So Saturday...day three after surgery. After C had been stable the day before and overnight, I was really hoping I would see more of an improvement when I came back to the hospital. Kevin had reported she did well overnight and he even got to hold her briefly while the nurses changed out her bed and weighed her. Can I just express how jealous I was! I have not snuggled with my sweet girl since early Tuesday afternoon and I miss her.
Anyway, I was hoping to see more response from C when I saw her Saturday morning. Boy was I disappointed when I got there and she barely looked at me. I am not sure if she is just stil really out of it or just really pissed at me. Either way, it sucks. I know she is tired, weak and still just beat down from her whole ordeal after surgery and then the return of the arrhythmia but I thought I would at least get a mama. This is just killing me to see her in such misery that she is limp, lethargic and barely even responds to me.
We spent the whole day listening to her favorite music through the Jambox speaker, reading her favorite books, playing her favorite games on the tablet and watching her favorite movies on the apple tv (for anyone who knows my husband you know he has her hospital room all decked out with all the gadgets....um, yeah). I kept waiting to see any response from her while I read with her or danced and sang the silly songs...but nothing. Kyle and Todd even came by for another visit before heading home and she did not even really respond to them. Let me just tell you, by the time I left the hospital last night I was in tears. I am so terrified I will not get to bring my little girl home. I prayed and begged to just let me have her pain, take me instead, anything so she didi not have to suffer anymore. The stress is just kiling me and we are not even half way through this hospital stay. We are still around step one with like 10 more to go. I hate waking up each morning with dread and a huge knot in my stomach feeling like I am going to vomit. Due to Kevin staying with C at night I am able to get sleep so that does help but I just feel like as soon as my eyes open this whole nightmare is starting all over again. I hate seeing my boys leave to go home knowing that I will not see them for another week. I hate that my younger son is just as stressed by this. Todd has called, all on his own,at least 6 times to see how C is doing and asks Pappi and I how we are doing. He did not want to leave me yesterday and called soon after saying he is scared. I hate the C has had to suffer so much and is traumatized yet again. I hate that these rhythm issues continue to hang around and severely compromise C's ability to make it through surgery, make it through recovery and severely shortening her already short life expectancy. I hate that she had to be on the super, heavy duty anti-arrhythmia drug again which has horrible side effects the longer you use it. I hate that I am always going to panic about C getting sick and will probably freak out each time she is around other kids, if I let her around other kids at all. I hate that everytime she is in a deep sleep and is startled she wakes up terrified, pupils huge and shaking uncontrollably...it scares the crap out of me. I think we are both suffering from PTSD, not something I am making light of at all. Todd pretended he was scooping C up out of bed and sneaking her out of the hospital...I was right there with him. All of this just sucks, sucks, sucks.
C continues to have lower oxygen sats but they are still holding steady in low 80's to high 70's. Not horrible but not great. Her heart is still being externally paced at a rate of 135 with the hope that the pacing is giving the meds time to work to control the arrhythmia. She also is still really swollen and holding around 6 pounds, yes pounds, of fluid in her body. She is not allowed to have food, juice or even water in her stomach making it 5 days since she has had any real food. The only real positive yesterday, aside from the visit from Kyle and Todd, was that she had her foley cath removed, one of her 3 chest tubes going to her lungs removed and that her left lung is looking more and more clear each day.
And as much as I know I am over this, I know C is even more so. I really hope things start turning around. C deserves so much better than this.
Sunday, April 15, 2012
Saturday, April 14, 2012
Day Two Post Op
Friday started out with me getting back to the hospital quickly. I had finally left the hospital around 2:30am but C continued to act up with the arrhythmia the rest of the night so I went back to the hospital around 8am. Kevin had said it was not emergent but that C was still not doing great.
I get back here and although C is relatively stable she still just does not look well. She is still really foggy and groggy and just not looking good. Well, her morning blood draw revealed a super high white cell count possibly indicating an infection of some sort so cultures were taken and C was started on high powered antibiotics.
The EP cardiologist came by not too much later and tweaked her paced rhythm while watching the echo. He told us that we were not doom and gloom but not terribly great either. He also reminded me it would probably take a week to get control of this latest atrial tachycardia with breakthrough rhythm issues. I am really praying for the treatment plan of pacing her heart for the next couple of days plus two medications will break this rhythm and keep her out of it like it did 2 years ago when she had her first problems with the arrhythmias. The alternatives should this not work are not all that great. The medicines is on really have to work. The EP doctor came back at the end of the day before he left the hospital to check on her and he was happy with where she was maintaining.
