8:00 AM
I spent the night at home last night for the first time in a couple of weeks to take care of a few things at home and be with Kelsey. Jennifer stayed at the hospital and told me this morning that Courtney did not have as good a night as she had hoped, especially after the good afternoon she had. However, there were no major issues...just a couple of inches backward instead of forward. :-(
They had to stop the attempts at feeding through her g-tube. She had not seen the chest x-ray yet, but was told that it was "wetter" and her body reflected that resulting in having to adjust her ventilator and ECMO to higher settings. The last couple of days her lungs had started doing more of the work and she was making progress on weaning her settings.
She also needed a little more blood (no real bleeding issues though) during the night. She had started waking up a bit more yesterday, but they had to go back up on her pain medications during the night. :-(
In the grand scheme of things, our little turtle moved back a couple of inches. We are praying today for a few inches forward. :-) Moving forward always makes for a better night's rest for all of us.
Thank you for your continued prayer support for our family and please remember the nurses, doctors, and especially the ECMO staff in your prayers as well. The ECMO staff here is amazing and they are maxed out right now due to the number of patients that they are caring for and are not getting days off right now. Also please remember these children and their families (Braylee, Maxton, Harper, & Mason).
Update on my Dad
He got the results from his PET scan yesterday and found out that although there is still a small spot in his lung, the doctors were pleased with the results. They want to do 4 more rounds of chemo, but this time it will be a stronger dose and they will allow 3 weeks between each treatment. His first treatment will be near the end of March and he will take some B12 shots in between.
Friday, February 28, 2014
Thursday, February 27, 2014
Courtney Update - Thursday, February 27, 2014
10:00 PM
Overall Courtney had a good day. Probably late tomorrow they will take Courtney (with her train of ECMO, ventilator, IV poles, etc.) down to imaging to get a head CT scan. Her right lung looks good and her left lung is slightly better than yesterday. Tonight they are going to start putting the absolute minimum of nutrition into her stomach to see if they can trigger any intestinal response over the next couple of days. She has had nothing but IV - tpn since she's been here. No progress on her kidneys. Still...our turtle is inching forward!
7:00 AM
Courtney had another "uneventful" night. We will know a little more about the plans for the day once the doctors do the rounds later this morning. They will continue to tweak the vent settings to work on recovering her lungs and perform the remainder of the tests that did not get completed yesterday.
On a separate note, please keep my Dad in your prayers as he gets the results of his PET scan this morning.
Overall Courtney had a good day. Probably late tomorrow they will take Courtney (with her train of ECMO, ventilator, IV poles, etc.) down to imaging to get a head CT scan. Her right lung looks good and her left lung is slightly better than yesterday. Tonight they are going to start putting the absolute minimum of nutrition into her stomach to see if they can trigger any intestinal response over the next couple of days. She has had nothing but IV - tpn since she's been here. No progress on her kidneys. Still...our turtle is inching forward!
7:00 AM
Courtney had another "uneventful" night. We will know a little more about the plans for the day once the doctors do the rounds later this morning. They will continue to tweak the vent settings to work on recovering her lungs and perform the remainder of the tests that did not get completed yesterday.
On a separate note, please keep my Dad in your prayers as he gets the results of his PET scan this morning.
Wednesday, February 26, 2014
Courtney Update - Wednesday, February 26, 2014
11:00 PM
Today was a very busy day in the PCICU, but Courtney decided to chill and give her nurses and ECMO staff a break and had a fairly uneventful day. They were not able to perform all the tests that they had planned today, but they should be performed by sometime tomorrow.
Although Courtney had a chill day, her equipment decided to throw a wrench into the works. There was a blood clot that formed in the tubing of her ECMO machine, which caused the dialysis machine to stop. There is always a one-on-one staff member from the ECMO team beside Courtney and the machine, as well as, immediate help available from additional ECMO staff, the one-on-one nurse in her room, or additional nursing staff. Because of that, they immediately responded and took care of the ECMO issue with NO interruption to it's functionality for Courtney. Unfortunately, the dialysis machine wasn't as appreciative of their efforts and the entire machine had to be replaced. We have never needed ECMO before this stay in the hospital, but we can wholeheartedly say that the ECMO team here is AWESOME!!!!! They are maxed out on the number of patients that they can support and are working incredible amounts of hours with little or no rest. Astonishingly enough, I have not heard a single complaint from any of them. Our hope is that anyone reading this can take our word for how wonderful they are and never have to find out on their own.
