I talked with a Dr. at UCSF today. He went over the procedure with me, talked about what they are looking for, what they will do. We discussed when to stop Jilly's meds. That she is 2nd case on Tuesday which means we check in at 9:30 am. That she can't have anything to drink or eat after 6am that morning. Should not be hard because she's not a big eater early in the morning. But she does like a nice, tall cup of apple juice to start off her day.
He talked about what floor she will recover on, that the procedure will take anywhere between 3-5 hours and to plan on staying the night in case the procedure goes long. And I felt like I was in one of those tv shows where the camara pans out, the person is standing still, there is noise and things rushing all around that person but time stops, for just that person. I felt like I was transported back to 2004 and talking to the UCSF doctors on the phone from home, giving permission for procedures, listening to doctor talk while hearing those hospital sounds in the background. It felt surreal. And scary.
The anxiety is back. Creeping in on small waves of panic that I feel could turn into a Tsunami of panic and anxiety if I let it. But life goes on, even when I want it to stop, or even slow down for just a minute and let me catch my breath.
Next week is our spring break and Mikayla is in full planning mode. I have to remember that just because I am panicked does not mean she is. Does not mean she can't go have fun just because I won't be having any fun. I had to remind myself to laugh when she said "well look on the bright side mom, there's a Panda Express right across the street from UCSF." That's my girl, find the silver lining and remind your mom that there are good things to find in the midst of all this anxiety. I'll take a heaping dose of optimism please.
Thursday, March 29, 2007
Wednesday, March 28, 2007
I be Happy
I forget that Jilly is almost 3 and understands much more than I give her credit for. She tells people she has a special heart and will show them her "ouchey" when asked. She credits her pediatrician, Dr. Cooke, for her ouchey's, that's the only doctor she really remembers since she sees him regularly although I'm sure he does not want to take credit for her ouchey's.
So I told her last night she has to go to the hospital. She said "where?". I tried to explain to her very simply where. I told her she has to get a picture of her heart but she might have another ouchey after and might not feel good.
My brave sunshine then says to me "it be ok mommy, I be happy at hos-ital."
Oh, sweet girl, I certainly hope you be happy and that the procedure goes as planned with no complications.
On another note, Riley is not doing so well. It makes me so sad. And scared.
So I told her last night she has to go to the hospital. She said "where?". I tried to explain to her very simply where. I told her she has to get a picture of her heart but she might have another ouchey after and might not feel good.
My brave sunshine then says to me "it be ok mommy, I be happy at hos-ital."
Oh, sweet girl, I certainly hope you be happy and that the procedure goes as planned with no complications.
On another note, Riley is not doing so well. It makes me so sad. And scared.
Monday, March 26, 2007
Relaxing weekend
My girlsWe spent the weekend at Grandpa's lake house and actually were able to relax. The older girls had fun fishing with dad and Jilly enjoyed just hanging out with everyone and even caught a "baby" fish with her daddy (baby referred to the bait, not an actual fish). I was able to do some reading and Russ was able to do some napping - overall, a nice, quiet, relaxing weekend.
fishing with daddy
Jilly all growned up
My beautiful Jilly
Wednesday, March 21, 2007
Thoughts
Jillian is feeling much better - no more fever. Thank goodness because 5 days of high fevers is enough for me!
Watching Jilly take a bath yesterday I was struck my some random thoughts. Or not so random if you really think about it. For so many months now I have stuck the thought of her having surgery in the back of my mind. Have stuck the thought of possibly loosing her way, far back there. That thought used to be right there at the front. Was smacking me in the face for so much of the first year of her life. I read a post on another blog yesterday and the mom of this little baby girl with some major heart defects said she was working on making peace with the possibility of loosing her little girl. I started thinking and wondering. Have I made peace with that possibility? I remember when she was still at UCSF and I would be here in town at soccer practice or at the grocery store or lying in bed daydreaming about her as a 3 year old running through the grass. As a five year old starting kindergarden. As a pre-teen painting her fingernails. I used to get so sad thinking I might not have those magical memories/moments with her like I have with Mikayla and Haley. I was consumed by a fear of not seeing her toddler self running through the grass. But now I have, although she still can't run very well. But I have seen her little self playing outside, carefree and happy. And I want more. I want to see her prancing off to kindergarden, to middle school, backing a car out of the driveway. Not memories of her being sick, enduring surgery and procedures, long hospital stays. But those experiences I have to accept as being a part of Jilly's life. And that's it! I have not come to peace with loosing her, I don't know if I ever will. What I have begun to accept is that having Jilly in my life will mean surgeries and procedures and hospitals. But it also means nose kisses, squeels of delight when Dora comes on the TV, hours of swinging outside, and demands for me to come get her in the middle of the night so that she can snuggle in my bed with me. I will take one so that I can have the other. And I accept that and am at peace with that.
