My very sweet, very supportive and somewhat insane husband nominated me for a local mother of the year contest. He was very complimentary in his entry but I thought he missed the deadline. When I received the call that I was chosen by the staff as one of the finalists (top 10) I was quite stunned. Yesterday we had to go to the news paper office and do a short on camera interview to be posted on the website for family, friends and general public to vote. I was so nervous and flustered, I feel like I did such a horrible job during the interview. All last night I just kept thinking how terrible (such a tool) I would seem to anyone watching these clips and felt so disgusted with myself for not saying all the things I really wanted to say. To all my family and friends, here are the responses I really wanted to say.
The first question the interviewer asked was how I felt when I found out that not only was I nominated by Kevin but that I was chosen as a finalist. Of course I did not think before opening by big mouth and just blurted out the first thing that I was thinking...that I was embarrassed. Gee. Great answer. Instead of expounding on why I felt that way I clumsily stumbled through a weird explanation. What I meant was that I was embarrassed because I do not feel that I do anything more extraordinary than any other mom. I think every mom should be mother of the year and I feel that I personally know so many great moms that deserve this honor so much more than me. All moms have issues, struggles and doubts. I do not feel mine are any more difficult than the single mom working multiple jobs and busting her butt to keep her kids on the straight and narrow or the mom diagnosed with cancer who wakes up every morning feeling horrific due to all the nasty chemo drugs but still smiles, loves her kids and makes their day good or the mother of a child with severe special needs like cerebral palsy or autism or the mother who has had to bury a child but pick herself up and keep living for the other children she still has or even the mother who has a child with colic or a baby who never sleeps. As well meaning as I know these people are, I really do not like when other moms compare themselves to me and say, gee, my day is not so bad when I think of yours. You know, honestly, I feel the exact same way as you. There will always be someone, somewhere struggling more than me.
The second question was to describe my family. I was not too sure what she meant as to me the question seemed pretty vague and broad. I ended up mentioning the kids but then got sidetracked into taking about C and the upcoming Race for Baby C. While I am all about free publicity, holy wow, what a complete tool I am to be talking about a fundraiser to benefit us. Ugh. Total face plant. I would much prefer my answer to be how much I adore all three of my kids. How grateful I am to be the mom to two such incredible boys who are funny, sweet, adaptable and love me no matter how much I fail them. I wanted to say how Kevin and I both try so hard to make a normal family life for everyone as we never want the boys to feel like they are coming in second to C and her issues. I wanted to express how we try and do one on one outings with the boys so they feel special and important and can have the day just by themselves with just one of us. I wanted to shout how much I love them for also being upbeat and positive when the visit C in the hospital and how they never complain with how much I am gone or never think that I love C more because I have to be gone with her so much and how much they love and adore their sister. I wanted to say I am and will be eternally humbled to know these are my wild and crazy boys and I am beyond blessed to be their mom.
And finally the third question that I totally flubbed...the one everyone asks and the one everyone wants the answer too, how do I do it all? My totally unoriginal answer...we have a very strict, tight schedule that we follow. Really, that is all I have to say. How about I talk about how I cannot do this alone. How about I say that I have a great husband who works his ass off at his job, does all he can to support me and still loves me no matter how much I yell, nitpick or blowup because he has not done something to my OCD way of liking. How about my amazing, incredible support group of family, friends and coworkers who support, encourage and help me out without ever expecting anything in return. Oh man. Of all the questions I wanted to answer differently this is the one I feel the worst about. I am not a supermom. I do not and cannot do all that I do without help. I get down and pray a huge thank you to God everyday for each of you that is in my life. My coworkers who take over my office when I am gone and make sure everything is handled. My boss who picks up the slack all on his own. Everyone I work with who has embraced C and is okay with her still coming to work with me. All the Judges who constantly ask how C is doing or bring her little gifts. When someone tells me how lucky I am to have a boss like mine and coworkers like mine, I smile, nod and agree all the while thinking that the person has no idea just how much I understand how fortunate I am to work with all of these truly amazing people. All of my friends who have supported us, encouraged us and done the little things that mean so much like letting my boys stay with them when we need to be out of town with C, make us dinner, attend our fundraisers and come and hang out with us (have a beer or two) and make sure we feel like we are a normal family. All of my family who I would not have made it through the last 4 years without them. I cannot even fully express my gratitude to all of my family (local and distant...mine and Kevin's) for all of things they have done for me. And of course I cannot forget the wonderful ladies who formed Team Baby C. Outside of the huge help of taking some of the financial burden off of me by having fundraisers, these women have welcomed me into their circle, inspired me to take up and continue running and have generally made me get off my ass and do something. I will be forever grateful to all of these girls who make me want to be a better person.
