The Short Update

I know there are some people who are following C's progress only through the blog, so I do apologize for the lack of updates. We did finally make it home on Friday, May 4. C was in the hospital another 8 days after we were first told that we would be discharged. I have a lot of mixed emotions right now and I just have not had the energy or desire to write about C's progress. I will keep working as I do want to finish the posts on the rest of C's journey post Fontan as I really like to have a journal of what she went through. However, we are home. C is getting better and stronger each day. Her body is slowly adapting to her new physiology and starting to stop producing fluid. But, she is still on 1 liter of oxygen as her oxygen saturations remain severly low. I cannot even get into that right now but know that all the prayers and well wishes have and are working because C is home and doing much, much better.

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