We all know that Kinley has not had an easy road so far, but today (June 7th) she gave us our biggest scare yet. Around 6:15 pm Kinley's BP began to rise to its highest levels ever. (To be honest, at one point she had the same BP as her mother.) What was so concerning to all of us was that Kinley was sleeping quietly and looked peaceful during all of this. Normally when Kinley's BP goes up she is either fussy or has a wet diaper. Dr. S informed us that this high BP could be a sign that she has a bleed in her brain so he ordered a head ultrasound for Kinley. He also ordered a dose of hydralazine (a medication to help lower BP) for Kinley. Dr. S said that he could not see any outward signs that she has a brain bleed, but with this high of BP he wanted to be sure. Unfortunately the ultrasound techs are "on call" on the weekends and Dr. S was thinking that it would be at least an hour before they arrive. That news put our stress on the same level as Kinley's BP. Luckily, for our health and sanity, there was an ultrasound tech already at the hospital and she arrived at Kinley's bedside around 6:50 pm. Going back to unfortunate for us, it was almost shift change and we had to leave Kinley's side. We sat in the lobby of the NICU, thinking thoughts that no parent wants to think, until Dr. S came out to find us. It was probably 7:10 pm when Dr. S came to talk to us. He told us that neither he nor the ultrasound technician could see a brain bleed, but they will still send the test off to get a final analysis by the radiologist. Needless to say, Kathy and I were almost crying tears of joy from hearing that Kinley does not have a brain bleed. After Dr. S headed back in to the NICU we decided to head down to the cafeteria for some celebratory ice cream.
After the shift change, and our ice cream, we returned to find Kinley resting with a BP rate much lower than when we left her.
Saturday, June 7, 2008
Saturday, June 7th - Kinley knows what she is doing
When we arrived at Kinley's baby station today we found Dot and Tiffani taking care of our little girl. They gave us the latest update on Kinley.
Last night was a rough one for Kinely. If you remember from yesterday, her stats were not great once she was switched back to the ECMO machine for full support. She had a hard time keeping her oxygen up and her CO2 down even with some tweaking of her ECMO settings. The doctors ordered a chest x-ray to see if anything else could be causing the problem. The x-ray showed that her right lung was not as open as it was earlier in the day. Also, if you can remember from yesterday, Kinley got a tracheal aspirate to see if she had an infection in her lungs. The tracheal aspirate did show signs of an infection and the continuous mucus being removed from Kinley's breathing tube has confirmed it. Kinley is now on 3 different antibiotics to treat the infection. It is a good thing that Kinley let us know that she was not ready to come off of ECMO because it would have been really hard for her to be responsible for all of her gas exchange and fight off the infection at the same time. She is such a smart girl! Kinley's been moved back to the high frequency ventilator to help open her lungs back up and her morphine drip has been increased to 80. We are going to let her rest over the weekend and fight off her infection and hopefully early next week she will be ready to come off of ECMO.
Kinley also got a new roommate overnight. All of the commotion made her a little agitated and she required a dose of morphine and versed to help calm her down.
This morning Dr. S ordered an abdominal ultrasound because her abdomen looked swollen. The radiologist has not been able to view the ultrasound results yet, but an initial viewing looks like Kinley's liver is enlarged. There is nothing we can do to get it back to normal right now because its swelling is directly connected with Kinley's pulmonary hypertension. Once her hypertension is under better control her liver should return to its normal size.
Overall, Kinley is looking much better than she was yesterday. Her entire body is more pink. It was kind of white and gray yesterday. The mucus coming from her lungs, although still constant, is less colored. Dot and Tiffani suction Kinley's breathing tube every hour to make sure there isn't too much mucus build up. One big concern Kathy and I have today is that Kinley's BP is very high. We are worried that her high BP will cause a bleed in her brain and since she is on heparin (a blood thinner) that could cause serious brain damage. The doctors continue to monitor her blood pressure, but are hesitant to try to lower it right now. According to the doctors, if her blood pressure is higher in her extremities, it means that hopefully it is higher than the pressure in her lungs and this might be Kinley's way of correcting her pulmonary hypertension. We will just have to nervously wait and see.
Last night was a rough one for Kinely. If you remember from yesterday, her stats were not great once she was switched back to the ECMO machine for full support. She had a hard time keeping her oxygen up and her CO2 down even with some tweaking of her ECMO settings. The doctors ordered a chest x-ray to see if anything else could be causing the problem. The x-ray showed that her right lung was not as open as it was earlier in the day. Also, if you can remember from yesterday, Kinley got a tracheal aspirate to see if she had an infection in her lungs. The tracheal aspirate did show signs of an infection and the continuous mucus being removed from Kinley's breathing tube has confirmed it. Kinley is now on 3 different antibiotics to treat the infection. It is a good thing that Kinley let us know that she was not ready to come off of ECMO because it would have been really hard for her to be responsible for all of her gas exchange and fight off the infection at the same time. She is such a smart girl! Kinley's been moved back to the high frequency ventilator to help open her lungs back up and her morphine drip has been increased to 80. We are going to let her rest over the weekend and fight off her infection and hopefully early next week she will be ready to come off of ECMO.
Kinley also got a new roommate overnight. All of the commotion made her a little agitated and she required a dose of morphine and versed to help calm her down.
This morning Dr. S ordered an abdominal ultrasound because her abdomen looked swollen. The radiologist has not been able to view the ultrasound results yet, but an initial viewing looks like Kinley's liver is enlarged. There is nothing we can do to get it back to normal right now because its swelling is directly connected with Kinley's pulmonary hypertension. Once her hypertension is under better control her liver should return to its normal size.
