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.
Thursday, April 10, 2014
Susannah's checkup
We went to the cardiologist Tuesday for Susannah's checkup and it turned out to just be a weight check! Yay for that!! When they do an ECHO it's usually about a three hour appointment, so it was a pleasant surprise that the Dr. decided not to do one. She gained about 10 ounces from her last appointment which was 4 weeks ago. He said he wasn't thrilled with her weight gain, but he was okay with it. :) He told me he was prepared to march in and refer us to a GI doctor to discuss other calorie options or feeding tube options, but since she gained well and stayed on a curve upward, it would be my warning (he didn't call it that) for next time. So, if she doesn't gain well between this appointment and next, then next time he'll refer us to a GI doctor. I've pushed back a bit every time he's mentioned feeding tubes. He knows I don't want to go that route. She's just such a happy, healthy little girl that takes everything by mouth, as much as she wants, without tiring out, I just don't see how a feeding tube would be beneficial at this point. I could understand it if she still wasn't gaining weight, lethargic, didn't have the energy to eat, or tiring out while eating, whatever, but she's not like that at all, so to me it seems as if that would be regressing. He seemed to understand where I was coming from along those lines of thinking, and he said they would sometimes do continuous overnight feeds, which I was aware of, but she's been getting up once or twice a night and eating, so even doing that seems unnecessary, in my opinion. Susannah's been gaining on an upward curve since her surgery, so I really think as long as her heart stays like it is and doesn't get any worse right now, she should continue to gain. At least that's what makes sense to me. Please continue praying that she will continue gaining. We mix the formula with quite a bit extra for the increased calories (per dr.'s orders) and she's been eating regular food fairly well. She's never been a big eater, but she also has a lot of distractions. :) He also increased her medications a tiny bit. We don't go back for FOUR MORE WEEKS!!!! YAY!!!!
(Also, if anyone has questions, or if something I wrote doesn't make sense I don't mind clarifying)
(Also, if anyone has questions, or if something I wrote doesn't make sense I don't mind clarifying)
9 months old
Her top tooth is coming in and since this picture was taken the second one has broken through.
Monday, March 17, 2014
Six weeks post-op
Just a quick update. Susannah was six weeks post-op on March 12th. She's done well at all of her follow-up appointments. Our last checkup last week at the cardiologist she had gained almost half a pound from three weeks before that. He increased her calories again and said to feed her more regular food, so we've been working on that. He's not thrilled with her weight gain, but she is following a new curve upward, so he was okay with not doing anything drastic (aka feeding tubes) at this point. He really wants her to "catch up" to where she should be, but I don't see that happening. My other kids were between 18months to 2 years before they ended up back on the curve that they started on, so I imagine it'll take her a little longer to "catch up" than it did them. He also said we didn't have to come for FOUR WEEKS!!! That's the longest we'll have had between cardiologist visits since November! And another thing off topic, we don't have any appointments of any kind this week or next!!!! Such a nice little break!! I should write another post about that someday. Back to Susannah, her little heart is doing ok. The tricuspid regurgitation is mild to moderate, before the PA banding it was moderate to severe. The PDA closure is leaking a tiny bit, he said it wasn't uncommon for that to happen. He didn't seem concerned about it. She was in heart block this visit. She seems to tolerate it fine. She's started crawling and pulling up on things. She is literally all over the entire house. She will go and find her big brothers and sister wherever they are and play with them. She doesn't show any symptoms of tiring out or anything. She still doesn't eat a whole lot, so that is still a concern. She doesn't tire out, she's just done and not interested. He increased her Enalapril the visit before this one, but the Lasix he's kept the same. We've discontinued the Motrin. She was on that for four weeks post-op for inflammation, and we're past that and there weren't any effusions on the ECHO so he was good with that! They're saying 6 months to a year until her ventricle is ready for the big surgery. It depends on how fast she grows and how well her ventricle responds to the band and strengthens. She's a happy little girl! We're so thankful for her!
before surgery (6 1/2 mon. old)
6 weeks post-op (8 months old)
Happily watching big brothers and sister playing outside!!
Wednesday, February 12, 2014
Our Interesting Day.....
