March marks a year since Susannah's DS. She's had several checkups lately, and everything checks out good! Her pacemaker is functioning properly, her mitral valve leaks moderately (down from severely), and she's down to only two medications, as of last week. We get 4 months off from seeing the cardiologist! This will be the longest we have ever gone without seeing one of her heart doctors. She's learning and growing and getting bigger and stronger every day!
Timothy got to experience Myositis a few weeks ago. He had run a fever for two days without any other symptoms, and then about 2 days after he couldn't walk. His calf muscles hurt too much. Apparently this can cause bad enzymes to be released in the blood and can cause kidney damage. We got to go to the emergency room twice, per Dr.'s orders, to have his blood drawn. Our pediatrician was very surprised they didn't admit him the first night. The treatment is just rest and IV fluids. So we pushed fluids for several days at home. His blood work came back all normal last week! Yay!
Grandpa Riffel came down a couple weeks ago to put together the kids playset. He worked on it for four solid days and finished all but the crow's nest!! The kids have been out every single day since playing and swinging on it! So thankful he was able to come and do that!
Leigh is repairing/replacing/updating the master bathroom shower. He has been hard at work at that. He has two-ish walls torn up, replaced the drain/pipe going to the drain, and laid cement. It's slow going.
The kids and I went to Dothan for the weekend. My sisters came over Sat. morning and stayed through to Sunday. We went to Spring Farm day at Landmark park. It's a small farm with several historical buildings they've moved there. They open the buildings and do several demonstrations and stuff in the spring and fall. It was so much fun and took me back to my childhood!! :) Josiah's souvenirs include, a corncob, a nail from the blacksmith, wool from the sheep shearing, and a circle of a tree that he and Luke sawed off.
Mom and Dad are on a trip, so we weren't able to see them.
The kids are working hard at school. Looking forward to being done for the summer!!
Caleb is 16 months old and says many more words than any of the other kids did at his age! He is a busy, busy little guy that makes many, many messes every single day! He is a lot of work! But he's so cute and happy!!
Monday, March 27, 2017
Catch up
Thought I would update my blog since I'm about 2 years behind. I keep thinking I'll do a blog post every month, and then before I know it, the month is gone!
The last post was from Feb. 2015 when they did a heart cath on Susannah to figure out what her exact pressures were. After that, she had surgery on April 7th to tighten her PA band. This surgery went extremely well and she recovered quickly. She was only in the hospital for 3 days!
The talk at this time was that she should be ready for her double switch 3-6 months after the tightening. Well, in June, we went to a surgical consult expecting a surgery date, and coming away with waiting a few more months. They were saying Sept./Oct. We were hoping these dates would work out, because we found out baby Caleb was coming and would be due in Nov.
They decided she wasn't quite ready in Sept. and we continued to wait. However, In September, we ended up going to Kansas for a quick trip to see Leigh's Grandpa Riffel before he passed away.
My Dad was in Texas having radiation treatment, so Melissa kept the kids when Caleb was born in November. Deborah came down the week after to help out. She decorated the house for Christmas!
Rachel, Mark and Deborah came to help us celebrate Christmas. (That finishes up 2015 :) )
Susannah's DS surgery ended up being on March 23, 2016. Caleb was 4 months old at the time of Susannah's surgery, and I was bound and determined that he would not be bottlefed, so he went to the hospital with us, had to have special permission to hang out in the close waiting room (because it was flu season and he was not allowed in the PICU, and because the floors play room was off of that waiting room where sick kids went to play), and I went back and forth between him and Susannah. Both my parents were there and my sisters came on different weeks. Our church provided food and gift cards and visits, which was a tremendous blessing. Melissa (and Pastor) had our other kids at the house, trying to keep things as "normal" for them as possible. I say "normal" because Misselissa is SO MUCH FUN!!!! :) :) The hospital stay for the DS was 10 days. After this surgery, she ended up with a narrowed baffle and fluid backup, and we went back to the hospital overnight in May for a ballooning via cath, which didn't work, and allowed us to go back a week later due to the increase in fluid and get a chest tube and a stent. She was also diagnosed with chylothorax and we got to stay for two weeks in the hospital. She also had to be on a fat free diet for 6 weeks after she got out of the hospital. For this hospital stay, Grandpa and Grandma Cannavan were able to come and stay at home with the kids. Grandpa Riffel and Grandma Connie came for Memorial Day weekend and helped give my parents a break. I went back and forth at night with Caleb, so we could get better sleep at home. Thankfully, he was allowed in her room with us since we were in the intermediate PICU and it wasn't flu season.
Not doing details since it's behind, and most of it's on Facebook on her page.
She turned THREE in July, just a few weeks after she got home. We got to go to Sanibel with my sisters in August. We went to Pensacola for Christmas. That finishes 2016!
Thursday, February 19, 2015
Heart Catheterization
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.
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.
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!!
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