C had two appointments with cardiology today.
Yeah, it was just about as fun as it sounds.
Since C developed the arrhythmia we get to see not only the regular cardiologist for all of the structural issues but also the EP (electrical) cardiologist. We were a little confused at first with all this as I was under the distinct impression after being discharged from the hospital that we would need to see both. However, when Kevin called to schedule the appointments he got completely run around and kept getting the answer that we only needed to see the EP cardiologist. Very frustrating. Finally got it all worked out but took some finagling so we were not too sure what to expect today.
We ended up being there for 4 hours.
At least C got the full treatment. She had her ekg and echo and got to see both cardiologists. Apparently she is doing pretty good. We are not scheduled to go back to see either cardiologist for one whole month. Wow. Kevin and I were a little shocked but at this point we totally understand that no change and no news is very, very good. We are still very closely watching C as her oxygen saturation at night when she is sleeping is still really low. We asked both cardiologists and neither seemed very concerned at this time. I know that should she still be doing this in a month then we have a problem and that will mean C needs another heart cath. Right now I am praying that she will behave and do as is expected (for once!) and have this issue with her lower oxygen saturation's resolve itself as her lungs and body get used to the new physiology with her heart only pumping mostly red blood with just a bit of blue blood. She is currently connected to a holter monitor (just 24 hours). I will mail the holter back tomorrow and we will get the results in about 2 weeks. Unless of course there is a problem. If there is a problem then we will get a call. I got the impression from the EP cardiologist that he does not expect there to be a problem. I will be praying hard that her arrhythmia medications are still working for her.
Other than our exciting day of cardiology C is doing pretty well at home. Been a little harder for her to adjust this time as she was in the hospital so long this time. She really was not wanting to return to her normal schedule of getting to bed at 8pm and really wanted to stay up to 10pm or later. I finally had to get a little mean with her and insist that she get to bed earlier :). I just took away her morning nap and now she only gets one nap in the afternoon. So far has worked pretty good.
C is loving being home. She is so happy to be here and see her brothers every day. Every time she sees them she just lights up and gets all excited. They can make her laugh like no one else. She so loves when they play with her. She is also really loving being back in her co-sleeper right next to mama and daddy so we can keep picking up her paci and putting it back in her mouth every time she loses it and fusses. I know, she really needs to be in her crib in her own room but between her feeding pump and her monitor going off like crazy all night because of her lower sats I just like having her close. Besides, I do not want to be the one running across the house every time the silly thing alarms. We already do not get enough sleep between the alarming and having to be up until midnight to give her one of her meds so I really do not want to add to it by running across the house all night long.
So, since everyone has asked. All we do now is wait. We all live our lives as best we can doing everything we can and we wait... and as her one cardiologist said today...we all watch her get fat! (which by the way is already happening thanks to her g tube...she is a whopping 14 pounds, 10 ounces and gaining everyday!)
Thank you all so much for the prayers and all of the help. So many of you have tremendously helped us and I feel so bad that we have not had the time to thank everyone personally. Even though we are very slow on that, please know that we truly do appreciate all that every single one of you has done for our whole family.
Wednesday, June 23, 2010
Sunday, June 13, 2010
There's No Place Like Home
And we ALL should be there a little later this afternoon.
C is being discharged today. Around noon.
She has been fever free for over 24 hours (at least that is what the doctors tell us). Kevin thought she was running a fever last night but with round the clock Motrin she seems to be keeping it in check. Nothing at all has grown on any of the cultures they have taken (3 times she has been cultured). There has been no indication markers on any of the blood they have drawn and sent (at least 10 times). There has been nothing on the urine sent (and I refused to let them cath her after the first time...h to the l no). She has no "bugs" in her system. The doctors are all pretty confident (there are never any guarantees when you are dealing with the stuff C has) that the fever is coming from the effusion on her heart. The effusion is still small and is shrinking with the increased Lasix and Motrin. She woke up this morning all on her own after a very good night of sleep and she was happy. Just like her normal self. Yay! Unfortunately I think all this has made her take a step back with her eating but I think she will catch on again. If nothing else we do have the g tube now. She will not be starving like before and we are doing our best to get some junk in her trunk.