Overall, Kinley is looking much better than she was yesterday. Her entire body is more pink. It was kind of white and gray yesterday. The mucus coming from her lungs, although still constant, is less colored. Dot and Tiffani suction Kinley's breathing tube every hour to make sure there isn't too much mucus build up. One big concern Kathy and I have today is that Kinley's BP is very high. We are worried that her high BP will cause a bleed in her brain and since she is on heparin (a blood thinner) that could cause serious brain damage. The doctors continue to monitor her blood pressure, but are hesitant to try to lower it right now. According to the doctors, if her blood pressure is higher in her extremities, it means that hopefully it is higher than the pressure in her lungs and this might be Kinley's way of correcting her pulmonary hypertension. We will just have to nervously wait and see.
Friday, June 6, 2008
Friday, June 6th - The Gauntlet has been delayed
We arrive a bit after 8:00 am. Overall, Kinley's ECMO and vent settings are completely the same as when we left yesterday. The oxygen input is still disconnected from Kinley's ECMO machine and the flow is still at its normal setting. There was a small adjustment to her high frequency ventilator to help her get rid of some excess CO2. During the night, Kinley received 2 extra doses of versed (a sedative) to help her remain calm and relaxed. Kinley's urine output is still going strong, for the past 24 hours she is at about 6.5 cc/kilo/hr.
Not long after we arrive, Bridget (echo technician) comes in with her portable ultrasound machine. Kinley's ECMO flow is turned down and Bridget begins with the heart echo test. It only takes about 10 minutes to complete the test, then Bridget leaves to take the test results to the cardiologist for a final analysis.
Around 10:30 am we get some blood gas test results back. Her CO2 is at 62 (okay, but not great) and her O2 is at 109 (good). We also find out that Kinley's chest x-ray looks good, her lungs are open, and that her head ultrasound came back with no concerns.
At 12:15 pm Dr. W came by with the heart echo test results. Kinley will not be making the move off of the ECMO machine today. The heart echo test shows that Kinley's pulmonary pressure has not changed since yesterday. It is still too high and therefore too close to her arterial blood pressure. (If Kinley were to come off of ECMO with high pulmonary pressure, that would be a big concern because it means that her pulmonary hypertension could come back and that would be an even bigger concern because Kinley would not be able to go back on ECMO.) This means that the oxygen input will be reconnected to Kinley's ECMO machine and the ECMO machine will return to being her full support. She will be moved back to the conventional ventilator, which will be at minimal settings, to help rest her lungs. The NO (nitrous oxide) machine will remain to help lower Kinley's pulmonary pressure. Dr. W. has also ordered a tracheal aspirate. This is a culture of the mucus in Kinley's lung. This will help to tell us if Kinley has an infection that is affecting her pulmonary pressure. Overall, they will let Kinley rest for the weekend and check back with her on Monday to see if she is ready to come off of ECMO then.
At 12:30 pm, oxygen is reconnected to the ECMO machine.
At 1:00 pm, the conventional ventilator is in place and running.
At 2:10 pm we get the results from Kinley's most recent blood gas test. Her CO2 is 65 and her O2 is 50. This is a bit concerning because the ECMO machine is back in charge of Kinley's gas exchange and this means that her CO2 should be lower and her O2 should be much higher. If you can remember back to yesterday and/or earlier today, Kinley was putting up better numbers than this. Dr. W has come back to help make adjustments to the ECMO machine.
Some good news for Kinley today, she received a new friend that she seems to really like. Here are a couple of pictures of Kinley with her new "sugarbear".
Not long after we arrive, Bridget (echo technician) comes in with her portable ultrasound machine. Kinley's ECMO flow is turned down and Bridget begins with the heart echo test. It only takes about 10 minutes to complete the test, then Bridget leaves to take the test results to the cardiologist for a final analysis.
Around 10:30 am we get some blood gas test results back. Her CO2 is at 62 (okay, but not great) and her O2 is at 109 (good). We also find out that Kinley's chest x-ray looks good, her lungs are open, and that her head ultrasound came back with no concerns.
At 12:15 pm Dr. W came by with the heart echo test results. Kinley will not be making the move off of the ECMO machine today. The heart echo test shows that Kinley's pulmonary pressure has not changed since yesterday. It is still too high and therefore too close to her arterial blood pressure. (If Kinley were to come off of ECMO with high pulmonary pressure, that would be a big concern because it means that her pulmonary hypertension could come back and that would be an even bigger concern because Kinley would not be able to go back on ECMO.) This means that the oxygen input will be reconnected to Kinley's ECMO machine and the ECMO machine will return to being her full support. She will be moved back to the conventional ventilator, which will be at minimal settings, to help rest her lungs. The NO (nitrous oxide) machine will remain to help lower Kinley's pulmonary pressure. Dr. W. has also ordered a tracheal aspirate. This is a culture of the mucus in Kinley's lung. This will help to tell us if Kinley has an infection that is affecting her pulmonary pressure. Overall, they will let Kinley rest for the weekend and check back with her on Monday to see if she is ready to come off of ECMO then.
At 12:30 pm, oxygen is reconnected to the ECMO machine.
At 1:00 pm, the conventional ventilator is in place and running.
At 2:10 pm we get the results from Kinley's most recent blood gas test. Her CO2 is 65 and her O2 is 50. This is a bit concerning because the ECMO machine is back in charge of Kinley's gas exchange and this means that her CO2 should be lower and her O2 should be much higher. If you can remember back to yesterday and/or earlier today, Kinley was putting up better numbers than this. Dr. W has come back to help make adjustments to the ECMO machine.
Some good news for Kinley today, she received a new friend that she seems to really like. Here are a couple of pictures of Kinley with her new "sugarbear".
Thursday, June 5, 2008
Thursday, June 5th - The Gauntlet Begins: Part 3
It is a good thing Kinley has a good amount of blood because the results from yet another blood gas test came back at 3:45 pm. Kinley's CO2 is 55 and her O2 is 63.
