Sunday, October 4, 2009
Oct 4 p.m.
We have one sick little lady on our hands. Today was possibly the worst day so far. The BEST part about it was all the fluid that drained from her lungs through the chest tube. I believe they got 140-160 mls out!
They started the CRRT (continuous dialysis) and kindly invited us to leave the room while they got that going. Not knowing how her body would react to it, they had 3 doctors in her room and 3 nurses. Fortunately, things went well as they got that going. CRRT can make the body temp drop--and that it did.
About an hour after they had everything settled from the CRRT, her blood pressure dropped dramatically. Back down to 53/20 ish. Soon after that her heart rate dropped down to 60. Add on top of that her temp. dropping to 35.4 and you have some concerned doctors, nurses, and parents. They gave her more of the epi (blood pressure boosting medicine) along with some more fluids--albumen and more red blood cells. I believe that's the 3rd blood transfusion she's had today. The doctor came back and they've been trying to warm this little body up for the past 2 hours. The heater is cranked up in the room, she has multiple warm blankets and pads under and on top of her, and a "bair hugger" blanket that blows warm air directly onto her body. They put warm saline bottles on top of the syringe she is receiving blood from to try to warm it up. They also wadded up the line that the blood is going through and put it in another warm saline bottle to make it as warm before it goes into her. Earlier today we were happy for "cold blood" to bring her fever down and tonight we're trying to make it A.W.A.P (as warm as possible)! They also adjusted a few of her meds to even out some of the other things out of wack.
She didn't show much progress on her temp or the heart rate for quite some time, although the blood pressure did come up with the boost of that medicine. The thing that helped the most was that as the sedition med was starting to wear off, she "woke up." That got her heart rate up! They put her back to sleep quickly and after settling back down, her heart rate has remained around 90. The warming methods eventually kicked in and her temp is now back up to 36.2.
We've had our ups and downs tonight. Right now she is stable again. Other good news is that so far, nothing has shown up positive on the cultures they drew to test for any virus. Hopefully the fever from earlier today is simply her body's way of telling us she's NOT having fun with all of this!
They started the CRRT (continuous dialysis) and kindly invited us to leave the room while they got that going. Not knowing how her body would react to it, they had 3 doctors in her room and 3 nurses. Fortunately, things went well as they got that going. CRRT can make the body temp drop--and that it did.
About an hour after they had everything settled from the CRRT, her blood pressure dropped dramatically. Back down to 53/20 ish. Soon after that her heart rate dropped down to 60. Add on top of that her temp. dropping to 35.4 and you have some concerned doctors, nurses, and parents. They gave her more of the epi (blood pressure boosting medicine) along with some more fluids--albumen and more red blood cells. I believe that's the 3rd blood transfusion she's had today. The doctor came back and they've been trying to warm this little body up for the past 2 hours. The heater is cranked up in the room, she has multiple warm blankets and pads under and on top of her, and a "bair hugger" blanket that blows warm air directly onto her body. They put warm saline bottles on top of the syringe she is receiving blood from to try to warm it up. They also wadded up the line that the blood is going through and put it in another warm saline bottle to make it as warm before it goes into her. Earlier today we were happy for "cold blood" to bring her fever down and tonight we're trying to make it A.W.A.P (as warm as possible)! They also adjusted a few of her meds to even out some of the other things out of wack.
She didn't show much progress on her temp or the heart rate for quite some time, although the blood pressure did come up with the boost of that medicine. The thing that helped the most was that as the sedition med was starting to wear off, she "woke up." That got her heart rate up! They put her back to sleep quickly and after settling back down, her heart rate has remained around 90. The warming methods eventually kicked in and her temp is now back up to 36.2.
We've had our ups and downs tonight. Right now she is stable again. Other good news is that so far, nothing has shown up positive on the cultures they drew to test for any virus. Hopefully the fever from earlier today is simply her body's way of telling us she's NOT having fun with all of this!
Oct. 4 a.m.
This morning we've been faced with a more bumps in the road. She spiked a higher fever in the middle of the night, 39.5 C and her blood pressure has continued to drop. These two symptoms lead them to believe she may have an infection. With 3 IVs, 2 lines in each groin, a chest tube, her hemo-dialysis catheter, a breathing tube, and a urine catheter an infection could have gotten in anywhere. They added 3 more antibiotics to cover for whatever infection it might be. With all that said, there still is the possibility that the fever could simply be her body reacting to all the trauma it's going through as well. Either way, she'll be covered with the antibiotics. So far all the cultures they've ran have been negative, but in another day or two we'll know for sure if she does have an infection.