Our day started quite normally with the kids getting up far too early, started school, got to a good pausing point, went to the store, came home, ate lunch, got the kids going strong in finishing their school day, and I decided to go outside and start taking the giant overgrown philodendron vines down out of the tree in the backyard. I got dressed, got my tennis shoes on, opened the garage door, and almost walked out of the garage and there was a SNAKE in my driveway!!! I don't DO snakes!!! So, like the responsible adult I am, I closed the garage door and went inside and got my camera!! He watched me very closely while I took his picture, and then I closed the garage door and went inside. I was DONE outside!! It was kind of neat because he was out in front of the house, so the kids could watch him from the windows. Then he went in front of the living room windows and there were THREE snakes all slithering around! ICKY, ICKY, ICKY!!! Luke declared he was going to have nightmares and not going to play outside any more, Emily thought maybe she might go outside after a few days, and Josiah decided all the snakes were eating each other!
Watching the snakes took a good portion of our afternoon, and then Leigh came home early from work!! That was a nice surprise. Since I was motivated and had my shoes on, and felt slightly braver with him helping me, we went out back to work on the vines. It was entertaining and we had a few Tarzan moments! :)
We didn't quite get all the vines down. They're pretty stuck up in the top where we can't reach. Kind of hoping maybe they'll die and fall out since we've cut them. As we were pulling some of the vines out to the curb, my tennis shoe fell apart!!
And that was our exciting day! I know, it's just sooooo thrilling, but compared to most of our days, it was quite entertaining!! :) :)
In other news, Susannah sat up two times today all by herself, and she doesn't scoot on her tummy any more, she does her best to crawl. It's kind of like an inchworm, by walking her feet/knees up and falling forward. Sometimes she puts her head down and scoots with her head down and hiny up! She's so funny! We keep waiting for her to turn a flip.
Watching the snakes took a good portion of our afternoon, and then Leigh came home early from work!! That was a nice surprise. Since I was motivated and had my shoes on, and felt slightly braver with him helping me, we went out back to work on the vines. It was entertaining and we had a few Tarzan moments! :)
And that was our exciting day! I know, it's just sooooo thrilling, but compared to most of our days, it was quite entertaining!! :) :)
In other news, Susannah sat up two times today all by herself, and she doesn't scoot on her tummy any more, she does her best to crawl. It's kind of like an inchworm, by walking her feet/knees up and falling forward. Sometimes she puts her head down and scoots with her head down and hiny up! She's so funny! We keep waiting for her to turn a flip.
Monday, February 10, 2014
The Rest of the Story....
Well, I was trying to write what all happened during our hospital stay, but the words aren't flowing, so I think I'll go timeline style. First off: WE MADE IT THROUGH OUR FIRST SURGERY!!!!
Wednesday
3:00-3:30am fed Susannah
6:00am got to the hospital
7:40am passed her off to the PA. Susannah was very happy and friendly with everyone that talked to her. She didn't cry when we handed her to the PA, which I was glad of, but kind of sad because she had no idea what was coming.
9:30am update that they were just beginning the surgery. Apparently it took quite a while to start lines. We counted at least 28 sticks where they had tried to start iv's. She had a central line in her neck, an arterial line in her wrist, and a regular IV in her foot.
11-11:30am we called and they were closing her up, so we waited for the surgeon to finish and come talk to us.
12:30pm the surgeon came and told us everything went great! They did a TEE (transesophageal echocardiogram) during surgery while they put on the PA band. When the surgeon put the band on, he said they saw her septum move because of the increased pressure. He thought it was too good to be true, so he took it off and put it on again and it did the same thing. He thinks he got it on there perfectly. Tight enough to help and make a difference, but loose enough to allow for growth and further tightening. He also closed off the PDA.
1:00pm the surgeon took us back to the PICU to see Susannah and left us with the team there. The respiratory therapist suctioned her a few time and we waited for her to wake up enough so that they could extubate her. She had a breathing tube, central line, arterial line, IV line, Foley catheter, temporary pacing wire, O2 sensor on her forehead, one on her back, EKG lines, and a pulse ox. on her toe.
2:00pm Around 2 they took out the breathing tube and she did fine with that. She was still pretty out of it due to sedation and pain medicine. She "groaned" all evening and never seemed like she was sleeping peacefully. Her nurse was wonderful and was very careful with what medicine she gave her. Every time she gave her something she watched Susannah's respirations very carefully to make sure they didn't drop any. She tried a few different things trying to help her stay calm and rest. They let her eat some that night and she actually did really well with it. The nurse also let me hold her a few times. It felt so good to have her in my arms!
7:00pm was shift change and the night nurse kind of concerned me because as soon as she came on she was trying to get the doctor to ok some different medicines to give her to help control her pain. Susannah was still somewhat sedated and on several different pain medicine, so while she didn't seem peaceful, I don't know that she was uncomfortable (if that makes sense).
They also had a temporary pacing wire in that came out through her belly with an external pacemaker at the end of her bed in case they needed it.