At 4:00 pm Dr. P came to talk with Kathy and I about Kinley and her ECMO treatment. The results from the heart echo have come back from the cardiologist and the pressure in Kinley's right ventricle has gone up from yesterday morning. Kinley's pulmonary blood pressure (determined by the pressure in her right ventricle) is too close to her arterial blood pressure and therefore the chance of her pulmonary hypertension coming back is greater. The new plan will be to leave the tubes in Kinley's neck, the ECMO machine running without oxygen support, the high frequency ventilator turned up to 60% oxygen input and the addition of NO (nitrous oxide) support. The NO helps to decrease the pressure in her lungs. Kinley will receive all of this support tonight and early tomorrow morning they will do another heart echo to see if her pulmonary pressure has decreased. If her pulmonary pressure is down, we will attempt to wean Kinley off of ECMO again tomorrow.
Make sure to tune in tomorrow for more updates on "The Gauntlet: The Kinley Melcher Story."
At 4:00 pm Dr. P came to talk with Kathy and I about Kinley and her ECMO treatment. The results from the heart echo have come back from the cardiologist and the pressure in Kinley's right ventricle has gone up from yesterday morning. Kinley's pulmonary blood pressure (determined by the pressure in her right ventricle) is too close to her arterial blood pressure and therefore the chance of her pulmonary hypertension coming back is greater. The new plan will be to leave the tubes in Kinley's neck, the ECMO machine running without oxygen support, the high frequency ventilator turned up to 60% oxygen input and the addition of NO (nitrous oxide) support. The NO helps to decrease the pressure in her lungs. Kinley will receive all of this support tonight and early tomorrow morning they will do another heart echo to see if her pulmonary pressure has decreased. If her pulmonary pressure is down, we will attempt to wean Kinley off of ECMO again tomorrow.
Make sure to tune in tomorrow for more updates on "The Gauntlet: The Kinley Melcher Story."
Thursday, June 5th - The Gauntlet Begins: Part 2
Around 1:30 pm Kinley gets upset because she has a wet diaper. Once again, she let us know by sending her BP through the roof. It is amazing, and scary, how quickly she can raise her BP when she is upset. As long as she doesn't keep it highly elevated for very long we will be okay. As soon as her diaper is changed she returns to her relaxed and peaceful state.
Kinley's most recent blood gas test results come back a little after 2:00 pm. Her CO2 levels are 56 and her O2 levels are 61. We would prefer her CO2 levels between 35 and 45 and her O2 levels between 60 and 80. After analyzing her blood test numbers Dr. P and Dr. W decide to order another heart echo test to find out Kinley's pulmonary pressure. Remember, Kinley had a heart echo test yesterday morning. This is where they do an ultrasound of her heart while the ECMO machine is on minimum flow, meaning that Kinley is doing just about all of the work.
Around 2:30 pm Bridget (echo technician) arrived at Kinley's bedside with her portable ultrasound machine. As soon as Bridget was ready to begin the heart echo Brecklyn turned down the ECMO flow and Kinley was on her own. The entire test did not take long and Kinley did beautifully on her own. She kept all of her stats steady and constant through the whole test. After Bridget was done, the flow of the ECMO machine was turned back to normal (Remember, as of 6:55 am this morning the ECMO machine has not been oxygenating Kinley's blood. It is still circulating blood though and is ready to go if Kinley needs assistance oxygenating her blood.) Since this heart echo test will help determine whether or not to take Kinley off of ECMO, we will have to wait for the cardiologist to analyze the test and report back the results. If the results are good Dr. P and Dr. W will call the surgeons to have them come up and take out the ECMO tubes in Kinley's neck.
Kinley's most recent blood gas test results come back a little after 2:00 pm. Her CO2 levels are 56 and her O2 levels are 61. We would prefer her CO2 levels between 35 and 45 and her O2 levels between 60 and 80. After analyzing her blood test numbers Dr. P and Dr. W decide to order another heart echo test to find out Kinley's pulmonary pressure. Remember, Kinley had a heart echo test yesterday morning. This is where they do an ultrasound of her heart while the ECMO machine is on minimum flow, meaning that Kinley is doing just about all of the work.
Around 2:30 pm Bridget (echo technician) arrived at Kinley's bedside with her portable ultrasound machine. As soon as Bridget was ready to begin the heart echo Brecklyn turned down the ECMO flow and Kinley was on her own. The entire test did not take long and Kinley did beautifully on her own. She kept all of her stats steady and constant through the whole test. After Bridget was done, the flow of the ECMO machine was turned back to normal (Remember, as of 6:55 am this morning the ECMO machine has not been oxygenating Kinley's blood. It is still circulating blood though and is ready to go if Kinley needs assistance oxygenating her blood.) Since this heart echo test will help determine whether or not to take Kinley off of ECMO, we will have to wait for the cardiologist to analyze the test and report back the results. If the results are good Dr. P and Dr. W will call the surgeons to have them come up and take out the ECMO tubes in Kinley's neck.
Thursday, June 5th - The Gauntlet Begins: Part 1
We start our morning very early because today they are going to test Kinley and see if she can come off of ECMO. We leave the house at 5:45 am and arrive at Kinley's bedside at 6:20 am. Noel and Sara are here and update us on Kinley. She received more platelets around 11:00 pm. Over the entire night they had to give her 2 doses of versed to help her sleep. She had her oxygen challenge at 5:00 am and scored a 406. That's our girl, always an overachiever. Her chest x-ray has been done and it looks like her right lung is a little more open than yesterday.
At 6:30 am Kinley received another round of platelets. Also, Dr. S stops by and lets us know that they are still planning on turning off the ECMO's O2 around 7:00 am.
The time has come. At 6:55 am, the oxygen provided by the ECMO machine is cut off. Kinley is now responsible for oxygenating all of her own blood. She is still on the conventional ventilator which is providing 40% oxygen. As we head out for shift change we meet Kinley's day nurses, Sarah and Brecklyn.