Although we don't know to what degree that Courtney can hear us yet, we still talk to her a lot, as well as, play her favorite music for her on her iPod or sing to her. Today Kelsey wanted Courtney to "watch" a move with her, so she stood by the bed and placed a laptop by Courtney's head and used her earbuds (one in Kelsey's ear and the other in Courtney's ear) so that they both could listen. Kelsey chose to watch "Tinkerbell - Secret of the Wing" since it is about sisters.
11:00 AM
Uneventful seems to be our word for the day also ... no significant changes from yesterday. The plan for today is to tweak her ventilator and ECMO settings to help her lungs recover enough to only need the ventilator [hopefully by next week].
They will perform some echos and ultrasounds to evaluate the current status of her heart and abdomen, as well as a few other miscellaneous tests to try to better evaluate her current status.
7:30 AM
Courtney had an "uneventful" night last night. I know that isn't much of an update, but it is amazing at what we can be thankful for at times. Courtney has always taught us about perspective and this is one time that we are thankful for "uneventful".
I will try to update more later in the day once we know what the plan of attack is for the day. I am working today, so once Jennifer hears the plan after the doctors round, we will know more. I know that the big plan for the day is to continue working on the full recovery of her lungs with the goal of getting her off of ECMO once her lungs are ready, but I don't know the timeframe.
Thank you again for your continued prayer support.
Today was a very busy day in the PCICU, but Courtney decided to chill and give her nurses and ECMO staff a break and had a fairly uneventful day. They were not able to perform all the tests that they had planned today, but they should be performed by sometime tomorrow.
Although Courtney had a chill day, her equipment decided to throw a wrench into the works. There was a blood clot that formed in the tubing of her ECMO machine, which caused the dialysis machine to stop. There is always a one-on-one staff member from the ECMO team beside Courtney and the machine, as well as, immediate help available from additional ECMO staff, the one-on-one nurse in her room, or additional nursing staff. Because of that, they immediately responded and took care of the ECMO issue with NO interruption to it's functionality for Courtney. Unfortunately, the dialysis machine wasn't as appreciative of their efforts and the entire machine had to be replaced. We have never needed ECMO before this stay in the hospital, but we can wholeheartedly say that the ECMO team here is AWESOME!!!!! They are maxed out on the number of patients that they can support and are working incredible amounts of hours with little or no rest. Astonishingly enough, I have not heard a single complaint from any of them. Our hope is that anyone reading this can take our word for how wonderful they are and never have to find out on their own.
Although we don't know to what degree that Courtney can hear us yet, we still talk to her a lot, as well as, play her favorite music for her on her iPod or sing to her. Today Kelsey wanted Courtney to "watch" a move with her, so she stood by the bed and placed a laptop by Courtney's head and used her earbuds (one in Kelsey's ear and the other in Courtney's ear) so that they both could listen. Kelsey chose to watch "Tinkerbell - Secret of the Wing" since it is about sisters.
11:00 AM
Uneventful seems to be our word for the day also ... no significant changes from yesterday. The plan for today is to tweak her ventilator and ECMO settings to help her lungs recover enough to only need the ventilator [hopefully by next week].
They will perform some echos and ultrasounds to evaluate the current status of her heart and abdomen, as well as a few other miscellaneous tests to try to better evaluate her current status.
7:30 AM
Courtney had an "uneventful" night last night. I know that isn't much of an update, but it is amazing at what we can be thankful for at times. Courtney has always taught us about perspective and this is one time that we are thankful for "uneventful".
I will try to update more later in the day once we know what the plan of attack is for the day. I am working today, so once Jennifer hears the plan after the doctors round, we will know more. I know that the big plan for the day is to continue working on the full recovery of her lungs with the goal of getting her off of ECMO once her lungs are ready, but I don't know the timeframe.
Thank you again for your continued prayer support.
Tuesday, February 25, 2014
Courtney Update - Tuesday, February 25, 2014
10:00 PM
Courtney is having a good night thus far. The nurses have moved her and washed her and put lotion on her and she looks really good. Her bleeding is still under control and the plan is to have an uneventful night and continue to work on her lungs to help them recover fully.
Jennifer is getting some rest and I will be shortly as long as she continues to do well.