C's oxygen saturations continue to be low. However, yesterday we could see that she is beginning to feel better. She was awake most of the afternoon and even got a visit from her big brothers. Even though she really did not show it, I know she was super excited to see them. We even saw a brief, tiny smile when she saw Todd and Kyle. She really loves them and it does her good to see them. I think it is good for them too.
The rest of the day and evening were calm. By the time I left for the hotel last night, C was showing sats at 82. I was so excited to see this. She is still not maintaining in the 80's yet but at least we are seeing a trend upward. She is still maxed out on her oxygen and nitric oxide through her cannula and must start showing more stability, better sats and clear left lung before they will even think of weaning the nitric and then wean the oxygen.
We still have a very, very, very long road before C is back to being healthy and even being considered to leave the hospital.
I get back here and although C is relatively stable she still just does not look well. She is still really foggy and groggy and just not looking good. Well, her morning blood draw revealed a super high white cell count possibly indicating an infection of some sort so cultures were taken and C was started on high powered antibiotics.
The EP cardiologist came by not too much later and tweaked her paced rhythm while watching the echo. He told us that we were not doom and gloom but not terribly great either. He also reminded me it would probably take a week to get control of this latest atrial tachycardia with breakthrough rhythm issues. I am really praying for the treatment plan of pacing her heart for the next couple of days plus two medications will break this rhythm and keep her out of it like it did 2 years ago when she had her first problems with the arrhythmias. The alternatives should this not work are not all that great. The medicines is on really have to work. The EP doctor came back at the end of the day before he left the hospital to check on her and he was happy with where she was maintaining.
C's oxygen saturations continue to be low. However, yesterday we could see that she is beginning to feel better. She was awake most of the afternoon and even got a visit from her big brothers. Even though she really did not show it, I know she was super excited to see them. We even saw a brief, tiny smile when she saw Todd and Kyle. She really loves them and it does her good to see them. I think it is good for them too.
The rest of the day and evening were calm. By the time I left for the hotel last night, C was showing sats at 82. I was so excited to see this. She is still not maintaining in the 80's yet but at least we are seeing a trend upward. She is still maxed out on her oxygen and nitric oxide through her cannula and must start showing more stability, better sats and clear left lung before they will even think of weaning the nitric and then wean the oxygen.
We still have a very, very, very long road before C is back to being healthy and even being considered to leave the hospital.
Friday, April 13, 2012
Day One Post Op
So back to the hospital I go on Thursday morning. Kevin reported C had a pretty good night. He had started to give her Gatorade around mid-night, put her glasses on and she was watching her favorite movie, Rio. I was happy she had a good night and was thinking, oh good, C got all the bad stuff and drama out of her system. I was really thinking she would just keep getting better as the day went on.
C's surgeon came by and talked to us again because everyone was still concerned about her lower oxygen sats. He mentioned several possibilities but the three he thought sounded the most reasonable for her lower sats was either 1) her fenestration, the hole put in her heart during surgery as a safety measure and a method for faster healing, was to big for her thus shunting too much blood through the hole and not sending enough to her lungs, 2) she has some massive collateral in there that was either missed in the cath or was not concerning enough in the cath to coil at the time but when he changed the pressure in her system, it opened up and is taking blood away from her heart or 3) due to her unique anatomy when he attached the conduit for the Fontan he had to put it in the same place where he placed her pulmonary veins in a previous surgery and the conduit is putting pressure on the veins. He eventually decided that it must be some collateral because the echo, pulmonary pressures and blood gasses do not support the vein pressure or too much blood shunting through her fenestration. So, he originally mentioned he could take back into surgery to fix the fenestration (talk about stopping my heart...just kill me now) or doing a cath too see what was going on and possibly coiling up any collaterals.
