We arrived at our hotel at 3:15 and lugged all our stuff inside. Dan and Ava are taking a nap and Drew is watching a movie. Our hotel has free wi-fi so here I am on the internet. We've got to figure out a plan for dinner and then we just relax until tomorrow morning.
We have to be at Stanford at 7:30 tomorrow morning for pre-op. This will involve an EKG, echo, chest x-ray and blood work. Then we will meet one of the physician assistants, a member of the anesthesia team and a child life specialist. We also made an appointment for a consultation with Dr. Hanley, since we still haven't actually met him yet. The Packet says to plan for at least 6-8 hours and to bring toys, books and snacks. There is also a tour of the CVICU we are going to try to make at 1 pm. Drew will not be admitted to the hospital tomorrow. We will find out what time his surgery is scheduled and when to be back on Friday.
Pray it all goes smoothly and I will update you all tomorrow.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Wednesday, May 21, 2008
Sunday, May 18, 2008
Overwhelmed
We have been overwhelmed with love and support from our friends and family this week.
My friend Kate collected encouraging messages from people in our address book and made them into a beautiful album we can take with us to the hospital. I couldn't stop myself and read most of it already. It is so sweet and I love it! Many of you reading sent messages, so thank you for loving us!
On Thursday at our last life group meeting before we leave, my friend who works as a Child Life Specialist at the hospital brought us a cardiac prep book they use for kids having heart surgery. It follows the story of a little boy having heart surgery from the time he checks into the hospital until he is discharged. It has real pictures and is a great tool for preparing Drew. She also got him a special dinosaur pillowcase to use at the hospital and a dinosaur pillow in the shape of a heart to use as counter pressure on his incision when he needs to cough after surgery. AND she got us a donation from the Children's Heart Fund to go towards our expenses while we are gone.
Then, I got an email from Leslie, one of my Alpha Phi sorority sisters. She had contacted 15 other sisters, some of whom I have not seen or spoken with since graduation, and they all contributed towards a financial gift to help with our hotel for the first few nights. We are so thankful!
Today we had not planned on going to church, in order to keep both kids out of the nursery and away from germs. But, they had planned to show a slide show of Drew and pray for us before we leave, so we just went for the beginning and kept the kids with us. It was wonderful. Our life group and close friends came to the front of the church and prayed for our family. And they presented us with a gift basket full of treats for Dan and me, a backpack of quiet games, toys, activities and snacks for Drew, a bag of fun things for Ava to do, and a scrapbook of cards that the kids from church made for Drew. We are truly blessed to have such wonderful people surrounding us. Thank you.
Needless to say I was brought to tears more than once this week because of the kindness of other people. Even though we are preparing for a very hard situation and I know there will be difficult days ahead, I do feel calm, at peace, and safe. I attribute this to the power of God and to the amazing people in our lives who are covering us with love and prayers.
Gifts
When we got home from church and put Ava to bed Dan and I sat down to tell Drew about surgery. I made him a calendar to help him understand when everything is going to happen and I started by showing him the calendar. I used stickers so that he can identify each day. Surprisingly, he didn't seem concerned at all. Even with the three trips to the hospital in the next five days. I asked him to explain the calendar to me and he did. Then we used the cardiac surgery prep book from Siri and went through the entire story. When there was something familiar, like the pulse ox and blood pressure cuffs, we pointed it out. We talked about the hospital bracelet, the special pajamas, the hospital bed, the IV, riding the bed into the operating room and of course all the things you can do at the hospital: play video games, watch movies, play with toys, read books, etc. He really took it well and seems to understand what is going to happen. He asked to read the book again, and we did, and that was that. I expect to be reading that book & some others, playing with his doctor kit and showing him pictures from when he was a baby a lot this week. I hope that he continues to be unconcerned and that we have a smooth week.
Drew's Calendar
My friend Kate collected encouraging messages from people in our address book and made them into a beautiful album we can take with us to the hospital. I couldn't stop myself and read most of it already. It is so sweet and I love it! Many of you reading sent messages, so thank you for loving us!