One of the things that I did not get a direct question about but I feel is so important that I would have liked to address is who inspires me to be the mom I am. Well, this is easy. The list is long but please bear with me as each of these ladies have shaped me into the mother I am. I will be forever grateful to my "second moms" Laura V., Carrie B., and Katie D. who have shown me how to be gracious, grateful, strong and to love with all I have. All of my aunts, Ellen, Sherrie, Laura and yes, even you Janet :0...for giving me the best example of true family, faith and hope. All of my cousins who I think are pretty great moms themselves. I learn so much from my cousins who are all raising kids of various ages. For all my super mom friends...how I try and be like you :) I am grateful for my sister. Even though I was a mom before her, she has shown me ways to relax, chill out and let my kids be kids. She is the kick in the butt I needed to being healthier and making sure my family eats the foods we should be eating. For my grandmother and great grandmother...I have never seen a more perfect example of a true lady and I only hope that I am half the lady you are. And of course my own mother. She is by far my best example of the type of mother I would like to be someday.
So, hopefully all the people I really care about will read this and better understand my answers to the questions. I wish I could have done a print interview instead of an on camera one. I am much better when I have an opportunity to think about what I am saying and can go back an correct my answers when I feel like I have totally made an ass of myself.
Friday, April 19, 2013
Thursday, March 28, 2013
Cath is Done
So Tuesday was the day. The day that I have been dreading since January. We took C to Tampa on Monday night so we could be at the hospital bright and early Tuesday morning for her cath. Thank goodness she really was the first case and her cath started right at 8:30am as scheduled. There is absolutely nothing worse than having the whole day drag on and on with a very thirsty, very hungry and very bored toddler.
C of course was a champ.
The nurse was unable to get an iv in prior to going into the cath lab so the anesthesiologist said he would place the iv once she was under (this happens at least 85% of the time with C). Even though I do hate to have C stuck multiple times I am glad when they cannot get the iv because then I can go all the way into the cath lab with her and stay with her until she goes to sleep. I know she feels better having me there with her and there is so much less drama. Much better for mama too.
This cath was to measure all of C's pressures and test close her fenestration. The prevailing thought on why C is still so blue from her Fontan last April is that she is shunting too much blood through the fenestration. This hole that is made during surgery has shown to help kids recover faster after the Fontan and usually closes all on its own eventually. Of course C has to be one of the few with a wide open fenestration and too much blue blood still mixing in her heart. The cath doctor explained all he would do, etc and she was off to the lab.
We waited and waited. C did fine during the cath but she did have some atrial tachycardia during her trans-esophageal echo. This is a special echo the cardiologist does before all heart surgeries. These are even more accurate then the normal surface echos. Fortunately the tach was short lived and she converted back to sinus all on her own. Still scary for me though because this is the first time I have heard that she went into tach during a cath. Ugh. But, the doctors did not need to intervene to get her out so that is good. Her meds are still working. I keep hoping and praying that as she gets bigger and her heart gets bigger that some of these issues with the tach will go away, which they can.
The good news from the cath is that with her fenestration closed, C sats at 92. Holy wow! 92. 92 is a good 20 points higher than where she sats during the day now. We were suitably impressed. And grateful to know that with the fenestration closed C will be in the 90's with her sats. And knowing that the cardiogist is correct in thinking that this is the reason she is blue, and not some other horrible reason why, is such a relief.
One of our very good family friends insisted that we needed to have this done with C. I have been reading more and more about touch healing and I am all for trying anything that will help C. In the picture above you can just see the ladies hand on C's chest. I really appreciate Mrs. V telling us about this being available at the hospital.
Even though the cath doctor did not actually do anything interventionally, he wanted her to stay in the cardiac icu overnight because of the tach he saw during the cath. We had already planned to be there overnight so was not a big deal. Would have loved to come home but glad we got to see just about all of our very favorite nurses and PA's. Everyone was so impressed and amazed with how well she is doing and how awesome she looks. The last time they all saw her she was still very, very sick. So, getting to see her doing so well, I am glad they could do so.
I am not sure where our journey will go from here. Only time will tell us if C's pulmonary veins are shot and we are heading towards double transplant or if they veins are just the way they are and we can close her fenestration when she is older, bigger and even stronger than now. In a way, we are getting a year's reprieve and right now, I will take it.
C of course was a champ.
The nurse was unable to get an iv in prior to going into the cath lab so the anesthesiologist said he would place the iv once she was under (this happens at least 85% of the time with C). Even though I do hate to have C stuck multiple times I am glad when they cannot get the iv because then I can go all the way into the cath lab with her and stay with her until she goes to sleep. I know she feels better having me there with her and there is so much less drama. Much better for mama too.