Well, C continued to show improvement throughout the day. Her oxygen saturations were slowly creeping up, even teasing us with showing 80 a couple times. Her echos continued to look good. Her chest x-rays were showing improvement in her left lung. Her blood gas tests were all showing normal levels. The cardiologist was pretty much ruling out cath for Friday because she really wanted to give her some more time. She was asking for and getting drinks and we were running Pediasure through her g-tube to get her ready for starting food the next day. The intensivist talked about starting to pull lines. We were absolutely going in the right direction. Around 3pm things started changing.
She started looking more peaked to me and less engaged (more lethargic) to me. I put on Happy Feet for her to watch and was giving her small sips of water when she feel back to sleep. Even though she seemed a little off I was just chalking it up to her having a major cath, major surgery and super hard recovery back to back. Well, how wrong was I. She went into tachycardia arrhythmia. Briefly. She broke it herself and being as though she was already getting the one anti-arrhythmia drug since after surgery, I was upset but when I saw her break it, I was thinking it was being managed.
She did not do anything else crazy so I was hoping she was okay.
Kevin got back after taking a nap at the hotel and we went to eat while my stayed with C. I think we were gone 30 minutes total. When we got back my mom told me she broke rhythm again, but was able to come out of it. So we are just watching her and Kevin and I both notice she just does not look so good. Mostly sleeping, not really asking for much to drink and not watching the movie Rio we had playig for her. I was just starting to think about leaving to go to the hotel when she went into atrial tachycardia again. And then she stayed there. And the nurses and doctors were doing everything they could to get her to break it. The doctor hete was speaking with C's EP cadiologist to coordinate what to do. They tried everything. They were able to stop the looping rhythm but were unable to bring the fast rate completely back down to normal. More drugs, more additives run. C's heart is just not cooperating. The doctors finally started pacing C with an external pace maker connected to her pacing wires. They were able to get her somewhat stable and I finally left to go back to the hotel around 2am. I realized staying any longer was not an option as my body was giving out. Of course I did not actually go to sleep until I heard from Kevin a few times assuring me C was not dying.
C continued to act up through the early morning and still has not broken the fast heart rate, atrial tachycardia. When I got up around 7:30, I called Kevin to check on C and was immediately on my way back to the hospital.
C's surgeon came by and talked to us again because everyone was still concerned about her lower oxygen sats. He mentioned several possibilities but the three he thought sounded the most reasonable for her lower sats was either 1) her fenestration, the hole put in her heart during surgery as a safety measure and a method for faster healing, was to big for her thus shunting too much blood through the hole and not sending enough to her lungs, 2) she has some massive collateral in there that was either missed in the cath or was not concerning enough in the cath to coil at the time but when he changed the pressure in her system, it opened up and is taking blood away from her heart or 3) due to her unique anatomy when he attached the conduit for the Fontan he had to put it in the same place where he placed her pulmonary veins in a previous surgery and the conduit is putting pressure on the veins. He eventually decided that it must be some collateral because the echo, pulmonary pressures and blood gasses do not support the vein pressure or too much blood shunting through her fenestration. So, he originally mentioned he could take back into surgery to fix the fenestration (talk about stopping my heart...just kill me now) or doing a cath too see what was going on and possibly coiling up any collaterals.
Well, C continued to show improvement throughout the day. Her oxygen saturations were slowly creeping up, even teasing us with showing 80 a couple times. Her echos continued to look good. Her chest x-rays were showing improvement in her left lung. Her blood gas tests were all showing normal levels. The cardiologist was pretty much ruling out cath for Friday because she really wanted to give her some more time. She was asking for and getting drinks and we were running Pediasure through her g-tube to get her ready for starting food the next day. The intensivist talked about starting to pull lines. We were absolutely going in the right direction. Around 3pm things started changing.
She started looking more peaked to me and less engaged (more lethargic) to me. I put on Happy Feet for her to watch and was giving her small sips of water when she feel back to sleep. Even though she seemed a little off I was just chalking it up to her having a major cath, major surgery and super hard recovery back to back. Well, how wrong was I. She went into tachycardia arrhythmia. Briefly. She broke it herself and being as though she was already getting the one anti-arrhythmia drug since after surgery, I was upset but when I saw her break it, I was thinking it was being managed.
She did not do anything else crazy so I was hoping she was okay.