On Thursday at our last life group meeting before we leave, my friend who works as a Child Life Specialist at the hospital brought us a cardiac prep book they use for kids having heart surgery. It follows the story of a little boy having heart surgery from the time he checks into the hospital until he is discharged. It has real pictures and is a great tool for preparing Drew. She also got him a special dinosaur pillowcase to use at the hospital and a dinosaur pillow in the shape of a heart to use as counter pressure on his incision when he needs to cough after surgery. AND she got us a donation from the Children's Heart Fund to go towards our expenses while we are gone.
Then, I got an email from Leslie, one of my Alpha Phi sorority sisters. She had contacted 15 other sisters, some of whom I have not seen or spoken with since graduation, and they all contributed towards a financial gift to help with our hotel for the first few nights. We are so thankful!
Today we had not planned on going to church, in order to keep both kids out of the nursery and away from germs. But, they had planned to show a slide show of Drew and pray for us before we leave, so we just went for the beginning and kept the kids with us. It was wonderful. Our life group and close friends came to the front of the church and prayed for our family. And they presented us with a gift basket full of treats for Dan and me, a backpack of quiet games, toys, activities and snacks for Drew, a bag of fun things for Ava to do, and a scrapbook of cards that the kids from church made for Drew. We are truly blessed to have such wonderful people surrounding us. Thank you.
Needless to say I was brought to tears more than once this week because of the kindness of other people. Even though we are preparing for a very hard situation and I know there will be difficult days ahead, I do feel calm, at peace, and safe. I attribute this to the power of God and to the amazing people in our lives who are covering us with love and prayers.
GiftsWhen we got home from church and put Ava to bed Dan and I sat down to tell Drew about surgery. I made him a calendar to help him understand when everything is going to happen and I started by showing him the calendar. I used stickers so that he can identify each day. Surprisingly, he didn't seem concerned at all. Even with the three trips to the hospital in the next five days. I asked him to explain the calendar to me and he did. Then we used the cardiac surgery prep book from Siri and went through the entire story. When there was something familiar, like the pulse ox and blood pressure cuffs, we pointed it out. We talked about the hospital bracelet, the special pajamas, the hospital bed, the IV, riding the bed into the operating room and of course all the things you can do at the hospital: play video games, watch movies, play with toys, read books, etc. He really took it well and seems to understand what is going to happen. He asked to read the book again, and we did, and that was that. I expect to be reading that book & some others, playing with his doctor kit and showing him pictures from when he was a baby a lot this week. I hope that he continues to be unconcerned and that we have a smooth week.
Drew's CalendarTuesday, February 12, 2008
Consult with UCD
I'm sorry I didn't post sooner, but I wasn't exactly sure what to say. We did meet with the surgeon at UCD yesterday and we learned a lot. When we were told that Drew could have a two-ventricle repair by our cardiologist we thought it meant that they would undo what they've done and reconnect his heart to be just like a normal heart and he wouldn't need anymore surgeries.
Well, that is not what they meant. Or at least, not what Dr. Raff would recommend. It gets a bit complicated unless you know a lot about the anatomy of Drew's heart, but basically they would leave everything they've done, place a patch so that Drew would have two separate ventricles and place an external conduit from his right ventricle to his pulmonary artery. So his blood flow would follow a normal pattern, but his physiology would definitely not be normal. And conduits don't last forever and need to be replaced. Dr. Raff was guessing that a Hancock conduit would last about 15 years before it needed to be replaced. Risk of this surgery was estimated at 2-5% (of any complication from infection to death). Possible complications with this anatomy include stenosis and arrythmias, with Dr. Raff predicting we'd eventually have problems with arrythmias. When I asked him how they treat that, he said sometimes with medication, sometimes with a pacemaker, and sometimes with a transplant.