I think she was telling us yesterday she wanted to go home. We had the doctor okay pulling out her central line that was placed last week. The intensivist was very hesitant as they have such a hard time getting any access on C, plus they have been doing the blood draws from the line instead of having to stick her. But, he did okay removing the line because she did still have an iv. I had been negotiating with the surgical PA here about removing her central line. We had a deal worked out. Again, based on C having and iv. Well, C decided she has had enough and her iv actually came out on its own last night. The nurse tried to save it but the catheter was completely out, laying on top of her skin. I was like, uh oh. So was Kevin. He kept thinking, oh great, the intensivist is going to kill me. Especially if she runs a fever again and the they have to draw blood. I don't think Kevin got that much sleep last night he was so worried she would run a fever again. But, C surprised us all and did not break with the drama last night and remained fever free. No blood draw, no cultures.
No fever + good echo = C going home.
We are so grateful to everyone for all the prayers and good wishes and to all of our family who have visited and helped us out with the boys. 19 days is a VERY long time to spend in the hospital, especially an icu. C will have to see both EP and regular cardiology later this week, but we are all praying for good reports and much more time at home before we have to be back in the hospital. God is good.
C is being discharged today. Around noon.
She has been fever free for over 24 hours (at least that is what the doctors tell us). Kevin thought she was running a fever last night but with round the clock Motrin she seems to be keeping it in check. Nothing at all has grown on any of the cultures they have taken (3 times she has been cultured). There has been no indication markers on any of the blood they have drawn and sent (at least 10 times). There has been nothing on the urine sent (and I refused to let them cath her after the first time...h to the l no). She has no "bugs" in her system. The doctors are all pretty confident (there are never any guarantees when you are dealing with the stuff C has) that the fever is coming from the effusion on her heart. The effusion is still small and is shrinking with the increased Lasix and Motrin. She woke up this morning all on her own after a very good night of sleep and she was happy. Just like her normal self. Yay! Unfortunately I think all this has made her take a step back with her eating but I think she will catch on again. If nothing else we do have the g tube now. She will not be starving like before and we are doing our best to get some junk in her trunk.
I think she was telling us yesterday she wanted to go home. We had the doctor okay pulling out her central line that was placed last week. The intensivist was very hesitant as they have such a hard time getting any access on C, plus they have been doing the blood draws from the line instead of having to stick her. But, he did okay removing the line because she did still have an iv. I had been negotiating with the surgical PA here about removing her central line. We had a deal worked out. Again, based on C having and iv. Well, C decided she has had enough and her iv actually came out on its own last night. The nurse tried to save it but the catheter was completely out, laying on top of her skin. I was like, uh oh. So was Kevin. He kept thinking, oh great, the intensivist is going to kill me. Especially if she runs a fever again and the they have to draw blood. I don't think Kevin got that much sleep last night he was so worried she would run a fever again. But, C surprised us all and did not break with the drama last night and remained fever free. No blood draw, no cultures.
No fever + good echo = C going home.
We are so grateful to everyone for all the prayers and good wishes and to all of our family who have visited and helped us out with the boys. 19 days is a VERY long time to spend in the hospital, especially an icu. C will have to see both EP and regular cardiology later this week, but we are all praying for good reports and much more time at home before we have to be back in the hospital. God is good.
Thursday, June 10, 2010
First Good News
Good news has been rather rare around here lately. Today, I got great news. The EP cardiologist came in a little bit ago and went over the results of her holter monitor. He actually used the words excellent and very good. Oh my. He said she only showed arrhythmia 1% of the time which in his words is "excellent." The other really good news is that he said where originally her arrhythmia looked chaotic and irregular, the holter monitor actually showed that her arrhythmia is actually more uniform. This is all very good news. In fact, the EP cardiologist is starting C on the maintenance does of her anti-arrhythmia medicine tomorrow instead of continuing the loading dose and he let the intensivist know that he clears her for discharge. The only thing that is scary for us is that he did say that he does expect C to have break through episodes. We will need to be extremely vigilant and call them right away so we can make sure to get it under control as soon as possible. We will have to see both the EP cardiologist and her regular cardiologist now. Hoping we can at least coordinate them together since I see us having to come to St. Pete from now on. No more clinic visits in Sarasota for us.