Kevin got back after taking a nap at the hotel and we went to eat while my stayed with C. I think we were gone 30 minutes total. When we got back my mom told me she broke rhythm again, but was able to come out of it. So we are just watching her and Kevin and I both notice she just does not look so good. Mostly sleeping, not really asking for much to drink and not watching the movie Rio we had playig for her. I was just starting to think about leaving to go to the hotel when she went into atrial tachycardia again. And then she stayed there. And the nurses and doctors were doing everything they could to get her to break it. The doctor hete was speaking with C's EP cadiologist to coordinate what to do. They tried everything. They were able to stop the looping rhythm but were unable to bring the fast rate completely back down to normal. More drugs, more additives run. C's heart is just not cooperating. The doctors finally started pacing C with an external pace maker connected to her pacing wires. They were able to get her somewhat stable and I finally left to go back to the hotel around 2am. I realized staying any longer was not an option as my body was giving out. Of course I did not actually go to sleep until I heard from Kevin a few times assuring me C was not dying.
C continued to act up through the early morning and still has not broken the fast heart rate, atrial tachycardia. When I got up around 7:30, I called Kevin to check on C and was immediately on my way back to the hospital.
Surgery
Wednesday was surgery day. Since C was admitted to the hospital after the cath and we left in all the important lines from the cath so there was no real prep to do for surgery. Kevin stayed the night with C in the hospital so I did get some decent sleep which now I realize was the best thing for me. I got back to the hospital at 6:30am and C was wheeled back to the OR holding at 7:30am. We did the usual meet and greet with anesthesiology, or nurses and surgeon. C seemed fine, seemed to be doing okay from the cath the day before. We gave her hugs and kisses and said our byes for now. I know I was nervous but nothing different than the other times. We had been reassured by all the doctors and surgeon that she could handle surgery the day after the cath.
Surgery was fine. She did great during surgery. The surgeon was able to hook the ivc to the Gortex shunt and get the conduit in the right place. Due to her unique anatomy the surgeon ended up having to stop her heart for the procedure which he usually does not need to do for the Fontan but in her case he felt it was the safer way to go. She did fine going on and coming off bypass. The surgeon said the only little glitch was she was in a junctional rhythm coming out of surgery so they were pacing her heart a little. We were relieved as all seemed to be going well. After the surgeon spoke with us, he said it would be about an hour and a half before we would be able to see her in her room after recovery and settling in period in her room.
Well, an hour and a half passes and no word from the nurse. Not long after that the nurse manager comes out and lets us know C is back but she is having some difficulty and is taking longer to wake up and breathe on her own after being extubated. But, she is fine.
Okkkkkayyyyy....starting to freak out a little.
A little later C's nurse for the day came out to talk to us. We know her and she knows us from our last two stays so we are super comfortable with her. Anyway, she comes out and lets us know C is stuggling, they are working with her and she will let us see her just as soon as possible. Wait a little more and the nurse manager comes out again. By now I am wreck thinking C is dying back here and I canot get to her. Right as I am about to go busting down the doors to see her, our nurse sends another nurse out to come get us so we can see her.
I swear it was like watching an episode of ER but oddly without all the noise. People were everywhere, each doing something to C. We got to speak with her briefly and give her kisses then we stood right outside her room for probably another hour at least, watching while they continued to work to stabilize her. I cannot even express how grateful we are to have such a skilled and dedicated team working on C. They saved her life. I know they did.
Here's the key....C has been and continues to be a very sick little girl post-Fontan. We found out she rocked the actual surgery but soon after leaving the OR she crahsed fast. She was bleeding heavily, had gone into atrial tachycardia, her blood pressure was bottoming out, she would not wake up enough to breath on her own. They started working on her immediately in the recovery room, all the way down the hallways to the cardiac icu and continued in her room. She was receiving blood, blood products like red cells, platelets and all kinds of minerals. She was dumping stuff so fast, the nurses were really hopping with replacing what she was loosing as fast as they could. Everyone was finally able to get her stabilized and slowly people started leaving the room. When it was just down to C's main nurse left, she let me come in and be with C. I do not think I have been so scared and so helpless in my whole life. I realize now what I thought had been the worst part of this journey, C going into arrhythmia two years ago, was nothing compared to this. Everything after surgery was such a balancing act, getting C to wake up enough to breath but too much to fight. Getting meds in to break the tachycardia but not too much to lower her blood pressure anymore. Giving epinephrine to raise her blood pressure but not so much to raise it too high. Trying to figure out why her oxygen saturation was remaining so low after the surgery, when she should have sats in the 90's but hers were consistently hanging in the 60's. Totally terrifying knowing that things are wrong but not knowing what it is that is wrong. The intensivist had to insert another chest tube for her left lung, making that two tubes, because she had so much blood/fluid that her lung was super compressed.