This cath was to measure all of C's pressures and test close her fenestration. The prevailing thought on why C is still so blue from her Fontan last April is that she is shunting too much blood through the fenestration. This hole that is made during surgery has shown to help kids recover faster after the Fontan and usually closes all on its own eventually. Of course C has to be one of the few with a wide open fenestration and too much blue blood still mixing in her heart. The cath doctor explained all he would do, etc and she was off to the lab.
We waited and waited. C did fine during the cath but she did have some atrial tachycardia during her trans-esophageal echo. This is a special echo the cardiologist does before all heart surgeries. These are even more accurate then the normal surface echos. Fortunately the tach was short lived and she converted back to sinus all on her own. Still scary for me though because this is the first time I have heard that she went into tach during a cath. Ugh. But, the doctors did not need to intervene to get her out so that is good. Her meds are still working. I keep hoping and praying that as she gets bigger and her heart gets bigger that some of these issues with the tach will go away, which they can.
The good news from the cath is that with her fenestration closed, C sats at 92. Holy wow! 92. 92 is a good 20 points higher than where she sats during the day now. We were suitably impressed. And grateful to know that with the fenestration closed C will be in the 90's with her sats. And knowing that the cardiogist is correct in thinking that this is the reason she is blue, and not some other horrible reason why, is such a relief.
Now the not so good news. Although C's pressures are still perfect and she tolerated the test closing of the fenestration very well, the doctor did not actually close her fenestration. He is concerned about her pulmonary veins. So not good. All heterotaxy kids have issues with the pulmonary veins (these bring the blue blood back to the lungs to be oxygenated). In fact, two of C's heart surgeries dealt with repairing these veins. I say repairing very loosely as these veins are not able to be operated on and if these veins are shot, then there is currently nothing else that can be done to save them. The only option is lung transplant. We have talked extensively about C's pulmonary veins and the consensus has always been that her veins look good. They are big and open. Not narrowed or stenosed. However, during C's TEE the cath doctor and other cardiologist noticed abnormalities with the veins. The way it was explained to me is that the veins look to be thicker than they should be, more like the outside of an artery (more muscle) than a vein. The blood that is supposed to flow through the veins back to the lungs is all passive flow (per the Fontan circulation). However, because the veins appear to be thick, the blood flow is actually being restricted as the veins are pulsing (like an artery would). So, the cath doctor and cardiologist doing the TEE, decided in the abundance of caution that they would not close her fenestration. The thought being is that if the fenestration is closed then the lungs have no relief (or pop off) to reduce the pressure in the lungs. If that happens and the veins are bad (and are getting worse) then C would go into heart failure. With the fenestration open, should the veins be going bad, then the pressure can be released through the hole and C would just get more blue and instead of going into failure it would buy the doctors some more time. The cath doctor is not positive this is an issue that is getting worse. He pulled up older echos from previous visits and he said he could see these abnormalities on those echos as well. He said, in hindsight, it certainly explains why she limped along so badly and had so much fluid collection after the Fontan. So now we just have to wait. The doctor wants to monitor C for the next year to see if the veins are changing (getting worse) versus always being this way and now they are seeing this more clearly because she is so much bigger.
So the news was pretty neutral. She continues to need the oxygen at night when she is sleeping but since it really does not help during the day she can be off of it as much as she wants. We will still keep all her stuff though because there are times now when she will be huffing and puffing after running or playing to hard or is too cold from swimming and needs the oxygen boost. She also will not be starting sildenafil (viagra) as previously discussed because sildenafil will not help this issue at all.
Other than that not so great news, C was fine with the rest of the cath. This time we had a practitioner with Healing Touch come in and do healing touch with C after the cath. I really think this was helpful in keeping C nice and calm while she was coming out of anesthesia and getting her back to her normal self.
One of our very good family friends insisted that we needed to have this done with C. I have been reading more and more about touch healing and I am all for trying anything that will help C. In the picture above you can just see the ladies hand on C's chest. I really appreciate Mrs. V telling us about this being available at the hospital.
Even though the cath doctor did not actually do anything interventionally, he wanted her to stay in the cardiac icu overnight because of the tach he saw during the cath. We had already planned to be there overnight so was not a big deal. Would have loved to come home but glad we got to see just about all of our very favorite nurses and PA's. Everyone was so impressed and amazed with how well she is doing and how awesome she looks. The last time they all saw her she was still very, very sick. So, getting to see her doing so well, I am glad they could do so.
I am not sure where our journey will go from here. Only time will tell us if C's pulmonary veins are shot and we are heading towards double transplant or if they veins are just the way they are and we can close her fenestration when she is older, bigger and even stronger than now. In a way, we are getting a year's reprieve and right now, I will take it.
Friday, February 15, 2013
Cardiology Update
Tuesday we took C to Tampa to see the electrical cardiologist. Nothing new or out of the ordinary as this was her 6 month check. However, we had to see the other EP in the practice as we still cannot see the EP cardiologist she has been seeing. Stupid non-compete clause and litigation. Don't even want to get started on that.