To bring her temp down and because her hemoglobin was down again, they gave her another blood transfusion. The "cold blood" brought her body temp down quickly. They also started her on her regular dialysis, which also helped to bring the temp down. She's now down to 36.5 C.
The next worry this morning was the fluid. She looked and sounded worse this morning than she did last night. A chest x-ray this morning showed that there was quite a bit of fluid around her lungs and they wanted to get that out. They first thought they would have to put in another tube to allow that fluid to drain; but after talking with the surgeon who did the heart surgery, he said that chest tube she has in now should be able to drain the fluid around her lungs. But she needed to be rolled onto her tummy for that to happen. They gave her even stronger sedation meds because she kept waking up when they were rolling her over. One of the meds they gave her actually temporally paralyzed her body, so even if she did wake up, she couldn't move. With her on her tummy, they didn't want the breathing tube to be bothered with her moving her head or her bringing her arms up to grab it.
Good news is that it worked. Fluid started draining quite well from the chest tube and they got A LOT of fluid out of her lungs, without having to put in another tube. They will keep her on her tummy for 6 hours and see how much more fluid will drain and then switch her back over to her back for the next 6 hours. (In the past three hours, the chest tube has drained 120 mls. from her lungs! That is huge!)
Since we are not able to get much fluid off during her regular 3 hour hemo-dialysis (they only got 70 ml off this morning, compared to the 200 ml they were hoping for) they have decided to start her on Continuous Renal Replacement Therapy (CRRT). She hasn't done this type of dialysis before. It is a much 'gentler/slower' type of dialysis that will run 24 hours a day. The hope is to be able to remove fluid slowly over a longer period of time until we're able to get her back down to her normal/dry weight. They plan to start that within the next 2 hours....and just as a guess from the doctor, they believe she may be on that continuously for the next 3 days. They have also started her on another medicine to help boost her blood pressure up.
She most likely won't be able to wake up today.
To bring her temp down and because her hemoglobin was down again, they gave her another blood transfusion. The "cold blood" brought her body temp down quickly. They also started her on her regular dialysis, which also helped to bring the temp down. She's now down to 36.5 C.
The next worry this morning was the fluid. She looked and sounded worse this morning than she did last night. A chest x-ray this morning showed that there was quite a bit of fluid around her lungs and they wanted to get that out. They first thought they would have to put in another tube to allow that fluid to drain; but after talking with the surgeon who did the heart surgery, he said that chest tube she has in now should be able to drain the fluid around her lungs. But she needed to be rolled onto her tummy for that to happen. They gave her even stronger sedation meds because she kept waking up when they were rolling her over. One of the meds they gave her actually temporally paralyzed her body, so even if she did wake up, she couldn't move. With her on her tummy, they didn't want the breathing tube to be bothered with her moving her head or her bringing her arms up to grab it.
Good news is that it worked. Fluid started draining quite well from the chest tube and they got A LOT of fluid out of her lungs, without having to put in another tube. They will keep her on her tummy for 6 hours and see how much more fluid will drain and then switch her back over to her back for the next 6 hours. (In the past three hours, the chest tube has drained 120 mls. from her lungs! That is huge!)
Since we are not able to get much fluid off during her regular 3 hour hemo-dialysis (they only got 70 ml off this morning, compared to the 200 ml they were hoping for) they have decided to start her on Continuous Renal Replacement Therapy (CRRT). She hasn't done this type of dialysis before. It is a much 'gentler/slower' type of dialysis that will run 24 hours a day. The hope is to be able to remove fluid slowly over a longer period of time until we're able to get her back down to her normal/dry weight. They plan to start that within the next 2 hours....and just as a guess from the doctor, they believe she may be on that continuously for the next 3 days. They have also started her on another medicine to help boost her blood pressure up.
She most likely won't be able to wake up today.
Saturday, October 3, 2009
Oct 3 Update
Things didn't progress quite as smoothly as we anticipated today. They were able to remove about 160 ml during dialysis and they also gave her a diuretic to try to get her to urinate more fluid. The diuretic didn't do much good at all. And the 160 was good, but not quite the dent we were hoping for compared with the 2,000 ml's she has on. Her lungs sounded much better with the amount of fluid they were able to take off on dialysis, but they were still quite "wet" and "crackly." You could feel the crackles just by placing your hands on her chest. Because of this, they decided not to remove the breathing tube. They didn't think she'd be able to sustain breathing on her own with her lugs still so wet. Tomorrow they plan to do dialysis again first thing in the morning and hopefully remove up to 200 ml of fluid. Definitely making baby steps in the right direction.