So, of course everyone's next question is...when do we get to go home? That is a question I would just love to answer but cannot right now. C broke with a fever AGAIN this morning. Seriously. This has got all the doctors completely stumped. Her white cell count is completely normal, she is not cranky (in fact she was sitting up, playing and laughing this morning we she spike to 102.8) and she is eating fine. I have no idea (and neither do the doctors) just what in the world is going on. She has been on antibiotics since her first fever 7 days ago. Nothing at all has grown on the cultures. They have redrawn blood for all the cultures again. I guess we need to see if anything grows this time. I can tell the intensivist is really hoping the fever is a result of an infection on her central line site. Because really there is nothing else. So totally weird. I am so scared I am going to hear the words "heart failure" and "transplant" again but no one has said that. She has not even been ordered another echo. I keep thinking she will be getting one just to rule out failure but she has not and she is really showing no other signs of failure. Everyone is rubbing their heads. Some of the nurses have determined that she just likes it here and likes them so much that she just does not want to leave. Ha ha.
Now we wait again. Wait to see if she kicks the fever. Wait to see if anything grows on this new set of cultures. Wait to see if she has any other illness symptoms. Wait and see if it is indeed her central line now causing the problems. I am much more content with waiting now. I am just so happy that her heart is doing so well.
That is all the news for today. Keep those prayers coming because they are really working. Thanks so much.
So, of course everyone's next question is...when do we get to go home? That is a question I would just love to answer but cannot right now. C broke with a fever AGAIN this morning. Seriously. This has got all the doctors completely stumped. Her white cell count is completely normal, she is not cranky (in fact she was sitting up, playing and laughing this morning we she spike to 102.8) and she is eating fine. I have no idea (and neither do the doctors) just what in the world is going on. She has been on antibiotics since her first fever 7 days ago. Nothing at all has grown on the cultures. They have redrawn blood for all the cultures again. I guess we need to see if anything grows this time. I can tell the intensivist is really hoping the fever is a result of an infection on her central line site. Because really there is nothing else. So totally weird. I am so scared I am going to hear the words "heart failure" and "transplant" again but no one has said that. She has not even been ordered another echo. I keep thinking she will be getting one just to rule out failure but she has not and she is really showing no other signs of failure. Everyone is rubbing their heads. Some of the nurses have determined that she just likes it here and likes them so much that she just does not want to leave. Ha ha.
Now we wait again. Wait to see if she kicks the fever. Wait to see if anything grows on this new set of cultures. Wait to see if she has any other illness symptoms. Wait and see if it is indeed her central line now causing the problems. I am much more content with waiting now. I am just so happy that her heart is doing so well.
That is all the news for today. Keep those prayers coming because they are really working. Thanks so much.
Stable
C had a pretty good day. She still seems to be suffering from the rhino virus, which apparently is a whole lot worse than just a common cold. She is also teething. Poor thing just can't catch a break from all the ickiness.
As far as I know, her heart has done well with staying in rhythm and rate last night and today. I did not get woken up once from her monitor going off. I got woken up for lots of other reason but not because her monitor was going crazy. The increased amount of one of her meds seems to be doing the trick. She will be in the hospital for at least another 5 days as the cardiologists want her to get a full 10 day loading cycle of the anti-arrhythmia medicine. Because of the increased time on the loading doses she needs to be in the hospital to be monitored. There was some talk of moving her to the main pod area of the floor but that was before she broke into tachycardia again. Plus I voiced concerns about her being out of the cardiac icu and the response back was we can stay in the icu as long as there is not a pressing need for the bed. So, I am a little nervous they may try and move us out but I really hope not.
