Day 13 Post Op and Cath Day - Again

Day 13 - Tuesday - C did well overnight but was grumpy and uncomfortable. Started back on Tylenol and she would feel better, so figured she was just still feeling some lingering pain. Got back to her pretty early as wanted to spend as much time with her as possible before she had to go for her cath. Our awesome nurse for the day went and got a whole bunch of stuff C to play with including a little table and chair so she could sit somewhere other than the bed. I am so grateful for this because getting C out of bed is crucial. The nurse brought all kinds of fun stuff to play with including markers to color, play doh and C's favorite, bubbles. We had a grand time playing with all this stuff and C even played with the intensivist and cardiologist blowing bubbles and coloring. So good for her but sad to me thinking that in just a few short hours she would have to go under again and what if this time we really did lose her. Fortunately, one of my dear friends from childhood came by to visit and kept my mind off of what was coming up. She works for the hospital administration that oversees the hospital we are in and she wanted me to know that she had made contact with the higher ups about moving C to the picu like they did. Very grateful for at least we had our concerns heard. Cath was supposed to be at 11:30 but as usual things always run behind so they did not come to get C until 1pm. The cath nurses and anesthesiologists came up to C's room instead of making her go to the pre-op area and wait. They let me ride on the bed with her all the way into the cath lab and stay until she was asleep. I am so grateful they let me do that because C was so calm and not all at scared. Less trauma. Cath actually did not take that long, an hour maybe, surprised the hell out of me. So at first I stated to panic thinking he found something horrible that could not be fixed or something that could only be fixed with surgery. Again, to my surprise, he did not find anything wrong. No collateral, no narrowing and nothing additional opened up. Um, ok. Pressures are great in heart and lungs. Function looks great. There is absolutely no fluid in her left lung. All very good news. But still no explanation for the lower sats. The only things he found were oxygen desaturation coming back from left lung to heart, not great but not horrible either. She is shunting a bit more across the fenestration than they would like, but again, not horrible. And she has a pericardial effusion (fluid around her heart) but small and not horrible. He did place another chest tube, small, like the pigtail ones used for the lungs but the thing was not actively draining so he figured he pretty much got it all during the cath. So after all of that, no real answer to why such low sats even on oxygen. The cath doctor told me I was right, there was nothing there and the plan would be to send her home on oxygen and wait for her left lung to heal completely. Awesome. I so enjoy not getting any answers. But at least the news was all good about her heart. Even better, the anesthesiologist did not intubate her. He worked extra hard and just used her cannula. She did awesome and was awake pretty quickly. I cannot even tell you how relieved we were. So back to just waiting her out. The awesome NP that night was working overtime to get all of C's stuff done so we could move towards discharge. C was done with the heavy duty iv antibiotics so she went back to her normal amoxicillian. She got the EP cardio to change the iv amiodarone to oral, stopped the milrinone and increased the oral enalapril, and switched her lasix to oral to start her lasix wean. With ner chest xray clear, cath confirming no fluid in lung and cath draining of fluid on heart we were looking god to go. The NP got all her prescriptions written and discharge orders done. She also got the pacer disconnected, although wirex still remain. Now we are starting to see the light at the end of the tunnel. We are starting to see home. Neuro did visit Monday confirming there was nothing concerning on the ct or ct angiogram and that we would follow up with him in clinic. Plan is to see how C is doing and maybe get rid of seizure med at one year. Right now he wants to keep her on meds and let her brain relax. Fortunately the med she is on is the safest one they have with few side effects and no interaction with any of the meds she is currently on. So there is that. Now waiting on pace wires to be removed, chest tube removed and C to show she can tolerate all her meds orally. Plan is to have tube and wires removed Wednesday. Have oxygen people come by to give us the oxygen and supplies and then hopefully get out of here in time to be home for the weekend. For the first time in over 2 weeks, C can sleep unencumbered by wrapping tubes and pump alarms going off. She just needs to behave to keep her monitor from alarming.