I came across this (click on this link here) back when Jilly first came home and I stumbled across it again while reading about another heart kid. It brought tears to my eyes, like it did the first time I read it but has so much more meaning to me now. It means I am at a point of acceptance but have much more road to travel.
Watching Jilly take a bath yesterday I was struck my some random thoughts. Or not so random if you really think about it. For so many months now I have stuck the thought of her having surgery in the back of my mind. Have stuck the thought of possibly loosing her way, far back there. That thought used to be right there at the front. Was smacking me in the face for so much of the first year of her life. I read a post on another blog yesterday and the mom of this little baby girl with some major heart defects said she was working on making peace with the possibility of loosing her little girl. I started thinking and wondering. Have I made peace with that possibility? I remember when she was still at UCSF and I would be here in town at soccer practice or at the grocery store or lying in bed daydreaming about her as a 3 year old running through the grass. As a five year old starting kindergarden. As a pre-teen painting her fingernails. I used to get so sad thinking I might not have those magical memories/moments with her like I have with Mikayla and Haley. I was consumed by a fear of not seeing her toddler self running through the grass. But now I have, although she still can't run very well. But I have seen her little self playing outside, carefree and happy. And I want more. I want to see her prancing off to kindergarden, to middle school, backing a car out of the driveway. Not memories of her being sick, enduring surgery and procedures, long hospital stays. But those experiences I have to accept as being a part of Jilly's life. And that's it! I have not come to peace with loosing her, I don't know if I ever will. What I have begun to accept is that having Jilly in my life will mean surgeries and procedures and hospitals. But it also means nose kisses, squeels of delight when Dora comes on the TV, hours of swinging outside, and demands for me to come get her in the middle of the night so that she can snuggle in my bed with me. I will take one so that I can have the other. And I accept that and am at peace with that.
I came across this (click on this link here) back when Jilly first came home and I stumbled across it again while reading about another heart kid. It brought tears to my eyes, like it did the first time I read it but has so much more meaning to me now. It means I am at a point of acceptance but have much more road to travel.
Monday, March 19, 2007
Echo Results
What a long day. Jillian has had a high fever since Friday afternoon. I took her to the pediatrician at noon because her fever just won't come down. She had to get blood drawn and that made her so unhappy.
Her echo shows that she does have what are referred to as collatoral veins. Basically this means because of the surgeries that she has had, the Norwood and the Glen procedure, her heart has grown veins to find different blood supplies. This in turn has caused her oxygen saturations to decrease into the 70's. Normal is 97-100. After the Glenn, Jilly's have been in the mid to low 80's. A heart catherization has been scheduled at UCSF for April 3rd. If the problem seems to be the collatoral veins they will coil them off during the cath. They will also measure pressures in her heart and lungs. Her cardiologist here in Sacramento will then get the information and make a determination if surgery is the next step. There are many factors that she needs to consider. If coiling off the collatoral veins increases her energy and oxygenation then putting off the surgery until Jilly is bigger (another year possibly) could be an option depending on the pressures that they will measure. She will consult with the doctors at UCSF in making this determination. She did say that Jilly is certainly big enough to do the next surgery, the Fontan. In doing the Fontan, another conduit (or tube) is used to re-route blood. They want to make sure that she is big enough that they won't have to go in again if she outgrows the conduit.
Dr. Hattendorf did say that what she saw could happen is that after the heart cath. an optimal time to do the Fontan would be in August/September. That way Jilly won't have to have another catherization. I am betting that this is what will happen. There seems to be no reason to put off the surgery another year and risk Jillian getting sick or going into beginning stages of heart failure. Her doctor seemed to agree with this assessment.
So to wrap up:
Heart catherization at UCSF April 3rd
Follow up appt. with Dr. Hattendorf the following week to go over results from cath. and formulate plan.
My thought after talking with her at length today: surgery in August/September.