C did have her holter monitor on all last night and through today. We have not heard any results of that yet but hope to get some tomorrow.
Fortunately Kevin was able to come back to Tampa today and give me a break. He spent most of the day with us and let me rest and is staying with C tonight so I can not sleep in the hospital. Also, my Aunt J just flew into town tonight to help us out. I am so blessed to have such wonderful family who are willing to drop everything and help us out.
Right now we do not really have that much info on C. She is stable, which is awesome. The meds seem to be working. I really wish she could kick this virus. It makes her miserable on top of everything else. We are hoping that we can meet with the EP cardiologist tomorrow and get a better understanding of what is going on and get a long term plan in place. I really dislike not be prepared and not having a plan. Being in limbo really sucks. Most of the time I feel like I am just sitting around waiting for something bad to happen.
Please keep the prayers coming. God willing, C will respond to the increased meds and we will hopefully be able to go home end of the weekend or the beginning of next week. Thanks so much.
As far as I know, her heart has done well with staying in rhythm and rate last night and today. I did not get woken up once from her monitor going off. I got woken up for lots of other reason but not because her monitor was going crazy. The increased amount of one of her meds seems to be doing the trick. She will be in the hospital for at least another 5 days as the cardiologists want her to get a full 10 day loading cycle of the anti-arrhythmia medicine. Because of the increased time on the loading doses she needs to be in the hospital to be monitored. There was some talk of moving her to the main pod area of the floor but that was before she broke into tachycardia again. Plus I voiced concerns about her being out of the cardiac icu and the response back was we can stay in the icu as long as there is not a pressing need for the bed. So, I am a little nervous they may try and move us out but I really hope not.
C did have her holter monitor on all last night and through today. We have not heard any results of that yet but hope to get some tomorrow.
Fortunately Kevin was able to come back to Tampa today and give me a break. He spent most of the day with us and let me rest and is staying with C tonight so I can not sleep in the hospital. Also, my Aunt J just flew into town tonight to help us out. I am so blessed to have such wonderful family who are willing to drop everything and help us out.
Right now we do not really have that much info on C. She is stable, which is awesome. The meds seem to be working. I really wish she could kick this virus. It makes her miserable on top of everything else. We are hoping that we can meet with the EP cardiologist tomorrow and get a better understanding of what is going on and get a long term plan in place. I really dislike not be prepared and not having a plan. Being in limbo really sucks. Most of the time I feel like I am just sitting around waiting for something bad to happen.
Please keep the prayers coming. God willing, C will respond to the increased meds and we will hopefully be able to go home end of the weekend or the beginning of next week. Thanks so much.
Tuesday, June 8, 2010
Living on the Edge
and it is so not as glamours as the Aerosmith song. The constant worry and stress are really taking a toll on me, Kevin, the boys, shoot our whole families. I cannot stop watching the monitor when I am in C's room. I dread leaving her and I dread coming back to the hospital. Poor Kevin keeps telling me to stop watching the monitor but I am just scared.
While C was improving she has started to have issues with her heart rate again. She was placed on 2 different medicines to control the rate and arrhythmia she was in 5 days ago. As of 1am she was no longer holding a steady heart rate. The rhythm is still good but her actual heart rate (how fast/slow her heart beats) is all over the board. Apparently of the two problems to be dealing with right now, the heart rate issue is the better of the two but since the two go together this could start affecting the rhythm as well). Fortunately my mom is able to be here with me today as I have gotten no sleep, watching the monitor and all. Plus C was just cranky all last night and would not let me put her down. She is not feeling well at all. I just took her temp and she seems to be running a fever again (will have the nurse do it as well just to be sure). She seemed like she was getting better and kicking this cold but she is now getting worse. Not sure why. She has had two different blood work-ups for cultures and nothing has grown at all. She was on super heavy duty antibiotics for several days and is continuing on Omnicef just to be safe. I know that if it is a virus then the antibiotics will not do anything but I am really praying there has not been an infection set in since the last blood draw/urine sample.