We return as soon as possible and at 8:30 am Kinley receives a round of RBCs (red blood cells) to help her oxygenate her blood. At 8:40 am we get back the results of Kinley's most recent blood gas test. Her CO2 is 63 and her O2 is 117. Her O2 is looking good, but we need Kinley to lower her CO2 level. We want that number to be between 35 and 45.
At 9:05 am Dr. P and Dr. W come by to evaluate Kinley. Her breathing sounds good and her oxygenation is going well, but she is not getting rid of her CO2 as well as they would like. They may put Kinley back on the high frequency ventilator to help her get rid of her excess CO2.
Urine Update: During the shift change they calculated Kinley's urine output during the night shift and also for the last 24 hours. Her output over the last 24 hours is 9 cc/kilo/hr and for the night shift it was 6 cc/kilo/hr. (Her goal is to be over 1 cc/kilo/hr.)
10:00 am - Her next blood gas results are back and her CO2 is 71 (going in the wrong direction) and her O2 is 91. The doctors decide to change Kinley over to the high frequency ventilator to help with her gas exchange and also to keep her lungs from working too hard.
At 10:30 am the high frequency ventilator arrives and they begin to get Kinley switched over. By 10:45 am Kinley is off of the conventional ventilator and back on the high frequency ventilator. Dr. P lets us know that this is not considered a set back. It is more of a lateral move because the percent of oxygen from the high frequency ventilator is less than it was on the conventional ventilator (from 40% to 35%), but the high frequency will be less damaging to her lungs and allow for better gas exchange. Dr. P and Dr. W also place orders for another blood gas test and a chest x-ray at noon. The main thing we will be looking for in the chest x-ray is to see if her lungs are opening up anymore.
12:00 pm - Kinley's blood gas test results are back and they are 59 for CO2 and 68 for O2. Her CO2 level is now moving in the right direction and her O2 levels are still looking okay. To make sure that her O2 levels do not drop too far they have decided to increase the percent of oxygen from the ventilator to 40%. Kinley's chest x-ray has been taken, but no results yet.
More to come as the gauntlet continues. . .
At 6:30 am Kinley received another round of platelets. Also, Dr. S stops by and lets us know that they are still planning on turning off the ECMO's O2 around 7:00 am.
The time has come. At 6:55 am, the oxygen provided by the ECMO machine is cut off. Kinley is now responsible for oxygenating all of her own blood. She is still on the conventional ventilator which is providing 40% oxygen. As we head out for shift change we meet Kinley's day nurses, Sarah and Brecklyn.
We return as soon as possible and at 8:30 am Kinley receives a round of RBCs (red blood cells) to help her oxygenate her blood. At 8:40 am we get back the results of Kinley's most recent blood gas test. Her CO2 is 63 and her O2 is 117. Her O2 is looking good, but we need Kinley to lower her CO2 level. We want that number to be between 35 and 45.
At 9:05 am Dr. P and Dr. W come by to evaluate Kinley. Her breathing sounds good and her oxygenation is going well, but she is not getting rid of her CO2 as well as they would like. They may put Kinley back on the high frequency ventilator to help her get rid of her excess CO2.
Urine Update: During the shift change they calculated Kinley's urine output during the night shift and also for the last 24 hours. Her output over the last 24 hours is 9 cc/kilo/hr and for the night shift it was 6 cc/kilo/hr. (Her goal is to be over 1 cc/kilo/hr.)
10:00 am - Her next blood gas results are back and her CO2 is 71 (going in the wrong direction) and her O2 is 91. The doctors decide to change Kinley over to the high frequency ventilator to help with her gas exchange and also to keep her lungs from working too hard.
At 10:30 am the high frequency ventilator arrives and they begin to get Kinley switched over. By 10:45 am Kinley is off of the conventional ventilator and back on the high frequency ventilator. Dr. P lets us know that this is not considered a set back. It is more of a lateral move because the percent of oxygen from the high frequency ventilator is less than it was on the conventional ventilator (from 40% to 35%), but the high frequency will be less damaging to her lungs and allow for better gas exchange. Dr. P and Dr. W also place orders for another blood gas test and a chest x-ray at noon. The main thing we will be looking for in the chest x-ray is to see if her lungs are opening up anymore.
12:00 pm - Kinley's blood gas test results are back and they are 59 for CO2 and 68 for O2. Her CO2 level is now moving in the right direction and her O2 levels are still looking okay. To make sure that her O2 levels do not drop too far they have decided to increase the percent of oxygen from the ventilator to 40%. Kinley's chest x-ray has been taken, but no results yet.
More to come as the gauntlet continues. . .
Wednesday, June 4, 2008
Wednesday, June 4th - The Gauntlet Has Been Thrown Down
Hi everybody...this is Kathy. I thought I would give Kevin a little break from blogging so that he could spend some more time with his daughter.
We finally got an early start to our day today and arrived at Children's Mercy at 8:30 am. We made a point to make sure and get here early since Kinley is having her heart echo today. When we arrived, Dot and Megan, Kinley's nurses for today, had already begun turning down the flow of the ECMO machine to prep for the test. We received an update of last night's events for Kinley, but basically she just slept, so not much to tell there. She did get one round of morphine and versed, but that was about it. We like those kind of updates.
This morning Kinley's oxygen challenge was 350, so that was great. Above 300 is where it should be to start thinking about weaning off ECMO. Her chest x-ray was not quite as good as yesterday, but that is still not a huge issue since she is still just resting her lungs.
By 8:45 am Kinley's ECMO flow is down to 0.05 and the oxygen setting on her ventilator has been turned up from 30% to 60%.
