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! :)
Showing posts with label pacemaker. Show all posts
Showing posts with label pacemaker. Show all posts
Wednesday, January 7, 2015
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
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!!
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