Right now I do not have any plan of action as I have not spoken with any of the cardiologists yet. Hoping they will finish rounds here soon and take a look at her and let me know what the plan is. I know the doctors have mentioned before that we could change medicines and see if that works. I am really praying, and asking all of you to pray as well, that the medicines work. Right now the alternatives to treat this are very risky for her. The ablation is something the doctors can do if pressed but they really want to wait until she is bigger and older (and the success rate is not very high apparently). Everything with all this stuff really depends on her size. The bigger she is, the bigger her heart is, the better. I am so not willing to consider what will happen if the medicines do not work.
I am not trying to be an alarmist but C is still pretty sick. She can really use all the prayers she can get.
Thank you all so very much -
While C was improving she has started to have issues with her heart rate again. She was placed on 2 different medicines to control the rate and arrhythmia she was in 5 days ago. As of 1am she was no longer holding a steady heart rate. The rhythm is still good but her actual heart rate (how fast/slow her heart beats) is all over the board. Apparently of the two problems to be dealing with right now, the heart rate issue is the better of the two but since the two go together this could start affecting the rhythm as well). Fortunately my mom is able to be here with me today as I have gotten no sleep, watching the monitor and all. Plus C was just cranky all last night and would not let me put her down. She is not feeling well at all. I just took her temp and she seems to be running a fever again (will have the nurse do it as well just to be sure). She seemed like she was getting better and kicking this cold but she is now getting worse. Not sure why. She has had two different blood work-ups for cultures and nothing has grown at all. She was on super heavy duty antibiotics for several days and is continuing on Omnicef just to be safe. I know that if it is a virus then the antibiotics will not do anything but I am really praying there has not been an infection set in since the last blood draw/urine sample.
Right now I do not have any plan of action as I have not spoken with any of the cardiologists yet. Hoping they will finish rounds here soon and take a look at her and let me know what the plan is. I know the doctors have mentioned before that we could change medicines and see if that works. I am really praying, and asking all of you to pray as well, that the medicines work. Right now the alternatives to treat this are very risky for her. The ablation is something the doctors can do if pressed but they really want to wait until she is bigger and older (and the success rate is not very high apparently). Everything with all this stuff really depends on her size. The bigger she is, the bigger her heart is, the better. I am so not willing to consider what will happen if the medicines do not work.
I am not trying to be an alarmist but C is still pretty sick. She can really use all the prayers she can get.
Thank you all so very much -
Sunday, June 6, 2010
And Now we Wait
C had another good night. This time she did not break with the drama and everything was nice and stable. Seems as though C is finally getting rid of her cold and fever. She did still get Motrin but I think she is finally kicking this out of her system. She also did not have any break through arrhythmia problems. This is all very good. We are still working with her feeding and she did receive about 10 ounces of formula over night in her g tube. Everyone is determined to get her to fatten up.
So, now we wait. This I think is the hardest part of being in the hospital because there is no real plan or action, we are just here for observation. I am very happy that C has made it this far but hospital living really stinks. I really just want to get her home and back to her normal routine. I am so nervous that the longer she stays in the hospital the more risk she is in for getting sick. But, I think as long as she stays stable and she can get her central line out tomorrow then we can go back to having a little more freedom to get C up and around and out of her room. Maybe we can even get her back to wagon rides and get her outside a little.
As of now there is not much more to report. C has really turned around and is actually acting more and more like a "normal" baby. She eats in the appropriate amount of time and then plays and goes down for a nap. Your have no idea how much we have missed C having a normal baby life. And, I am so very grateful that we are at this point that I can be aggravated by having to stay in the hospital for observation. Hopefully it will not be as long as the doctors are saying. Right now they are saying we may be discharged Wednesday or Thursday. I was hoping for Tuesday but I guess I will take Wednesday. Thursday will be a little tough to take but it is what it is.
Thank you all so very much for the good thoughts, positive energy and prayers. C is still in a transition period and I am still praying that she continues to improve. I will be so very happy if she can kick this arrhythmia so that is what I am praying for.