He presented us with the details of the other surgical option, which would be a Fontan. Risk of the surgery is lower, at about 1-2%. These surgeries typically last about 20 years and then a pacemaker or a transplant is needed. I told him I was scared of the Fontan because I knew that kids eventually need transplants and I just learned that transplants last about 10 years and they rarely re-transplant. He said that his bigger concerns were the possibility of developing PLE or plastic bronchitis. PLE I have heard of due to the unfortunate situation of a heart buddy developing the condition. I haven't heard of plastic bronchitis and I don't think I'm going to look it up. Also, he said with a Fontan Drew's exercise and endurance would be limited.
So we were a bit discouraged to learn that this was not the miracle fix we thought it would be, and that there will definitely be more surgeries in our future. It was also just reinforced that we don't know what the future holds as far Drew's heart is concerned. Transplant seems to be a possibility no matter which path we choose, and I don't like that. But it was still a good meeting, we learned a lot and got one extra opinion under our belts. I am very anxious to talk to Dr. Hanley from Stanford and hear what he has to say. We should hear from him tomorrow evening or Thursday morning. After that I want to meet with Dr. Azakie from UCSF because I haven't had a chance to talk to him myself yet. And then we'll make a decision about where to go from here.
Well, that is not what they meant. Or at least, not what Dr. Raff would recommend. It gets a bit complicated unless you know a lot about the anatomy of Drew's heart, but basically they would leave everything they've done, place a patch so that Drew would have two separate ventricles and place an external conduit from his right ventricle to his pulmonary artery. So his blood flow would follow a normal pattern, but his physiology would definitely not be normal. And conduits don't last forever and need to be replaced. Dr. Raff was guessing that a Hancock conduit would last about 15 years before it needed to be replaced. Risk of this surgery was estimated at 2-5% (of any complication from infection to death). Possible complications with this anatomy include stenosis and arrythmias, with Dr. Raff predicting we'd eventually have problems with arrythmias. When I asked him how they treat that, he said sometimes with medication, sometimes with a pacemaker, and sometimes with a transplant.
He presented us with the details of the other surgical option, which would be a Fontan. Risk of the surgery is lower, at about 1-2%. These surgeries typically last about 20 years and then a pacemaker or a transplant is needed. I told him I was scared of the Fontan because I knew that kids eventually need transplants and I just learned that transplants last about 10 years and they rarely re-transplant. He said that his bigger concerns were the possibility of developing PLE or plastic bronchitis. PLE I have heard of due to the unfortunate situation of a heart buddy developing the condition. I haven't heard of plastic bronchitis and I don't think I'm going to look it up. Also, he said with a Fontan Drew's exercise and endurance would be limited.
So we were a bit discouraged to learn that this was not the miracle fix we thought it would be, and that there will definitely be more surgeries in our future. It was also just reinforced that we don't know what the future holds as far Drew's heart is concerned. Transplant seems to be a possibility no matter which path we choose, and I don't like that. But it was still a good meeting, we learned a lot and got one extra opinion under our belts. I am very anxious to talk to Dr. Hanley from Stanford and hear what he has to say. We should hear from him tomorrow evening or Thursday morning. After that I want to meet with Dr. Azakie from UCSF because I haven't had a chance to talk to him myself yet. And then we'll make a decision about where to go from here.
Tuesday, January 29, 2008
Confusion
The teams from UCSF and UCD conferenced today. I got a call around 10:30 from our cardiologist. The consensus seems to be that Drew can and should have a two ventricle repair! This is wonderful news, what we've been hoping and praying for for the past four years. You'd think we'd be jumping for joy, but things are complicated. We are confused and are still seeking out second opinions. Drew's records are still being collected to send to Dr. Hanley and should be sent out by next Monday. We have also made an appointment for a consultation with Dr. Raf, a surgeon at UCD, on February 11.
