Wednesday, June 23, 2010

Cardiology and well, Cardiology

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.

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.

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.


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.

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 -

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.

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.

Friday, June 4, 2010

Some Hope

I reread my email from last night and have come to the conclusion that I should not be sending out emails when I am tired, hungry and my nerves are totally shot. Wow, the spelling and grammar mistakes.

Anyway, I will try and do a better job of explaining what is going on with C now that I am somewhat back to normal and we have more information.

Yesterday all the doctors were thinking C had what is called atrial fibrillation, the very worst kind of arrhythmia. We spoke with the intensivist, the regular cardiologist and the electrical cardiologist. With each conversation the news and prognosis was worse. She had the worst arrhythmia: the hardest to break, the hardest to treat, the hardest to manage, the hardest to get control of with medications. Kevin and I were looking at our worst fear, C not making it long enough to get a heart transplant. That is how very sick she was yesterday.

The intensivist went forward with placing her central line because she needed stable, ready access for her medications that would be delivered through iv. Everyone was on edge. Everyone was very closely monitoring C. No one was smiling. For the second time ever since this journey began, I was scared. Scared we would not be returning home with Carolena.

During the placement of the central line C's heart was tickled when the line was placed. This is completely normal and happens every time. Which is why placing central lines and removing central lines are so risky because the line is going to the heart. One false step and the heart can go into an arrhythmia or stop beating all together. So, when the line hit her heart it actually had the opposite affect and kicked her heart into sinus rhythm. Totally unexpected and "dumb luck" to quote the intensivist. Unbelievably he just delivered the very best news possible. If touching C's heart with the wire broke the crazy arrhythmia and put her back in normal sinus rhythm the possibility of her arrhythmia being atrial fibrillation (the very worst kind) just became almost nonexistent. Holy cow. All the doctors were relieved. Now the all had a better understanding of what was going on and how to treat it.

C did stay in a nice normal sinus rhythm for 8 hours yesterday after being kicked back in. She did receive a dose of medication orally. However, they did not want to give her too much since her blood pressure was already a little low and the medication being given to stop the arrhythmia lowers blood pressure. She did start back with the crazy arrhythmia around 7pm. She got two different medications through her iv and she broke back out of it after about an hour and a half. She did not tolerate this bout as well as she had the previous night. Whereas the night before she was in super fast rhythm for hours and just started looking really crappy yesterday morning, last night it took all of an hour before she looked crappy. Her body and her heart just had enough. She did finally break the crazy cycle again with the medications and went into sinus rhythm. This is apparently another good sign that she does not have the worst arrhythmia.

We saw the same two cardiologists again today. One is a fetal/regular cardiologist and the other is the EP (electrical) cardiologist. Both were a bit more positive this morning. The one cardiologist thinks what C has is called an atrial flutter. Certainly not the best arrhythmia to have but certainly not the worst. The arrhythmia has been triggered because her atrium has been resected twice. There is scar tissue as the part that was operated on heals. This is messing with the signal. In addition I had the cardiologist explain why having heterotaxy makes this all so much worse. My understanding is that C's heart basically has two right sides, instead of right and left. Copies instead of mirror images. As such she has two competing firing nodes. She would have had developed arrhythmia problems at some point in time. We certainly did not expect it to be right now, but she would have developed them.

All the doctors agree that the trigger seems to be the fever that she was running. That on top of the gi tube placement just stressed her too much. But, the fever alone would have triggered the arrhythmia. Everyone has said we are very, very fortunate that we were still here in the hospital when this happened. Had we been at home and this happened we may not have known anything was severely wrong until it was too late. C tolerated the crazy rhythms so well that we may not have noticed until is was too late. She could have had some severe damage.

I did talk to the EP cardiologist and he did tell me that he was upset that they did not call him earlier two nights ago and that they let her go so long with the high heart rate. He said he has already talked to everyone about that. Fortunately C tolerated the long spell with little repercussions. She is still having to receive some extra minerals to bring her system back in balance but should be okay soon.