Thursday:
3a.m. Anyways, the nurse ended up giving her Ativan at some point and at around 3a.m. her respirations started dropping and they had to bag her and give her a little Narcan to reverse some of the pain meds. Thankfully those things worked and they didn't have to intubate again. However, they took her blood gases and she was a little acidotic. Her hematocrit was also low, so they gave her some blood. They gave her one syringe pretty quick and then the second one they let go in slowly (They're big syringes that go into a IV pump). After all of that she didn't groan any more and it seemed like she was sleeping peacefully.
Susannah was still pretty out of it for most of the day. She ate well in the morning, but later in the day she quit eating. She had two blisters on the bottom of her tongue that I think were rubbing on her two bottom teeth while she tried to suck. Her belly was fat and she was swollen all over, I guess just from the fluids and such. They were giving her Lasix to help the fluids move out, but it seemed to go slowly.
They stopped all sedation Thursday evening, so it was a rough night keeping her calm and peaceful.
Mom and Dad came up to see her Thursday evening while Melissa watched the kids.
Friday:
It was a rough night with Susannah being awake a lot. She wouldn't eat well. I finally had one of the nurses look in her mouth and she had a buildup of white stuff on the back of her tongue, so they started treating her for thrush. She would just chew on her bottle, she wouldn't swallow or suck. I think her mouth and throat were just too sore. :( She had a better day today and even played with a couple toys. They removed all the extra lines and such. Her IV in her foot and become unusable due to her rubbing her feet against each other. All she had left was the Central line in her neck and then the heart monitors and Oxygen sensor. It was much easier to hold her with fewer lines. It didn't seem to bother her with us picking her up or moving her around. She was so sweet to hold. She just laid their so still and calm. Usually she's wiggling and trying to see everything. :) Mom and Dad brought the kids up to see us today. They weren't allowed in the PICU because it's flu season and we didn't get the flu shot, but Leigh and I got to go to a family room and visit with them for a little while. It was good to see them!
Saturday:
After a few doses of the Nystatin, and the blisters on the bottom of Susannah's tongue going away, she did a little better eating today. By Saturday, however, she was so mad with getting medicine stuck in her mouth, it was a fight to get her to take her bottle. If anything liquid touched her mouth she clamped her jaw together and squished her little lips shut and refused to open her mouth. She's a little bit stubborn when she wants to be. She started smiling at us today and had a fairly normal day. She played a little bit and started reaching over to one side. They brought a mobile for her to look at and she was so excited about it, smiling and reaching for it as it moved! It was so cute! She had a bit of tachypnea with stomach breathing that the doctor noticed and we talked about. She has "episodes" of that at home, so to me it was "normal." They ordered a chest x-ray for Sunday to make sure it wasn't due to fluid in her lungs or anything like that.
Sunday:
The chest x-ray was clear, so we were allowed to go home. Yay!! She slept really well through the night Sat. night. She only woke up for her medicines to be given. It took the nurse a little while to get everything together. Her other patient was very needy (it was a teeny baby next door). So we didn't get home until about 5:30pm. We had to stop at the pharmacy to get all the meds we needed. She went home on Lasix and Enalapril (she's been on both of these for several months) and then they added Nystatin for the thrush, and Motrin round the clock for pain and inflammation.
Then until now:
Susannah is doing well. She's still not back to 100 percent but she moves a little bit more every day. Her 1 week after surgery cardiologist appointment was this past Wednesday. It went well. He was thrilled with her weight gain. She gained 13 ounces in a week in a half. We go back in two weeks for a weight check, so hopefully it's not a fluke! She's eating just a little bit more than she had been before her surgery. She hadn't gained anything in about 6 weeks. He said there's no leakage from the PDA ligation, so that's good. There's still a little bit of a pericardial effusion that should go away. There was a little bit there on the Sat. before we were discharged which was the last ECHO they did in the hospital. They sent us home with an increased dosage of Lasix to help it go away, but I don't guess it changed. He sounded like it should go away soon and didn't seem worried about it. The tricuspid valve is still leaking a moderate amount. He's hoping maybe it will get a little better over time with the banding helping to keep that ventricle smaller. Overall he seemed pleased with how everything looked.