At 9:00 am the portable ultrasound machine and its technician had arrived and Kinley's heart echo test had begun. The test did not take long and we found out that the blood pressure in Kinley's right ventricle was 47. This is good news because Kinley's arterial blood pressure has been a good amount over 47 since she was put on ECMO. This means that her lungs are now the low pressure in her body and the blood should be flowing freely back to her lungs. Continuing with good news, Kinley was able to keep her O2 saturation percentage in the high 90s, all by herself during the entire test. During this time they also took some blood to do a blood gas test.
Immediately after Kinley's heart echo test was complete (9:15 am) a second ultrasound machine was brought in to give her a head ultrasound. During her head ultrasound, Kinley's oxygen settings on her vent were moved back down to 30% and they also increased her pressure to help open up her lungs. Also, her ECMO flow was turned up to 0.31. (FYI - Kinley was at 0.34 before her heart echo test) The results of Kinley's blood gas test, from when they were doing her heart echo, came back and they looked good considering Kinley was doing all of her oxygenation.
After the room had calmed down, Dr. P and Dr. W discussed with us a possible plan for Kinley, ECMO and surgery to fix her diaphragm. Best case scenario they are thinking to test Kinley tomorrow and see if she can come off of ECMO. If she can come off of ECMO, they are hoping for surgery on Friday to repair her diaphragm.
Right before noon Kinley receives some platelets and we decide to head down to the cafeteria for lunch. While we are gone she decided to get a little fussy during her vitals check by Megan. This is simply a hands on analysis of Kinley which happens every 2 to 4 hours. To help calm her down they gave her an extra round of morphine and versed. Kinley also received a dose of lasix to help with her swelling.
Kinley was very, very upset about her wet diaper at 2:30pm. It was her heaviest wet diaper to date at 182 cc. During her fit she turned her entire body red and put her BP to the roof. As soon as her diaper was changed her BP started to drop. After Kinley was calm again she decided to stay awake for about half an hour, simply looking around at everything, but not getting fussy. She ended up falling asleep around 3:10 pm.
Kinley extremely upset about her wet diaper
Kinley calmed down with her eyes open.
It's story time, Kevin sat down and read "Hello, Willie!" to Kinley.
The Gauntlet Has Been Thrown Down
Dr. W came back to talk with both of us about Kinley's upcoming schedule. The plan is to see if Kinley is ready to come off of ECMO tomorrow. That will mean turning off the O2 input on her ECMO machine and seeing if Kinley can handle oxygenating her own blood. If she can oxygenate her own blood, they will leave the O2 off of her ECMO machine and call the surgeons to remove the tubes from her neck. After she is off of ECMO, they will try to schedule her diaphragm repair surgery for Friday. If they cannot get her into surgery on Friday, we will all have to wait until Monday or Tuesday of next week for surgery because they do not schedule surgeries for the weekend. Coming off of ECMO is a big decision because once Kinley is off, she cannot go back on if she runs into any issues.
We decided to take off earlier than normal to get some rest and make sure that we are back bright and early for when they turn off the O2 on Kinley's ECMO. Sleep tight baby girl.
We finally got an early start to our day today and arrived at Children's Mercy at 8:30 am. We made a point to make sure and get here early since Kinley is having her heart echo today. When we arrived, Dot and Megan, Kinley's nurses for today, had already begun turning down the flow of the ECMO machine to prep for the test. We received an update of last night's events for Kinley, but basically she just slept, so not much to tell there. She did get one round of morphine and versed, but that was about it. We like those kind of updates.
This morning Kinley's oxygen challenge was 350, so that was great. Above 300 is where it should be to start thinking about weaning off ECMO. Her chest x-ray was not quite as good as yesterday, but that is still not a huge issue since she is still just resting her lungs.
By 8:45 am Kinley's ECMO flow is down to 0.05 and the oxygen setting on her ventilator has been turned up from 30% to 60%.
At 9:00 am the portable ultrasound machine and its technician had arrived and Kinley's heart echo test had begun. The test did not take long and we found out that the blood pressure in Kinley's right ventricle was 47. This is good news because Kinley's arterial blood pressure has been a good amount over 47 since she was put on ECMO. This means that her lungs are now the low pressure in her body and the blood should be flowing freely back to her lungs. Continuing with good news, Kinley was able to keep her O2 saturation percentage in the high 90s, all by herself during the entire test. During this time they also took some blood to do a blood gas test.
Immediately after Kinley's heart echo test was complete (9:15 am) a second ultrasound machine was brought in to give her a head ultrasound. During her head ultrasound, Kinley's oxygen settings on her vent were moved back down to 30% and they also increased her pressure to help open up her lungs. Also, her ECMO flow was turned up to 0.31. (FYI - Kinley was at 0.34 before her heart echo test) The results of Kinley's blood gas test, from when they were doing her heart echo, came back and they looked good considering Kinley was doing all of her oxygenation.
After the room had calmed down, Dr. P and Dr. W discussed with us a possible plan for Kinley, ECMO and surgery to fix her diaphragm. Best case scenario they are thinking to test Kinley tomorrow and see if she can come off of ECMO. If she can come off of ECMO, they are hoping for surgery on Friday to repair her diaphragm.
Right before noon Kinley receives some platelets and we decide to head down to the cafeteria for lunch. While we are gone she decided to get a little fussy during her vitals check by Megan. This is simply a hands on analysis of Kinley which happens every 2 to 4 hours. To help calm her down they gave her an extra round of morphine and versed. Kinley also received a dose of lasix to help with her swelling.
Kinley was very, very upset about her wet diaper at 2:30pm. It was her heaviest wet diaper to date at 182 cc. During her fit she turned her entire body red and put her BP to the roof. As soon as her diaper was changed her BP started to drop. After Kinley was calm again she decided to stay awake for about half an hour, simply looking around at everything, but not getting fussy. She ended up falling asleep around 3:10 pm.
Kinley extremely upset about her wet diaper
Kinley calmed down with her eyes open.