Good thing is the doctor was fully up to date on C. I think because we pitched such a fit about not being able to still see the other doctor they are really trying to accommodate us. C is not anywhere near a typical heart patient and just one tiny thing being missed could cause huge repercussions for her. Found out her latest holter is in the acceptable range (does show small blips of tachycardia) but is actually improved from her previous holter. The doctor is also very pleased that we are getting this much stability and control with her being on what he termed "a relatively small dose" of the medicine. We were not too happy that he wants to leave her on this medicine until she starts showing signs that there is a problem (this medicine is highly toxic with lots and lots of nasty side effects) but I am ok with taking a more conservative approach right now. The doctor we are seeing right now has been in the practice for over 30 years and has tons of knowledge so I trust that he knows what he is doing and that he is doing what he thinks will be the best course of treatment for C.
He also does not want to do anything interventionally with her right now. He does not feel that he would really accomplish much by doing and EP study right now and does not really want to put her under that much stress. He is ok with her having the cath to close her fenestration.
So. With all this, looks like we will be doing cath sometime soon. Will be just to test close the fenestration to see if she tolerates the closing. If she does tolerate the closing while in the cath lab then the doctor will permanently close the hole. This is really not that big a deal as the hole was put there after surgery and will eventually close on its own anyway. Plus, it is standard procedure to go in and close up the fenestration after a year. I am not looking forward to putting C through another cath but if this will help her sats and get her off the oxygen then this will all be for the good.
Not sure when we will be scheduled but probably in the nest two months. Hoping it will be far enough out that we are not putting her in the hospital with all this flu still going around. Her contracting the flu would be devastating.
Forgot to mention the best part of the visit (other than that C is being well controlled with meds). The doctor told us that on the grand scale that the tachycardia arrhythmia would be 3rd on his list of worries. After, the big number one of infection and number tow, blood clots. So, I feel a little better that he feels these arrhythmia's are not the most pressing of concerns and we need to approach the electrical issues the same as we approach the diagnostic (structural) defects.
Look for pictures from the night parade after this weekend. The big parade is Saturday night.
Good thing is the doctor was fully up to date on C. I think because we pitched such a fit about not being able to still see the other doctor they are really trying to accommodate us. C is not anywhere near a typical heart patient and just one tiny thing being missed could cause huge repercussions for her. Found out her latest holter is in the acceptable range (does show small blips of tachycardia) but is actually improved from her previous holter. The doctor is also very pleased that we are getting this much stability and control with her being on what he termed "a relatively small dose" of the medicine. We were not too happy that he wants to leave her on this medicine until she starts showing signs that there is a problem (this medicine is highly toxic with lots and lots of nasty side effects) but I am ok with taking a more conservative approach right now. The doctor we are seeing right now has been in the practice for over 30 years and has tons of knowledge so I trust that he knows what he is doing and that he is doing what he thinks will be the best course of treatment for C.
He also does not want to do anything interventionally with her right now. He does not feel that he would really accomplish much by doing and EP study right now and does not really want to put her under that much stress. He is ok with her having the cath to close her fenestration.
So. With all this, looks like we will be doing cath sometime soon. Will be just to test close the fenestration to see if she tolerates the closing. If she does tolerate the closing while in the cath lab then the doctor will permanently close the hole. This is really not that big a deal as the hole was put there after surgery and will eventually close on its own anyway. Plus, it is standard procedure to go in and close up the fenestration after a year. I am not looking forward to putting C through another cath but if this will help her sats and get her off the oxygen then this will all be for the good.
Not sure when we will be scheduled but probably in the nest two months. Hoping it will be far enough out that we are not putting her in the hospital with all this flu still going around. Her contracting the flu would be devastating.
Forgot to mention the best part of the visit (other than that C is being well controlled with meds). The doctor told us that on the grand scale that the tachycardia arrhythmia would be 3rd on his list of worries. After, the big number one of infection and number tow, blood clots. So, I feel a little better that he feels these arrhythmia's are not the most pressing of concerns and we need to approach the electrical issues the same as we approach the diagnostic (structural) defects.
Look for pictures from the night parade after this weekend. The big parade is Saturday night.
Monday, February 11, 2013
We Did A Parade
Every year, there are two parades that happen in my town. One is for children only and for the last two years we have been saying that we wanted to make a float for C and promote awareness for CHD's. The children's parade is always right in the middle of CHD awareness week and this year we actually did make the float and ride in the parade. We made special shirts, had lots of decorations, lots of help and lots of walkers. C was the star of the show and did her best to charm all the parade people. We handed out heart beads and information. My sister had two different families tell her that their own children were also CHD kiddos. I think we accomplished our mission...raising awareness.