Her first two days in the hospital were two of the longest days of my life I think. I didn't know how in the world I would ever be able to do this again. But by the time we left, it was as if it wasn't so bad. The unknown is hard to think about, and I thought the roller coaster emotions were over, but whew! I felt rolled right over! I don't know how people go through things like this without God. If I didn't believe 100 percent that God knows what's best and is in control I think I would just quit! I am so thankful that God knows what the future holds and I'll do my best to not worry about what may or may not happen. I am so thankful for what He has already done for us and in our lives and pray others can see Him through us. While I do have days that I cry for what she will have to go through (it's scary), I have an overwhelming sense of peace and gratitude to God for giving her to us. She is a precious little girl and I feel so blessed that we were chosen to be her parents. I hope we're up to the challenge! :)
Wednesday
3:00-3:30am fed Susannah
6:00am got to the hospital
7:40am passed her off to the PA. Susannah was very happy and friendly with everyone that talked to her. She didn't cry when we handed her to the PA, which I was glad of, but kind of sad because she had no idea what was coming.
9:30am update that they were just beginning the surgery. Apparently it took quite a while to start lines. We counted at least 28 sticks where they had tried to start iv's. She had a central line in her neck, an arterial line in her wrist, and a regular IV in her foot.
11-11:30am we called and they were closing her up, so we waited for the surgeon to finish and come talk to us.
12:30pm the surgeon came and told us everything went great! They did a TEE (transesophageal echocardiogram) during surgery while they put on the PA band. When the surgeon put the band on, he said they saw her septum move because of the increased pressure. He thought it was too good to be true, so he took it off and put it on again and it did the same thing. He thinks he got it on there perfectly. Tight enough to help and make a difference, but loose enough to allow for growth and further tightening. He also closed off the PDA.
1:00pm the surgeon took us back to the PICU to see Susannah and left us with the team there. The respiratory therapist suctioned her a few time and we waited for her to wake up enough so that they could extubate her. She had a breathing tube, central line, arterial line, IV line, Foley catheter, temporary pacing wire, O2 sensor on her forehead, one on her back, EKG lines, and a pulse ox. on her toe.
2:00pm Around 2 they took out the breathing tube and she did fine with that. She was still pretty out of it due to sedation and pain medicine. She "groaned" all evening and never seemed like she was sleeping peacefully. Her nurse was wonderful and was very careful with what medicine she gave her. Every time she gave her something she watched Susannah's respirations very carefully to make sure they didn't drop any. She tried a few different things trying to help her stay calm and rest. They let her eat some that night and she actually did really well with it. The nurse also let me hold her a few times. It felt so good to have her in my arms!
7:00pm was shift change and the night nurse kind of concerned me because as soon as she came on she was trying to get the doctor to ok some different medicines to give her to help control her pain. Susannah was still somewhat sedated and on several different pain medicine, so while she didn't seem peaceful, I don't know that she was uncomfortable (if that makes sense).
They also had a temporary pacing wire in that came out through her belly with an external pacemaker at the end of her bed in case they needed it.
Thursday:
3a.m. Anyways, the nurse ended up giving her Ativan at some point and at around 3a.m. her respirations started dropping and they had to bag her and give her a little Narcan to reverse some of the pain meds. Thankfully those things worked and they didn't have to intubate again. However, they took her blood gases and she was a little acidotic. Her hematocrit was also low, so they gave her some blood. They gave her one syringe pretty quick and then the second one they let go in slowly (They're big syringes that go into a IV pump). After all of that she didn't groan any more and it seemed like she was sleeping peacefully.
Susannah was still pretty out of it for most of the day. She ate well in the morning, but later in the day she quit eating. She had two blisters on the bottom of her tongue that I think were rubbing on her two bottom teeth while she tried to suck. Her belly was fat and she was swollen all over, I guess just from the fluids and such. They were giving her Lasix to help the fluids move out, but it seemed to go slowly.
They stopped all sedation Thursday evening, so it was a rough night keeping her calm and peaceful.
Mom and Dad came up to see her Thursday evening while Melissa watched the kids.
Friday:
It was a rough night with Susannah being awake a lot. She wouldn't eat well. I finally had one of the nurses look in her mouth and she had a buildup of white stuff on the back of her tongue, so they started treating her for thrush. She would just chew on her bottle, she wouldn't swallow or suck. I think her mouth and throat were just too sore. :( She had a better day today and even played with a couple toys. They removed all the extra lines and such. Her IV in her foot and become unusable due to her rubbing her feet against each other. All she had left was the Central line in her neck and then the heart monitors and Oxygen sensor. It was much easier to hold her with fewer lines. It didn't seem to bother her with us picking her up or moving her around. She was so sweet to hold. She just laid their so still and calm. Usually she's wiggling and trying to see everything. :) Mom and Dad brought the kids up to see us today. They weren't allowed in the PICU because it's flu season and we didn't get the flu shot, but Leigh and I got to go to a family room and visit with them for a little while. It was good to see them!
