Friday, July 8, 2011
Sunday, July 3, 2011
Surgery Looming
We will be heading to LPCH on this coming Friday, July 8 for pre-op, then Nicholas will have his second Pulmonary Artery Banding surgery on Monday, July 11. He has been home for this last week and will be home this coming week, in somewhat "isolation" to hopefully be as healthy as possible going into this.
I feel like I have been somewhat of a space cadet lately....I have a very hard time focusing and I feel like my mind wanders and I am worrying and worrying all the time. I know that we need to do this, but it is so hard trying to get ready for this again. We have been lightly discussing "surgery" and this time we will hopefully prepare Nicholas better. We have been collecting some "projects" that he can keep himself busy with while he recovers in the hospital, and he seems like he understands that these are for post surgery, not for now.
I think I have all the arrangements made for the other kids, but this also brings a lot of stress to my mind. I am most worried about Sienna, as she is little and a little crazy! I keep telling Ny that I trust her to take care of Sienna, but that I absolutely do not trust Sienna! She is a busy little girl and has no fear of anything....I hope she will be ok.
I will try to update often....thanks for any prayers!
I feel like I have been somewhat of a space cadet lately....I have a very hard time focusing and I feel like my mind wanders and I am worrying and worrying all the time. I know that we need to do this, but it is so hard trying to get ready for this again. We have been lightly discussing "surgery" and this time we will hopefully prepare Nicholas better. We have been collecting some "projects" that he can keep himself busy with while he recovers in the hospital, and he seems like he understands that these are for post surgery, not for now.
I think I have all the arrangements made for the other kids, but this also brings a lot of stress to my mind. I am most worried about Sienna, as she is little and a little crazy! I keep telling Ny that I trust her to take care of Sienna, but that I absolutely do not trust Sienna! She is a busy little girl and has no fear of anything....I hope she will be ok.
I will try to update often....thanks for any prayers!
Sunday, June 12, 2011
Another OHS in Nic's future
Ok, sorry to keep you waiting...we talked to Dr. Hanley on Friday morning and he said that Nicholas' gradient is still right around 30mmHg. Even though Dr. Peng already told us this, I was hoping (knowing the truth) that Dr. Hanley knew something that she didn't. It was already kind of confusing because at all of Nic's cardiology appointments with his primary cardiologist here, we thought that his gradient was much higher. At his last appointment with Dr Wright, they told us it was around 60mmHg. So I'm not sure how that happened, maybe that ultrasound is less reliable than heart cath? Well whatever the case, we are still at square one. So.....
Dr. Hanley gave us two options:
1. We leave the band where it is. It will take YEARS for the gradient to get to the point where Nicholas could have his double switch. Basically, the band would stay at the diameter it currently is, and when Nicholas grows, it will automatically tighten his pulmonary artery because the artery will grow, but the band will not. But he said this will take 3-5 years, and when the LV reaches the ideal pressure gradient, we would have to wait another 6 months to 1 year to make sure the heart can sustain those pressures. So in other words, Nicholas would be at least 7-9 years old before his big operation.
2. We do another open heart surgery to tighten the PA Band. This would potentially be the last time the tightening would take place prior to the Double Switch. Dr. Hanley now knows that the gradient they tried to impose on his heart in December was too weak, so now he can be a little more aggressive to restrict the flow and make Nicholas' LV work harder and get stronger. Hopefully this will do the trick, but it is always possible that Nicholas would need yet another PA Band tightening to fully prepare his heart for the double switch.
We decided that we are going to go with the second option. It has always been really important to me that Nicholas be "done" by the time he starts school. I really don't see the purpose of prolonging the inevitable. I want my boy to be able to run and play baseball and ride his bike without being so winded. I also don't want him to feel "different" when he goes to school because his heart can't keep up with the other kids. Not to mention the amount of school he would miss if we wait.