Day 12 Post Op

Day 12 - Monday Talk about being on pins and needles overnight and the next morning waiting to learn when C would have her cath. We had pretty much determined from everything we heard that this was no longer a question of if C would get a cath but when C would get a cath. The waiting is horrible but there is not much more to do when in the hospital. We go through rounds and everything is pretty much the same. C is still progressing but there will be no more changes until cath day and time is determined. So pacer is still connected even though she no longer needs pacer help. The iv amiodarone and milrinone stay. Obviously the pacer wires stay. The iv lasix is still on full force. However, they do decide to remove the trans thoracic line. Awesome news as that thing has been in for almost two weeks and with one line out of two clotted the thing is just sitting there acting as a possible breeding ground for infection and removing it b also means more moving around for C. One down side, they have to get very creative with C's pic line, the last remaining line, because her amiodarone cannot be mixed with lasix or one of the iv antibiotics that she is still on. So the nurses have to be very diligent about stopping the amio drip, flushing the line, running the lasix, flushing the line and then restarting the amio drip again. Gee, could you possibly give me anything else to worry about at this point? Now I an all freaked out the nurse will mess up and not keep them seperate and C will have a dangerous drug interaction. Freakin awesome. But our day nurse is fantastic and she has it all worked out and is able to give It to the night nurse. C tolerated the tube pull well and was a happy little thing when I saw her again. Even with the weird way her meds had to be run, I am always glad to see things disappear out of C and out of her room. Not too much later we got the call that C was scheduled for Tuesday at 11:30 to head to the cath lab. Well, guess we are doing this after all. Total terror. Poor C. Another procedure, more stopped feeds when we were just getting back into the swing of things and more anesthesia. Ugh. Her cath doctor did come by and talk with me in the afternoon. I could tell he was still hesitant but got out voted by the rest of the team. He is the one who has been dragging his feet trying to give her more time to adjust. However, he did say that he is just as concerned and perplexed as everyone else as to why her oxygen saturation is remaining so low even with oxygen on. He also said the risks are the same now as 2 months from now. I asked him about just letting her go home on oxygen and see how she does and he said if he could do something to avoid that then he would like to do so. The reason we had already waited so long on the cath compare to to what the other doctors wanted was because our cath doctor was on a mission trip to Jamaica the while last week. So, off to the cath lab Tuesday for C. I am continuing to get C up and walking 3 to 4 times a day. Now instead of wanting to go walk she wants to stay in bed and cries to get back in it. I am having nothing of that though and keep getting her up. I think she has figured out that she is not actually leaving and therefore has no desire to walk through the unit again and again. I would take her out of the unit except I fear she will never come back in. She is still tolerating her feeds and is pooping ljke a champ. Think she is making up for lost time. Kevin says again that the night is uneventful and she is getting more sleep at night. The monitor alarms and the pump alarms still freak her out though. Kevin has decided that he is going to invent some type of pump that will not alarm in the room but will alarm to the nurse directly. Considering the pumps generally are just letting the nurse know that a med or flush is done, sounds good to me. Maybe he will make us a bunch of money :-) Trying to get a decent night's sleep with a cath looming over our heads is near impossible.

Day 11 Post Op

Day 11 - Sunday Well, I spent the night with C and heard her monitor go off all night long sure to her oxygen saturations being too low. She mostly hung around 70-73. Really, really low for a kid post Fontan. So, I was super nervous when the doctors started rounds because I just knew C was out of time and the doctors were going to push for the cath. Sure enough, when C's EP cardiologist came by he said it was time. C would be discussed at cath conference Monday with cath possibly as early as Monday afternoon. Awesome. Of course I was scared as all get out to put C through more anesthesia and another procedure messing with her heart, you know, since the last one went so swimmingly well. Apparently I was nervous enough and terrified enough that C's EP cardiologist actually patted me on the shoulder to try and reassure me that it would be ok. I also asked what would happen if they did not find anything with the cath and was told that they would definitely find something. Ok. Still not completely reassured and wondering if it is really worth the risk if they are basically just going fishing. EP cardiologist did tell me that the cath risks now versus two months from now would be the same. And he figured if she had a problem would be easier to get hold of while she is still in the hospital. Nothing else changed as so many things were done Saturday. We continued to get up and walk and move around. C definitely needs to get out of bed. She has been laying there far too long and needs to get her strength back up. So, not super comfortable night as she was still hooked up to the pacer, still has pic line and still hs the trans thoracic line. Kevin was back and started with her Sunday and reported an uneventful night. I finally got her into some type of schedule and she was asleep when Kevin got back. She continues on her home feeds and juice and is tolerating it really well. So much better than I expected and I hope the trend continues.

