Susannah had her heart cath on Tuesday. Everything went perfectly. She did a great job handling it all. We had to be at the hospital at 8:30 for registration. She did really well with all the people coming and going. She doesn't like strangers, especially when they touch her, but she tolerates them and lets them do what they need to. The procedure was scheduled for 10am. Around 10:15, the anesthesiologist came in and had her drink some medicine (Versed) to make her sleepy. About 5-10 minutes after, she was drowsy enough, they had us walk her down the hallway, tell her goodbye, and hand her over to the assistants. At 11:45am they came out and said everything was done! The Dr. came and talked to us around 12:15ish. They brought us back to her around 1ish. They had already taken out the breathing tube and were getting her situated in her room. She had wiggled a little bit, but hadn't opened her eyes, yet, but when the blood pressure machine went off, her little eyes popped open and she was wide awake!! She had to stay flat for 4 hours. She had a hard time being still at first because she had an oxygen sensor on her big toe! I wasn't sure they would take it off for us or not, seeing as how they had to make sure she had proper blood flow to her feet, but they did since she had one on her finger, too. Susannah was MUCH happier after that and laid on her back in the bed and played with toys that we held over her for about an hour and half. After that I held her and she went to sleep and took a nap until about 4pm when they woke her up for us to go home!! They also did an ECHO on her while we were there. The Dr. that did the cath didn't think the pressures in the ventricles were quite high enough to do the Double Switch. He's not sure what exactly the surgeons will want to do. They conference with our cardiologist next Thursday, and hopefully will come up with a plan of what they think would be the best option.
Extra info so I remember: They went in both legs On one side they put in a pacer wire of some sort that was hooked up to a pacemaker, since she's in heart block, in case her heart rate dropped too low from the anesthesia. The other leg, they did the actual cath stuff.
Thursday, February 19, 2015
Tuesday, January 13, 2015
All the better to bite you with.....
Yay!! Luke has officially finished Phase I of his orthodontics!!! He went from this
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to this!!
It's been 2 1/2 years consisting of an expander, four teeth pulled, braces on, braces added, braces off, braces on, I don't remember how many times or the order. The bottom ones have been off for a while. They took the top ones off while they waited for the permanent teeth to come in, and then put the top ones back on. He now has a retainer and will continue wearing a chin cup until the next phase, which will probably be in several years considering how slowly his teeth come out!! His retainer is camoflauge!! He got to pick what color he wanted and if it was solid color, he could pick a design to go on it!! The day he got his braces off, they gave him a bag full of goodies: gum, microwave popcorn, chewy candy, pretzels, all stuff he's not supposed to eat with braces!!
P.S.S. The pictures got fixed. :)
Wednesday, January 7, 2015
Surgery Consultation
We were finally able to have a consultation with Dr. Bove, one of the top Doctors in the US that perform the Double Switch surgery! Dr. Bove was there along with Dr. Scholl, the surgeon that did Susannah's first surgery, and then another cardiologist, Dr. Bibevski. When Susannah has her surgery they will all three be doing it together. Dr. Bove has done over 140 Double Switches, and Dr. Scholl (as of last January) had only done 3. In the world of Double Switch surgeries, there are four doctors, that I have been able to find, that have done a significant number of these surgeries. The top two are Del Nido in Boston and Bove in Michigan. I cannot explain how thrilled I was to hear that Dr. Bove would be collaborating with Joe DiMaggio!
https://www.youtube.com/watch?v=p1dsI1t5Xek&feature=player_embedded
Our visit went well. Dr. Bove gave us more information about Susannah's heart that we hadn't been told before. The more of these patients he sees, the more convinced he is that the Double Switch is the thing to do, and sooner rather than later. With Susannah already having a significant tricuspid regurgitation (a sign of heart failure), her heart would inevitably go into complete heart failure and at that point she would require a heart transplant, which has an entirely new set of problems. The only other option is to do this double switch. From the research we've done and questions we've asked, we're convinced that this is a surgery that Susannah needs to have done, and Dr. Bove was our first pick of surgeons to perform it.
Apparently, the PA band should not be left on indefinitely or too long, because it can cause the valve before it to become malformed and not function properly. He feels her surgery should be done within the next 3-6 months. The numbers on the ECHO look good enough to go ahead with the Double Switch, but they will do a cardiac cath to get a more accurate reading of the pressures, and such, before they go ahead with the Double Switch. If the numbers are high, then we need to do the surgery soon, if they're just right, we can play around with a few months, and if they're low, then they'll do surgery to tighten the PA band.