The plan for now is to keep her on the iv meds. If she breaks into the fast rhythm again then the doctors will manage with increasing the medications to break her out of it. If she absolutely cannot break with the meds then they will sedate her and shock her. Not such a lovely thought as it could go either way but they can do it. C will have to follow up with the EP cardiologist and her next heart cath will be extremely long. She will have two different invasive cardiologists doing their thing and getting the data they need. She will transition to oral medications to keep this arrhythmia in check. Once she shows she can stay in sinus rhythm with oral meds then they will start talking about discharge. She still has a long way to go. Her whole system needs to be brought back into balance and her heart stay nice and calm. She did have an echo this morning and her heart function is still looking really good. The cardiologist showed us exactly what was done during her surgery and how now it looks really good. Her blood flow is really good and her Glenn shunt is working just fine. She has been started back on the Viagra to address her pulmonary hypertension. The doctors are all still saying that her lungs should adjust to the new pressures and relax and she should be able to get off that drug. The hypertension is not something the doctors think will be long term for her. This arrhythmia should be easier to manage as her heart heals and the scarring reduces but there is a possibility that as she gets bigger she will move past this issue. He even said that there is a possibility she will outgrow this arrhythmia or it could be addressed with an ablation when she is older and bigger. I am by no means counting on it and am pretty certain she will be getting a pace maker after her next surgery, the Fontan but just that the cardiologist is talking like there is real hope just makes my whole day.

C is trying really hard to get back to normal. She is eating again and doing well with it. She, of course, still does not take the volume she needs but that is what the g tube is for. The g tube has been placed and is doing well. She is healing like she should and we have run meds and pedialyte through it. She is doing well with that so far. We are also able to vent her g tube (let all the air our of her stomach) which does seem to help with her gas issues. She still has a long way to go on the eating thing as well.

Each day right now is new. What she did yesterday does not affect what can happen tomorrow. Fortunately the doctors are more confident that the medications are working and that the arrhythmia can be controlled that way. We were very close to losing her yesterday. C continues to shock us all, including the doctors. She decides to throw huge curve balls at us and make us think we are dealing with the worst of the worst and then she pops out of it and says nope, this is bad but not the worst. I told her yesterday that she has got to cut it out. She is going to give me a heart attack.

Right now I am not sure how long we will be here in the hospital. Will all depend on C and how her heart handles the medications. She will not be discharged until she is under control. Fortunately I had already asked if we could be moved to a bigger room and voila, a bigger room opened up and we were moved last night. Thank goodness. Now we all have a little room to breathe, figuratively and literally.

Thank you all for all the prayers. Keep them coming because they are working. Through the grace of God, C is still here with us and we have real hope that she will be hanging around for awhile.

High and Lows, Ups and Downs

Today has been the toughest day so far. I thougt last night was bad but today, today was so much worse.

The morning started with waiting for all the doctors to get here and look at C and try to figure out what was going on and get a plan to help her. Fortunately the doctors were all on time this morning and we did not have to wait long for the to evaluate C.

What is happening as best we know is that her atrium is not firing right. Most likely cause of the problem lies in the 2 surgeries she has had that damage/scar the atrium. Her heart is very angry right now and is responding in kind. Unfortunately this electrical issue is common with these surgeries and is almost guaranteed with kids like C who have heterotaxy on top of everything else (and pretty much where we were headed post Fontan). The way I understand this is that the signal being sent from the top of the heart to the bottom of the heart is not making it there. It keeps looping around the top of the heart instead of flowing down where it needs to. She is receiving two different medications to try and keep her heart beating and firing correctly. One actually lowers the heart rate, causing the heart to not beat as fast. The second medication is a blocker that tries to block the signal from going in the loop.

So, to take this from the beginning here is how it has all gone down today:

The intensivist came in and gave me some info and let me know his plan. He was going to sedate her and place more permanent lines (ie central line) so she would have good and stable access. Which is critical right now to run all these meds and fluids and such through. He was going to place an arterial line as well but decided against it. That may change tomorrow. The arterial line would become necessary if and when the doctors decide she needs a much more accurate way to read her blood pressure.

Then I saw the regular cardiologist on rounds this week. He was saying what he though it was and how to treat it. He was actually pretty positive and upbeat and I though for a minute maybe it would not be as bad as I thought.

