neither one of us can get the cars up the drive...so I am getting lots of exercise hauling the girls up and down the drive. Hopefully it will melt soon!
After I updated last week, I got a phone call from Ostlie's office saying that Ellie's swab for VRE came up positive again. Then she was swabbed again on Tuesday and that one came back negative. So, we will keep on hoping for 2 more negative swabs.
Monday of this week I took Ellie in to the Ear, Nose and Throat doctor. He looked at her ears through a microscope and said she didn't have any wax buildup (yeah--no need for scrapping it out). He also said that it did not look like their was any infection. As for the failed hearing tests, he has decided to wait and do another in 3 months. He said that Ellie's ear canals are so tiny that they are the same sized as the tubes he would put in and that tubes would be impossible to maintain right now. Since she does not have any noticable hearing problems and has just gone through so many surgeries, we are going to wait for her canals to get bigger and recheck them. Good news for us since we really didn't want her to go through anymore at this point.
Tuesday we had our weekly pediatric appointment for lab swabs and I really wanted Dr. Cotter to take a look at Ellie's j-tube site. It had started to look red and yucky and she was pretty angry when I cleaned it. We also had that big snow coming in and I didn't want her to wind up with a big infection and not be able to get anywhere. Wouldn't it figure that we got a bunch of sleet out here that morning. Thankfully Dave came home to take us to the doctor. We barely made it up the hill to 62nd street. We got to the pediatrician's office fine and he took a swab of it to get cultured. We got the results yesterday...another staph infection. At least it's not MRSA this time. So we will be off to the pharmacy to pick up an antibiotic today.
Outside of that, all is well. The girls and Dave really enjoyed playing in the 9/10 inches of snow we got out here on Wednesday. We are also so thankful to have a wonderful neighbor who came out on his four wheeler and plowed our drive. Of course, even with a plowed drive, neither one of us can get the cars up the drive...so I am getting lots of exercise hauling the girls up and down the drive. Hopefully it will melt soon!
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