Day 10 Post Op

Yeah, behind on updates again. But, again for good reason. C continues to make forward progress and with forward progress means spending more time with my angel and her spending more time on my tablet :-)

So Day 10 - Saturday  -

The doctors decided to push C to see how much she would tolerate and how well she would do. Did not see neurologist as he is not in the hospital on the weekends but already heard from cardiologist that her ct angiogram was clear. There was no sign of stroke, no clot, no annuerism and no injury to her brain. We were so relieved to get that news but still needed to hear from neurologist after he reviewed the scan and what his plan would be from there. Since got good news on scan, did not mind waiting until Monday to see neurologist.

C's EP cardiologist was on service for the weekend which was awesome. Hence why he was willing and able to push her when staff is reduced on the weekend. So he cut her iv meds way down again. Both her amiodarone and milrinone were cut way back. The milrinone could have been stopped and the amiodarone could be switche to oral but he was stil thinking impending cath and did not want to take her off the iv drips. The pacer also stayed connected. He turned the rate way down but left it on and connected. C has did well with that all day and has stayed in sinus rhythm. Very good.

They decided to see what C would do with no oxygen on at all, so she was switched to room air from 3 liter flow and 100% oxygen. I know, big switch right? But she did well all day and managed to keep her oxygen saturations in the 80's. Unfortunately both the flow and oxygen had to be turned back on as C desatted all night and hung in the very low 70's. I did night watch Saturday as Kevin went home to be with the boys. His mom was having a party for her 70th birthday and all of Kevin's family was in town. He was looking forward to going and so were the boys. Kyle also had a church retreat on Sunday for his sacremental prep and Kevin really wanted to do that with him. So, Kevin got to see the boys and sleep in our own bed. Somewhat jealous on both accounts but he totally deserve that night of sleep after all the nights he has spent in the hospital with C.

C also had her chest tubes pulled. Finally. Her xrays showed clear lungs and there was no further drainage so out they came. Oh what a happy girl C was once those came out. She was more comfortable than she had been since surgery. We were still giving her Tylenol as needed to make sure she had no pain.

The best part of Saturday was that they finally let her get out of bed and walk. She was so excited. Unfortunately she thought it meant we were leaving for good and threw an absolute fit when we told her she had to go back to her room. She was so worked up and screaming so hard she actually raised her oxygen saturation by opening up her lungs. But as much as we hoped the lower sats were a product of her lung she kind of proved us wrong when she could not keep them above 70 that night.

We also continued on with her feeds as we do at home. She did vomit once and of course all over herself so that required dressing changes. Awesome. But getting her up and walking really helps get her bowels moving.

Overall we had a great day and some hope we could avoid another cath before going home.

Day 8 and Day 9 Post Op

So I am a little behind with the updates. This time for a very good reason. Days 8 and 9 have been great for C. She is finally turning the proverbial corner and moving forward faster than moving backward.