The concern is that his surgeon at UCSF has had two chances to do a repair on Drew and hasn't done it yet. Which makes us wonder why he hasn't done it, and if he would do it this time. It raises a lot of issues for us. If all the doctors say the same thing this time, how do we choose? If the two new doctors say that they could have done a repair as an infant, does that mean we should leave the hospital, surgeons, nurses, and staff that we've come to know and be comfortable with? Will insurance pay if we go to Stanford? If Dr. Raf can do the surgery at UCD, why did we get transferred to UCSF when Drew was an infant? Why wasn't he our surgeon to begin with? As you can see, there are more questions than answers and we are just trying to figure things out right now. As usual there is more WAITING. I hate waiting. Perhaps that is the lesson here. Learn how to wait.
Anway, Drew stayed home sick from preschool today, but now I am wondering if he is really sick. He's a little sniffly, a little more whiny, has had an occasional low fever (does 99.5 even count as a fever?) and that's it so far. I guess we're better safe than sorry, but staying cooped up in the house with the kids in this weather is no fun. We've seriously been watching movies all day today!
Drew's birthday is coming up in less than two weeks and I still have no plans for a party. I have a great idea for a party, but the place is not calling me back, and is seeming like it isn't meant to be. I might have to throw something together at the last minute.
The concern is that his surgeon at UCSF has had two chances to do a repair on Drew and hasn't done it yet. Which makes us wonder why he hasn't done it, and if he would do it this time. It raises a lot of issues for us. If all the doctors say the same thing this time, how do we choose? If the two new doctors say that they could have done a repair as an infant, does that mean we should leave the hospital, surgeons, nurses, and staff that we've come to know and be comfortable with? Will insurance pay if we go to Stanford? If Dr. Raf can do the surgery at UCD, why did we get transferred to UCSF when Drew was an infant? Why wasn't he our surgeon to begin with? As you can see, there are more questions than answers and we are just trying to figure things out right now. As usual there is more WAITING. I hate waiting. Perhaps that is the lesson here. Learn how to wait.
Anway, Drew stayed home sick from preschool today, but now I am wondering if he is really sick. He's a little sniffly, a little more whiny, has had an occasional low fever (does 99.5 even count as a fever?) and that's it so far. I guess we're better safe than sorry, but staying cooped up in the house with the kids in this weather is no fun. We've seriously been watching movies all day today!
Drew's birthday is coming up in less than two weeks and I still have no plans for a party. I have a great idea for a party, but the place is not calling me back, and is seeming like it isn't meant to be. I might have to throw something together at the last minute.
Monday, August 13, 2007
Cardiology Check-up
Drew saw Dr. Parrish this morning. His O2 sats were 85%, the highest I've ever seen them, EVER. The Dr. said this could be an indication that the medication is working, but its not proof. The only way to really know is through cardiac catheterization. It's been three months since his last one. Here's the plan:
1. Increase the sildenafil to 3 ml three times a day.
2. In one month I will call Dr. Parrish and if we haven't seen any adverse side effects (dizziness, headaches, lethargy) we will increase to 3.5 ml three times a day.
3. In two months we will see the Dr. again and we will likely increase to 4 ml (the optimum dosage for his weight) three times a day. That would put us into October and we'd like to give the medicine a chance to work at the optimum dosage before we do the cath.
4. We will likely schedule the heart cath for January.
5. If it looks good we will schedule surgery for spring. If not, I guess we continue on the medication for a while longer and repeat the cath.
1. Increase the sildenafil to 3 ml three times a day.
2. In one month I will call Dr. Parrish and if we haven't seen any adverse side effects (dizziness, headaches, lethargy) we will increase to 3.5 ml three times a day.
3. In two months we will see the Dr. again and we will likely increase to 4 ml (the optimum dosage for his weight) three times a day. That would put us into October and we'd like to give the medicine a chance to work at the optimum dosage before we do the cath.
4. We will likely schedule the heart cath for January.
5. If it looks good we will schedule surgery for spring. If not, I guess we continue on the medication for a while longer and repeat the cath.
