Yesterday was a long day!
First Drew had a dentist appointment at 8:30. I knew he would probably not enjoy having to lay down while people wearing scrubs and gloves hovered over him, and I was right. He is so good though! He didn't like it and he cried (sometimes screamed) through his cleaning, but he did open his mouth when they told him to, held still, etc. When it was time for the exam he did much better, opening his mouth for the dentist to "count" his sparkly teeth. He was handsomely rewarded with a blow up dinosaur toy and dinosaur stickers. The best part of the cleaning is that they were able to get the iron stain off his teeth that turned them gray when he was in the hospital. Now they are bright white again!
We got home from that appointment at 10:15 and headed out to UCSF at about 10:30. Our appointment was at 1:00. So we packed lunches and snacks for the road and Drew was a very good traveler, spending most of the trip watching Veggie Tales and cracking me up with his rendition of the opening song. We got to UCSF right on time and saw a the doctor around 2. The immunologist specializes in kids with 22q and she normally doesn't have a lot of encouraging things to say. But this time she told me she was very impressed with how far Drew's come. He had his developmental assessment in April and Dr. Wara said that he scored about average for his age. She told me that this is much better than most of the kids she sees with 22q and that it is something to be really happy about. She said we can expect him to do as well as any other kid his age in school. I did ask about the funky immunology labs we got at Stanford. She said she could not think of an explanation for those "normal" results and she was very interested to see the labs from this visit. I told her I thought maybe they got his blood mixed up with another kid and she thinks that is quite possible. I'm still hoping it was an immunology miracle and his levels will be high enough that he can have his live virus vaccines, but I don't really think that is the case. We will see her again in four months.
We headed over to the lab and the phlebotomist is really good and always gets blood on the first try. I guess she had an off day though, because it took her two tries this time. Drew did really well, he definitely hated it, but he didn't scream as loud as he did at the dentist and he calmed down quickly. Afterwards I took him across the street to the gift shop where he picked a prize of m&ms. Then we began the drive home from SF in work traffic. UGH. Three hours later we were finally home!
Showing posts with label UCSF. Show all posts
Showing posts with label UCSF. Show all posts
Friday, August 8, 2008
Tuesday, April 8, 2008
Assessment
Drew and I drove out to Palo Alto on Sunday afternoon to stay with Grandma Kathy before his developmental assessment at UCSF on Monday morning. My friend Katie and her cute baby Chloe joined us to keep us company and to help out with accessing the carpool lane on the way home. Thanks guys! We got into PA around 7 and Drew spent some time playing cars and airplanes with grandma. In the morning we left the house by 8:15 and got into the parking lot at UCSF right at 9:30. His appointment lasted more than 3 hours and since he is four now it was different than the previous times he's been assessed.
I had told him we were going to the doctor to play games and puzzles and there wouldn't be any shots or pokes. I also promised I'd stay with him the whole time. The psychiatrist asked him lists of questions (how old are you, do you have any brothers or sisters, i'm thinking of an animal that meows-what is it, what can you tell me about shoes, etc.), had him copy patterns with blocks, did analogies with pictures. Not so exciting for a four-year old to sit and listen for 3 hours! He had one ten minute break in the middle, but that was it! He did really well, but was getting tired and disinterested the last hour. They also did a quick neurology assessment because Drew was part of an MRI study before his first surgery. His reflexes looked good, but his balance isn't great. I'm also concerned about his fine motor skills, so we'll see what the report says.
After the appointment we visited with Tina and Baby Caleb who is recovering from his Glenn at UCSF right now. We had lunch across the street and had a nice visit. I took a quick look around the UCSF Bookstore and found another reason why I feel good about having heart surgery at Stanford. Dr. Hanley wrote the book on Pediatric Cardiac Intensive Care. Seriously.
I was really appreciating Katie and Chloe on the drive home when we got to fly by all the non-carpoolers on the freeway. We still didn't get home til after 5 and I was pretty tired. So was Drew! He fell asleep in the car and then slept until 9 before waking up, eating dinner and watching a movie. He went back to bed around 11.
