Thursday, April 26, 2012
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.
Tuesday, April 24, 2012
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.
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.
Saturday, April 21, 2012
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.
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.
Wednesday, April 18, 2012
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
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
Tuesday, April 17, 2012
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.
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.
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.
Monday, April 16, 2012
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.
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.
Subscribe to:
Posts (Atom)