It's story time, Kevin sat down and read "Hello, Willie!" to Kinley.
The Gauntlet Has Been Thrown Down
Dr. W came back to talk with both of us about Kinley's upcoming schedule. The plan is to see if Kinley is ready to come off of ECMO tomorrow. That will mean turning off the O2 input on her ECMO machine and seeing if Kinley can handle oxygenating her own blood. If she can oxygenate her own blood, they will leave the O2 off of her ECMO machine and call the surgeons to remove the tubes from her neck. After she is off of ECMO, they will try to schedule her diaphragm repair surgery for Friday. If they cannot get her into surgery on Friday, we will all have to wait until Monday or Tuesday of next week for surgery because they do not schedule surgeries for the weekend. Coming off of ECMO is a big decision because once Kinley is off, she cannot go back on if she runs into any issues.
We decided to take off earlier than normal to get some rest and make sure that we are back bright and early for when they turn off the O2 on Kinley's ECMO. Sleep tight baby girl.
Tuesday, June 3rd
We arrive at Kinley's bed station around 10:00 am. Dot and Megan are here and get us up to date on all of the Kinley news from last night and earlier this morning. Last night Kinley had a couple extra doses of morphine and versed. She also received some more platelets and her urine output is still going strong. This morning Kinley had another oxygen challenge, but her numbers were not as good as yesterday. Today she scored a 154 and yesterday was 246, but they want her score to be over 300. It looks like Kinley will need a little more time on ECMO to rest her heart and lungs. She had her chest x-ray and head ultrasound before we arrived. For the most part, her chest x-ray looked good, but it looks like a little bit of her right lung is starting to loss some air volume. It is not collapsing, but it does appear that some of the air sacs are closing. This is not overly concerning because they have her vent settings very low. The reason her vent settings are so low is because they are trying to rest her lungs as much as possible. (Technically, she doesn't even need her lungs while she is on ECMO.) When the time comes for Kinley to come off of ECMO they will make sure that her lungs/air sacs are open. No news has been heard about her head ultrasound, so that is good news. Only if something is wrong will the nurses hear back about the head ultrasound.
Currently, Kinley is doing well. She opened her eyes when we got here. She is also moving around and trying to grab all of her cords and tubes. If she keeps this up we might need to put mittens on her.
At 12:30 pm, Dr. W came by and decided to adjust Kinley's vent settings. The pressure of the vent and the oxygen percentage going in will remain the same, but the frequency of her breaths per minute will be increase from 20 to 35. This should help open the air sacs in her lungs. It will also help get Kinley prepped for her heart echo test tomorrow. A heart echo is where they turn down the blood flow from the ECMO machine and see how Kinley does when she has to do most of the work of oxygenating her blood. During this process they will also be using an ultrasound machine to look at her heart and determine the pressure in her right ventricle. The reason they want to know the pressure in her right ventricle is because it is the best indicator of the blood pressure in her lungs. Knowing this helps to determine if Kinley is overcoming her pulmonary hypertension.
Kinley was given a dose of lasix around 12:45 pm. Lasix is a diuretic and will help with the swelling that she has from getting so many fluids and being on ECMO.
Around 1:30 pm Kinley decided to test her heart rate and blood pressure monitors by getting fussy and moving around a lot. Dot and Megan gave her an extra dose of morphine and versed to help her calm down and rest. Kinley's urine output is up to 7cc/kilo/hr. This is up from normal due to the lasix and all of her extra movement.
The rest of the afternoon is pretty quiet and we decide to go to dinner during the shift change.
Upon our return we find that Kinley is in the care of Julie and Kelly. Julie is the nurse who admitted Kinley to Children's Mercy and took care of her on her first night. During the shift change, they calculated Kinley's urine output for the entire day shift and it came out to be 11.7 cc/kilo/hr. That lasix really works. We can already see that Kinley's swelling is beginning to go down.
Unfortunate for the blog, but great news for Kinley, the evening was especially quiet since the only thing Kinley did was sleep. There were no temper tantrums or any other issues of concern. We left around 9:45 pm with Kinley still fast asleep in her bed.
Currently, Kinley is doing well. She opened her eyes when we got here. She is also moving around and trying to grab all of her cords and tubes. If she keeps this up we might need to put mittens on her.
At 12:30 pm, Dr. W came by and decided to adjust Kinley's vent settings. The pressure of the vent and the oxygen percentage going in will remain the same, but the frequency of her breaths per minute will be increase from 20 to 35. This should help open the air sacs in her lungs. It will also help get Kinley prepped for her heart echo test tomorrow. A heart echo is where they turn down the blood flow from the ECMO machine and see how Kinley does when she has to do most of the work of oxygenating her blood. During this process they will also be using an ultrasound machine to look at her heart and determine the pressure in her right ventricle. The reason they want to know the pressure in her right ventricle is because it is the best indicator of the blood pressure in her lungs. Knowing this helps to determine if Kinley is overcoming her pulmonary hypertension.
Kinley was given a dose of lasix around 12:45 pm. Lasix is a diuretic and will help with the swelling that she has from getting so many fluids and being on ECMO.
Around 1:30 pm Kinley decided to test her heart rate and blood pressure monitors by getting fussy and moving around a lot. Dot and Megan gave her an extra dose of morphine and versed to help her calm down and rest. Kinley's urine output is up to 7cc/kilo/hr. This is up from normal due to the lasix and all of her extra movement.
The rest of the afternoon is pretty quiet and we decide to go to dinner during the shift change.
Upon our return we find that Kinley is in the care of Julie and Kelly. Julie is the nurse who admitted Kinley to Children's Mercy and took care of her on her first night. During the shift change, they calculated Kinley's urine output for the entire day shift and it came out to be 11.7 cc/kilo/hr. That lasix really works. We can already see that Kinley's swelling is beginning to go down.