As for Ava she did great without her pacifier while we were gone. Dan said she went to bed without a peep on Sunday night and did wake up once, but fell back asleep within ten minutes. Then on Monday she took her nap without crying and went to sleep that night without crying. She did wake up once last night and cried for a while so we brought her in bed with us. That will be the next habit we have to break. :) But I am very proud of her, she is doing a pretty good job.
Today I am feeling pretty tired. This morning I worked in the childcare at my mom connection and hung out with 12 two-year olds. That alone would be tiring, but when it was over and I went to pick up Drew he was in the Director's office because he had lost his outside time for not listening to his teachers. I told her about his assessment yesterday and how he was probably pretty tired of sitting still and listening after that and she did say that might explain it. But when I asked if he usually had trouble listening she said it had been getting worse lately. Which makes me sad because my mind automatically goes in two directions. 1. Maybe he knows what's going on surgery-wise, even if it may be subconsciously, and he is acting out because of it. 2. Maybe it's because of his DiGeorge syndrome and his behavior problems are beginning and it will just get worse. Either way, I'm not really sure what to do because he needs to listen to his teachers so I feel like I want to discipline him, but I also feel like he already had his punishment at school by not being able to go outside. I think I will just talk to him about it and work on listening today. I also am feeling a little overwhelmed by sadness. Just thinking about sick kids, kids having heart surgery, kids with cancer, kids with parents that can barely take care of them, it just seems so unjust. And then I think about my boy heading into his third heart surgery and I just don't want to do it. I know it has to be done, but every part of me wants to just run away and pretend like it's not happening. Maybe I need to sit and have a good cry, then pick myself up by bootstraps and get this house into shape. Even though I was only gone for one night, things have really fallen behind.
I had told him we were going to the doctor to play games and puzzles and there wouldn't be any shots or pokes. I also promised I'd stay with him the whole time. The psychiatrist asked him lists of questions (how old are you, do you have any brothers or sisters, i'm thinking of an animal that meows-what is it, what can you tell me about shoes, etc.), had him copy patterns with blocks, did analogies with pictures. Not so exciting for a four-year old to sit and listen for 3 hours! He had one ten minute break in the middle, but that was it! He did really well, but was getting tired and disinterested the last hour. They also did a quick neurology assessment because Drew was part of an MRI study before his first surgery. His reflexes looked good, but his balance isn't great. I'm also concerned about his fine motor skills, so we'll see what the report says.
After the appointment we visited with Tina and Baby Caleb who is recovering from his Glenn at UCSF right now. We had lunch across the street and had a nice visit. I took a quick look around the UCSF Bookstore and found another reason why I feel good about having heart surgery at Stanford. Dr. Hanley wrote the book on Pediatric Cardiac Intensive Care. Seriously.
I was really appreciating Katie and Chloe on the drive home when we got to fly by all the non-carpoolers on the freeway. We still didn't get home til after 5 and I was pretty tired. So was Drew! He fell asleep in the car and then slept until 9 before waking up, eating dinner and watching a movie. He went back to bed around 11.
As for Ava she did great without her pacifier while we were gone. Dan said she went to bed without a peep on Sunday night and did wake up once, but fell back asleep within ten minutes. Then on Monday she took her nap without crying and went to sleep that night without crying. She did wake up once last night and cried for a while so we brought her in bed with us. That will be the next habit we have to break. :) But I am very proud of her, she is doing a pretty good job.
Today I am feeling pretty tired. This morning I worked in the childcare at my mom connection and hung out with 12 two-year olds. That alone would be tiring, but when it was over and I went to pick up Drew he was in the Director's office because he had lost his outside time for not listening to his teachers. I told her about his assessment yesterday and how he was probably pretty tired of sitting still and listening after that and she did say that might explain it. But when I asked if he usually had trouble listening she said it had been getting worse lately. Which makes me sad because my mind automatically goes in two directions. 1. Maybe he knows what's going on surgery-wise, even if it may be subconsciously, and he is acting out because of it. 2. Maybe it's because of his DiGeorge syndrome and his behavior problems are beginning and it will just get worse. Either way, I'm not really sure what to do because he needs to listen to his teachers so I feel like I want to discipline him, but I also feel like he already had his punishment at school by not being able to go outside. I think I will just talk to him about it and work on listening today. I also am feeling a little overwhelmed by sadness. Just thinking about sick kids, kids having heart surgery, kids with cancer, kids with parents that can barely take care of them, it just seems so unjust. And then I think about my boy heading into his third heart surgery and I just don't want to do it. I know it has to be done, but every part of me wants to just run away and pretend like it's not happening. Maybe I need to sit and have a good cry, then pick myself up by bootstraps and get this house into shape. Even though I was only gone for one night, things have really fallen behind.