Her echo shows that she does have what are referred to as collatoral veins. Basically this means because of the surgeries that she has had, the Norwood and the Glen procedure, her heart has grown veins to find different blood supplies. This in turn has caused her oxygen saturations to decrease into the 70's. Normal is 97-100. After the Glenn, Jilly's have been in the mid to low 80's. A heart catherization has been scheduled at UCSF for April 3rd. If the problem seems to be the collatoral veins they will coil them off during the cath. They will also measure pressures in her heart and lungs. Her cardiologist here in Sacramento will then get the information and make a determination if surgery is the next step. There are many factors that she needs to consider. If coiling off the collatoral veins increases her energy and oxygenation then putting off the surgery until Jilly is bigger (another year possibly) could be an option depending on the pressures that they will measure. She will consult with the doctors at UCSF in making this determination. She did say that Jilly is certainly big enough to do the next surgery, the Fontan. In doing the Fontan, another conduit (or tube) is used to re-route blood. They want to make sure that she is big enough that they won't have to go in again if she outgrows the conduit.
Dr. Hattendorf did say that what she saw could happen is that after the heart cath. an optimal time to do the Fontan would be in August/September. That way Jilly won't have to have another catherization. I am betting that this is what will happen. There seems to be no reason to put off the surgery another year and risk Jillian getting sick or going into beginning stages of heart failure. Her doctor seemed to agree with this assessment.
So to wrap up:
Heart catherization at UCSF April 3rd
Follow up appt. with Dr. Hattendorf the following week to go over results from cath. and formulate plan.
My thought after talking with her at length today: surgery in August/September.
Friday, March 16, 2007
Monday is coming....
I have actually been so busy this week that I put Monday's appointment to the back of mind - for a little while anyway. Russ is going to be there which is good. It' s always hard deciphering information when I report back to him after appointments. My feeling is still that things will proceed from there to the cath. and possibly surgery. Nothing specific to lead me to this feeling - just a feeling.
Now that we are on this road it's like when you get pregnant and all of a sudden it seems that every woman you run into is also pregnant. There seems to be a lot of kids that I have followed over the years going in for their 3rd sugeries (the Fontan) or back in the hospital for various reasons. The little boy that I talked about in my other blog, Riley, is back in the hospital with possible complications from his Fontan surgery. Another young girl just had her Fontan at Oakland's Children's Hospital and seems to be doing well. And there are a few others who are scheduled for catherizations in preparation for their Fontan.
It's amazing that 3 years ago we had never heard of these severe heart defects much less the surgeries that help. And now I know of many children who have gone through them or are going through them. It certainly makes us feel less alone in the world.
What is also amazing is the ease in which Russ and I talk "cardiology". We were watching my favorite show last night, Grey's Anatomy. Burke, the cardiothoracic surgeon, says "I'm going to do an arterial switch for TGA." And Russ and I both said in unison "Transposition of the Great Arteries, oh that's simple!" We both laughed that we knew exactly what Burke was referring to and knew what TGA meant since that is one of Jillian's defects. But I do wish I was like the other 98% of the population out there watching that show last night who had no clue what he was talking about.
Now that we are on this road it's like when you get pregnant and all of a sudden it seems that every woman you run into is also pregnant. There seems to be a lot of kids that I have followed over the years going in for their 3rd sugeries (the Fontan) or back in the hospital for various reasons. The little boy that I talked about in my other blog, Riley, is back in the hospital with possible complications from his Fontan surgery. Another young girl just had her Fontan at Oakland's Children's Hospital and seems to be doing well. And there are a few others who are scheduled for catherizations in preparation for their Fontan.
It's amazing that 3 years ago we had never heard of these severe heart defects much less the surgeries that help. And now I know of many children who have gone through them or are going through them. It certainly makes us feel less alone in the world.
What is also amazing is the ease in which Russ and I talk "cardiology". We were watching my favorite show last night, Grey's Anatomy. Burke, the cardiothoracic surgeon, says "I'm going to do an arterial switch for TGA." And Russ and I both said in unison "Transposition of the Great Arteries, oh that's simple!" We both laughed that we knew exactly what Burke was referring to and knew what TGA meant since that is one of Jillian's defects. But I do wish I was like the other 98% of the population out there watching that show last night who had no clue what he was talking about.
Friday, March 9, 2007
Karma and Cliches and Delays
And the delays begin.
Jillian's echo has been pushed back to 2:30 from 8:00 am on Monday the 19th. Having spent 3 months at UCSF I know the frustrations of surgeries and procedures being pushed back, rescheduled and cancelled. My sky-is-falling, impatient personality has a very hard time with delays. So I hope this is not a sign of things to come.
Speaking of signs....I believe in Karma.