Thursday - Day 8

Finally I get to hold C! Her bed needed to be changed and I got to her room just in time to hold her while tha was bein done. Of course I held on to her for quite awhile. I even refused to put her back on the bed when the eeg tech came to remove the eeg leads from her head. I told her we would move the bed a little so she could get to C's head and I did not care one whit if she got the remover solution on my shirt. Leads came off, C fell asleep (a real sleep...you know the ones I am talking about), and the neurologist came in. He said the second 24 hour eeg looked the same as the first one she had. He said he was still seeing the crazy patterns on the eeg when she was woken up, hyperventilated or was messed with. He still wanted the ct angiogram done so he could see her brain structure and where blood and oxygen are going. She was suppossed to have that this morning but ended up gettin postponed until Friday because after our very awesome nurse called and talked to ct several times beginning at 7am, in all the times she spoke wit them trying to get clear instruction, noone told her C would need to be heavily sedated. Um, yeah. So, our nurse was super pissed because she had everything ready, everybody ready and then at noon, they tell her about the sedation thing. She had already planned to have the NP here give a small hit of versed to keep C calm and then she and the NP would be with C the whole time, We are allowed to go with her and stay all the way to the actual machine running so th would stay through that. But, the kind of sedation ct was requiring meant the intensivist doctor would need to do the sedation and would need to stay with C. Two problems, the intensivist had told us just an hour earlier on rounds that we could go ahead and feed her. She wanted C feed and with fluids, getting her back to her normal. So, we fed her..therefore, she could not safely have sedation for at least 4 hours. That woud push the test time to around 5pm and noone wanted to do that. Second, the intensivist was not available. She had already moved on to the other patients she needed to see. So, our awesome nurse reset the ct angio for Friday morning, after really giving the ct tech what for, as she should. Everybody has C's back here. Rounds were actually fine. This day th whole group, including C's surgeon, was present. Does not happen like that every day. Some days you will see the doctors individually. Anyway, told us C would be on 7 day course of antibiotics because blood showing infection markers and with no spleen, noone wants to risk C getting sick. At this point, she still has several lines in including: arterial line in groin, two chest tubes, trans thoracic line, pacer wires and her pic line. Still, leaving iv drips on but cutting back on amount a little more...this is amiodarone (arrhythmia drug) and milrinone (heart function drug). Chest tubes still draining so those stay. Pacer turned down a little more just to catch C's heart if she goes too low, like during sleep. Oxygen wean is on hardcore since she has done well with no nitric. She was dropped from 8 liter flow to 6 liter flow. But of course the down side is still her lower oxygen saturations. She was put on he cath conference Monday so the whole team can talk and decide what to do. C had a relatively stable night, slept well and was pretty happy going into day 9.

Friday - Day 9

So I get to C right as they are getting ready to go to ct angio. We have another of our favorite nurses and I am so happy. Plus, the decision was made to have the pediatric cardiac anesthesiologist come and sedate C and stay with her the whole time. The intensivist was being super cautious because of the seizures and meds she is on for that and th arrhythmias ad the meds she is on for that. So awesome she is so complicated but I was so very grateful that the anesthesiologist agred to do this for such a small thing. C sailed right through the whole thing and popped right back from the sedation. My husband and were so grateful. The cardiologist on this week came in and said the last 24 hours have been the best for C since surgery. Finally, 9 days after this nightmare began, C is leveling out. I felt kind of bad for this cardiologist becaus I think he thought he was always giving us bad news, so when the ct from Wednesday came back clean, he was practically giddy to give us the news. Then when the echo came back with great function he practically ran into the room with the news. I am pretty sure he was so happy to end the week on an upswing. Of course we are super happy C is finally coming around. Today she was awake most of the day. I got to hold her again and we ate yogurt. She is back on full feeds of the food we make and she is gettin her apple juice/Gatorade mix. We watched movies, played games and did more of our normal stuff. C is able to move around more because the intensivist won out and she had C's arterial line removed. Plan still same, wean, wean, wean and feed. CT angio came back with radiologist report of unremarkable...meaning C's brain is just fine. Blood and oxygen going where they need to, structur is good and there is no evidence of clot, annuerism or stroke. Awesome news. C is down to 4 liter flow and staying steady. Only negativity is the possibl cath next week hanging over our heads. We obviously would prefer to wait it out a little longer and see what she does. She is she can apapt at home and have her sats come up. Everything else is pretty much the same. She still has iv meds and still has pacer attached even though rate is super low, just to catch if she goes too low. The very best thing of all, the last two nights I have been able to lay with C and get her to sleep. She is going to be so spoiled but honestly, I don't care if she wants to sleep in my bed every night at home, she can.