Tuesday, March 18, 2008
Immunology
Today we drove to San Francisco for Drew's immunology appointment. We left around 7:15 am and didn't get home until almost 3:30 pm. Thank goodness we all went, so we could at least use the carpool lanes that require 3 people per vehicle. The kids were great on the almost 3 hour trip there and we made it just in time for our appointment at 10.
We saw the fellow first and then the "real" doctor. These appointments are not usually very exciting, the real reason we are there is to do blood work and we won't know the results of that right away. We did talk about the big three-his heart, his immune system, and his development. We've got heart surgery coming up (still no word on the date from Stanford) and the doctor thinks we need to worry about that first. OK, I seem to do that pretty easily. They asked if he's had any infections since we saw them last. I think he's had an ear infection and there was the hospitalization in September that ended up being croup. Overall, he's had a very good year as far as sickness goes. She did say that he is severely immunodeficient. The last time we had his T-cells checked was last June and they were 38%. Normal for his age is 55-65%. Typically they don't give the live virus vaccines (MMR and chickenpox) until the kids reach 50%, but she said 45% might be acceptable. I asked how he could have such low T-cells but be still be so healthy and she said it is because he receives "good care." That made me feel good about myself and she said I should absolutely continue in my "germophobic tendencies" until his T-cells are up and she tells me to stop. So I guess I'll keep wiping down the shopping cart and coating the kids in purell every time they touch any surface in public.
They asked if Drew knows his letters yet. And I was proud to say that he does and all the sounds that they make. The doctor said that although lots of DiGeorge kids have trouble in school he seems like he won't have much trouble. I was glad to hear that! She still would like to have a developmental test done to get an idea of where he is at. She said it would be beneficial for us as his parents and for his preschool teachers. She'd like to do it before his surgery though because she said it can take kids up to a year to recover from surgery to really get an accurate developmental assessment. That makes me sad. Even though I'm sure it's true, I don't like to think that it could take him a full year to get over the trauma of surgery. Poor little guy.
Then we had the blood test. I told Drew right before we got to the appointment that he was going to have a blood test afterwards. He seemed ok with it then, but when we got into our room he said "I want Ava to get a shot." I had to tell him it wasn't her turn, but that he would get M&Ms afterward and grandma would buy him a present for being so brave. When we got to the lab waiting room I kept him distracted with his I Spy book. There were a ton of babies waiting to get their blood drawn! I've never seen it so busy there. So there was a lot of waiting, but I used the time to explain everything that was going to happen. First she would pull up his sleeves and look at his arms, and that part wouldn't hurt. Then she would tie a strap around his arm, and that part wouldn't hurt. Then she would put the needle in, and that part would hurt a little bit, but then it would be over and he could have M&Ms. When it was his turn he walked back to the phlebotomist, who is very good at what she does, but not very kid-friendly. He started to get upset, but he calmed himself down with deep breaths and thinking about what grandma would get him. The phlebotomist is so great, she got blood on the first try and she had to collect four vials! While the needle was in his arm and I was asking him what he wanted from grandma he shouted "I want a dinosaur! I want a T-rex!" and it helped to distract him. Once he got down and knew he was safe he said "That part's over!" and was back to his normal happy self.
So, it was a pretty good appointment. This doctor has not always been so positive, so it was nice to hear that she thought he was doing well. We were also able to do labs for his endocrinology appointment on Friday so we can avoid a second blood draw this week. I'm so proud of my brave boy.