When they do the Double Switch, they'll go ahead and put in her pacemaker. They usually leave the chest open for a couple days for swelling, drainage, etc., and depending on how well they can get the leads on they'll either put it on after they finish the DS, or when they go in to close the chest. I think that's all for now. My notes are in the bedroom where Leigh's sleeping, so I'm going to wait to double check.
So, our next step is the cardiac cath, which is supposed to be an outpatient procedure, possibly an overnight stay. They're going to let the cardiologist know what we discussed and then somewhere after that the hospital will call me to make an appointment. I don't know if that will be after our next cardiologist appointment or between now and then. Her next appointment is the middle of Feb., so I guess we'll just wait and see, and if I get antsy I'll go ahead and call! :)
https://www.youtube.com/watch?v=p1dsI1t5Xek&feature=player_embedded
Our visit went well. Dr. Bove gave us more information about Susannah's heart that we hadn't been told before. The more of these patients he sees, the more convinced he is that the Double Switch is the thing to do, and sooner rather than later. With Susannah already having a significant tricuspid regurgitation (a sign of heart failure), her heart would inevitably go into complete heart failure and at that point she would require a heart transplant, which has an entirely new set of problems. The only other option is to do this double switch. From the research we've done and questions we've asked, we're convinced that this is a surgery that Susannah needs to have done, and Dr. Bove was our first pick of surgeons to perform it.
Apparently, the PA band should not be left on indefinitely or too long, because it can cause the valve before it to become malformed and not function properly. He feels her surgery should be done within the next 3-6 months. The numbers on the ECHO look good enough to go ahead with the Double Switch, but they will do a cardiac cath to get a more accurate reading of the pressures, and such, before they go ahead with the Double Switch. If the numbers are high, then we need to do the surgery soon, if they're just right, we can play around with a few months, and if they're low, then they'll do surgery to tighten the PA band.
When they do the Double Switch, they'll go ahead and put in her pacemaker. They usually leave the chest open for a couple days for swelling, drainage, etc., and depending on how well they can get the leads on they'll either put it on after they finish the DS, or when they go in to close the chest. I think that's all for now. My notes are in the bedroom where Leigh's sleeping, so I'm going to wait to double check.
So, our next step is the cardiac cath, which is supposed to be an outpatient procedure, possibly an overnight stay. They're going to let the cardiologist know what we discussed and then somewhere after that the hospital will call me to make an appointment. I don't know if that will be after our next cardiologist appointment or between now and then. Her next appointment is the middle of Feb., so I guess we'll just wait and see, and if I get antsy I'll go ahead and call! :)
Tuesday, January 6, 2015
Happenings around the Riffel Household
Well, my last post was in August, and we've been quite busy since then!
Susannah has done well with the DuoCal, which is carbs and fats in a powder that we mix with her formula. She has been gaining on a curve since we started that. She went back to the GI dr. in October and he put her on a liquid fat called Liquigen. So we added that as well. She seems to be gaining better and maybe even a tad more than the curve. He released us for 4-6 months. Right now we have an appointment in March, but if she's gained well at our cardiologist visit in Feb, I'm going to move it. Since her weight gain has improved, the Cardiologist said, in November, that we didn't have to go back for THREE months! This will be the longest we have ever gone between cardiologist appointments. Even before she was born, we were at the cardiologist at least every month, if not twice a month! While we were on Christmas vacation, I received a phone call I was waiting on, to consult with Dr. Bove, the heart surgeon from Michigan. On Jan 7, we meet with Dr. Bove and Dr. Scholl, the Dr. who did Susannah's first surgery. Hopefully, we will be able to get a more likely timetable, of when her big surgery will happen.
September brought Emily's and Josiah's birthdays. Aunt Deborah and her friend Miss Amy were able to come down and help celebrate a few days early. October was busy with school and getting things lined up for November and December. The beginning of Nov. the kids and I went to Dothan for the Peanut Festival. We packed in a bit more in this trip than we usually do. We went to the Army Aviation Museum in Ft. Rucker and then we took the kids to the Marianna Caverns. It was fun and I think the kids enjoyed it. Of course, we also went to Luke's "Birthday Parade." The peanut parade always lands around Luke's birthday, and when he was little, he truly thought it was for his birthday! :) We also celebrated Luke's birthday while we were there. We celebrated Thanksgiving at the church with our church family. There were a little over 30 that showed up and a few came that wouldn't usually go to church. A week after Thanksgiving, Leigh and I drove to Dothan, dropped the kids off, and went up to Tennessee to the Marriage and Family Conference at the Bill Rice Ranch. Celebrated Timothy's birthday Saturday, before coming home on Sunday. We then went back to Dothan for Christmas two weeks later!! Our plan was to stay in Dothan a few days and then go to Atlanta and spend a couple days there. Well, all of the kids got sick that week at different times, so the plans changed to where Leigh, Luke, and Emily went up and spent the night and afternoon and came back to Dothan before we headed home. Overall we had a lovely time and made some entertaining memories!