Then I saw the cardiologist who specializes in the electrical issues with the heart. He was not at all positive. Not a bit at all. He explained that what he say was the worst possible rhythm, the hardest one to break and the least likely to respond to treatment. He was basically saying C was dieing and that all that was left was transplant because her heart was failing.

Kevin and I were somewhat shell shocked.

So. we left it at that and went outside to wait while the intensivist placed her lines. We were so upset and stunned and we left knowing there was a chance she may not even make it through the line placement because the sedation she needed for it just became so very risky.

Kevin decided to call and talk to C's main cardiologist to get his opinion. He also got in touch with the fetal cardiologist we really like to get his opinion. After speaking with the fetal cardiologist we felt slightly better but still not sure of where things lie.

Then the most amazing thing happened. The intensivist came out to say the lines were placed and he said when he placed her central line he "tickled" the atrium of the heart and her heart broke the crazy rhythm and went into sinus rhythm (beating nice and steady and normal, firing just right). So amazing. I hugged him. Of course this is not the end. She could still flip back into the crazy rhythms. She remained in a nice sinus rhythm for about 8 hours with little medication and then she flipped back to the crazy rhythms around 7pm.

Kevin called me right away and let me know what was going on so I was prepared when I got here. I was hoping that just maybe she would stay in a nice rhythm but as with everything else we cannot get too excited by one good thing.

C has been given the iv medications now and she is going between the nice normal rhythm and the super fast crazy rhythm. We also saw the other electrical cardiologist and he was a little more positive about what we are looking at and what we can expect. He did not think this is the super bad rhythm and thinks that she can be controlled with medication once we get the right combinations. She has to be in a nice normal rhythm and also not bottom out her blood pressure. Very delicate balance.

C is fighting really hard right now. These crazy rhytms and fast beats are stressing her heart and her whole system. She looks awful when she is in the bad rhythm and she just has no choice but to pass out. Watching her struggle all last night and now again tonight is horrid, I just want to hold her and make it all better but she has a long way to go before she can even stabilize. The EP cardiologist has said it will be a very long night with lots of ups and downs. The nurses and doctors will be very closely following her so she can will be in perfect balancewith all her other stuff.

C will be in the hospital for several more days at the very least. The prayers we need most strongly right now is for this medication to work and for C's heart to respond. She has got to be able to stay in a nice rhythm.

I know I am not explaining this as well as I would like but I am tired. Just so you all know I did go back to my mom's apartment when C was stable and did get some sleep. I will try and update more later once I have had some more sleep and I can actually think clearly. We are in for a very long, long haul and will be seeing a lot of the electrical cardiologist as well.

Outside of the intensivist (who, by the way, if you all have not heard....I LOVE HIM!) breaking her out of the crazy rhythms this morning the best news was that the EP cardiologist was actually talking about her her stabilized and getting her home and getting her fattened up for her fontan.

Please keep the prayers coming and I will try to forward some pictures soon.

Thursday, June 3, 2010

Not the Update I Was Hoping to Write

I will try to get right to the point.

One - I do not have any answers yet as to what, if any infection C has. She had been running a relatively low grade fever until around 1:30pm yesterday. Then she spiked a temp over 102. That gets the doctors here pretty nervous so she had blood drawn for cultures, a chest xray done, a nasal swab for viral panel and then an attempt to cath to get urine. There was no urine obtained so we went to plan b which was to tape a bag over her area and see if we could collect the urine that way. No go. After like 5 times (over the course of 10 hours) the nurse decided that she would need to do another cath for urine. C was finally starting to feel better , broke her fever and was smiling and talking, and I figured we might as well go ahead and do the cath at night (10:30pm ish) so as to not wake her in the morning. I so regret that decision...way more than I can possibly put into words. Which leads me to -