We saw the fellow first and then the "real" doctor. These appointments are not usually very exciting, the real reason we are there is to do blood work and we won't know the results of that right away. We did talk about the big three-his heart, his immune system, and his development. We've got heart surgery coming up (still no word on the date from Stanford) and the doctor thinks we need to worry about that first. OK, I seem to do that pretty easily. They asked if he's had any infections since we saw them last. I think he's had an ear infection and there was the hospitalization in September that ended up being croup. Overall, he's had a very good year as far as sickness goes. She did say that he is severely immunodeficient. The last time we had his T-cells checked was last June and they were 38%. Normal for his age is 55-65%. Typically they don't give the live virus vaccines (MMR and chickenpox) until the kids reach 50%, but she said 45% might be acceptable. I asked how he could have such low T-cells but be still be so healthy and she said it is because he receives "good care." That made me feel good about myself and she said I should absolutely continue in my "germophobic tendencies" until his T-cells are up and she tells me to stop. So I guess I'll keep wiping down the shopping cart and coating the kids in purell every time they touch any surface in public.
They asked if Drew knows his letters yet. And I was proud to say that he does and all the sounds that they make. The doctor said that although lots of DiGeorge kids have trouble in school he seems like he won't have much trouble. I was glad to hear that! She still would like to have a developmental test done to get an idea of where he is at. She said it would be beneficial for us as his parents and for his preschool teachers. She'd like to do it before his surgery though because she said it can take kids up to a year to recover from surgery to really get an accurate developmental assessment. That makes me sad. Even though I'm sure it's true, I don't like to think that it could take him a full year to get over the trauma of surgery. Poor little guy.
Then we had the blood test. I told Drew right before we got to the appointment that he was going to have a blood test afterwards. He seemed ok with it then, but when we got into our room he said "I want Ava to get a shot." I had to tell him it wasn't her turn, but that he would get M&Ms afterward and grandma would buy him a present for being so brave. When we got to the lab waiting room I kept him distracted with his I Spy book. There were a ton of babies waiting to get their blood drawn! I've never seen it so busy there. So there was a lot of waiting, but I used the time to explain everything that was going to happen. First she would pull up his sleeves and look at his arms, and that part wouldn't hurt. Then she would tie a strap around his arm, and that part wouldn't hurt. Then she would put the needle in, and that part would hurt a little bit, but then it would be over and he could have M&Ms. When it was his turn he walked back to the phlebotomist, who is very good at what she does, but not very kid-friendly. He started to get upset, but he calmed himself down with deep breaths and thinking about what grandma would get him. The phlebotomist is so great, she got blood on the first try and she had to collect four vials! While the needle was in his arm and I was asking him what he wanted from grandma he shouted "I want a dinosaur! I want a T-rex!" and it helped to distract him. Once he got down and knew he was safe he said "That part's over!" and was back to his normal happy self.
So, it was a pretty good appointment. This doctor has not always been so positive, so it was nice to hear that she thought he was doing well. We were also able to do labs for his endocrinology appointment on Friday so we can avoid a second blood draw this week. I'm so proud of my brave boy.
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.
Friday, January 18, 2008
We're Outta There!
Yay! We were discharged around 5:30 and made it back to Grandma's house by 7:00. Drew woke up around 3:00 and watched a movie and just held some chicken nuggets in his hands, but didn't eat them. He woke up saying his neck hurt and his tummy hurt. Got him some tylenol for the neck and some goldfish for his tummy. He drank a lot of water and was pretty whiny. But he's happily watching yet another dinosaur movie on Grandma's couch now. We plan on staying here tonight and getting some good rest. Then we'll head home in the morning where my mom is waiting to take over caring for us.
Thank you all for checking in on us. We really appreciate all the prayers and support.
Now, I'm off to have a well-deserved beer.
Me and Drew watching a movie when he woke up. He wanted me to "hug him closer."
Just after Drew opened his present for being so brave. He looks excited, doesn't he?
Getting ready to leave the hospital in the wagon
Thank you all for checking in on us. We really appreciate all the prayers and support.
Now, I'm off to have a well-deserved beer.
Me and Drew watching a movie when he woke up. He wanted me to "hug him closer."
Just after Drew opened his present for being so brave. He looks excited, doesn't he?
Getting ready to leave the hospital in the wagon
He's Finally Back!