Susannah has done well with the DuoCal, which is carbs and fats in a powder that we mix with her formula. She has been gaining on a curve since we started that. She went back to the GI dr. in October and he put her on a liquid fat called Liquigen. So we added that as well. She seems to be gaining better and maybe even a tad more than the curve. He released us for 4-6 months. Right now we have an appointment in March, but if she's gained well at our cardiologist visit in Feb, I'm going to move it. Since her weight gain has improved, the Cardiologist said, in November, that we didn't have to go back for THREE months! This will be the longest we have ever gone between cardiologist appointments. Even before she was born, we were at the cardiologist at least every month, if not twice a month! While we were on Christmas vacation, I received a phone call I was waiting on, to consult with Dr. Bove, the heart surgeon from Michigan. On Jan 7, we meet with Dr. Bove and Dr. Scholl, the Dr. who did Susannah's first surgery. Hopefully, we will be able to get a more likely timetable, of when her big surgery will happen.
September brought Emily's and Josiah's birthdays. Aunt Deborah and her friend Miss Amy were able to come down and help celebrate a few days early. October was busy with school and getting things lined up for November and December. The beginning of Nov. the kids and I went to Dothan for the Peanut Festival. We packed in a bit more in this trip than we usually do. We went to the Army Aviation Museum in Ft. Rucker and then we took the kids to the Marianna Caverns. It was fun and I think the kids enjoyed it. Of course, we also went to Luke's "Birthday Parade." The peanut parade always lands around Luke's birthday, and when he was little, he truly thought it was for his birthday! :) We also celebrated Luke's birthday while we were there. We celebrated Thanksgiving at the church with our church family. There were a little over 30 that showed up and a few came that wouldn't usually go to church. A week after Thanksgiving, Leigh and I drove to Dothan, dropped the kids off, and went up to Tennessee to the Marriage and Family Conference at the Bill Rice Ranch. Celebrated Timothy's birthday Saturday, before coming home on Sunday. We then went back to Dothan for Christmas two weeks later!! Our plan was to stay in Dothan a few days and then go to Atlanta and spend a couple days there. Well, all of the kids got sick that week at different times, so the plans changed to where Leigh, Luke, and Emily went up and spent the night and afternoon and came back to Dothan before we headed home. Overall we had a lovely time and made some entertaining memories!
Friday, August 22, 2014
This weeks visit
The GI Dr. visit this week went well. All of her blood work and stool sample tests came back normal. He discontinued the Zantac. "Since it wasn't doing anything." Yay!! (I have a great dislike for giving medications that aren't necessary.) Since she won't drink the PediaSure, he prescribed some stuff called DuoCal. It's a calorie booster that is supposed to not change the taste or the texture. We started that yesterday. Hopefully it will do the trick, along with increasing her table food. We don't have to go back for 2 months!!!! YAY!!
Monday, August 18, 2014
Overdue update
Gastroenterologist visit went ok. He ordered blood work and a stool sample. He started Susannah on Zantac in case she has hidden reflux that might be making her not want to eat very much. Said it would take two weeks to start working and maybe act as an appetite stimulant. He also prescribed PediaSure 1.5, which is a prescription PediaSure that has more calories than what you buy on the shelf. After three days of giving her both, she decreased her eating, so I got permission to stop the Zantac. She still refused to eat, so I quit the PediaSure, got her on milk and then back to her regular formula. After she started eating well for several days I started the Zantac back and she's been on it three weeks now and has shown no signs of an increased appetite, so when we go back I'm going to ask to stop it altogether. She has never shown any signs whatsoever of reflux and her formula is a sensitive kind anyways, so I seriously doubt she has any problems in that area. Her appetite isn't bad, she just doesn't intake enough calories to compensate for her heart condition. She does eat and she eats fine. She has started to show more interest in what we are eating and is starting to prefer solids to milk, which is normal development around a year old. She WILL NOT take the Pediasure at all. We've tried mixing it to various degrees and she won't have anything to do with it! I'm hoping he says we don't have to come back. I don't feel like he really listened to us. We told him how much she drinks a day and he prescribed well over that amount and we also told him that she doesn't really like sweet stuff, and the PediaSure tastes like vanilla milkshake flavor (yes, I tasted it). We weren't really surprised that she quit drinking it, but we were hoping she would tolerate it just for the extra calories.