Day 7 Post Op

Well, here we are. One week out from surgery and C is still struggling to get back to herself. 7 full days after surgery.

This Fontan surgery was not suppossed to be this difficult. Coming into this surgery, we already knew about the things that would be a challenge. We knew she could develop pleural effusions, fluid around the lungs, keeping us here while the fluid drained. We knew her body would have a harder time adapting to her new psyiology, new circulation. We knew all the same risks and complications from the previous two surgeries. Even knowing what we did, I was not prepared to see C, 7 days later, still struggling. She was such a super, rockstar the first two surgeries. She sailed right through those with minimal, to no complications. Our roughest patch to date was when she went into arrhythmia 8 days post op after her second surgery. Even with that, she sailed through that actual surgery and was her sweet, smiley self by day 3.

Now here we are, after surgery, and C is the sickest she has ever been. The most ironic thing, she was super sick before her previous two surgeries and she rocked them, coming out better than before. This time she was super strong and the healthiest she has ever been. She was in the perfect place before going in. And, now I am living my very worst nightmare. As I was finally coming to terms with the fact I would indeed have a child with an unfixable broken heart, I realized there really were many things I felt I could handle. The one thing I never, ever wanted is for C to suffer or die in the hospital. I have always wanted a much more comfortable ending for her, surrounded by love and softness during such a harsh time. These are things you will never get in a hospital. Instead you will get medical personnel, people with pity faces and curious parents in the icu for other kids who can't help but look but are secretly thanking God that your child and not their child just became a statistic.

Have I mentioned how much I really hate being in the hospital. I am eternally grateful for such a fabulous institution and the incredibly selfless people who work to help save kids like mine, but I hate the hospital.

So 7 days later, C is still in the hospital. Tonight makes the 10th night I have been away from my home and my family has been seperated. 10 nights of extreme stress and worry. 10 nights of not sleeping in my own bed. 10 nights of being away from boys and C seperated from her brothers. And as of now, I have no idea when the end will be. All Inpray for is that we do inded get to leave with C and the C we had before this awful nightmare began.

Now for the positive news of the day. The EP cardiologist came by again this morning and he told us C is finally back in sinus rhythm (normal rhythm). She no longer needs to be paced to break the super fast a tach she was in. He even was able to discontinue one of her three meds sne is on for the arrhythmia. Yesterday he had made that med a half dose and today, gone. He is still monitoring to figure out which medication and how much of it C wil need to keep her in sinus rhythm. Regular cardiologist told us her left lung continues to clear and look better each day. Her heart function is looking good and he will consider weaning her off the iv med she is getting right now to help function. He was a little concerned with her bloodwork today and becaus she is heterotaxy and aspleenic he had cultures run again and put her back on the high powered antibiotics. At this point, I am not arguing. The very last thing she needs is to get sick. Heartvwise, C is heading in the right direction.

We saw the neurologist again this morning. Still trying to get a feel forvthis whole brain thing and how the doctor is. I was not completely sure I understood what he was saying other than 1) yelling at us for blocking the camera too much, 2) yelling at us when we asked why she seemed so unresponsive to us and he got in there and really woke her up and 3) that he does not think she is having tecnical seizures. He told us what he is seeing loks more like vascular restriction when she is upset thus preventing oxygen from getting to all areas of her brain. At first he was going to add a seative on top of the seizure medication but after we asked him to come back in and have him chastise us some more, he did monitor her a bit while on the eeg and decided the sedation was not necessary. However, C was reconnected to the eeg machine for another 24 hours and he ordered a ct angiogram for her to check brain vasculature tomorrow. Hoping we have more answers tomorrow because everyone seems confused including the neuro doctor.