I don't know about you, but that seemed like a really long 4.5 hours.
My sweet boy is back in his room, sleeping like an angel. I can't tell you how relieved I am to have him back next to me! We talked to the cardiologist who said Drew did well and they got everything they needed to see. He said he got the needle in right away and injected the fentanyl before they inserted the catheter. They had to go through both his groin and his neck to see all the parts of his heart. And even though we're not getting our hopes up yet, he did say he didn't see a reason a repair couldn't be done. The doctor wants to get an echo before we leave and if they can't see well enough with that he'll want an MRI. He wants to get all the info we need to decide which surgery is best. He also said the pressure in his pulmonary artery is lower and that Drew is ready for surgery no matter which one they decide to do. So that's all good news.
Now he has to stay here for 6 hours for observation and he has to keep his legs straight that whole time. We're not even suppose to let him sit up to eat, he can only lift his head. That sounds like it will be difficult so I hope he sleeps most of that time. We have chicken nuggets and goldfish waiting so he has something he loves once he wakes up.
Here's a picture of my little guy resting.
Thanks so much for your thoughts and prayers!
He's in the cath lab
Drew's in the cath lab right now. He was a little trooper this morning, although a little whiny. He didn't want to come to the hospital and he kept asking for a snack. Once we got into our room he did ok with the medical bracelet, leads, thermometer, blood pressure, etc. He didn't want to take his medicine and it tasted yucky. He watched his dinosaur movie on the laptop and got really sleepy from the versed. Then we went to the cath lab.
Things didn't go as well up there. They couldn't get the IV in and we had to listen to him screaming from the hallway as they tried three times. That woke him up so he needed more sedative. They are going to have to start the IV in his groin where they are threading the catheter and then give him the IV sedative. Poor little guy. It was breaking my heart.
But he's in there now and we have the pager. They will page us when they are through, it will probably take about 3 hours. We are going to go get some breakfast and coffee. We'll update when we know more.
Thursday, January 17, 2008
We're Off
We've packed our bags and are ready to go. I haven't heard so much as a cough, seen a drippy nose, or heard a sneeze. It looks like things are set for tomorrow. We're heading out pretty soon to Palo Alto to stay with Grandma Kathy and then we'll leave early tomorrow morning for UCSF. Please keep us in your prayers! I'll post from the hospital tomorrow.
Tuesday, January 15, 2008
More Cath Info
Drew's heart cath is set for this Friday. I talked with one of the cardiologists from UCSF this afternoon and we are the first case of the day. That means we need to be in admitting at 6:45 am with no food after midnight and no liquids past 5:30 am. I think it's good that we're the first case because hopefully Drew won't have a hard time fasting since it's so early and he's not used to eating that early anyway AND we are more likely to be able to go home the same day.
I've had lots of mixed emotions lately (what else is new?). Last night after Dan confirmed to me that his mom will be able to watch Ava for us on Friday I sort of lost it again. Just the thought of packing our suitcases again, driving out to Palo Alto again, reading Franklin again, explaining to Drew that we have to go to the hospital even if he doesn't want to again, spending the week away from our friends & activities AGAIN was more than I could take. I am tired. Tired in my heart. Weary. I told Dan that I just want to have a normal life. And even as I said it, I knew that I don't get to have a normal life. As Dan said, this is our normal life. Well I hate it.
But it's nothing another day and a little perspective didn't cure. Another heart mom I know posted some links of some blogs of heart kids who need prayer. I know I shouldn't have, but I visited their sites. And while usually this is a very bad thing for me (I have a hard time compartmentalizing and often really FEEL the pain someone else is feeling) it made me realize that I am lucky to be where I am. Things could be much, much worse.
These two verses helped me get to a better place today:
Come to me, all you who are weary and burdened and I will give you rest.
Matthew 11:28
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7
I've had lots of mixed emotions lately (what else is new?). Last night after Dan confirmed to me that his mom will be able to watch Ava for us on Friday I sort of lost it again. Just the thought of packing our suitcases again, driving out to Palo Alto again, reading Franklin again, explaining to Drew that we have to go to the hospital even if he doesn't want to again, spending the week away from our friends & activities AGAIN was more than I could take. I am tired. Tired in my heart. Weary. I told Dan that I just want to have a normal life. And even as I said it, I knew that I don't get to have a normal life. As Dan said, this is our normal life. Well I hate it.