On a side note, we took third place in our division (yay!) and even more impressive, my husband was personally asked by the parade chairman to participate in the big parade this Saturday. Over 200,000 people to reach out to...lets keep spreading the news.
C is just one of the 1 in 100.
On a side note, we took third place in our division (yay!) and even more impressive, my husband was personally asked by the parade chairman to participate in the big parade this Saturday. Over 200,000 people to reach out to...lets keep spreading the news.
C is just one of the 1 in 100.
Tuesday, February 5, 2013
What is Heterotaxy?
Carolena has Heterotaxy Syndrome, a rare, complex and complicated make-up of organ defects that mostly affect her heart. She was born with only half of a functioning heart which puts her in the category of single ventricle anomolies. Although she is similar to children with Hypoplastic Left Heart Syndrome, she has other issues she must face that children with HLHS do not. Our biggest challenge, outside of her single ventricle and not having a spleen, is that she started having deadly arrhythmias at 9 months old. Fortunately, she is stable with medication and has not needed too much intervention. The electrical issues are the scariest thing for us as we never know when they will strike and if she will respond to treatment. We were well versed and prepared for a child with HLHS, not so much for a child with Heterotaxy Syndrome. For more information here are some great links:
http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx
http://www.chop.edu/service/cardiac-center/heart-conditions/heterotaxy-syndrome.html
http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx
http://www.chop.edu/service/cardiac-center/heart-conditions/heterotaxy-syndrome.html
Friday, January 11, 2013
A New Year
Yesterday we met with the cath cardiologist. I really dread the appointments with this doctor. Not because I dislike him, actually quite the opposite, I simply adore him but I dread these appointments because once we see him I know we are looking at doing some kind of procedure, most likely a heart cath. Ugh.
I knew this day was coming. I knew that C would eventually need another heart cath. I know that she will never, ever be to a point where she will no longer need any procedures. Knowing all this, still this is not any easier.
However, yesterday was fine. C did well except in the beginning. I think she may still have some residual memory of the hospital/facility in Tampa as she was acting very scared during her work-up/eval. She was unusually quite and still. Very not like her. She generally is in the nurses face, telling her what to do and how to do it. C likes to help and will put on the ekg stickers, help with the blood pressure cuff, help with the pulse ox and loves to push the buttons to turn them all on. Not yesterday, she laid completely flat on her back and would not move. So, that was a little freaky but after that was done she was good and started to act more normally. We generally do our cardio visits in Sarasota or even St. Pete so I think she must have thought that since we were in Tampa something big must be going on.
Fortunately for all of us, C's echo looked good and the only thing that remains to be a problem is her lower O2 sats. She is still on oxygen, although it only really makes a difference at night. So, the cath doctor wanted to talk about closing her fenestration. He could tell from her echo that is large and wide open. Since all the other issues that could cause her to be blue have been ruled out the cath doctor is very confident that Cs sats are still low due to too much blood shunting across her very large fenestration. He talked to us about doing a cath, rechecking everything and then test closing her fenestration. If she tolerates the closure while in the cath lab, then he would permanently close the fenestration. With the fenestration closed then Cs sats would come up. That is the plan at least. The doctors all seem a whole lot more confident about this now then they did a few months ago.
The other problem we have (and of course it is not a small problem) is that Cs EP (electrical) cardio left the practice and is now in Orlando. This should not be a problem as we do not mind driving to see him and would still like him to be Cs doctor however when we tracked him down and spoke with his office we were informed that he could not see her due to legal issues. Awesome. The doctor did call and speak with Kevin and confirmed this so now we are very aggravated and frustrated to know that C has been reduced to nothing more important then some companies bottom line. If we still want to see her EP then we should be allowed to, not be told that we cannot because then he would be breaking a non compete. Really?
So now we are kind of in a holding pattern again. The doctors need to get all this stuff worked out since the cath doctor wants to get a good plan in place for her electrical issues before closing her fenestration. He need to know what the EP wants to do about getting her off the Amiodarone and onto something safer and whether or not he wants to do another EP study. Once the fenestration is closed then the EP doctor loses his good, easy access to the atria where all of Cs problems exist. He could still get to it if he has to but the cath doctor wants to make sure all this other stuff is one prior to cutting off the access.
The good in all of this is that C is still doing well. So well in fact that she is back to her old, crazy, wild self. She runs and jumps and plays hard with her brothers. She adores the "school" she gets to do with her Pre-K teacher. She is really making improvements with her speech thanks to her speech therapist. I can get her to consistently say "I love you" now and it is just so cute. Although she is still not eating she is still interested in food and drinks and appropriately uses a fork, spoon and cup. She loves mimicking all of us, especially me and will do girly stuff like brush her hair and put on make-up. She is such a little love and brings so much fun and lightness to our house. I am so very glad she is her normal again. Although I am not at all looking forward to sorting out all this cath stuff, changing her anti-arrhythmia meds and putting her through two possible caths I would be super glad to get her off this oxygen so she can really enjoy all the things she loves, like going on the boat, swimming, jumping on the trampoline, the swings and slides at the park and generally just chasing her brothers without getting winded and without having to drag stupid oxygen tanks with us wherever we go.