If you say it, it could happen. So I try not to say things out loud for fear that they may happen.
I get mad when I complain of a headache and Russ teases me and says "It's a tumor"
Doesn't he understand the laws of bad Karma? Bad energy = bad things.
Say it and it can happen.
Which is funny because I am the world's biggest hypochondriac.
Got an ache? It must be arthritis.
Feeling dizzy? Could be vertigo.....or worse....but I can not say it, it might be true.
And I worry endlessly about things I have no control over.
Like Jillian. Worrying does not change anything. It does not change the fact that she has severe congenital heart disease and that in my lifetime she might..........nope, can't say it, it could happen.
And does God really only give you what you can handle? People continually say since Jilly was born "God only gives you what you can handle"
Does that mean I have a get out jail free card? Does that mean my other daughters will never face a life threatening illness, or me, or Russ?
Because really? One child with a life-threatening illness is really more than I can handle. Really.
So in the end karma and cliches don't change anything. They don't provide me any comfort or safety. I just have to believe in my own cliches such as "good things happen to good people" That does not explain why we are where we are because I like to believe that we are good people but...my hope is that from here good things will happen. I have to believe in that. And I have to believe that if this is the course we are now on there will be no unexpected delays, detours or pit-stops. Good thoughts = good karma.
Jillian's echo has been pushed back to 2:30 from 8:00 am on Monday the 19th. Having spent 3 months at UCSF I know the frustrations of surgeries and procedures being pushed back, rescheduled and cancelled. My sky-is-falling, impatient personality has a very hard time with delays. So I hope this is not a sign of things to come.
Speaking of signs....I believe in Karma.
If you say it, it could happen. So I try not to say things out loud for fear that they may happen.
I get mad when I complain of a headache and Russ teases me and says "It's a tumor"
Doesn't he understand the laws of bad Karma? Bad energy = bad things.
Say it and it can happen.
Which is funny because I am the world's biggest hypochondriac.
Got an ache? It must be arthritis.
Feeling dizzy? Could be vertigo.....or worse....but I can not say it, it might be true.
And I worry endlessly about things I have no control over.
Like Jillian. Worrying does not change anything. It does not change the fact that she has severe congenital heart disease and that in my lifetime she might..........nope, can't say it, it could happen.
And does God really only give you what you can handle? People continually say since Jilly was born "God only gives you what you can handle"
Does that mean I have a get out jail free card? Does that mean my other daughters will never face a life threatening illness, or me, or Russ?
Because really? One child with a life-threatening illness is really more than I can handle. Really.
So in the end karma and cliches don't change anything. They don't provide me any comfort or safety. I just have to believe in my own cliches such as "good things happen to good people" That does not explain why we are where we are because I like to believe that we are good people but...my hope is that from here good things will happen. I have to believe in that. And I have to believe that if this is the course we are now on there will be no unexpected delays, detours or pit-stops. Good thoughts = good karma.
Thursday, March 8, 2007
Wednesday, March 7, 2007
Hearing it Makes it Real
We have known since Jillian's 2nd surgery that she would need a 3rd surgery. There was never any if's, and's or but's.........it was cold hard facts. She WILL have a 3rd surgery whether we like it or not. So we have lived with that little cold, hard fact for the past 2 1/2 years. But since Jilly has been doing so well we tucked it into the back of our minds. Filed it away to be looked at some other time. Buried our heads in the sand until a time to be determined at a later date.
I had a feeling her cardiologist was going to want to go the heart cath. route. Jilly has been looking very blue lately. Her lips sometimes look like she just got done with a blue sucker. Her fingernails and toe nails are a brighter shade of purple instead of the lovely lavendar color they have been. So I knew. I knew but did not want to hear it. So when she said we need to look at doing the heart cath. I smiled. Not a smile of joy. More like a smile of defeat. Definately not a smile of happiness. And we went on about the business of discussing the details. The echo first. Then the heart cath. Questions about the surgery - called the Fontan. Will she be ready if they determine its time? Yes, physically she is now big enough. All the other burning questions will have to wait. And most of them can't be answered anyway. Most of them are "what if" questions that you would think I would know better than to even entertain the thought of asking. You would think I learned that way back when during her first two surgeries. Doctors do not deal in "what if" scenarios. It is what it is and you cross each bridge when you get there.