We really only had one big, bad set back today and that was involving C's line. Poor kid just cannot get a break. She is so super hard to get a line into and she is still on iv meds that absolutely have to go through a stable line like a central line. And wouldn't you know that not only did she lose her very last peripheral iv in her hand, she also lost one of her trans thoraic lines. Of course she had to lose one of the stable central lines and of course one of the meds she is on for the arryhthmia cannot be mixed with other drugs and of course she still is showing depeltions in areas that need to be replenished like potassium and of course she is still on heavy diurectics....grrrr. So she had to have a pic line placed. Seriously. Right now when she totally freaks out and her body shuts down and she has some weird seizure like episode when anyone touches her. Ugh. But, she did well and they got the pic line placed. Much better alternative than having the intensivist place another central line in her neck. So all is good. Then they come back to mess with her because the xray showed the pic line was flipped the wrong way. After doing their stuff, xray had to come back. By then C was just done again and she prety much went to sleep after that.

However, after the pic line was placed and before the pic team came back, I got too see my C again. She was wide awake when we came back after the pic was placed and she said mama, twice. Joy. Then we played games on the tablet for quite awhile and we played with the minnie mouse balloon I got her. And the best thing of all....she laughed. She was laughing with me. I just so overjoyed to see me C is still in there. After seeing her all day yesterday in a catatonic state, I cannot even describe how incredible it was to see my sweet angel laugh with me while doing silly stuff.

I am really hoping C is finally turning the corner to recovery. Although she is not back on food yet, stopped yesterday after the first seizure/episode, we were able to give her juice through her tube. Taking it very slow right now as everything seems to upset her. Getting more meds through gtube instead of through iv, always a step in the right direction. She was dialed down on her other iv arryhthmia med and they may turn tne pacer off tomorrow which means she is closer to getting her pace wires out. We are getting there, I may be starting to see a light at the end of this tunnel. Hoping tomorrow brings more improvement and no further set back

Day 6 Post Op

Tuesday morning. Day 6. And everything changes again. First, C was moved back to the cardiac icu side of the unit. Almost comical, but not really. We again have one of our very favorite nurses from previous stays and shecis all on top of C's care. Such a blessing. Great nurses really make a huge difference. Our nurse yesterday was awesome as well, just new to us as she started at the hospital a year ago. We certainly have our favorites around here...and some we don't like as much.

Anyway, the move went smoothly. C was out it the whole time. She had another dose of choral hydrate and was still pretty slow to come to. Well, Kevin was doing her food and juice this morning and she vomited both. We are used to her vomiting but twice in a row is unusual. I get to the hospital, walk in on this, and I am then informed that C is actually having seizures. Seriously.

I absolutely felt like the floor opened up under me. I don't think I was seeing anything at first. The cardiologist on this week, who I really like, came in and told us what he was thinking. I just started crying. How is it that my baby girl just cannot get a damn break. The cardiologist felt so bad for me he just kept patting my shoulder and telling me he was having the best neurologist come in to look at C. He even said that his own daughter sees this particular neurologist.

The neurologist came in and spoke with us. He did a physical exam and breifly talked to us about what he would do. We then took C to CT scan to see if she had any btrain injury or a bleed. I guess they can also tell from that whether she had a stroke or not. The good news of the day is that she does not have a brain bleed or major brain injury. She is now hooked to an eeg machine that will monitor her for the next 24 hours. Fortunately they did not have to shave her head to put the electrodes on. Once it was determined that she has no big brain trauma there was a collective sigh of relief. However, she is still having seizures and we need to figure out why.

There have been several ideas floated but I do not want to latch on to any one idea until we hear from neurology again. One of the most comomon is that kids will do this after being on cardio bypass. Another thought is that she is so traumatized and anxious from being in the icu. However, again I do not want to start thinking a certain way until we have more information.

Cardiac wise C is still improving. EP cardio was by again and again he turned her pacer down. She is being paced at a rate of 100 now. He originally had her down to 90 but as soon as he walked out the door, she dropped her oxygen saturations so the pace went to 90. Again, the arrhythmia is still there but much, much slower. He actually cut down on one of the medications to see how she will do. There is hope that the meds are working.

Regular cardiology is good with her as well. He thinks she is headed in the right direction and she did not even have an echo today.