I knew this day was coming. I knew that C would eventually need another heart cath. I know that she will never, ever be to a point where she will no longer need any procedures. Knowing all this, still this is not any easier.
However, yesterday was fine. C did well except in the beginning. I think she may still have some residual memory of the hospital/facility in Tampa as she was acting very scared during her work-up/eval. She was unusually quite and still. Very not like her. She generally is in the nurses face, telling her what to do and how to do it. C likes to help and will put on the ekg stickers, help with the blood pressure cuff, help with the pulse ox and loves to push the buttons to turn them all on. Not yesterday, she laid completely flat on her back and would not move. So, that was a little freaky but after that was done she was good and started to act more normally. We generally do our cardio visits in Sarasota or even St. Pete so I think she must have thought that since we were in Tampa something big must be going on.
Fortunately for all of us, C's echo looked good and the only thing that remains to be a problem is her lower O2 sats. She is still on oxygen, although it only really makes a difference at night. So, the cath doctor wanted to talk about closing her fenestration. He could tell from her echo that is large and wide open. Since all the other issues that could cause her to be blue have been ruled out the cath doctor is very confident that Cs sats are still low due to too much blood shunting across her very large fenestration. He talked to us about doing a cath, rechecking everything and then test closing her fenestration. If she tolerates the closure while in the cath lab, then he would permanently close the fenestration. With the fenestration closed then Cs sats would come up. That is the plan at least. The doctors all seem a whole lot more confident about this now then they did a few months ago.
The other problem we have (and of course it is not a small problem) is that Cs EP (electrical) cardio left the practice and is now in Orlando. This should not be a problem as we do not mind driving to see him and would still like him to be Cs doctor however when we tracked him down and spoke with his office we were informed that he could not see her due to legal issues. Awesome. The doctor did call and speak with Kevin and confirmed this so now we are very aggravated and frustrated to know that C has been reduced to nothing more important then some companies bottom line. If we still want to see her EP then we should be allowed to, not be told that we cannot because then he would be breaking a non compete. Really?
So now we are kind of in a holding pattern again. The doctors need to get all this stuff worked out since the cath doctor wants to get a good plan in place for her electrical issues before closing her fenestration. He need to know what the EP wants to do about getting her off the Amiodarone and onto something safer and whether or not he wants to do another EP study. Once the fenestration is closed then the EP doctor loses his good, easy access to the atria where all of Cs problems exist. He could still get to it if he has to but the cath doctor wants to make sure all this other stuff is one prior to cutting off the access.
The good in all of this is that C is still doing well. So well in fact that she is back to her old, crazy, wild self. She runs and jumps and plays hard with her brothers. She adores the "school" she gets to do with her Pre-K teacher. She is really making improvements with her speech thanks to her speech therapist. I can get her to consistently say "I love you" now and it is just so cute. Although she is still not eating she is still interested in food and drinks and appropriately uses a fork, spoon and cup. She loves mimicking all of us, especially me and will do girly stuff like brush her hair and put on make-up. She is such a little love and brings so much fun and lightness to our house. I am so very glad she is her normal again. Although I am not at all looking forward to sorting out all this cath stuff, changing her anti-arrhythmia meds and putting her through two possible caths I would be super glad to get her off this oxygen so she can really enjoy all the things she loves, like going on the boat, swimming, jumping on the trampoline, the swings and slides at the park and generally just chasing her brothers without getting winded and without having to drag stupid oxygen tanks with us wherever we go
Friday, September 28, 2012
Stability
C is stable. Good news and bad news. I would like to focus just on the good but there is always bad lurking just behind the good. I think C being termed "stable" is a way to get around the fact that not one of C's doctors really have any answers to explain what is going on right now with C. Of course the most basic answers are, she has heterotaxy and her body is still not really adapting to the new physiology of the Fontan. However, C continues to confound everyone.
We know she has lower O2 sats but you sure would not know by looking at her. Yes, she is more blue but if you are not looking for the blueness you just might not notice. I see the blueness, her doctors see the blueness but most people do not notice as she is generally moving too fast for anyone to see anything but a blur. She is climbing on top of everything and into everything. She runs, jumps, turns in circles, stands on her head, does forward rolls and with nary a huff, puff or wheeze. She keeps up with her brothers and is beginning to give up naps completely (again). Her cardiologist is on board with us that the 24/7 oxygen does not really seem to work. She needs the O2 at night but during the day her sats are low and the O2 does not really bring them up. She should not be this active and tolerant with the lower sats if she truly is not tolerating the Fontan.