Unfortunate for the blog, but great news for Kinley, the evening was especially quiet since the only thing Kinley did was sleep. There were no temper tantrums or any other issues of concern. We left around 9:45 pm with Kinley still fast asleep in her bed.
Tuesday, June 3, 2008
Monday, June 2nd - A Day at the Spa
We arrive at 11:30 am and find Dot and Kristen taking care of our little fighter. Kinley is sleeping on her side while Dot and Kristen give us the update from last night.
Update: Poop. That's right, poop. Kinley had a poopy diaper overnight. We were surprised to hear this since Kinley has not had anything go through her stomach since she was born. Her dirty diaper is her meconium, this is waste that every baby creates in the womb, but doesn't get rid of until after birth. This may be why Kinley required three doses of morphine and versed last night, but her morphine and versed drips remain the same. She received another round of platelets, but no extra RBCs. One new thing we found out about Kinley is that she gets an oxygen challenge each morning. This is a test used to help determine when Kinley will be ready to come off of ECMO. They compare the oxygen levels that Kinley produces to the levels her ECMO machine produces. We want her scores to be in the 300s, but this morning it was only 246. This is a good number, but not quite high enough to start talking about an end date for ECMO. Kinley has been doing such a good job of getting rid of her CO2 that they turned down her CO2 settings.
Ladies and Gentlemen, it is now time for Kinley's spa day to begin. Before we arrived she had already had her hair washed. Around 12:00 pm she was moved onto her right side to keep her from laying too long in one position. This move really helped with the shape of her head. She also received her first hairdo. Kinley now has a pretty pink bow in her hair. She modeled it very well so we could take pictures. She is so photogenic.
To continue her day of relaxation, Mommy read Kinley her first book. It was "Hello, Big Jay!" A story of the KU Jayhawk and his adventure through campus. FYI - Kathy went to KU and I went to KSU. Don't worry Wildcat fans, we also have "Hello, Willie!" A better story of Willie the Wildcat and his adventure through campus. "Rock, Chalk!" and "Go Wildcats!"
To round out Kinley's spa day, she received a full body massage from Kristen. Kinley loved every second of it. She did not get fussy once and seemed even more relaxed when it was over.
We stayed through the shift change and came back to visit Kinley and her night nurses. Tonight Kinley has Melissa and Emily. Melissa was one of Kinley's nurses on her first night here at Children's Mercy. During the shift change Kinley had another poopy diaper. She is now wide awake and looking around the room. We are pretty sure that Kinley has her days and nights backwards because she seems to always be more active at night. Kinley's breath rate is a bit elevated, most likely because she is wide awake, but she may also be working on processing another poopy diaper. To make sure that she does not become agitated, uncomfortable or too active she is given another round of morphine and versed. Before we leave, her breath rate is back to normal and she is sleeping peacefully.
Update: Poop. That's right, poop. Kinley had a poopy diaper overnight. We were surprised to hear this since Kinley has not had anything go through her stomach since she was born. Her dirty diaper is her meconium, this is waste that every baby creates in the womb, but doesn't get rid of until after birth. This may be why Kinley required three doses of morphine and versed last night, but her morphine and versed drips remain the same. She received another round of platelets, but no extra RBCs. One new thing we found out about Kinley is that she gets an oxygen challenge each morning. This is a test used to help determine when Kinley will be ready to come off of ECMO. They compare the oxygen levels that Kinley produces to the levels her ECMO machine produces. We want her scores to be in the 300s, but this morning it was only 246. This is a good number, but not quite high enough to start talking about an end date for ECMO. Kinley has been doing such a good job of getting rid of her CO2 that they turned down her CO2 settings.
Ladies and Gentlemen, it is now time for Kinley's spa day to begin. Before we arrived she had already had her hair washed. Around 12:00 pm she was moved onto her right side to keep her from laying too long in one position. This move really helped with the shape of her head. She also received her first hairdo. Kinley now has a pretty pink bow in her hair. She modeled it very well so we could take pictures. She is so photogenic.
To continue her day of relaxation, Mommy read Kinley her first book. It was "Hello, Big Jay!" A story of the KU Jayhawk and his adventure through campus. FYI - Kathy went to KU and I went to KSU. Don't worry Wildcat fans, we also have "Hello, Willie!" A better story of Willie the Wildcat and his adventure through campus. "Rock, Chalk!" and "Go Wildcats!"
To round out Kinley's spa day, she received a full body massage from Kristen. Kinley loved every second of it. She did not get fussy once and seemed even more relaxed when it was over.
We stayed through the shift change and came back to visit Kinley and her night nurses. Tonight Kinley has Melissa and Emily. Melissa was one of Kinley's nurses on her first night here at Children's Mercy. During the shift change Kinley had another poopy diaper. She is now wide awake and looking around the room. We are pretty sure that Kinley has her days and nights backwards because she seems to always be more active at night. Kinley's breath rate is a bit elevated, most likely because she is wide awake, but she may also be working on processing another poopy diaper. To make sure that she does not become agitated, uncomfortable or too active she is given another round of morphine and versed. Before we leave, her breath rate is back to normal and she is sleeping peacefully.
Monday, June 2, 2008
Sunday, June 1st
12:30 am - We are still at Kinley's bedside keeping her company. Nothing is wrong, we are simply spending some extra time with our little girl. She receives another round of red blood cells (RBCs) and platelets. The reason Kinley gets extra rounds of RBCs is because the ECMO machine and its filters tend to beat up the RBCs and they occasionally need to be replenished. The extra platelets are to help Kinley with any clotting she might need due to her being on blood thinners. We decide that it is time for bed and head back to the Hyatt. Aunt Kate was able to keep our room for another night.