So, now we wait. This I think is the hardest part of being in the hospital because there is no real plan or action, we are just here for observation. I am very happy that C has made it this far but hospital living really stinks. I really just want to get her home and back to her normal routine. I am so nervous that the longer she stays in the hospital the more risk she is in for getting sick. But, I think as long as she stays stable and she can get her central line out tomorrow then we can go back to having a little more freedom to get C up and around and out of her room. Maybe we can even get her back to wagon rides and get her outside a little.
As of now there is not much more to report. C has really turned around and is actually acting more and more like a "normal" baby. She eats in the appropriate amount of time and then plays and goes down for a nap. Your have no idea how much we have missed C having a normal baby life. And, I am so very grateful that we are at this point that I can be aggravated by having to stay in the hospital for observation. Hopefully it will not be as long as the doctors are saying. Right now they are saying we may be discharged Wednesday or Thursday. I was hoping for Tuesday but I guess I will take Wednesday. Thursday will be a little tough to take but it is what it is.
Thank you all so very much for the good thoughts, positive energy and prayers. C is still in a transition period and I am still praying that she continues to improve. I will be so very happy if she can kick this arrhythmia so that is what I am praying for.
Saturday, June 5, 2010
Making Progress
C did very well yesterday. She stayed in sinus rhythm with no breakthrough tachycardia. Awesome. The meds are working. We saw the cardiologist and he did an echo yesterday morning and confirmed that her heart is still functioning very well with very good blood flow. He even showed us on the echo that exact spot where her recent surgery was done. Pretty cool to see. He was very happy (and relieved) to see that her heart looks as good as it does. Honestly, so we were. We were both afraid that the crazy arrhythmia and high heart rate damaged her heart in some way.
We are back to trying to feed C her normal stuff. The most amazing thing is that she actually WANTS the food. She gets all excited and grabs at not only the spoon but at her bottles as well. She is holding them on her own and actually drinking while awake. We are just in awe of how much better she is eating and her improved appetite. Of course she is still not eating enough so that is where the g tube will help. The doctors are currently working out the best plan for her and it sounds like we will be running 50% of her caloric intake overnight through the tube. Will give all of us a break and will allow C to actually enjoy eating since we will not have to constantly force her to eat.
Unfortunately C's fever returned last night (and so did my fear of her tachycardia/arrhythmia returning). Ugh. She spiked to 103.7 around 6:45pm right as our very favorite nurse was getting ready to leave. Twice now C has pulled out the drama around this time of night. Two nights ago it was breaking back into the arrhythmia and last night a return of the fever. So, today we are trying for no drama at all. I told her nurse that the third times the charm and that tonight when she leaves C will behave herself. The doctors did confirm today what I have been saying all along, C has a cold. Well, duh. Her nose has been so stuffy for days and she is congested. I was actually leaning towards sinus infection but the viral panel came back as positive for rhino virus, the common cold. At least now the doctors are happy to see there is a reason for the fever and they can treat it. C will remain on the super heavy duty antibiotics for one more day just to make certain that nothing bacterial, fungal or yeast grows on the cultures. The intensivist will be happy to take her off the antibiotics once he sees two negatives on the cultures.
Did see the cardiologist this morning and things still seem to be looking up. He agreed with the cardiologist yesterday and the thinking is that C's arrhythmia is called atrial flutter. The atrial flutter is a direct result of the surgery she had with the scarring to the atrium. He also said the same things as the cardiologist yesterday in that there is a good chance we can get rid of this arrhythmia for good in the next year or two either through C's atrium healing and behaving itself, or her getting bigger and the scar tissue lessening, or through an ablation, or even through doing an electrical type surgery at the same time as her Fontan. Apparently there are many options now that the doctors know what they are dealing with. With each day and more consensus among the doctors, because you know there are like 8 different doctors involved with this, I get a little more comfortable in knowing what we are dealing with. C is stable and tolerating the medications. The medications are keeping the arrhythmia in check. The doctors know what they are dealing with and how to manage it and hopefully treat it to get rid of it permanently. C can and more than likely will develop future arrhythmia problems as she gets older. We will be prepared for them the next time.