But it's nothing another day and a little perspective didn't cure. Another heart mom I know posted some links of some blogs of heart kids who need prayer. I know I shouldn't have, but I visited their sites. And while usually this is a very bad thing for me (I have a hard time compartmentalizing and often really FEEL the pain someone else is feeling) it made me realize that I am lucky to be where I am. Things could be much, much worse.
These two verses helped me get to a better place today:
Come to me, all you who are weary and burdened and I will give you rest.
Matthew 11:28
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7
Thursday, December 13, 2007
New Date
UCSF called this afternoon. The new date for Drew's heart catheterization is January 2. That is technically after the holidays, but just barely. I think it will work well for us because I was worried that he'd get better and then just get sick again, but this way he probably won't have a lot of time or opportunity. We will have a break from preschool and our mom's groups so I think he will have less of an opportunity to be around potentially sick kids. Hopefully we will rid our house of all the sickness before then.
Tuesday, December 11, 2007
Heart Catheterization Postponed
Drew has an ear infection. He is on antibiotics and we thought they may choose to do the cath anyway since it is not an URI. But we chatted with Dr. Parrish this morning, and they would like to postpone the cath for at least two weeks, so that Drew can completely heal from his sickness. There are two reasons for this.
1. We don't want to stress his system further when it is already stressed due to illness
2. Being sick might interfere with the very measurements they are looking for during the cath.
We have not rescheduled the cath yet, but it's looking like it will be January. I am feeling kind of ambivalent about the postponement. I guess it is for the best if he is not feeling well, and I am still recovering from my stomach virus, and it looks like Ava may be coming down with something as well. But its kind of hard to get prepared for the procedure and then have to wait, knowing that we'll have to get ourselves prepared all over again.
Thanks for thinking of us and praying for us and we'll let you know once it's rescheduled.
1. We don't want to stress his system further when it is already stressed due to illness
2. Being sick might interfere with the very measurements they are looking for during the cath.
We have not rescheduled the cath yet, but it's looking like it will be January. I am feeling kind of ambivalent about the postponement. I guess it is for the best if he is not feeling well, and I am still recovering from my stomach virus, and it looks like Ava may be coming down with something as well. But its kind of hard to get prepared for the procedure and then have to wait, knowing that we'll have to get ourselves prepared all over again.
Thanks for thinking of us and praying for us and we'll let you know once it's rescheduled.
Tuesday, July 3, 2007
Immunology Update
Drew visited the immunologist at UCSF last week. The appointments don't seem to be very worthwhile, except for the blood test at the end. We usually talk to a fellow first who asks us a bunch of questions about Drew that they would know the answers to if they read his chart. OK, it is a big chart, but still...Then the "real" doctor comes in with her cohorts and asks the questions again. You'd think she'd get the answers from the first guy. My favorite question is "why are you here today?" Um, because you tell us to come back every 6 months. And we just like to visit the city. Anyway, this time it wasn't even our normal immunologist and we didn't even talk to a fellow, we talked to a medical student! Also, they didn't seem to be able to answer my questions, which is frustrating.
So on to the blood test. Drew screams from the time they tie on the tourniquet until they remove the needle from his arm. I don't know if the phlebotomist is getting better, or he is getting easier, but she got it in one try again this time! Yes! Then he got a sticker and he was fine.
I called and got the results today and his CD3s are 38% and CD4s are 24%. Last time they were 34% and 22% so we are seeing some small increases, which is good. His calcium level is normal and his absolute count for his CD3s was much better than last time. Unfortunately he can't get the live virus vaccines (chickenpox and MMR) until his CD3s are at a minimum of 40% and usually they don't give them until 50%. We'll keep praying for an increase in T-cells!
So on to the blood test. Drew screams from the time they tie on the tourniquet until they remove the needle from his arm. I don't know if the phlebotomist is getting better, or he is getting easier, but she got it in one try again this time! Yes! Then he got a sticker and he was fine.