Two - She screamed bloody murder during the cath (don't blame her one bit) as soon as it was done, I picked her up to calm her down and she seemed fine. Laid down right against my chest and shut her eyes to go to sleep. The nurse comes running back in like 2 second later all concerned by what she is seeing on the monitor. C went into SVT or Super Ventricular Tachycardia. SVT is where the heart beats way, way, way too fast. At one point I saw C's rate at 299. Just to keep things interesting she would follow that up with going into Brachycardia (or bradycardia...not really sure what the term is), which is when the heart beats way too slow. Of the two, brachycardia is the better as the heart is not working so hard. C's rate went all over the board for about 2 hours until she finally settled into a very high rate with breakout SVT into an even higher rate for the last 4 hours. A normal heart cannot withstand long bouts of SVT without intervention. C's heart is even more delicate as we really do not want her heart working harder than absolutely necessary (hence the surgeries to separate her blood flows and work load on her heart). She has already received several ekg's to try and capture the arrhythmia problems and she has been given medication to try and slow her heart down. Nothing really doing right now. I am supposed to see the electro cardiologist first thing this morning and maybe get a better idea of what is going on. This is really scary. I am beyond terrified. The worst part is that no one knows or can figure out why she is in SVT. She has never done this before and has not ever had signs of it. Her rhythms have not ever been a problem. She had a sedated echo in the morning after her g tube was placed and the results came back as perfect. Her heart looked great, her function great, the repairs great. So far the doctors are stumped but I am praying really hard for some answers in a couple hours.

Needless to say, I am begging everyone to say a prayer for C. I have been up pretty much all night with her and I just cannot consider that she will not pull through this. This arrhythmia problem she is having is one you see right after surgery, not 8 to 9 days post op. It can be treated with medications, you just have to find the problem first. I am trying really hard to not do the what ifs but I am tired and scared and can't help but think what if we just took her home Monday and came back for the g tube. Would she have avoided getting sick? Could she have avoided this new heart problem? What if I delayed the cath. Would she have freaked out so bad in the morning? She had already been through so much yesterday and was this just the final straw on her stress? She hates being here now. She screams and cries when she has to lay on the bed for the nurses. She is so over being messed with. She is still hungry and not feeling well from having not eaten anything in well over 24 hours to prepare for the g tube. She ran a fever for over 30 hours and just felt sick all day. I have been trying to tell myself all night to trust God. God knows what is best and everything will work out for C the way it is supposed to. But I am having a really hard time with that right now. I am not prepared to not be bringing C home this time.

I will do my best to send another update once I have more information from the cardiologists. I guess one good thing is that I have yet to see a doctor in her room and you always know it is really serious when the doctors start showing up. I cannot promise I will get back here to update anytime soon so please bear with me. I so appreciate you all and all the people who are praying for C. Please., please, please send the word out...we need them now more than ever.

My mom is here with me (and has been since I called her at 1am) and Kevin is on his way back to Tampa right now.

Tuesday, June 1, 2010

Should be Tubing Tomorrow

The intensivist here has been really right on with making sure to follow through and get C on the GI schedule to get her g tube placed. As of right now, she will have the procedure done tomorrow morning. Should be rather quick and easy. She will be sedated but not enough to be intubated. The whole thing will be done in her bed in her room. She will not be able to eat/drink at all tomorrow. She will be allowed to put stuff in her tummy starting Thursday morning. If all goes well then we will use the tube Thursday, make sure it all works and then hopefully she can be discharged Friday.

Of course C has to put a wrinkle in the plans. She started running a fever earlier this afternoon. Seriously.

Right now the intensivist is not concerned. She has no lines at all and her incision looks really good so there is really no open place for an infection to set in. I imagine if she is still running a fever tonight and into tomorrow morning then the plans will change. Crap.

I honestly have no idea why she would be running a fever right now. The best I can come up with is either 1) she picked up a cold or 2) she is getting dried out from the Lasix. Hoping it is the latter and she has not come down with some sort of infection. If she has an infection then who knows how long she will be here.

Other than the above, C is doing well. She still has a measure of freedom and I was able to take her outside to the play area for a little bit. She also had another enjoyable wagon ride. Being C though, she is quickly getting bored with these activities. Go figure. She was not as thrilled with the wagon today. Tomorrow she will be back in bed all day so maybe Thursday she will decide it is cool again. She is supposed to have her tube placed in the morning so I may not be able to update before then but will let everyone know how she is doing after.

Thanks so much for all the good thoughts and well wishes.