Saturday:
After a few doses of the Nystatin, and the blisters on the bottom of Susannah's tongue going away, she did a little better eating today. By Saturday, however, she was so mad with getting medicine stuck in her mouth, it was a fight to get her to take her bottle. If anything liquid touched her mouth she clamped her jaw together and squished her little lips shut and refused to open her mouth. She's a little bit stubborn when she wants to be. She started smiling at us today and had a fairly normal day. She played a little bit and started reaching over to one side. They brought a mobile for her to look at and she was so excited about it, smiling and reaching for it as it moved! It was so cute! She had a bit of tachypnea with stomach breathing that the doctor noticed and we talked about. She has "episodes" of that at home, so to me it was "normal." They ordered a chest x-ray for Sunday to make sure it wasn't due to fluid in her lungs or anything like that.
Sunday:
The chest x-ray was clear, so we were allowed to go home. Yay!! She slept really well through the night Sat. night. She only woke up for her medicines to be given. It took the nurse a little while to get everything together. Her other patient was very needy (it was a teeny baby next door). So we didn't get home until about 5:30pm. We had to stop at the pharmacy to get all the meds we needed. She went home on Lasix and Enalapril (she's been on both of these for several months) and then they added Nystatin for the thrush, and Motrin round the clock for pain and inflammation.
Then until now:
Susannah is doing well. She's still not back to 100 percent but she moves a little bit more every day. Her 1 week after surgery cardiologist appointment was this past Wednesday. It went well. He was thrilled with her weight gain. She gained 13 ounces in a week in a half. We go back in two weeks for a weight check, so hopefully it's not a fluke! She's eating just a little bit more than she had been before her surgery. She hadn't gained anything in about 6 weeks. He said there's no leakage from the PDA ligation, so that's good. There's still a little bit of a pericardial effusion that should go away. There was a little bit there on the Sat. before we were discharged which was the last ECHO they did in the hospital. They sent us home with an increased dosage of Lasix to help it go away, but I don't guess it changed. He sounded like it should go away soon and didn't seem worried about it. The tricuspid valve is still leaking a moderate amount. He's hoping maybe it will get a little better over time with the banding helping to keep that ventricle smaller. Overall he seemed pleased with how everything looked.
Her first two days in the hospital were two of the longest days of my life I think. I didn't know how in the world I would ever be able to do this again. But by the time we left, it was as if it wasn't so bad. The unknown is hard to think about, and I thought the roller coaster emotions were over, but whew! I felt rolled right over! I don't know how people go through things like this without God. If I didn't believe 100 percent that God knows what's best and is in control I think I would just quit! I am so thankful that God knows what the future holds and I'll do my best to not worry about what may or may not happen. I am so thankful for what He has already done for us and in our lives and pray others can see Him through us. While I do have days that I cry for what she will have to go through (it's scary), I have an overwhelming sense of peace and gratitude to God for giving her to us. She is a precious little girl and I feel so blessed that we were chosen to be her parents. I hope we're up to the challenge! :)
Tuesday, January 28, 2014
Pre-op
We had Susannah's pre-op yesterday. We went to the hospital and on the first floor she had her blood drawn. It consisted of an arm stick where they took three vials, a finger stick which they squeezed and squeezed and squeezed until they got enough for a little container and a nose swab that went all the way up her little nose. It was to test for RSV. I guess to make sure she didn't have it, the nurse didn't know why exactly she had that particular nose swab test. Then we went to third floor and had a chest x-ray done, and then to fourth floor for an ECHO and EKG. She was so tired by that point she ate a little bit and slept for most of the ECHO. We received all of our instructions and everything for Wednesday. We are to be at the hospital by 6am. They didn't say exactly what time her surgery would be so we're just kind of playing it by ear. She'll be in the PICU the whole time. The cardiologist and surgeon are meeting with the Electrophysiologist today to go over her ECHO and decide whether to go ahead with a pacemaker or not. One parent can stay in the room overnight with her, so we've reserved a room at the "clubhouse" (which is like a hotel room they say) to use for showering or whatever. The surgery itself should only take an hour. They'll give us updates throughout and as soon as they move her to the PICU we should be allowed to go see her! I think that's all for now! Thank you all for Praying!!
Friday, January 17, 2014
Surgery date
Surgery date is Wednesday, January 29th. They'll be putting on a Pulmonary Artery band and closing the PDA. They may or may not put in pacing wires. The surgeon's going to talk to the team about it some more. It sounds they are planning on having to adjust the Pulmonary band a few times and since we don't need the pacing wires right now, they could just put them in then if they needed to. That's all we know for now! Don't have a time yet.