I called and got the results today and his CD3s are 38% and CD4s are 24%. Last time they were 34% and 22% so we are seeing some small increases, which is good. His calcium level is normal and his absolute count for his CD3s was much better than last time. Unfortunately he can't get the live virus vaccines (chickenpox and MMR) until his CD3s are at a minimum of 40% and usually they don't give them until 50%. We'll keep praying for an increase in T-cells!
Tuesday, May 1, 2007
On our way home
Drew slept until 3:15! Which was great because once he woke up he was moving! I thought he'd be really cranky when he woke up, but he was in a great mood. He immediately asked for a snack and we had grilled cheese, chicken nuggets and french fries at the ready. He ate french fries by the fistfull and gulped down his apple juice. He also wanted to watch dinosaurs and the nice nurse found a dinosaur movie and brought it in for him. He showed me his owies and I kissed them.
Then he got really whiny and fidgety. He was supposed to lay flat and still until 5, but he was flip-flopping all over his bed. He started saying "I am sad." Nothing we offered really seemed to help. Luckily the doctors said we could leave as early as we wanted after 5pm. We figured he'd be better once we got in the car so we left by 5:30.
We are in Oakland picking up Ava. We are going to eat dinner here and then head home to sleep in our own beds. Thanks for keeping us in your thoughts and prayers today.
Then he got really whiny and fidgety. He was supposed to lay flat and still until 5, but he was flip-flopping all over his bed. He started saying "I am sad." Nothing we offered really seemed to help. Luckily the doctors said we could leave as early as we wanted after 5pm. We figured he'd be better once we got in the car so we left by 5:30.
We are in Oakland picking up Ava. We are going to eat dinner here and then head home to sleep in our own beds. Thanks for keeping us in your thoughts and prayers today.
Back from the Cath Lab
Drew is back from the cath lab and is sleeping peacefully in his bed. He got back around noon. The doctors had to insert two catheters—one through his groin and one through his neck. They also ended up having to coil a vein. They said he did well, but required a lot of sedation. Unfortunately his IV occluded during the procedure so his arm is swollen, but it should go down soon. Once he wakes up he will be able to eat something, but they want him to lay still until five o’clock! We’ll see if that happens. I’m hoping he’ll sleep for a long time to make it easier.
As far as a plan for surgery goes, we still don’t know. Our cardiologist will be having a teleconference with the cardiologists and surgeons from UCSF on Tuesday and we’ll set up an appointment with him after that to discuss surgery. Dr. Teitel (the cardiologist who did the cath today) thinks Drew’s heart looks good enough to do a repair, but he also thinks they might wait to make the decision until they are in surgery. I guess we will find out more next week. We’ll post again when we get discharged.
Here is a picture of Drew sleeping after the cath this morning.
As far as a plan for surgery goes, we still don’t know. Our cardiologist will be having a teleconference with the cardiologists and surgeons from UCSF on Tuesday and we’ll set up an appointment with him after that to discuss surgery. Dr. Teitel (the cardiologist who did the cath today) thinks Drew’s heart looks good enough to do a repair, but he also thinks they might wait to make the decision until they are in surgery. I guess we will find out more next week. We’ll post again when we get discharged.
Here is a picture of Drew sleeping after the cath this morning.
Saturday, April 14, 2007
Rumors
There have been some rumors among the heart community that things are changing at UCSF.
A lot of the parents are concerned about what is going on. More recently we have heard that Dr. Karl, the chief of pediatric cardiothoracic surgery at UCSF is no longer doing surgery there. I know one mom who has been emailing her PC with questions, and I of course have been making some phone calls. I talked with the CNS the other day and asked her to convince me to go to UCSF for surgery. I am feeling unsure about it and really just wanted her to tell me that it's one of the best places in the country for pediatric heart surgery, that the surgeons are among the best in their field and that we would be crazy not to go there. She didn't exacty say that.
She did say that our surgeon, Dr. Azakie, is very well respected and that UCSF is a high volume heart center, they have been doing these surgeries for 30 years and have a lot of experience. She also said that she has heard that some parents complain of it feeling a bit like a factory, with less "hand-holding" and some difficulty in talking to the surgeons or cardiologists as often as they would like. She suggested I call our cardiologist to ask his opinion.