4:30 PM
We were able to see Courtney around 10:45 or so this morning and she looked good, considering what she had been through. My Mom and Dad came over today and they both were pleasantly surprised out how good she looked compared to the last time they saw her. I was able to work half a day after the long night and little sleep, but she looked good when I left and Jennifer says that she had an "uneventful" afternoon. We like those kinds of days and especially those kind of nights.
Her left lung continues to improve (x-rays are looking much better) and her bleeding has remained under control throughout the afternoon.
Jennifer has been comparing Courtney to a turtle and here is her post on Facebook this afternoon if you have not read it: "After last night's and this morning's challenging pit stops for some major adjustments, my turtle successfully reentered the race! As long as God is your crew chief, there is always hope you can win the race:-)"
We are continually lifted up and comforted by your prayer support and words of encouragement. Thank you.
9:30 AM
They finished the "washout" procedure about 8:45 or so and are now cleaning her up and changing dressings. The bleeding seems to be under control again and we should get to see her around 10:15 or so.
6:45 AM
We went back at 6:00 to see Courtney and they sent us out at 6:25 to start preparing for the procedure. They will keep us posted on the progress as they are able.
2:30 AM
While managing Courtney's bleeding issues, it became apparent that it was getting worse each hour. The surgeon was called and the staff began preparing for another "washout". Further discussions took place between 1:15 and 2:15 until they finally decided to wait until 6:30 to do the procedure and keep replacing her blood as needed until then. However, if the bleeding gets worse, they could start earlier.
We left the room at 2:15 to get a little sleep and plan to go see her before they start.
Courtney is having a good night thus far. The nurses have moved her and washed her and put lotion on her and she looks really good. Her bleeding is still under control and the plan is to have an uneventful night and continue to work on her lungs to help them recover fully.
Jennifer is getting some rest and I will be shortly as long as she continues to do well.
4:30 PM
We were able to see Courtney around 10:45 or so this morning and she looked good, considering what she had been through. My Mom and Dad came over today and they both were pleasantly surprised out how good she looked compared to the last time they saw her. I was able to work half a day after the long night and little sleep, but she looked good when I left and Jennifer says that she had an "uneventful" afternoon. We like those kinds of days and especially those kind of nights.
Her left lung continues to improve (x-rays are looking much better) and her bleeding has remained under control throughout the afternoon.
Jennifer has been comparing Courtney to a turtle and here is her post on Facebook this afternoon if you have not read it: "After last night's and this morning's challenging pit stops for some major adjustments, my turtle successfully reentered the race! As long as God is your crew chief, there is always hope you can win the race:-)"
We are continually lifted up and comforted by your prayer support and words of encouragement. Thank you.
9:30 AM
They finished the "washout" procedure about 8:45 or so and are now cleaning her up and changing dressings. The bleeding seems to be under control again and we should get to see her around 10:15 or so.
6:45 AM
We went back at 6:00 to see Courtney and they sent us out at 6:25 to start preparing for the procedure. They will keep us posted on the progress as they are able.
2:30 AM
While managing Courtney's bleeding issues, it became apparent that it was getting worse each hour. The surgeon was called and the staff began preparing for another "washout". Further discussions took place between 1:15 and 2:15 until they finally decided to wait until 6:30 to do the procedure and keep replacing her blood as needed until then. However, if the bleeding gets worse, they could start earlier.
We left the room at 2:15 to get a little sleep and plan to go see her before they start.
Monday, February 24, 2014
Courtney Update - Monday, February 24, 2014
9:15 PM
We finally got to see Courtney at 9:15. It has been a very busy day in the PCICU with several kids having procedures back to back and limited staff to help cleanup afterwards. She has just started showing signs of additional bleeding issues that they will need to keep an eye on and will reevaluate for a couple of hours.
7:15 PM
Finished procedure should get to go see her in about an hour.
4:30 PM
After Courtney failed a couple of lung tests to see if her lungs were progressing [to a certain level], they did an ultrasound of her lungs/chest area. Results: some fluid hindering her lung improvement that needs to be removed. Also, yesterday, she began oozing more blood from her still open chest. Today it continued to increase in amount requiring her to receive additional blood. Therefore, they are going back into her still open chest to address the bleeding and draw out the fluid. This procedure is called a 'washout'. They have already started the procedure.