Her left lung is even clearer than yesterday. She still has two of her lung chest tubes as they are still draining. Her excess fluid is beginning to come off and she is lookin less puffy. Hope this will help stabilize her numbers even more...oxygen saturations and blood pressure.

Today is nitric weaning day. She is finally coming off some of the oxygen assistence. Nitric is weaned first and then will see about oxygen. She has been doing decent most of the day but does desat here and there. Looks like could also be part of the seizures.

Surgeon came by again just to check and he is good with her as long as her sats stay in the 80's. So no cath in the immediate future.

Now we sit here and wait. As usual. With more stress than we should. I just want to hold C again. Snuggle with her but that is not being allowed right now. She has not been stable long enough for a good run, she continues to need lots of intervention and she still has her arterial line, along with two chest tubes.

It is always funny to me how all three cardio people we saw today did not think much of the seizures. After they learned from the CT scan that there is no bleed, there were all like, meh....its fine. I was like all...oookkkkaaayyy.

So now we wait and see what C will do tonight. Although I am very happy she is getting really good sleep today, I am just torn up that she is so out of it and knowing it is because of seizures just sucks. I just really want my C back.

Day 5 Post Op

Monday C was all settled into her new room 200 feet down the hall in the picu. She seemed to be doing better, minus the whole sleep thing. Sunday night was just horrible and the goal for the day was to let C rest.

Her EP cardiologist came by in the morning and checked on her. He paused her pacer and looked to see what she was doing. Again, the atrial tachycardia is still there but is showing signs of being brought under control with the medications. He was able to slow her paced rate down again to 120 and she did just fine with that all day.

Her surgeon stopped by as well and he is backing off a little now that she is consistently showing oxygen sats in the low 80's. Still not where she should be post Fontan but at this point she is stable and we will take it. No cath in the immediate future.

Cardiology is pretty happy with where she is heart wise. Her echos are still showing good function so they think she is moving in the right direction.

Her chest xrays are getting better each day so the left lung is clearing up. This definetly helps with her oxygen saturations. She had her main chest tube pulled.

We did speak with all the doctors during rounds and discussed the issue of her having no sleep. We even discussed the possibility of her going through withdrawals. The decision was to give her choral hydrate, mild sedative, and see how she did once she had some sleep. I did continue to give her fluid and food during the day and she did ok. She got some really good sleep and when she started to wake up, she seemed to be feeling better. She was awake most of the late afternoon but still real sluggish. I chalked it uo to the drugs and the sleep deprivation. I did not see any more of those really bad episodes she was having all day. She did have one in the morning with Kevin and it scared him enough to call the nurse. But again, she seemed to settle down.

C's nurse last night is awesome and one of our favorites from previous stays. She is really good about getting all her stuff done together and quickly so shevdoes not need to mess with C overmuch. C was looking pretty good when I left. She was comfy and sleeping. Went back to hotel and all was fine.

Day 4 Post Op

Sunday started out well. Very well in fact. C was actually starting to show signs of her old self and I was just so happy to see her feeling better. She was awake and alert when I got to the hospital. She was pointing at stuff and saying a few words. She was showing some enthusiasm for the things around her. We spoke with the doctors on rounds and we were going to start putting stuff in her belly. The NP asked about her diet and I again got the comments about what a weird and crazy diet she is on and how in the world did I come up with it. I always give credit to the amazing heart mom, with the truly miraculous child, who was kind enough to email me back and share her knowledge and information. Even with all the comments about how weird it is, everyone agrees and admits that she looks great and is a great size. So there.