Her blood pressure is still lower than they would like; so she is getting "epi" (kind of like an adrenaline boost) to keep it up. They tried to 'wean' her off the epi about 4:00 this afternoon and cut her dose in half, but her blood pressure started dropping too low and they had to go back up to the full dose. It's because of her low blood pressures that we're not able to remove much fluid on dialysis. It will definitely take a few days to get her back to her normal weight.
She also has had a fever for the past 24 hours and they figured that it was from the trauma from the surgery. However, if it was from trauma, it should only last about 24 hours post-surgery. So when it spiked to 38.8 C tonight, they took blood and urine cultures to see if she may have gotten an infection from everything that has been going on. It will take about 24 hours before we'll know if she does have an infection; however, she is on an antibiotic now to cover whatever it may be.
In spite of this all, everyone who comes in to see her or who works with her in any way says she looks remarkably well and is tolerating everything very well. She's a fighter. She wants to be awake from the anesthesia. When the anesthesia medicine starts to wear down, she wakes up very quickly and fights to stay awake. Because she has the breathing tube in, you can't hear her voice or hear her cry. But you can 'see' it. She opens her eyes, stretches her arms and legs, arches her back, and tries to stay awake. But they don't want her awake with the tube still in, so they quickly put her back to sleep with more medicine. It will be good to hear her voice again and "see" her sweet spirit again tomorrow.
Benson came to visit tonight. We tried to prepare him for how Claire would look, but his first comment was, "I didn't think that was Claire." After just staring at her for a while and simply saying "uh hu" as we talked about the tubes, monitors, tape, lights, etc, he finally said "I just want to sit down here and stay by her for a little bit." We let him stay and he then got a little more comfortable and started asking his own questions. "Why is there tape on her face, what's that tube in her mouth for, why is she asleep, why doesn't she have her pants and shirt on," were some of his 4-year old questions. At the end he said good bye and told Claire that he loved her and missed her. He asked to give her a kiss, but because of a little stuffy nose he has, we told him it would be best not to touch her so we didn't get her sick. On the way to the car he again told me that he missed her and hoped she got all better soon so she could play with him. He is SUCH a sweet, amazing big brother. He REALLY does love that girl, just as much as the rest of us.
Hoping for a quiet night, a few more zzzzzzzzzzzzzz's and a day full of GOOD events tomorrow.
Her blood pressure is still lower than they would like; so she is getting "epi" (kind of like an adrenaline boost) to keep it up. They tried to 'wean' her off the epi about 4:00 this afternoon and cut her dose in half, but her blood pressure started dropping too low and they had to go back up to the full dose. It's because of her low blood pressures that we're not able to remove much fluid on dialysis. It will definitely take a few days to get her back to her normal weight.
She also has had a fever for the past 24 hours and they figured that it was from the trauma from the surgery. However, if it was from trauma, it should only last about 24 hours post-surgery. So when it spiked to 38.8 C tonight, they took blood and urine cultures to see if she may have gotten an infection from everything that has been going on. It will take about 24 hours before we'll know if she does have an infection; however, she is on an antibiotic now to cover whatever it may be.
In spite of this all, everyone who comes in to see her or who works with her in any way says she looks remarkably well and is tolerating everything very well. She's a fighter. She wants to be awake from the anesthesia. When the anesthesia medicine starts to wear down, she wakes up very quickly and fights to stay awake. Because she has the breathing tube in, you can't hear her voice or hear her cry. But you can 'see' it. She opens her eyes, stretches her arms and legs, arches her back, and tries to stay awake. But they don't want her awake with the tube still in, so they quickly put her back to sleep with more medicine. It will be good to hear her voice again and "see" her sweet spirit again tomorrow.
Benson came to visit tonight. We tried to prepare him for how Claire would look, but his first comment was, "I didn't think that was Claire." After just staring at her for a while and simply saying "uh hu" as we talked about the tubes, monitors, tape, lights, etc, he finally said "I just want to sit down here and stay by her for a little bit." We let him stay and he then got a little more comfortable and started asking his own questions. "Why is there tape on her face, what's that tube in her mouth for, why is she asleep, why doesn't she have her pants and shirt on," were some of his 4-year old questions. At the end he said good bye and told Claire that he loved her and missed her. He asked to give her a kiss, but because of a little stuffy nose he has, we told him it would be best not to touch her so we didn't get her sick. On the way to the car he again told me that he missed her and hoped she got all better soon so she could play with him. He is SUCH a sweet, amazing big brother. He REALLY does love that girl, just as much as the rest of us.