7:30 AM
Courtney's left lung is a little better this morning, but not ready to come off ECMO machine yet. They will continue to work on recovering her lungs fully and evaluating her progress throughout the day.
We finally got to see Courtney at 9:15. It has been a very busy day in the PCICU with several kids having procedures back to back and limited staff to help cleanup afterwards. She has just started showing signs of additional bleeding issues that they will need to keep an eye on and will reevaluate for a couple of hours.
7:15 PM
Finished procedure should get to go see her in about an hour.
4:30 PM
After Courtney failed a couple of lung tests to see if her lungs were progressing [to a certain level], they did an ultrasound of her lungs/chest area. Results: some fluid hindering her lung improvement that needs to be removed. Also, yesterday, she began oozing more blood from her still open chest. Today it continued to increase in amount requiring her to receive additional blood. Therefore, they are going back into her still open chest to address the bleeding and draw out the fluid. This procedure is called a 'washout'. They have already started the procedure.
7:30 AM
Courtney's left lung is a little better this morning, but not ready to come off ECMO machine yet. They will continue to work on recovering her lungs fully and evaluating her progress throughout the day.
Sunday, February 23, 2014
Courtney Update - Sunday, February 23, 2014
8:00 PM
They are still working on Courtney's lungs. They have tried several strategies throughout the day and will be checking another chest x-ray around 10 pm tonight and another around 6 am.
7:00 AM
Since the previous 2 Sunday mornings have been very difficult for Courtney, we were excited not to get a call during the wee hours this morning. Although the night was uneventful, it was disappointing to find out this morning that her lung x-ray showed that her left lung was back down again.
So our focus today will continue to be on recovering her lungs.
Thank you for your continued prayer support.
For those who don't know Courtney and Kelsey and the relationship they have, here is a picture taken at Courtney's birthday party last May.
They are still working on Courtney's lungs. They have tried several strategies throughout the day and will be checking another chest x-ray around 10 pm tonight and another around 6 am.
7:00 AM
Since the previous 2 Sunday mornings have been very difficult for Courtney, we were excited not to get a call during the wee hours this morning. Although the night was uneventful, it was disappointing to find out this morning that her lung x-ray showed that her left lung was back down again.
So our focus today will continue to be on recovering her lungs.
Thank you for your continued prayer support.
For those who don't know Courtney and Kelsey and the relationship they have, here is a picture taken at Courtney's birthday party last May.
Saturday, February 22, 2014
Courtney Update - Saturday, February 22, 2014
10:00 AM
Courtney had a good night and we were able to get a little more sleep. They have been able to pull a lot of fluid off of her since yesterday. Her lung x-ray this morning looks significantly better than yesterday.
Today's focus: more of the same. The goal is for her lungs to recover enough over the weekend to allow her to come off ECMO on Monday and have her lungs only supported by the ventilator.
8:00 PM
Courtney has had a good day today as they continue to pull fluid off of her. In fact, over the last 36 hours they have drawn off 9 liters of fluid. Along with the 12 liters they drew off on Monday and Tuesday, that is 21 liters (or 46+ pounds). We have jokingly said "Match that Jenny Craig". Although she lost the weight quickly, she had also gained it pretty quickly.
Her lungs continue to improve and she is still on pace for the goal of coming off the ECMO machine on Monday and just be supported by a ventilator.
Courtney had a good night and we were able to get a little more sleep. They have been able to pull a lot of fluid off of her since yesterday. Her lung x-ray this morning looks significantly better than yesterday.
Today's focus: more of the same. The goal is for her lungs to recover enough over the weekend to allow her to come off ECMO on Monday and have her lungs only supported by the ventilator.
8:00 PM
Courtney has had a good day today as they continue to pull fluid off of her. In fact, over the last 36 hours they have drawn off 9 liters of fluid. Along with the 12 liters they drew off on Monday and Tuesday, that is 21 liters (or 46+ pounds). We have jokingly said "Match that Jenny Craig". Although she lost the weight quickly, she had also gained it pretty quickly.
Her lungs continue to improve and she is still on pace for the goal of coming off the ECMO machine on Monday and just be supported by a ventilator.
Friday, February 21, 2014
Courtney Update - Friday, February 21, 2014
10:30 PM
Courtney had a pretty good day today and I actually went in and worked. Her bleeding issues continue to improve and the doctors are pleased with her heart function.