We arrive back around 10:40 am. Phyllis and Linda are Kinley's nurses today. They update us on Kinley's activities while we were gone. Kinley had a quiet night. They gave her an extra round of morphine and versed earlier in the morning because she was moving around a lot. This extra movement can be an issue because it uses up her precious energy and also makes her heart and lungs work harder than they need to since she is on ECMO. We want those to rest up for when she comes off of ECMO. Both her morning chest x-ray and head ultrasound have been done, but no notices have been relayed to Kinley's nurses. We take this as a good sign that everything looked well. We notice that Kinley has some swelling around her head and hands due to lack of movement and extra fluids, but this is not a big concern right now because it is more important to keep Kinley still while she is on ECMO. Kinley's urine output is at 4 cc/kilo/hr.
At 12:20 pm, the doctors did their daily rounds. No big changes for Kinley. She is looking good and stable on ECMO and that is all we can ask for. Keep up the great work Kinley!
At 4:35 pm Kinley threw a MAJOR fit. If she didn't have her breathing tube in I swear she would have deafened someone. She would scrunch up her little face and let out the loudest silent scream she could. She also did a very impressive job of turning her whole body bright red. (I guess that means she has good circulation and is oxygenating her blood well.) During this fit Kinley sent her BP way up. We could not see that anything was wrong with her other than the fact that she had a wet diaper. Phyllis changed her diaper and Kinley settled down immediately. At least that is what we thought, Kinley looked calm and her heart rate and breathing were fine, but her BP was not coming back down. Phyllis gave Kinley an extra round of morphine and versed to help her stay calm and try to bring her BP down. By 5:25 pm her BP was back where we wanted it.
While talking with Phyllis and Linda we found out that sometime yesterday they had increased Kinley's morphine drip to 50 mcg/kg/hr from 40. This is because Kinley had been needing to many extra doses the past couple of days. It is good that Kinley is receiving all of the medications she requires, but Kathy and I do have some concerns about when Kinley will be weaned off her medications. She will very likely go through withdrawals, but we are hoping that they will not be too severe.
Kathy and I have been planning to go home during the shift change today since Kinley is looking so good and we haven't been home in over two days. Apparently Kinley does not like us to leave because around 6:15 pm Kinley "decided" to have an issue with her breathing tube. A respiratory therapist came by to evaluate her and is thinking that her tube may have slipped down a bit further in her throat. This would affect the pressure and air flow reaching her lungs. They have ordered a chest x-ray to help make a final diagnosis.
At 7:00 pm, the doctor listens to Kinley's chest and takes a look at the x-ray and says that it looks good, but they may make some minor adjustments. Since the doctor is not too concerned about her air tube, we decide to stick to our plans and head home during the shift change.
Sorry for the lack of pictures recently. Here are a few pics for you viewing enjoyment.
Kinley with her bears. The bear at Kinley's feet is a "Prayer Bear" given to her by one of the chaplains.
Kinley holding onto Dad's finger.
An earlier pic of Kinley with her eyes open.
We arrive back around 10:40 am. Phyllis and Linda are Kinley's nurses today. They update us on Kinley's activities while we were gone. Kinley had a quiet night. They gave her an extra round of morphine and versed earlier in the morning because she was moving around a lot. This extra movement can be an issue because it uses up her precious energy and also makes her heart and lungs work harder than they need to since she is on ECMO. We want those to rest up for when she comes off of ECMO. Both her morning chest x-ray and head ultrasound have been done, but no notices have been relayed to Kinley's nurses. We take this as a good sign that everything looked well. We notice that Kinley has some swelling around her head and hands due to lack of movement and extra fluids, but this is not a big concern right now because it is more important to keep Kinley still while she is on ECMO. Kinley's urine output is at 4 cc/kilo/hr.
At 12:20 pm, the doctors did their daily rounds. No big changes for Kinley. She is looking good and stable on ECMO and that is all we can ask for. Keep up the great work Kinley!
At 4:35 pm Kinley threw a MAJOR fit. If she didn't have her breathing tube in I swear she would have deafened someone. She would scrunch up her little face and let out the loudest silent scream she could. She also did a very impressive job of turning her whole body bright red. (I guess that means she has good circulation and is oxygenating her blood well.) During this fit Kinley sent her BP way up. We could not see that anything was wrong with her other than the fact that she had a wet diaper. Phyllis changed her diaper and Kinley settled down immediately. At least that is what we thought, Kinley looked calm and her heart rate and breathing were fine, but her BP was not coming back down. Phyllis gave Kinley an extra round of morphine and versed to help her stay calm and try to bring her BP down. By 5:25 pm her BP was back where we wanted it.
While talking with Phyllis and Linda we found out that sometime yesterday they had increased Kinley's morphine drip to 50 mcg/kg/hr from 40. This is because Kinley had been needing to many extra doses the past couple of days. It is good that Kinley is receiving all of the medications she requires, but Kathy and I do have some concerns about when Kinley will be weaned off her medications. She will very likely go through withdrawals, but we are hoping that they will not be too severe.
Kathy and I have been planning to go home during the shift change today since Kinley is looking so good and we haven't been home in over two days. Apparently Kinley does not like us to leave because around 6:15 pm Kinley "decided" to have an issue with her breathing tube. A respiratory therapist came by to evaluate her and is thinking that her tube may have slipped down a bit further in her throat. This would affect the pressure and air flow reaching her lungs. They have ordered a chest x-ray to help make a final diagnosis.
At 7:00 pm, the doctor listens to Kinley's chest and takes a look at the x-ray and says that it looks good, but they may make some minor adjustments. Since the doctor is not too concerned about her air tube, we decide to stick to our plans and head home during the shift change.
Sorry for the lack of pictures recently. Here are a few pics for you viewing enjoyment.
Kinley with her bears. The bear at Kinley's feet is a "Prayer Bear" given to her by one of the chaplains.
Kinley holding onto Dad's finger.
An earlier pic of Kinley with her eyes open.
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