Wednesday, March 14, 2007
Drew's Cardiology Appointment
Today we had an appointment with our pediatric cardiologist, Dr. Parrish. Drew had an EKG and an echo and he did great. He is such a brave boy and listens so well to the Doctors, nurses and his parents. He laid still and watched sesame street for 45 minutes during the echo and only occasionally complained that it hurt. I think it was more uncomfortable with the wand pressing on his belly and ribcage than painful, but he doesn't know that word. The worst part was taking off the 15 "stickers" after the EKG was over. He also got to choose a surprise when we were done and he came home with a tiny little plastic alligator.
The results were encouraging: his heart is functioning well and he is doing great. For a split second, I was waiting for them to say "and nevermind about the surgery." But of course they didn't say that. It is actually a good thing for them to do surgery while he is healthy and his body is not in distress. The other good news is that Dr. Parrish thinks that his heart looks so good that it is "tempting" to do a complete repair instead of the Fontan that is typically the next step after the two surgeries Drew has already had (a Norwood and a Glenn). That means they would restore his heart to a normal circulation pattern. This would mean a better long term prognosis, as a Fontan circulation increases the pressures in the heart and lungs and these kids usually need some kind of additional procedures once they reach adulthood.
So that would be awesome! But I'm trying not to get my hopes up, because we don't really know which surgery they will do or when until after Drew's heart catheterization. We will be scheduling the cath at UCSF hopefully early in April.
The results were encouraging: his heart is functioning well and he is doing great. For a split second, I was waiting for them to say "and nevermind about the surgery." But of course they didn't say that. It is actually a good thing for them to do surgery while he is healthy and his body is not in distress. The other good news is that Dr. Parrish thinks that his heart looks so good that it is "tempting" to do a complete repair instead of the Fontan that is typically the next step after the two surgeries Drew has already had (a Norwood and a Glenn). That means they would restore his heart to a normal circulation pattern. This would mean a better long term prognosis, as a Fontan circulation increases the pressures in the heart and lungs and these kids usually need some kind of additional procedures once they reach adulthood.
So that would be awesome! But I'm trying not to get my hopes up, because we don't really know which surgery they will do or when until after Drew's heart catheterization. We will be scheduling the cath at UCSF hopefully early in April.
Normal Heart
Interrupted Aortic Arch
Saturday, February 24, 2007
Pediatric Heart Surgery Reunion
Today we went to a Pediatric Heart Surgery Reunion at Sutter Memorial Hospital in Sacramento. It was really fun. They had a lot of activities for the kids and lots of free food for everyone. We ate pizza, Drew decorated a heart cookie and Francie Dillon (the children’s entertainer) played her guitar and sang for the kids. There was also basketball, fishing for prizes, crafts, the Kings dancers and Dinger from the River Cats. It was nice to talk to the other families whose kids have had heart surgery there. Except we felt like imposters because our heart surgeries were at UCSF.
It’s not like we crashed the party or anything. We were invited! But I think we were the only family who didn’t have surgery there and I kind of felt like I should keep it a secret. Which became difficult when Francie invited Drew up with her to sing his favorite song. She wanted to know if he had surgery there. I said no. She asked, “Oh, it was his sister?” I said “Um. No. It’s complicated.” Then as soon as they were done singing Rudolph (it is his favorite) we were out of there! I didn’t want to be caught!
It’s not like we crashed the party or anything. We were invited! But I think we were the only family who didn’t have surgery there and I kind of felt like I should keep it a secret. Which became difficult when Francie invited Drew up with her to sing his favorite song. She wanted to know if he had surgery there. I said no. She asked, “Oh, it was his sister?” I said “Um. No. It’s complicated.” Then as soon as they were done singing Rudolph (it is his favorite) we were out of there! I didn’t want to be caught!