Today's focus was drawing off fluid (she is still very swollen in some places) and concentrating on her lung function. Late this afternoon, they performed a bronchoscopy to evaluate the state of her lungs and provide a certain level of treatment for the lungs. The result: her lungs are VERY sick, but they feel that they are recoverable. However, it will take a few days (or more).
We thank God for the word recoverable.
Courtney is still heavily sedated, so we are going to try getting some rest tonight and be ready for tomorrow. We hope that it will be another step forward, even if it is at a turtle's pace.
9:00 AM
Courtney had a good night. They were able to start dialysis during the night, so now it's time to focus on another obstacle - her lungs. Some time today they will do a bronchoscopy to help assess her lungs. This will help them prepare a care plan on restoring lung function enough to come off VV ECMO by early next week.
Courtney had a pretty good day today and I actually went in and worked. Her bleeding issues continue to improve and the doctors are pleased with her heart function.
Today's focus was drawing off fluid (she is still very swollen in some places) and concentrating on her lung function. Late this afternoon, they performed a bronchoscopy to evaluate the state of her lungs and provide a certain level of treatment for the lungs. The result: her lungs are VERY sick, but they feel that they are recoverable. However, it will take a few days (or more).
We thank God for the word recoverable.
Courtney is still heavily sedated, so we are going to try getting some rest tonight and be ready for tomorrow. We hope that it will be another step forward, even if it is at a turtle's pace.
9:00 AM
Courtney had a good night. They were able to start dialysis during the night, so now it's time to focus on another obstacle - her lungs. Some time today they will do a bronchoscopy to help assess her lungs. This will help them prepare a care plan on restoring lung function enough to come off VV ECMO by early next week.
Thursday, February 20, 2014
Courtney Update - Thursday, February 20, 2014
10:00 PM
It's been another long day, but Courtney is well knocked out right now and resting comfortably. We are grateful that her heart seems to be recovering and it seems (for now anyway) that she has overcome the giant bleeding obstacle. Hopefully she will recover enough from the events over the last 48 hours to go on dialysis sometime during the night.
We are praying for an uneventful night and strength to deal with tomorrow's obstacles.
God is good!! and it's time to rest!
3:45 PM
Courtney's bleeding is under control now and we got to see her for the first time today since 6:00 AM. Her bleeding will have to be monitored closely for the remainder of the day and night as they progress forward with her care.
2:30 PM
No update - still working on controlling the bleeding.
12:45 PM
They are still working on controlling the bleeding. The doctor said that now it is more of an all over oozing than a flow from any particular vessel. However, there also may be some specific trouble areas also. They are trying different strategies in attempting to manage the bleeding. It may be an on and off again battle all day. We still haven't seen her since 6:00 AM and it will be a while.
8:00 AM
Well, so much for getting some rest last night. We got a call at 4:45 this morning to let us know that the bleeding had not decreased enough during the night and the doctor needed to go back in and address the bleeding issues. This is not unexpected and is why they had left the chest open. We left the room around 6:00 AM so that they could setup the room as sterile and perform the procedure in her room instead of travelling to the OR. As of 8:00 AM, they are still working on her.
It's been another long day, but Courtney is well knocked out right now and resting comfortably. We are grateful that her heart seems to be recovering and it seems (for now anyway) that she has overcome the giant bleeding obstacle. Hopefully she will recover enough from the events over the last 48 hours to go on dialysis sometime during the night.
We are praying for an uneventful night and strength to deal with tomorrow's obstacles.
God is good!! and it's time to rest!
3:45 PM
Courtney's bleeding is under control now and we got to see her for the first time today since 6:00 AM. Her bleeding will have to be monitored closely for the remainder of the day and night as they progress forward with her care.
2:30 PM
No update - still working on controlling the bleeding.
12:45 PM
They are still working on controlling the bleeding. The doctor said that now it is more of an all over oozing than a flow from any particular vessel. However, there also may be some specific trouble areas also. They are trying different strategies in attempting to manage the bleeding. It may be an on and off again battle all day. We still haven't seen her since 6:00 AM and it will be a while.
8:00 AM
Well, so much for getting some rest last night. We got a call at 4:45 this morning to let us know that the bleeding had not decreased enough during the night and the doctor needed to go back in and address the bleeding issues. This is not unexpected and is why they had left the chest open. We left the room around 6:00 AM so that they could setup the room as sterile and perform the procedure in her room instead of travelling to the OR. As of 8:00 AM, they are still working on her.