It will be sometime within the next month, maybe even a few weeks. On Friday, we picked July 1st to be the big day, but Dr. Hanley's office called later that afternoon and cancelled it because they said they accidentally gave it to a patient the day before, so now I am waiting for his office manager to call me tomorrow to let me know when we will actually be doing it.
More to come when I know what the day will be....
Dr. Hanley gave us two options:
1. We leave the band where it is. It will take YEARS for the gradient to get to the point where Nicholas could have his double switch. Basically, the band would stay at the diameter it currently is, and when Nicholas grows, it will automatically tighten his pulmonary artery because the artery will grow, but the band will not. But he said this will take 3-5 years, and when the LV reaches the ideal pressure gradient, we would have to wait another 6 months to 1 year to make sure the heart can sustain those pressures. So in other words, Nicholas would be at least 7-9 years old before his big operation.
2. We do another open heart surgery to tighten the PA Band. This would potentially be the last time the tightening would take place prior to the Double Switch. Dr. Hanley now knows that the gradient they tried to impose on his heart in December was too weak, so now he can be a little more aggressive to restrict the flow and make Nicholas' LV work harder and get stronger. Hopefully this will do the trick, but it is always possible that Nicholas would need yet another PA Band tightening to fully prepare his heart for the double switch.
We decided that we are going to go with the second option. It has always been really important to me that Nicholas be "done" by the time he starts school. I really don't see the purpose of prolonging the inevitable. I want my boy to be able to run and play baseball and ride his bike without being so winded. I also don't want him to feel "different" when he goes to school because his heart can't keep up with the other kids. Not to mention the amount of school he would miss if we wait.
It will be sometime within the next month, maybe even a few weeks. On Friday, we picked July 1st to be the big day, but Dr. Hanley's office called later that afternoon and cancelled it because they said they accidentally gave it to a patient the day before, so now I am waiting for his office manager to call me tomorrow to let me know when we will actually be doing it.
More to come when I know what the day will be....
Tuesday, June 7, 2011
A Bit Disappointed
Well we went to Stanford last week and went through the process of checking Nicholas' heart. We met with the team on Wednesday for pre-op, and then on Thursday Nicholas had an MRI and cardiac catheter. The results were disappointing. We don't have the MRI report yet, but we can presume that not much has changed since before his PA Band was placed in December. The heart cath measured Nicholas' gradient at around 30 mmHg. This is almost exactly where he started. We haven't spoken to Dr. Hanley, because he was in back-to-back surgeries and we checked out of the hospital before he was out of surgery. But we have a phone consultation set up for this Friday and we will have the full report and he will give us his recommendation for the next step. Dr Peng, who has done both of Nic's heart cath procedures, talked with us and she speculates that Dr. Hanley will want to re-band sooner rather than later. So I think we will probably be looking at another open heart surgery sometime this summer.
I will keep you posted......
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| Nicholas sleeping soundly after a long, busy day of testing. |
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| Nicholas with Clarice, ready to go home |
Friday, May 27, 2011
Busy, Busy
I have been so busy lately, with work and running kids...that I haven't had much time on the computer lately. The big kids' last day of school was yesterday and I got off from work early today, so now the computer is free and I thought I'd take a few minutes to catch up.
We leave to go to Stanford for another round of catheterization and an MRI. I got the confirmation phone call today while I was driving home from work. This is a huge relief since it is our 3rd appointment that has been rescheduled by them! Well, that is, relief coupled with anxiety! I am so anxious to know how Nicholas' heart has or has not changed since his pulmonary artery banding in December. I am also nervous to know, because that means we may have to make the next step, which both scares me and leaves me very hopeful.