Anyway, we were not given the go ahead to put her right back on that diet but we did start back with her juice/Gatorade. If she would tolerate that in her tummy then we could give her some baby food. She did well both times I gave her fluid so I gave her some pears and she did fine. Because she has been so very, very, very sick and her body and taken such a huge hit, food needs to come very slowly. Her tummy and bowels (or more technically, her guts, and yes that is how all the doctors and nurses refer to them) need time to adjust or we risk killing her with a preforated bowel. Awesome. So, baby food pears it is. At this point I don't care what it is as long as she can have some food. I would be seriously weak without having any food and we certainly were not going to try the Pediasure through the feeding pump again...huge failure...which we told them it would be since she has never tolerated Pediasure or pump feeds. She did do well enough when I gave her pears so she was able to have more later that night. Of course the lactate (indicator of acid build up in her body) jumped a little so everyone gets a little nervous around here when that happens. I was really hoping they would not stop the food again. So far they have not so that is good. Even better, she pooped last night and she had pears this morning and herlactate came down again. All positive signs.

She did lose one more line yesterday. Since she was going back to having stuff in her tummy she could go back on aspirin which means she could stop the heparin drip. Since we did not need the heparin she finally had her central line in her neck removed. Whew. So happy to get rid of that one. C is much more comfotable now as well. She turns her head left and right. In addition the fewer lines you have in your body, the fewer places there are for an infection to brew. The very last thing we need right now is for C to get sick.

Her left lung continues to clear up and her echos continue to show good function. She is still being externally paced at a rate of 135which is a tad higher than normal but seems to be holding steady. She is also still retaining lots of fluid so she is on two diurectics to help her dump all the extra stuff. With all the extra fluid her lung chest tubes continue to drain as well.

Now the really bad part. C is refusing to fall asleep. And then when she finally does, something has to happen, she gets startled awake and wakes up terrified. I mean, completely terrified. She shakes and jerks like she is having a seizure. We know she is not seizing because when we hold her hand and get right up in her face, she calms down. However, the poor child has not had any real sleep in probably 36 hours. She is absolutely sleep deprived. I hate seeing her like this. And due to lack of sleep, she is completely zoned out. By the end of the day, she was back to looking like the C from Saturday, unresponsive, not alert, foggy and groggy. She was settled, relatively, when I left last night but Kevin reported that she had a terrible night. She never did go back to sleep from earlier when the nurse came in and woke her up completely when she could not get the med pumps right and turned on the lights and all of her pumps started beeping. Then she finally had a chance to rest between 11pm and Midnight and the cleaning lady came in to get the trash right at 11:30pm. Then blood draw for gas check at midnight. Kevin finally put a movie on an let C watch that while he got a couple hours of sleep.

Then the very worst part of the whole night/morning was when the nurse changed the battery in the external pacer and apparently put the batteryin backwards and the pacer shut off. Um, yeah. The doctor went ahead and switched the pacer out just to make sure we had a pacer that was not malfunctioning but Kevin says the nurse put the battery in wrong. So C showed an arrhythmia run the morning up to 170. Awesome. Making a mistake with the pacer is not exactly something that makes me happy.

And speaking of issues to take to management. Yesterday, C had to be moved from the Cardiac ICU to the PICU because she was the only one in the unit. Management decided that the unit must be shut because they must have 2 nurses when the unit is open and they cannot have 2 nurses for just one patient. So, despite the fact that my daughter, who falls under pediatric last time I checked, had major open heart surgery five days ago, almost died during recovery and still requires a lot ofsupport and is you know, a cardiac patient, according to management policy she will be just fine to be moved and placed outside the cardiac icu. Again, um, yeah. Awesome. So we got all our stuff and moved literally 200 feet down the hall (the pcicu and picu connect here) so the pcicu could be closed. C freaked out. She seriuosly thought she was going back to a bad place. She started crying, her blood pressure skyrocketed and it took hours for her to settle down. Again traumatizing my already traumatized daughter and keeping her from the rest she so desperately needs to recover. I really hope the hospital saved a bunch of money with that decision. If not I am sure the $300,000 bill they will send me will cover it. Oh, the best part is she can be moved back to the pcicu tomorrow more than likely because they know they have kids on the schedule who will be coming up to pcicu. So frustrating. I would not move her again if the opportunity arises except for the issue that picu rooms are not really set up to accomidate heart kids. So freaking frustrating.

we will see what tomorrow brings.

Day 3 Post Op

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.

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.

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.

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?

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.