Friday, January 10, 2014
Plans Change.....
At least in our house they do!!
After Susannah's cardiologist visit in December we were waiting for a phone call to schedule a surgery date to have her PDA closed. Fairly simplistic procedure with possibly an overnight stay.
Last Thursday, I got a phone call from the cardiologist saying after he had met with the heart team and surgeons at the hospital, they were recommending doing a Pulmonary Artery Band (PAB) along with closing the PDA. Many questions ensued and a meeting put in place for this past Wednesday (which was the day of our regular appointment).
After almost a week of research, questions, pondering, praying, etc, the decision has been made to go ahead and have the PDA closed and the PA band done at the same time. We have a surgical consult schedule for late next week and will get to meet the surgeon.
That's the short version. :)
More explanation: Susannah has developed a leaky tricuspid valve and apparently it is concerning enough to the surgeons that they are recommending the Pulmonary Artery band to "train" her "left" ventricle to become stronger so that in a few months to a few years we will have the option to do a Double Switch Operation (DSO) vs. going straight to a heart transplant.
From what I have found from research and asking questions, etc, the leaky tricuspid valve is a significant indicator that the right ventricle is not doing as well as we would have hoped. Continuing on like this would mean at some point the right ventricle will most likely fail and it would be sooner rather than later, which would then put us at heart transplant. If we do the PA band and it works, we would have the option of doing a DSO. The PA band is found to work better the younger a person is when it is put in. It was at three months that they told us Susannah's valve was mild to moderately leaking, so in some ways I feel as if we're "behind" on the PA band. Some people say the optimum time for doing the DSO is 2-3 years old. It is not done on adults and some say the person has to be younger than 15. It will continue to be a wait and see approach and a careful analysis and watching from the cardiologist and surgeons. The "left" ventricle would have to be "trained" sufficiently before doing a DSO and I think it's wait and see how long that takes for Susannah. It sounds like everyone's different in how their heart responds and works. We're hoping that getting the PDA closed will help a significant amount, although the cardiologist didn't sound too sure that it would be enough, to help relieve some of the workload of Susannah's "right" ventricle. He also said having the PA band done may help the right ventricle as well because it would expand the Left ventricle and (in my words): push against the right side and help support it, thereby helping it be more efficient.
In my opinion it sounds like a lot of it is a guessing game as to what may or may not help, it depends on how Susannah's heart responds, but overall, we agree with the cardiologist and surgeons that this is a reasonable approach and the best decision regarding future options. (They also might go ahead and put in pacing wires for a pacemaker for when she needs one.)
Wednesday's regular stuff update: Susannah was in heart block again this whole visit. She did not gain any weight from three weeks ago - which greatly concerns him. He increased her Enalapril and increased her calories. He talked about the possibility of tube feeding - ick! I'm praying that after her surgery she'll really pick up eating. She acts like she could care less about eating. It doesn't seem that she's tiring out, she just quits and doesn't care, holds her mouth shut and flat out refuses! :)
Additional links and info (from an email I sent my Dad):
Susannah has Congenitally corrected transposition of the great arteries (also called L-TGA, or Levo-TGA) . It's different than Transposition of the great arteries (also known as D-TGA, or dextro-TGA). She also has Dextrocardia, which isn't a problem other than the idetifying right from left. She also has complete heart block, which can be caused from damage to the AV node during heart surgeries. She also has a PDA(patent ductus arteriosus) that has gotten larger, and she also has developed a Leaky Tricuspid Valve.
After Susannah's cardiologist visit in December we were waiting for a phone call to schedule a surgery date to have her PDA closed. Fairly simplistic procedure with possibly an overnight stay.
Last Thursday, I got a phone call from the cardiologist saying after he had met with the heart team and surgeons at the hospital, they were recommending doing a Pulmonary Artery Band (PAB) along with closing the PDA. Many questions ensued and a meeting put in place for this past Wednesday (which was the day of our regular appointment).
After almost a week of research, questions, pondering, praying, etc, the decision has been made to go ahead and have the PDA closed and the PA band done at the same time. We have a surgical consult schedule for late next week and will get to meet the surgeon.
That's the short version. :)
More explanation: Susannah has developed a leaky tricuspid valve and apparently it is concerning enough to the surgeons that they are recommending the Pulmonary Artery band to "train" her "left" ventricle to become stronger so that in a few months to a few years we will have the option to do a Double Switch Operation (DSO) vs. going straight to a heart transplant.