So I did. He called me right back (love that!). He said that UCSF is liking the surgical results that Dr. Azakie is getting better than those that Dr. Karl is getting. They have promoted Dr. Azakie and are "turning away from Dr. Karl." Not sure what that means exactly. I shared my concerns that "politics" might be getting in the way of providing the best possible care for our kids. He said he was unaware that anything was going on in the ICU or anywhere else, all he knew about was the stuff with Dr. Karl. But he did say he would check into it and let me know. He also said he has the utmost respect for the cardiologists there and that he thinks we should proceed with the heart cath at UCSF on May 1st. Once we get the results he said we could possibly send Drew's records to some other surgeons and see if anyone would do anything differently.
Up until this point I have been completely comfortable at UCSF because of the dedicated pediatric heart center. I feel better knowing that Drew will be somewhere where all the nurses/doctors/staff do all day every day is take care of cardiac kids. I also completey trust Dr. Azakie because he did Drew's first two heart surgeries and I feel that he knows Drew's heart the best. So I guess I am looking for some reassurance that UCSF is the best place to be, that the doctors and staff are among the best in their field, and that there is a high rate of favorable surgical results. Why can't this be easier?
A lot of the parents are concerned about what is going on. More recently we have heard that Dr. Karl, the chief of pediatric cardiothoracic surgery at UCSF is no longer doing surgery there. I know one mom who has been emailing her PC with questions, and I of course have been making some phone calls. I talked with the CNS the other day and asked her to convince me to go to UCSF for surgery. I am feeling unsure about it and really just wanted her to tell me that it's one of the best places in the country for pediatric heart surgery, that the surgeons are among the best in their field and that we would be crazy not to go there. She didn't exacty say that.
She did say that our surgeon, Dr. Azakie, is very well respected and that UCSF is a high volume heart center, they have been doing these surgeries for 30 years and have a lot of experience. She also said that she has heard that some parents complain of it feeling a bit like a factory, with less "hand-holding" and some difficulty in talking to the surgeons or cardiologists as often as they would like. She suggested I call our cardiologist to ask his opinion.
So I did. He called me right back (love that!). He said that UCSF is liking the surgical results that Dr. Azakie is getting better than those that Dr. Karl is getting. They have promoted Dr. Azakie and are "turning away from Dr. Karl." Not sure what that means exactly. I shared my concerns that "politics" might be getting in the way of providing the best possible care for our kids. He said he was unaware that anything was going on in the ICU or anywhere else, all he knew about was the stuff with Dr. Karl. But he did say he would check into it and let me know. He also said he has the utmost respect for the cardiologists there and that he thinks we should proceed with the heart cath at UCSF on May 1st. Once we get the results he said we could possibly send Drew's records to some other surgeons and see if anyone would do anything differently.
Up until this point I have been completely comfortable at UCSF because of the dedicated pediatric heart center. I feel better knowing that Drew will be somewhere where all the nurses/doctors/staff do all day every day is take care of cardiac kids. I also completey trust Dr. Azakie because he did Drew's first two heart surgeries and I feel that he knows Drew's heart the best. So I guess I am looking for some reassurance that UCSF is the best place to be, that the doctors and staff are among the best in their field, and that there is a high rate of favorable surgical results. Why can't this be easier?
Thursday, March 22, 2007
Heart Catheterization Scheduled
Yesterday, while I was waiting for the results of the chest x-ray at the doctor's office UCSF called to schedule our cath. We were hoping for April, but it looks like we will have our appointment on May 1. We will not be the first case of the day, which means we will likely spend the night there. I have a slight fear that they will do the cath and want to do surgery immediately and so I was hoping to avoid having the appointment so close to Ava's first birthday. My fear is not unfounded, that's what happened with his second open-heart surgery. We went in on a Tuesday, came home and got a call on Wednesday asking us to be back at UCSF Thursday morning for pre-op. I don't really think that will happen this time, but I am trying to accept the possibility. If he needs surgery right away, then he needs surgery right away and that's that. It is starting to seem so real now. I guess we're on our way.
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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