Everyone came back to check on her, including her surgeon, who I was afraid was going to take her back to the OR to open her up again.
So after all the drama of surgery day, we were really praying for a restful night and good day one post-op. C did ok through the night, enough so I was able to go to the hotel and get some sleep while Kevin stayed with C again overnight.
Ummmm, yeah, what do they say about plans?
Surgery was fine. She did great during surgery. The surgeon was able to hook the ivc to the Gortex shunt and get the conduit in the right place. Due to her unique anatomy the surgeon ended up having to stop her heart for the procedure which he usually does not need to do for the Fontan but in her case he felt it was the safer way to go. She did fine going on and coming off bypass. The surgeon said the only little glitch was she was in a junctional rhythm coming out of surgery so they were pacing her heart a little. We were relieved as all seemed to be going well. After the surgeon spoke with us, he said it would be about an hour and a half before we would be able to see her in her room after recovery and settling in period in her room.
Well, an hour and a half passes and no word from the nurse. Not long after that the nurse manager comes out and lets us know C is back but she is having some difficulty and is taking longer to wake up and breathe on her own after being extubated. But, she is fine.
Okkkkkayyyyy....starting to freak out a little.
A little later C's nurse for the day came out to talk to us. We know her and she knows us from our last two stays so we are super comfortable with her. Anyway, she comes out and lets us know C is stuggling, they are working with her and she will let us see her just as soon as possible. Wait a little more and the nurse manager comes out again. By now I am wreck thinking C is dying back here and I canot get to her. Right as I am about to go busting down the doors to see her, our nurse sends another nurse out to come get us so we can see her.
I swear it was like watching an episode of ER but oddly without all the noise. People were everywhere, each doing something to C. We got to speak with her briefly and give her kisses then we stood right outside her room for probably another hour at least, watching while they continued to work to stabilize her. I cannot even express how grateful we are to have such a skilled and dedicated team working on C. They saved her life. I know they did.
Here's the key....C has been and continues to be a very sick little girl post-Fontan. We found out she rocked the actual surgery but soon after leaving the OR she crahsed fast. She was bleeding heavily, had gone into atrial tachycardia, her blood pressure was bottoming out, she would not wake up enough to breath on her own. They started working on her immediately in the recovery room, all the way down the hallways to the cardiac icu and continued in her room. She was receiving blood, blood products like red cells, platelets and all kinds of minerals. She was dumping stuff so fast, the nurses were really hopping with replacing what she was loosing as fast as they could. Everyone was finally able to get her stabilized and slowly people started leaving the room. When it was just down to C's main nurse left, she let me come in and be with C. I do not think I have been so scared and so helpless in my whole life. I realize now what I thought had been the worst part of this journey, C going into arrhythmia two years ago, was nothing compared to this. Everything after surgery was such a balancing act, getting C to wake up enough to breath but too much to fight. Getting meds in to break the tachycardia but not too much to lower her blood pressure anymore. Giving epinephrine to raise her blood pressure but not so much to raise it too high. Trying to figure out why her oxygen saturation was remaining so low after the surgery, when she should have sats in the 90's but hers were consistently hanging in the 60's. Totally terrifying knowing that things are wrong but not knowing what it is that is wrong. The intensivist had to insert another chest tube for her left lung, making that two tubes, because she had so much blood/fluid that her lung was super compressed.
Everyone came back to check on her, including her surgeon, who I was afraid was going to take her back to the OR to open her up again.
So after all the drama of surgery day, we were really praying for a restful night and good day one post-op. C did ok through the night, enough so I was able to go to the hotel and get some sleep while Kevin stayed with C again overnight.
Ummmm, yeah, what do they say about plans?
Wednesday, April 11, 2012
Cath Day
So yesterday we brought C back to Tampa for her pre-Fontan and electrical study heart cath. I have been dreading this day for so long. One, I did not want to get bad news and two, I knew once this was over she would be going into surgery the next day.