From what I have found from research and asking questions, etc, the leaky tricuspid valve is a significant indicator that the right ventricle is not doing as well as we would have hoped. Continuing on like this would mean at some point the right ventricle will most likely fail and it would be sooner rather than later, which would then put us at heart transplant. If we do the PA band and it works, we would have the option of doing a DSO. The PA band is found to work better the younger a person is when it is put in. It was at three months that they told us Susannah's valve was mild to moderately leaking, so in some ways I feel as if we're "behind" on the PA band. Some people say the optimum time for doing the DSO is 2-3 years old. It is not done on adults and some say the person has to be younger than 15. It will continue to be a wait and see approach and a careful analysis and watching from the cardiologist and surgeons. The "left" ventricle would have to be "trained" sufficiently before doing a DSO and I think it's wait and see how long that takes for Susannah. It sounds like everyone's different in how their heart responds and works. We're hoping that getting the PDA closed will help a significant amount, although the cardiologist didn't sound too sure that it would be enough, to help relieve some of the workload of Susannah's "right" ventricle. He also said having the PA band done may help the right ventricle as well because it would expand the Left ventricle and (in my words): push against the right side and help support it, thereby helping it be more efficient.
In my opinion it sounds like a lot of it is a guessing game as to what may or may not help, it depends on how Susannah's heart responds, but overall, we agree with the cardiologist and surgeons that this is a reasonable approach and the best decision regarding future options. (They also might go ahead and put in pacing wires for a pacemaker for when she needs one.)
Wednesday's regular stuff update: Susannah was in heart block again this whole visit. She did not gain any weight from three weeks ago - which greatly concerns him. He increased her Enalapril and increased her calories. He talked about the possibility of tube feeding - ick! I'm praying that after her surgery she'll really pick up eating. She acts like she could care less about eating. It doesn't seem that she's tiring out, she just quits and doesn't care, holds her mouth shut and flat out refuses! :)
Additional links and info (from an email I sent my Dad):
Susannah has Congenitally corrected transposition of the great arteries (also called L-TGA, or Levo-TGA) . It's different than Transposition of the great arteries (also known as D-TGA, or dextro-TGA). She also has Dextrocardia, which isn't a problem other than the idetifying right from left. She also has complete heart block, which can be caused from damage to the AV node during heart surgeries. She also has a PDA(patent ductus arteriosus) that has gotten larger, and she also has developed a Leaky Tricuspid Valve.
They're talking do a PAB (Pulmonary artery band) to increase the
work load of the "left" ventricle to "train" it for the option of
doing a double switch operation (DSO) at some point.
These were some different articles and research information that I found that might make it more clear and be helpful.???... I put the year they were published beside them.
http://www.ncbi.nlm.nih.gov/pubmed/23820627 (2013)
http://www.ncbi.nlm.nih.gov/pubmed/12658191 (2003)
http://www.ncbi.nlm.nih.gov/pubmed/9755003 (1998)
http://eurheartj.oxfordjournals.org/content/18/9/1470 (1997)
http://ejcts.oxfordjournals.org/content/early/2012/05/02/ejcts.ezs118.full (2012)
http://en.wikipedia.org/wiki/Levo-Transposition_of_the_great_arteries
http://www.chop.edu/service/cardiac-center/heart-conditions/congenitally-corrected-transposition-of-the-great-arteries.html#treatment
"Double switch operation. Surgeons create a conduit to shunt the blood from one side of the heart to the other. The heart's major arteries are also detached and reconnected. This corrects the circulation so that the heart's left side serves the body and the right side serves the lungs. This is a very complex operation and is usually performed in infants and children. The double switch procedure is very rarely used in adults."
http://www.achaheart.org/resources/for-patients/health-information/cctga.aspx
How common is CCTGA?
CCTGA is a rare heart defect. 0.5%-1% of all those with heart defects are estimated to have CCTGA. This means there are about 5,000 – 10,000 people in the United States with CCTGA. These are rough estimates based on birth rates.
Why a leaky tricuspid valve is a problem
People with CCTGA often develop leakage in their tricuspid valve. In CCTGA, this valve is located between the atria and the ventricle on the left side of the heart. This valve has to stay shut against the heart's strongest push out to the body. In a normal heart, this is the location of the mitral valve. The tricuspid valve is not designed for this additional workload. In addition, many people with CCTGA also have abnormalities in this tricuspid valve. This also makes this valve more prone to leakage. Over time, tricuspid valve leakage ("insufficiency") can grow worse. There are two possible reasons why this might occur. One is the excess workload. The other is that the ventricle itself is stretching and weakening. This stretching can cause the valve to leak. These two reasons can be connected, since too much workload can cause the ventricle to stretch and weaken.