Cognitively C is leaping ahead as well. She has always been on track and age appropriate but took a huge downturn and regressed post Fontan. Those days are fast fading into the past. C receives one hour a week of speech therapy and one hour a week with a medical homebound Pre K teacher. In just one month C has relearned lost skills, like coloring, and is bounding ahead in her speaking. She is using 2 and 3 word combinations now and is beginning to request. C has always understood us and knows what is going on but she has never communicated back with us. Her communication has always been reactionary instead of proactive. She has rarely asked for items or asked to do things but in the last 2 weeks she is really finding her voice. Her requesting is becoming more frequent and consistent. So much so, I am beginning to really consider potty training. All the positive forward movement cognitively makes the neurologist happy. He feels she is doing great and we may get to stop the anti-seizure meds if she keeps doing so well and has no seizure activity. She will have an eeg at her next appointment and the neurologist will make a determination from the eeg.
C continues to need her anti-arrhythmia meds but her rhythm and rate have been controlled very well with the meds. I had a brief moment of panic when I found out C's electrical cardiologist would be leaving the practice. I seriously broke down and cried and questioned why. Then I found out he is only going to Orlando and we can still see him. I was much relieved as I really trust him. He has brought C out of two deadly arrhythmia's and he just knows her so well. Plus, he has plans to get her off the amiodarone, which long term, this medicine will do far more damage than good. He is more aggressive than other EP's and will do whatever he can to get her safely transitioned to another med that has fewer negative side effects.
C's eating, while not improved to the point where she will eat and drink in substantive quantities is finally back and possibly improved pre-Fontan. After having 8 glorious weeks post Fontan of thinking we were really making headway, like a switch, the eating and drinking stopped. We have had a very tough and discouraging road with her eating and drinking and also not sleeping through the night for the last 2 months due to waking up in the very early morning hours to gag, wretch and vomit. However, the vomiting during the day has settled down, we added Zofran to combat nausea in the early morning hours and she is back to her normal.
While we still do not have an answer to why she is continually running fevers no one is super concerned. We heard back from the infectious disease doctor that C does not have any recurring virus, illness or disease. She did not contract HIV from all of the blood or blood parts she received and we will just continue to do what we do when she runs a fever. The only thing that the infectious disease doctor found was a low T cell count. But she reassured us that if C was showing a low T cell count and had HIV she would have had a positive HIV test. Since C does not have any disease she referred us to an immunologist. Not really sure we need to keep going with this as C has no spleen. Of course she is going to have reduced immunity. This is a new chapter we have yet to write.
The fluid collection seems to be resolving as well. Even though she did have some fluid a month ago when we saw her cardiologist he did not feel he needed to do an echo when we saw him yesterday. I assume this means he feels her body is finally stopping with all the inflammation. She is still on the diuretics but hopefully for only a few more months.
So, stable can in fact be a good thing. A great thing.
However, C cannot remain where she is forever. This is the nature of her severe heart defects. Which leads to why being stable is not so good. In fact, can be bad for C.
As she gets older, her body will demand far more oxygen and she will tire quickly. Although she can continue to be tube fed forever, I would like to get her off the tube and eating. Keeping her system in balance becomes much harder as she ages due to the increasing need of vitamins, minerals, electrolytes, calories, etc. Even cognitively, C needs to be pushed to progress. While she is doing great right now, as she ages her deficiencies become more apparent and dangerous. She needs to have good O2 sats and good cardiac output to continue to grow and improve. If she stays exactly where she is right now with her O2 sats and cardia output, all the good listed above will disappear to be replaced with a very sick little girl who will just exist and not actually live.
We will meet with the cath cardiologist in January. I asked why we needed to do another cath. What I have figured out is that a cath is the only way for the doctors to try and find any answers to why C is this way. A cath will tell them if her number and pressures are good. Although we have done this before, I guess the feeling is maybe something could have changed or developed. The point of the cath will also be to determine if C can tolerate having her fenestration closed. I find all this pretty interesting because her fenestration will close over time without having any intervention and I do not see how something developing now would make a difference when C has been having these issues since surgery. We will get our chance to ask more questions in January. Not sure exactly how many answers we will get but at least we do not need to do anything for now and I know, deep down, her cardiologist will do whatever he can to make sure C is able to fully live, not just exist. We are very much looking forward to a low key, relaxing holiday season with little medical intervention.