The anxiety starts now. When I heard the game plan I had a feeling of finality. Here we go. It's time. No anxiety at that point. The anxiety started the next day. At work. Looking at all her pictures around my desk. Just a little fluttering at first. No panic yet. But the tears. The tears are starting again. I thought I was past that. But no, here they come. I had to drive back on my lunch hour to Kaiser Morse to pick up a new prescription that was not ready the day before after waiting for an hour. In the 3 years that Jilly has been with us getting her medication filled at the pharmacy has been a NIGHTMARE. Every 28 days I have to get the prescription filled and every 28 days there is some problem where I have to become an aggressive, rude person to get my daughter's very important heart medication filled. Yesterday was nothing new. The pharmacy clerk was rude to me - told me this medication takes 48-72 hours to fill. Well it's already been 24, how many more days do you need to crush a little pill and mix it with water. The pharmacist did not know if he had the ingredients. On and on and on. I lost it. I yelled. I was rude. It would be safe to say I was a bitch. He asked me to step aside and wait. I yelled no, I had waited long enough. Then the tears began burning at the back of my eyelids. I walked out into the hallway and broke down. I marched upstairs to the cardiologists office but she was at lunch. So I marched out to my car, the whole time crying. So I did what every irrational woman does. I called my husband. He talked me down, or rather he listened while I ranted and asked me if I was ok. For now. For now I am ok.
I had a feeling her cardiologist was going to want to go the heart cath. route. Jilly has been looking very blue lately. Her lips sometimes look like she just got done with a blue sucker. Her fingernails and toe nails are a brighter shade of purple instead of the lovely lavendar color they have been. So I knew. I knew but did not want to hear it. So when she said we need to look at doing the heart cath. I smiled. Not a smile of joy. More like a smile of defeat. Definately not a smile of happiness. And we went on about the business of discussing the details. The echo first. Then the heart cath. Questions about the surgery - called the Fontan. Will she be ready if they determine its time? Yes, physically she is now big enough. All the other burning questions will have to wait. And most of them can't be answered anyway. Most of them are "what if" questions that you would think I would know better than to even entertain the thought of asking. You would think I learned that way back when during her first two surgeries. Doctors do not deal in "what if" scenarios. It is what it is and you cross each bridge when you get there.
The anxiety starts now. When I heard the game plan I had a feeling of finality. Here we go. It's time. No anxiety at that point. The anxiety started the next day. At work. Looking at all her pictures around my desk. Just a little fluttering at first. No panic yet. But the tears. The tears are starting again. I thought I was past that. But no, here they come. I had to drive back on my lunch hour to Kaiser Morse to pick up a new prescription that was not ready the day before after waiting for an hour. In the 3 years that Jilly has been with us getting her medication filled at the pharmacy has been a NIGHTMARE. Every 28 days I have to get the prescription filled and every 28 days there is some problem where I have to become an aggressive, rude person to get my daughter's very important heart medication filled. Yesterday was nothing new. The pharmacy clerk was rude to me - told me this medication takes 48-72 hours to fill. Well it's already been 24, how many more days do you need to crush a little pill and mix it with water. The pharmacist did not know if he had the ingredients. On and on and on. I lost it. I yelled. I was rude. It would be safe to say I was a bitch. He asked me to step aside and wait. I yelled no, I had waited long enough. Then the tears began burning at the back of my eyelids. I walked out into the hallway and broke down. I marched upstairs to the cardiologists office but she was at lunch. So I marched out to my car, the whole time crying. So I did what every irrational woman does. I called my husband. He talked me down, or rather he listened while I ranted and asked me if I was ok. For now. For now I am ok.
Tuesday, March 6, 2007
It's time - maybe
So here I am blogging again after I said I did not want to anymore. But the reason I am doing it again is not so much as I want to but more that I feel I need to. Jilly had her cardiology appointment yesterday and it appears that we are starting down the road toward her 3rd open heart surgery. I will use this blog specifically for updates regarding Jilly - her appointments, procedures and ultimately her surgery - unfortunately. I was hoping to have another year before this stress but it appears not.
She will be having an echocardiogram on March 19th. From there Dr. Hattendorf will be scheduling her for a heart catherization at UCSF within a month or so. From that we will know if surgery is the route they want to go - surgery will happen whether we want it to or not - it will just be determining whether to do it sooner rather than later.
The updates will start now.......
She will be having an echocardiogram on March 19th. From there Dr. Hattendorf will be scheduling her for a heart catherization at UCSF within a month or so. From that we will know if surgery is the route they want to go - surgery will happen whether we want it to or not - it will just be determining whether to do it sooner rather than later.
The updates will start now.......
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