I do feel really lucky, though. A few days ago I had this patient, "Dr. Judy"....and she was a researcher at UC Davis. She is really big on stem cell research. Apparently her team is researching using FAT cells and turning those fat cells turn back into stem cells to then grow new cells, organs, body parts...Can you IMAGINE??? I think it is amazing to think of a scientist taking a sample of Nicholas' fat cells (not that he has that many!) and growing him a new heart! She was fascinating to talk to and it really gave me hope that someday these CHD kids may have a new opportunity at a new heart, grown right from their own cells. Amazing! She also invited me to be an advocate for funding from the state legislature. She asked for my story and contact information so she can notify me of the next time there is discussion about this sort of thing. I can't imagine what scientific advances could be made if there was more CHD funding!
I will write again soon!
We leave to go to Stanford for another round of catheterization and an MRI. I got the confirmation phone call today while I was driving home from work. This is a huge relief since it is our 3rd appointment that has been rescheduled by them! Well, that is, relief coupled with anxiety! I am so anxious to know how Nicholas' heart has or has not changed since his pulmonary artery banding in December. I am also nervous to know, because that means we may have to make the next step, which both scares me and leaves me very hopeful.
I do feel really lucky, though. A few days ago I had this patient, "Dr. Judy"....and she was a researcher at UC Davis. She is really big on stem cell research. Apparently her team is researching using FAT cells and turning those fat cells turn back into stem cells to then grow new cells, organs, body parts...Can you IMAGINE??? I think it is amazing to think of a scientist taking a sample of Nicholas' fat cells (not that he has that many!) and growing him a new heart! She was fascinating to talk to and it really gave me hope that someday these CHD kids may have a new opportunity at a new heart, grown right from their own cells. Amazing! She also invited me to be an advocate for funding from the state legislature. She asked for my story and contact information so she can notify me of the next time there is discussion about this sort of thing. I can't imagine what scientific advances could be made if there was more CHD funding!
I will write again soon!
Saturday, May 7, 2011
Happy Day
Well, the good news is that I ended up getting the full time position in my office! All that worrying!!! I am so excited to have a good job and not worry so much financially. The downside is obvious....less time at home with the kids.
I think this last year, with so much going on....living very frugally, busy with four kids, the stress of Nicholas' heart surgery....has really affected me. I am really going to try to get out of this "rut" I've been in and start trying to be more optomistic. Is the glass half-empty or half-full? I guess a lot of things in life are really perspective and I will try to change mine.
Happy Mother's Day to all the mommas out there!
I think this last year, with so much going on....living very frugally, busy with four kids, the stress of Nicholas' heart surgery....has really affected me. I am really going to try to get out of this "rut" I've been in and start trying to be more optomistic. Is the glass half-empty or half-full? I guess a lot of things in life are really perspective and I will try to change mine.
Happy Mother's Day to all the mommas out there!
Sunday, March 27, 2011
Time To Catch Up!
I can't believe it has been a month and a half since I've posted here. Since then, we have seen our cardiologist twice. At our last visit on March 8 (which was exactly 12 weeks post-op), Dr. Wright delivered some exciting news...Nicholas' PA Band measurement was in the low 60mmHg range, which is over double of what it had been before! If it is possible to get excited about more surgeries, then this would be an example of what we would hope for!
With that being said, it goes without saying that we are nervously anticipating another visit to Stanford, which is scheduled for the beginning of May. We will have another cardiac catheterization and possibly another MRI to accurately measure the strength and pressure inside his heart. The information that is gathered then will determine if Nicholas needs another PA Banding surgery to further train his left ventricle or if his heart is ready for the big Double Switch operation.
With that being said, it goes without saying that we are nervously anticipating another visit to Stanford, which is scheduled for the beginning of May. We will have another cardiac catheterization and possibly another MRI to accurately measure the strength and pressure inside his heart. The information that is gathered then will determine if Nicholas needs another PA Banding surgery to further train his left ventricle or if his heart is ready for the big Double Switch operation. Nicholas also went in for his 4 year well child check up this month (a little late, obviously!). He has grown one inch and gained over two pounds since his surgery! I suspect this has played a part in the PA Band gradient going up so much since the last echo!
Life has been so busy lately, I will try to do better to stay on top of my blog!
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