Hoping for a quiet night, a few more zzzzzzzzzzzzzz's and a day full of GOOD events tomorrow.
I have no idea what day it is!
Yesterday was nothing like we expected it to be. Unreal.
We go to the hospital yesterday at 9:30 a.m. and she got called into surgery at 1:30 p.m. Things didn't go exactly perfect. There was a problem when they were putting the new catheter in. They put a 'soft 'wire in where the old catheter goes and were planning to put the new catheterin the same place. That wire they put in to "keep the place" of the catheter line poked too far down and cut into the right aterium of the heart. Blood started to flow into the sac around the heart and it started to clot. The surgeon didn't think it was going to cause a problem, and her vitals seemed okay. So they left everything alone, got the new catheter in okay, and finished surgery.
Right in the middle of this surgery, the transplant surgeon got a call that there was a kidney and liver available for Claire. Their plan was to proceed to transplant after the organs arrived about 8 hours later.
After the surgery they brought Claire up to the Pediatric Intensive Care Unit to recover. We got to see her in the room as they tried to get her settled. She was still out from the anthiesia, had a breating tube in, and had one IV through her hand. As they tried to get her settled, more and more doctors came in and surrounded her bed. We could sense something was not right. I looked at her last blood pressure and it was 50/23. Very LOW. Too low. They couldn't get her blood pressure to come up and with about 13 people surrounding her bed and frantically working on her, they decided to take her back to the operating room and see what was going on with her heart. They figured the blood clot that was in the sac of her heart was compressing against her heart and not allowing it to work properly, thus the low pressure. They rushed her to the OR.
2 hours later, the surgoen came out and with a sigh of relief said "she's okay." Good news is she's okay and they got the problem resolved. Bad news is it took open heart surgery to do it. They cut open her sternum, opend up the area, and found a rather large clot flopping around her heart. They took the clot out. There was indeed a hole in the right aterium were the blood was leaking into the heart, which then clotted and grew bigger and bigger. They sewed the small puncture closed so it wouldn't leak more blood into the sac around the heart and closed her back up. Her sternum was closed shut with wire and they stiched her skin back up.
The transplant surgeon was following this whole surgery and her gut feeling was to NOT proceed to transplant. Recovering from open heart surgery is a BIG deal, in and of itself. Adding transplant on top of that didn't seem like a wise decision. After talking with ALL the doctors under Clarie's care, they offically decided that even though the organs did arrive and would have been a suitable match for her, they would pass on the transplant.
Those organs must not have been the right ones for Claire. Too bad she had to go through all of this for us to find that out.
She is currently in the Intensive Care Unit of the cardiology department. She still is out with the anthesia and has a breating tube. She has 5 IV's coming from her body. One in each foot. One in each groin. One in her left hand. They also placed a tube coming out from her heart to drain an more excess blood that may still be ramaining around that sac in the heart. The catherter placed for dialysis is working well.
To say that she could have been taken from this earth more than once yesterday would be truthful. You could see that look of worry on many faces. Miracles still do occur.
Main focus for today is getting the breating tube out this afternoon and allow her to wake up. Pretty sure she's not going to be a happy girl when she wakes up. Other top priority is to get fluid off from her. She got almost 2 Liters of fluid yesterday through the surgeries, a blood transfusion, and other liquid medication she's been given. Not having working kidneys, all that fluid just stays in her body and makes her puffy. We did dialysis last night and removed very little fluid because her blood pressure was still quite low and removing fluid only makes blood pressure lower. She is currently on dialysis and they are removing more fluid. It will take 2-3 days to slowly get all the fluid off. We can't do it fast because we dont' want her blood pressure to drop too fast.
Pray for the princess.
We go to the hospital yesterday at 9:30 a.m. and she got called into surgery at 1:30 p.m. Things didn't go exactly perfect. There was a problem when they were putting the new catheter in. They put a 'soft 'wire in where the old catheter goes and were planning to put the new catheterin the same place. That wire they put in to "keep the place" of the catheter line poked too far down and cut into the right aterium of the heart. Blood started to flow into the sac around the heart and it started to clot. The surgeon didn't think it was going to cause a problem, and her vitals seemed okay. So they left everything alone, got the new catheter in okay, and finished surgery.