In some people with CCTGA, replacement of the tricuspid valve is recommended. When done early, replacing this valve may improve symptoms and protect or restore heart function. However, valve replacement can only be done if the heart function is only mildly weakened. f the systemic right ventricle is too weak, valve replacement is no longer an option. When done late, tricuspid valve replacement has been linked to high mortality. Valve replacement in CCTGA should only be done at centers that specialize in ACHD surgery.
What are the long-term outcomes of the double-switch procedure?
The oldest people to have undergone a double-switch procedure are now in their twenties. This means we do not yet know what the long-term outcomes will be. Short-term results are encouraging. If you had a double-switch procedure as a child, you no longer have a systemic right ventricle. Many problems discussed in this section will not apply to your anatomy. However, you still are prone to the electrical problems discussed below. Surgery cannot repair the heart’s "wiring". The surgery itself may also cause additional problems. Surgical scarring can cause future rhythm problems. Conduits may become blocked and need re-operation. It is important to remember that the double-switch is not a "cure" for CCTGA. Everyone born with CCTGA should continue to receive regular care at a specialized adult congenital heart clinic.
http://www.achaheart.org/Portals/0/pdf/Library%20Education/CCTGA.pdf
These were some different articles and research information that I found that might make it more clear and be helpful.???... I put the year they were published beside them.
http://www.ncbi.nlm.nih.gov/pubmed/23820627 (2013)
http://www.ncbi.nlm.nih.gov/pubmed/12658191 (2003)
http://www.ncbi.nlm.nih.gov/pubmed/9755003 (1998)
http://eurheartj.oxfordjournals.org/content/18/9/1470 (1997)
http://ejcts.oxfordjournals.org/content/early/2012/05/02/ejcts.ezs118.full (2012)
http://en.wikipedia.org/wiki/Levo-Transposition_of_the_great_arteries
http://www.chop.edu/service/cardiac-center/heart-conditions/congenitally-corrected-transposition-of-the-great-arteries.html#treatment
"Double switch operation. Surgeons create a conduit to shunt the blood from one side of the heart to the other. The heart's major arteries are also detached and reconnected. This corrects the circulation so that the heart's left side serves the body and the right side serves the lungs. This is a very complex operation and is usually performed in infants and children. The double switch procedure is very rarely used in adults."
http://www.achaheart.org/resources/for-patients/health-information/cctga.aspx
How common is CCTGA?
CCTGA is a rare heart defect. 0.5%-1% of all those with heart defects are estimated to have CCTGA. This means there are about 5,000 – 10,000 people in the United States with CCTGA. These are rough estimates based on birth rates.
Why a leaky tricuspid valve is a problem
People with CCTGA often develop leakage in their tricuspid valve. In CCTGA, this valve is located between the atria and the ventricle on the left side of the heart. This valve has to stay shut against the heart's strongest push out to the body. In a normal heart, this is the location of the mitral valve. The tricuspid valve is not designed for this additional workload. In addition, many people with CCTGA also have abnormalities in this tricuspid valve. This also makes this valve more prone to leakage. Over time, tricuspid valve leakage ("insufficiency") can grow worse. There are two possible reasons why this might occur. One is the excess workload. The other is that the ventricle itself is stretching and weakening. This stretching can cause the valve to leak. These two reasons can be connected, since too much workload can cause the ventricle to stretch and weaken.
In some people with CCTGA, replacement of the tricuspid valve is recommended. When done early, replacing this valve may improve symptoms and protect or restore heart function. However, valve replacement can only be done if the heart function is only mildly weakened. f the systemic right ventricle is too weak, valve replacement is no longer an option. When done late, tricuspid valve replacement has been linked to high mortality. Valve replacement in CCTGA should only be done at centers that specialize in ACHD surgery.
What are the long-term outcomes of the double-switch procedure?
The oldest people to have undergone a double-switch procedure are now in their twenties. This means we do not yet know what the long-term outcomes will be. Short-term results are encouraging. If you had a double-switch procedure as a child, you no longer have a systemic right ventricle. Many problems discussed in this section will not apply to your anatomy. However, you still are prone to the electrical problems discussed below. Surgery cannot repair the heart’s "wiring". The surgery itself may also cause additional problems. Surgical scarring can cause future rhythm problems. Conduits may become blocked and need re-operation. It is important to remember that the double-switch is not a "cure" for CCTGA. Everyone born with CCTGA should continue to receive regular care at a specialized adult congenital heart clinic.
http://www.achaheart.org/Portals/0/pdf/Library%20Education/CCTGA.pdf
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