Drew with his yummy heart cookie
Dinger-The Rivercats mascot-doing the hokey pokey
Francie Dillon and Drew singing Rudolph
Friday, February 16, 2007
Magic Heart Day
February 16th, 2004 will always be a special day for our family. For my husband and me it was the best and worst day of our lives. It was the best day because it was the day the surgeons at UCSF saved our one-week old son’s life by doing open heart surgery. It was the worst day because it was the day we had to put his life in their hands and hope & pray for the best. It was a day filled with worry and anxiety and fear of the unknown. It was a day of hope and prayer and being surrounded by friends and family.
Every year I have a difficult time around this anniversary. This year was no different. It started off innocently enough. I thought back to what was happening three years ago and thought how amazing it is that we are where we are know. Drew is a happy, mostly healthy, sweet, loving, active little boy. But then all of a sudden all the feelings from that time come back to me. How scared we were. How out of control it felt. How shocking it was to hear the day after he was born that he wasn’t a perfectly healthy baby. That we wouldn’t be bringing him home anytime soon. That our tiny little baby was going to be frozen, cut open, put on a heart lung machine, and sewn up again. That he would have a machine to breathe for him, have all kinds of tubes and IVs and blood draws, that he would be kept in the pediatric cardiac ICU for many weeks.
As I look back on this time it is always with mixed emotions. We are extremely grateful that the surgeons were able to save his life. That he was able to come home from the hospital with us. We have met parents in the hospital that were not so lucky. We are thankful for all the good that has come out of this situation, for the wonderful friends and family we had to support us during this devastating time. But we also mourn the loss of a healthy child. It’s not fair that he has to have so many blood tests and Dr. appointments. I don’t want to have to endure another open-heart surgery. I don’t want to hear him tell me that it hurts, that he wants to go home and there will be nothing I can do to fix it. How many parents can really say that there was a time when they didn’t know if their child would live or die? We have wondered that too many times already. But he is still with us! And we are so grateful for the gift he is to our family.
I would just like to thank everyone in our lives who has been a support to us. We couldn’t have made it this far without you. We thank you for standing by us in the good times and bad, for letting us cry when we need to, and reminding us what a miracle Drew is when we need to hear that. I hope that one day I will be able to look back at Magic Heart Day with mostly gratitude and thanksgiving and that there will be less sadness with each passing year.
Here are some of my favorite pictures from Drew's first three years. Happy Birthday Drew!
Every year I have a difficult time around this anniversary. This year was no different. It started off innocently enough. I thought back to what was happening three years ago and thought how amazing it is that we are where we are know. Drew is a happy, mostly healthy, sweet, loving, active little boy. But then all of a sudden all the feelings from that time come back to me. How scared we were. How out of control it felt. How shocking it was to hear the day after he was born that he wasn’t a perfectly healthy baby. That we wouldn’t be bringing him home anytime soon. That our tiny little baby was going to be frozen, cut open, put on a heart lung machine, and sewn up again. That he would have a machine to breathe for him, have all kinds of tubes and IVs and blood draws, that he would be kept in the pediatric cardiac ICU for many weeks.
As I look back on this time it is always with mixed emotions. We are extremely grateful that the surgeons were able to save his life. That he was able to come home from the hospital with us. We have met parents in the hospital that were not so lucky. We are thankful for all the good that has come out of this situation, for the wonderful friends and family we had to support us during this devastating time. But we also mourn the loss of a healthy child. It’s not fair that he has to have so many blood tests and Dr. appointments. I don’t want to have to endure another open-heart surgery. I don’t want to hear him tell me that it hurts, that he wants to go home and there will be nothing I can do to fix it. How many parents can really say that there was a time when they didn’t know if their child would live or die? We have wondered that too many times already. But he is still with us! And we are so grateful for the gift he is to our family.
I would just like to thank everyone in our lives who has been a support to us. We couldn’t have made it this far without you. We thank you for standing by us in the good times and bad, for letting us cry when we need to, and reminding us what a miracle Drew is when we need to hear that. I hope that one day I will be able to look back at Magic Heart Day with mostly gratitude and thanksgiving and that there will be less sadness with each passing year.
Here are some of my favorite pictures from Drew's first three years. Happy Birthday Drew!
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