Right in the middle of this surgery, the transplant surgeon got a call that there was a kidney and liver available for Claire. Their plan was to proceed to transplant after the organs arrived about 8 hours later.
After the surgery they brought Claire up to the Pediatric Intensive Care Unit to recover. We got to see her in the room as they tried to get her settled. She was still out from the anthiesia, had a breating tube in, and had one IV through her hand. As they tried to get her settled, more and more doctors came in and surrounded her bed. We could sense something was not right. I looked at her last blood pressure and it was 50/23. Very LOW. Too low. They couldn't get her blood pressure to come up and with about 13 people surrounding her bed and frantically working on her, they decided to take her back to the operating room and see what was going on with her heart. They figured the blood clot that was in the sac of her heart was compressing against her heart and not allowing it to work properly, thus the low pressure. They rushed her to the OR.
2 hours later, the surgoen came out and with a sigh of relief said "she's okay." Good news is she's okay and they got the problem resolved. Bad news is it took open heart surgery to do it. They cut open her sternum, opend up the area, and found a rather large clot flopping around her heart. They took the clot out. There was indeed a hole in the right aterium were the blood was leaking into the heart, which then clotted and grew bigger and bigger. They sewed the small puncture closed so it wouldn't leak more blood into the sac around the heart and closed her back up. Her sternum was closed shut with wire and they stiched her skin back up.
The transplant surgeon was following this whole surgery and her gut feeling was to NOT proceed to transplant. Recovering from open heart surgery is a BIG deal, in and of itself. Adding transplant on top of that didn't seem like a wise decision. After talking with ALL the doctors under Clarie's care, they offically decided that even though the organs did arrive and would have been a suitable match for her, they would pass on the transplant.
Those organs must not have been the right ones for Claire. Too bad she had to go through all of this for us to find that out.
She is currently in the Intensive Care Unit of the cardiology department. She still is out with the anthesia and has a breating tube. She has 5 IV's coming from her body. One in each foot. One in each groin. One in her left hand. They also placed a tube coming out from her heart to drain an more excess blood that may still be ramaining around that sac in the heart. The catherter placed for dialysis is working well.
To say that she could have been taken from this earth more than once yesterday would be truthful. You could see that look of worry on many faces. Miracles still do occur.
Main focus for today is getting the breating tube out this afternoon and allow her to wake up. Pretty sure she's not going to be a happy girl when she wakes up. Other top priority is to get fluid off from her. She got almost 2 Liters of fluid yesterday through the surgeries, a blood transfusion, and other liquid medication she's been given. Not having working kidneys, all that fluid just stays in her body and makes her puffy. We did dialysis last night and removed very little fluid because her blood pressure was still quite low and removing fluid only makes blood pressure lower. She is currently on dialysis and they are removing more fluid. It will take 2-3 days to slowly get all the fluid off. We can't do it fast because we dont' want her blood pressure to drop too fast.
Pray for the princess.
Thursday, October 1, 2009
Day 17
Today we got home at 10:45 a.m. That's never a good thing. Claire's catheter didn't work today. She didn't get dialysis. There is a clot in the red port and they can't push or pull anything from it. They were going to have us go to the radiology dept. tomorrow morning to see if they could un-clot the catheter without replacing the entire thing. Long story short, the Doctor called me tonight and said she's been talking with radiology, surgery, nurses and other doctors and they've decided it's going to be better to pull the catheter and put a new one in, most likely on the other side of her abdomen. So surgery is "scheduled" for tomorrow...but not really scheduled at all. Of course they're booked, but will squeeze us in "sometime" tomorrow. That means a long day in the surgery waiting room, with a little one who can't have anything to eat or dink after midnight tonight. Not fun having a hungry child who doesn't quite understand why you simply won't feed them! Since she missed dialysis today, Claire will still do her 3-hour dialysis tomorrow after the surgery with the new catheter. She will also have to go in on Sunday to make up for missing today. It's going to be a long day. Hard for the princess. And I guess that means hard for all of us. Our friend will take Benson to preschool in the morning and Jared will pick him up when it's over and take him to another friend's house to play for the afternoon. Thank goodness for wonderful friends who are willing to step right up and help out anytime with anything!!
One positive note: I decided to make good use of my early day off and made homemade rolls and beef vegetable soup. Dinner was scrumptious!
One positive note: I decided to make good use of my early day off and made homemade rolls and beef vegetable soup. Dinner was scrumptious!
Subscribe to:
Posts (Atom)