Cardiologist visit last week went well. He is so relieved that someone else is watching her weight. She gained 5 ounces from the previous visit and if she gains between now and Sept. we won't have to go back to him for 3-4 months. Nothing has changed on her Echo's since a few weeks after her surgery in Jan., so I think she's fairly stable for now. We're just waiting for her to grow more so the band can do its thing and we can have the Double Switch done. I asked about a time table and he talked like it would be 1-2 years based on her slow growth. Of course, there is no absolute way they can come up with a time frame, it's pure guess at this point. He asked if she tires out while playing, which would be a sign that she might need a pacemaker, but as far as I can tell she does fine. With her personality, I'm not sure I would be able to tell at this age if she's tired or not from playing or if she's just playing in a different way. The plan was to wait for the Double Switch and put a pacemaker in then, but since it keeps getting pushed further out, she might need it before her big surgery.
Praying that she'll continue to gain and grow, that she'll continue to be stable and that her tricuspid valve leakage won't get worse, and that I'll be able to clearly notice symptoms of her needing a pacemaker if/when it comes to that.
This is a link to a video of a little boy that has CCTGA and got the Double Switch surgery done. The first three minutes does an excellent job of explaining and diagramming what the surgery will be, and what a CCTGA heart looks like next to a normal heart.
http://www.youtube.com/watch?v=Ur05mwMn8FA&feature=youtu.be
Cardiologist visit last week went well. He is so relieved that someone else is watching her weight. She gained 5 ounces from the previous visit and if she gains between now and Sept. we won't have to go back to him for 3-4 months. Nothing has changed on her Echo's since a few weeks after her surgery in Jan., so I think she's fairly stable for now. We're just waiting for her to grow more so the band can do its thing and we can have the Double Switch done. I asked about a time table and he talked like it would be 1-2 years based on her slow growth. Of course, there is no absolute way they can come up with a time frame, it's pure guess at this point. He asked if she tires out while playing, which would be a sign that she might need a pacemaker, but as far as I can tell she does fine. With her personality, I'm not sure I would be able to tell at this age if she's tired or not from playing or if she's just playing in a different way. The plan was to wait for the Double Switch and put a pacemaker in then, but since it keeps getting pushed further out, she might need it before her big surgery.
Praying that she'll continue to gain and grow, that she'll continue to be stable and that her tricuspid valve leakage won't get worse, and that I'll be able to clearly notice symptoms of her needing a pacemaker if/when it comes to that.
This is a link to a video of a little boy that has CCTGA and got the Double Switch surgery done. The first three minutes does an excellent job of explaining and diagramming what the surgery will be, and what a CCTGA heart looks like next to a normal heart.
http://www.youtube.com/watch?v=Ur05mwMn8FA&feature=youtu.be
Thursday, July 3, 2014
Happy Birthday!!
Happy Birthday, Susannah!!! It's hard to believe a year has gone by since our sweet baby girl was born!! It's been one of the longest years of my life, to be sure. She is growing up way too fast, as they all do, but she has been an absolute joy!! She has been, by far, the happiest and easiest of all of our kids. It could be because she has so many entertainers. :) She has six teeth, four on the top and two on the bottom. She has been cruising around furniture for a few months now. The past few weeks she has been standing by herself, but just yesterday she took one step and held it. She's still a bit wobbly. She has gotten a bit more demanding with her food. She eats a fairly wide variety, but still prefers to not eat fruit or things that are too sweet. I try to buy the baby food that has the most calories in it, which the latest I've found has been the spaghetti. It's quite a mess. :) Of course, she eats quite a bit of table food as well, but it's harder to count the calories in that. I've been trying to figure out how to wean from bottles, she's the only one that's been primarily bottle fed. The cup is coming along slowly. Her "tricks" include clapping, waving bye-bye, clicking her tongue, and kissing. At 11 months she weighed 13lbs 9 oz and was 26 inches long. I don't know how to explain how thankful we are that she's with us. She's come a long ways, but she has quite a journey ahead of her as well. Trusting God to see us through!! Thank you to everyone who has prayed us through this year!!
Mommy and Daddy and your big brothers and sister love you so much Susannah!!!!!
Update: At our cardiologist appointment in June, Susannah had not gained any weight from the previous appointment in May (5 weeks between), so we are off to see a Gastroenterologist in a couple weeks.
Mommy and Daddy and your big brothers and sister love you so much Susannah!!!!!
Update: At our cardiologist appointment in June, Susannah had not gained any weight from the previous appointment in May (5 weeks between), so we are off to see a Gastroenterologist in a couple weeks.
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