We were originally told to be at the hospital at 6 Tuesday morning. The time then was moved to 10am. By the time they were ready for her it was 2:30pm. Not unusual to get bumped back but makes for a very long day especially since we were already prepared for the cath to be very long.
C did great through the cath. She had no issues or problems and came through with flying colors. She had two different things done. The first was the diagnostic part to see if she would be a suitable candidate for the Fontan surgery. I was not super concerned with this part but was overjoyed when the doctor came out after about an hour and a half and was done with his part saying and I direct quote here, "her numbers are not just good, they are excellent." One of this doctors main jobs during the cath is to measure the pressure and resistence in her lungs. The lower the pressure, the better. He also brought us pictures showing us her wide open Glenn and her wide open pulmonary veins, where they come into her atrium. This is especially good news since blockage of this veins is what wil lead to pulmonary hypertension and even worse, double lung transplant. Oh the joys of this stuipd heterotaxy syndrome. However, overall the diagnostic part of the cath showed that C is ready and able to accept this next surgery.
Now for the bad news. The electrical study. This is the one I have been so nervous about and apparently, rightly so. The second doctor came out to talk to us when he was done and the news was not super great. Not only does C still have her arrhythmia but she has several arrhythmias. Ugh. The EP doctor was able to induce and map 2 atrial tachycardias and was able to ablate these. However, he also saw a couple more atrial tachs that popped but disappeared quickly. He said he saw them for maybe 2 to 3 seconds apiece. He also saw atrial flutter. Now here is the really bad news. He waz seeing the arrhythmias from "healthy" side of the heart, ie the side of the heart that was not operated on and has no defect or scar tissue. C's healthy tissue is producing the problems. They do not know why this happens and this is an area still being studied to figure out why a single ventricle atria will produce electrical issues in the healthy tissue. Yeah, it is that awesome.
Now for the somewhat good news. The doctor was able to ablate (burn) the areas he could map and he said it should take care of them. He spoke with C's surgeon yesterday and asked him about putting a freeze on the area where the flutter is coming from, again the healthy tissue in the atria. The surgeon said that due to C's make-up, he would not need to freeze that area as he would be removing that tissue. Both doctors agree this should help with the flutter. I really hope so as the EP doctor said C did not tolerate the flutter very well at all. Her blood pressure dropped and she was getting close to a danger area. Other good news is he said after he ablated the atrial tach areas and then revved her heart up and did some slight pacing he did not see any other areas pop up. But again we are in a wait and see as he did say in heterotaxy kids with single ventricles he has seen where the atrial tachs keep moving around. He will burn one area and then it will pop up in another area until he is chasing the thing and burning her whole atria which is not good.
Now some additional good news. This EP doctor did his fellowship study on this very issue and he said his research showed that kids who have the opposite of C, a slow heart rate, had the worst overall long term outcome. The next group was the kids who have ventricular tachs. Kids like C with atrial rhythms and super fast heart rates did fare better in the long run. We will see. He folowed all this up by saying he just has a hunch that C's heart is going to remain stronvpg for a long time. I was grateful for that.
Right now he is thinking he does not want to put C back on meds for the arrythmias. Especially while she is in the hospital he wants to se if she can go without them. He is very encouraged by the fact that C has done very well over the last few months without the heavy hitter arrythmia drug Amiodarone and done well without any drugs the last three days. We will know more after surgery and during her recovery. What I will be praying for most at this point is that as C gets bigger she will outgrow these issues. This is a possibility. Not the probable way but a possible way.
Kevin stayed with C last night in the hospital. She did well. Groggy but did start perking up. Poor baby was so thristy she sucked about 4 ounces of water off a little sponge. Kevin also fed he some pears last night as well so she would have a little something in her tummy. She slept right up to the nurses moving her down to the holding area to go to the OR for surgery this morning. She was pretty calm and did not really fuss or cry. Now we wait and hope and pray that this surgery goes well and she has a fast and complication free recovery.
We were originally told to be at the hospital at 6 Tuesday morning. The time then was moved to 10am. By the time they were ready for her it was 2:30pm. Not unusual to get bumped back but makes for a very long day especially since we were already prepared for the cath to be very long.