We know she has lower O2 sats but you sure would not know by looking at her. Yes, she is more blue but if you are not looking for the blueness you just might not notice. I see the blueness, her doctors see the blueness but most people do not notice as she is generally moving too fast for anyone to see anything but a blur. She is climbing on top of everything and into everything. She runs, jumps, turns in circles, stands on her head, does forward rolls and with nary a huff, puff or wheeze. She keeps up with her brothers and is beginning to give up naps completely (again). Her cardiologist is on board with us that the 24/7 oxygen does not really seem to work. She needs the O2 at night but during the day her sats are low and the O2 does not really bring them up. She should not be this active and tolerant with the lower sats if she truly is not tolerating the Fontan.
Cognitively C is leaping ahead as well. She has always been on track and age appropriate but took a huge downturn and regressed post Fontan. Those days are fast fading into the past. C receives one hour a week of speech therapy and one hour a week with a medical homebound Pre K teacher. In just one month C has relearned lost skills, like coloring, and is bounding ahead in her speaking. She is using 2 and 3 word combinations now and is beginning to request. C has always understood us and knows what is going on but she has never communicated back with us. Her communication has always been reactionary instead of proactive. She has rarely asked for items or asked to do things but in the last 2 weeks she is really finding her voice. Her requesting is becoming more frequent and consistent. So much so, I am beginning to really consider potty training. All the positive forward movement cognitively makes the neurologist happy. He feels she is doing great and we may get to stop the anti-seizure meds if she keeps doing so well and has no seizure activity. She will have an eeg at her next appointment and the neurologist will make a determination from the eeg.
C continues to need her anti-arrhythmia meds but her rhythm and rate have been controlled very well with the meds. I had a brief moment of panic when I found out C's electrical cardiologist would be leaving the practice. I seriously broke down and cried and questioned why. Then I found out he is only going to Orlando and we can still see him. I was much relieved as I really trust him. He has brought C out of two deadly arrhythmia's and he just knows her so well. Plus, he has plans to get her off the amiodarone, which long term, this medicine will do far more damage than good. He is more aggressive than other EP's and will do whatever he can to get her safely transitioned to another med that has fewer negative side effects.
C's eating, while not improved to the point where she will eat and drink in substantive quantities is finally back and possibly improved pre-Fontan. After having 8 glorious weeks post Fontan of thinking we were really making headway, like a switch, the eating and drinking stopped. We have had a very tough and discouraging road with her eating and drinking and also not sleeping through the night for the last 2 months due to waking up in the very early morning hours to gag, wretch and vomit. However, the vomiting during the day has settled down, we added Zofran to combat nausea in the early morning hours and she is back to her normal.
While we still do not have an answer to why she is continually running fevers no one is super concerned. We heard back from the infectious disease doctor that C does not have any recurring virus, illness or disease. She did not contract HIV from all of the blood or blood parts she received and we will just continue to do what we do when she runs a fever. The only thing that the infectious disease doctor found was a low T cell count. But she reassured us that if C was showing a low T cell count and had HIV she would have had a positive HIV test. Since C does not have any disease she referred us to an immunologist. Not really sure we need to keep going with this as C has no spleen. Of course she is going to have reduced immunity. This is a new chapter we have yet to write.
The fluid collection seems to be resolving as well. Even though she did have some fluid a month ago when we saw her cardiologist he did not feel he needed to do an echo when we saw him yesterday. I assume this means he feels her body is finally stopping with all the inflammation. She is still on the diuretics but hopefully for only a few more months.
So, stable can in fact be a good thing. A great thing.
However, C cannot remain where she is forever. This is the nature of her severe heart defects. Which leads to why being stable is not so good. In fact, can be bad for C.
As she gets older, her body will demand far more oxygen and she will tire quickly. Although she can continue to be tube fed forever, I would like to get her off the tube and eating. Keeping her system in balance becomes much harder as she ages due to the increasing need of vitamins, minerals, electrolytes, calories, etc. Even cognitively, C needs to be pushed to progress. While she is doing great right now, as she ages her deficiencies become more apparent and dangerous. She needs to have good O2 sats and good cardiac output to continue to grow and improve. If she stays exactly where she is right now with her O2 sats and cardia output, all the good listed above will disappear to be replaced with a very sick little girl who will just exist and not actually live.
We will meet with the cath cardiologist in January. I asked why we needed to do another cath. What I have figured out is that a cath is the only way for the doctors to try and find any answers to why C is this way. A cath will tell them if her number and pressures are good. Although we have done this before, I guess the feeling is maybe something could have changed or developed. The point of the cath will also be to determine if C can tolerate having her fenestration closed. I find all this pretty interesting because her fenestration will close over time without having any intervention and I do not see how something developing now would make a difference when C has been having these issues since surgery. We will get our chance to ask more questions in January. Not sure exactly how many answers we will get but at least we do not need to do anything for now and I know, deep down, her cardiologist will do whatever he can to make sure C is able to fully live, not just exist. We are very much looking forward to a low key, relaxing holiday season with little medical intervention.
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