There is talk around this joint that we might be sprung mid week. This, of course, all depends on C behaving herself and doing what she needs to do. She has to transition to anti-arrhythmia oral meds and have no break through tachycardia. She has to kick this cold and get rid of the fever. She has got to stop being a drama mama.
So the news is turning up. All the prayers are working. God is listening.
I am going to just reiterate what Kevin said, if you have called or left us messages please do not be upset if we have not gotten back to you yet. The cell service in the hospital sucks and we just really have not had time. After watching C struggle so much the other night I can hardly take my eyes of the monitor. I know I am going to be a wreck once we get her home. Kevin was hoping I might finally allow her to go sleep in her own crib in her room but that is so not happening now, She will stay right next to my bed.
We are back to trying to feed C her normal stuff. The most amazing thing is that she actually WANTS the food. She gets all excited and grabs at not only the spoon but at her bottles as well. She is holding them on her own and actually drinking while awake. We are just in awe of how much better she is eating and her improved appetite. Of course she is still not eating enough so that is where the g tube will help. The doctors are currently working out the best plan for her and it sounds like we will be running 50% of her caloric intake overnight through the tube. Will give all of us a break and will allow C to actually enjoy eating since we will not have to constantly force her to eat.
Unfortunately C's fever returned last night (and so did my fear of her tachycardia/arrhythmia returning). Ugh. She spiked to 103.7 around 6:45pm right as our very favorite nurse was getting ready to leave. Twice now C has pulled out the drama around this time of night. Two nights ago it was breaking back into the arrhythmia and last night a return of the fever. So, today we are trying for no drama at all. I told her nurse that the third times the charm and that tonight when she leaves C will behave herself. The doctors did confirm today what I have been saying all along, C has a cold. Well, duh. Her nose has been so stuffy for days and she is congested. I was actually leaning towards sinus infection but the viral panel came back as positive for rhino virus, the common cold. At least now the doctors are happy to see there is a reason for the fever and they can treat it. C will remain on the super heavy duty antibiotics for one more day just to make certain that nothing bacterial, fungal or yeast grows on the cultures. The intensivist will be happy to take her off the antibiotics once he sees two negatives on the cultures.
Did see the cardiologist this morning and things still seem to be looking up. He agreed with the cardiologist yesterday and the thinking is that C's arrhythmia is called atrial flutter. The atrial flutter is a direct result of the surgery she had with the scarring to the atrium. He also said the same things as the cardiologist yesterday in that there is a good chance we can get rid of this arrhythmia for good in the next year or two either through C's atrium healing and behaving itself, or her getting bigger and the scar tissue lessening, or through an ablation, or even through doing an electrical type surgery at the same time as her Fontan. Apparently there are many options now that the doctors know what they are dealing with. With each day and more consensus among the doctors, because you know there are like 8 different doctors involved with this, I get a little more comfortable in knowing what we are dealing with. C is stable and tolerating the medications. The medications are keeping the arrhythmia in check. The doctors know what they are dealing with and how to manage it and hopefully treat it to get rid of it permanently. C can and more than likely will develop future arrhythmia problems as she gets older. We will be prepared for them the next time.
There is talk around this joint that we might be sprung mid week. This, of course, all depends on C behaving herself and doing what she needs to do. She has to transition to anti-arrhythmia oral meds and have no break through tachycardia. She has to kick this cold and get rid of the fever. She has got to stop being a drama mama.
So the news is turning up. All the prayers are working. God is listening.
I am going to just reiterate what Kevin said, if you have called or left us messages please do not be upset if we have not gotten back to you yet. The cell service in the hospital sucks and we just really have not had time. After watching C struggle so much the other night I can hardly take my eyes of the monitor. I know I am going to be a wreck once we get her home. Kevin was hoping I might finally allow her to go sleep in her own crib in her room but that is so not happening now, She will stay right next to my bed.
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