C did great through the cath. She had no issues or problems and came through with flying colors. She had two different things done. The first was the diagnostic part to see if she would be a suitable candidate for the Fontan surgery. I was not super concerned with this part but was overjoyed when the doctor came out after about an hour and a half and was done with his part saying and I direct quote here, "her numbers are not just good, they are excellent." One of this doctors main jobs during the cath is to measure the pressure and resistence in her lungs. The lower the pressure, the better. He also brought us pictures showing us her wide open Glenn and her wide open pulmonary veins, where they come into her atrium. This is especially good news since blockage of this veins is what wil lead to pulmonary hypertension and even worse, double lung transplant. Oh the joys of this stuipd heterotaxy syndrome. However, overall the diagnostic part of the cath showed that C is ready and able to accept this next surgery.
Now for the bad news. The electrical study. This is the one I have been so nervous about and apparently, rightly so. The second doctor came out to talk to us when he was done and the news was not super great. Not only does C still have her arrhythmia but she has several arrhythmias. Ugh. The EP doctor was able to induce and map 2 atrial tachycardias and was able to ablate these. However, he also saw a couple more atrial tachs that popped but disappeared quickly. He said he saw them for maybe 2 to 3 seconds apiece. He also saw atrial flutter. Now here is the really bad news. He waz seeing the arrhythmias from "healthy" side of the heart, ie the side of the heart that was not operated on and has no defect or scar tissue. C's healthy tissue is producing the problems. They do not know why this happens and this is an area still being studied to figure out why a single ventricle atria will produce electrical issues in the healthy tissue. Yeah, it is that awesome.
Now for the somewhat good news. The doctor was able to ablate (burn) the areas he could map and he said it should take care of them. He spoke with C's surgeon yesterday and asked him about putting a freeze on the area where the flutter is coming from, again the healthy tissue in the atria. The surgeon said that due to C's make-up, he would not need to freeze that area as he would be removing that tissue. Both doctors agree this should help with the flutter. I really hope so as the EP doctor said C did not tolerate the flutter very well at all. Her blood pressure dropped and she was getting close to a danger area. Other good news is he said after he ablated the atrial tach areas and then revved her heart up and did some slight pacing he did not see any other areas pop up. But again we are in a wait and see as he did say in heterotaxy kids with single ventricles he has seen where the atrial tachs keep moving around. He will burn one area and then it will pop up in another area until he is chasing the thing and burning her whole atria which is not good.
Now some additional good news. This EP doctor did his fellowship study on this very issue and he said his research showed that kids who have the opposite of C, a slow heart rate, had the worst overall long term outcome. The next group was the kids who have ventricular tachs. Kids like C with atrial rhythms and super fast heart rates did fare better in the long run. We will see. He folowed all this up by saying he just has a hunch that C's heart is going to remain stronvpg for a long time. I was grateful for that.
Right now he is thinking he does not want to put C back on meds for the arrythmias. Especially while she is in the hospital he wants to se if she can go without them. He is very encouraged by the fact that C has done very well over the last few months without the heavy hitter arrythmia drug Amiodarone and done well without any drugs the last three days. We will know more after surgery and during her recovery. What I will be praying for most at this point is that as C gets bigger she will outgrow these issues. This is a possibility. Not the probable way but a possible way.
Kevin stayed with C last night in the hospital. She did well. Groggy but did start perking up. Poor baby was so thristy she sucked about 4 ounces of water off a little sponge. Kevin also fed he some pears last night as well so she would have a little something in her tummy. She slept right up to the nurses moving her down to the holding area to go to the OR for surgery this morning. She was pretty calm and did not really fuss or cry. Now we wait and hope and pray that this surgery goes well and she has a fast and complication free recovery.
Friday, March 30, 2012
Follow Up Story by Local News
Our local FOX affiliate was kind enough to come out and do a follow-up story on Carolena. She will be heading to the hosptial on April 10 for a heart cath and surgery on will follow on April 11 as long as all goes well with the cath. The same friends who put on the 5k for C in July have put together the Prayer Vigil & Bake Sale this Sunday. Cannot ask for better exposure then the news to bring attention to children like C to raise awareness for the #1 defect in babies...heart defects.
http://www.fox4now.com/news/local/145009465.html#.T3UqP0lfjFE.facebook
http://www.fox4now.com/news/local/145009465.html#.T3UqP0lfjFE.facebook
Thursday, March 29, 2012
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