Wednesday, February 19, 2014
Courtney Update - Wednesday, February 19, 2014
Here is a reverse chronological review of today's activities concerning Courtney's surgery.
11:00 PM
We met with the surgeon about 9:00 and got a detailed report on the surgery and what to expect when we saw Courtney in the PICU. We did get to see her about 10:00 and for a very, very, very critical sick child, we were amazed at how well she looked. Well, once you got past the paleness (loss of blood), her chest being open, and tubes coming out of her like some science fiction creature, she really did look good. I stole that part from Jenn's Facebook post. LOL
We know that she has a long road to recovery and still has to get her lungs and kidneys functioning on their own, but our little fighter is still here and still fighting and we have friends and family all over the world praying for her.
After a very long day, we are going to try to get some rest tonight. I will update more tomorrow about her status and plan of care once we have had some rest.
8:30 PM
The doctors have decided to leave her chest open because of significant bleeding issues and will put her on the VV ECMO. We hope to talk with the doctor within the next hour and then see Courtney in her new room on the cardiac side of the PICU.
6:30 PM
The bleeding is more under control and they will probably end up not closing her chest. They are discussing whether to put her on VV ECMO, which means her heart will do its own work but the ECMO machine will act as her lungs to allow them to recover.
5:00 PM
Courtney is doing okay, but her chest is still open and they are monitoring and managing her bleeding, but this is expected.
3:20 PM
The heart valve has been successfully replaced and she is off the bypass machine. Her heart and lungs are functioning on their own right now, but they are evaluating whether she needs to go back on ECMO or not.
1:45 PM
Courtney is now successfully on heart bypass machine and the ECMO tubes have been removed. The doctor is now working on replacing the infected heart valve.
12:15 PM
The doctors said that they now have access to move her to bypass, but have not yet moved her from the ECMO machine to the bypass machine.
11:00 AM
We just got our first update. It took a long time for the anesthesia team and the doctor to complete their prep work. So as of 10:38 they were just starting to work on her chest to get her on by-pass.
9:00 AM
This morning we were told that the surgery is actually scheduled for 9:00 instead of 8:00. They took her from the room about 8:45 or so and we are in the waiting room now. We know it will take a while to get her down to the OR and get things setup. We should hopefully get updates every hour to hour and a half.
Thank you for your prayer support.
11:00 PM
We met with the surgeon about 9:00 and got a detailed report on the surgery and what to expect when we saw Courtney in the PICU. We did get to see her about 10:00 and for a very, very, very critical sick child, we were amazed at how well she looked. Well, once you got past the paleness (loss of blood), her chest being open, and tubes coming out of her like some science fiction creature, she really did look good. I stole that part from Jenn's Facebook post. LOL
We know that she has a long road to recovery and still has to get her lungs and kidneys functioning on their own, but our little fighter is still here and still fighting and we have friends and family all over the world praying for her.
After a very long day, we are going to try to get some rest tonight. I will update more tomorrow about her status and plan of care once we have had some rest.
8:30 PM
The doctors have decided to leave her chest open because of significant bleeding issues and will put her on the VV ECMO. We hope to talk with the doctor within the next hour and then see Courtney in her new room on the cardiac side of the PICU.
6:30 PM
The bleeding is more under control and they will probably end up not closing her chest. They are discussing whether to put her on VV ECMO, which means her heart will do its own work but the ECMO machine will act as her lungs to allow them to recover.
5:00 PM
Courtney is doing okay, but her chest is still open and they are monitoring and managing her bleeding, but this is expected.
3:20 PM
The heart valve has been successfully replaced and she is off the bypass machine. Her heart and lungs are functioning on their own right now, but they are evaluating whether she needs to go back on ECMO or not.
1:45 PM
Courtney is now successfully on heart bypass machine and the ECMO tubes have been removed. The doctor is now working on replacing the infected heart valve.
12:15 PM
The doctors said that they now have access to move her to bypass, but have not yet moved her from the ECMO machine to the bypass machine.
11:00 AM
We just got our first update. It took a long time for the anesthesia team and the doctor to complete their prep work. So as of 10:38 they were just starting to work on her chest to get her on by-pass.
9:00 AM
This morning we were told that the surgery is actually scheduled for 9:00 instead of 8:00. They took her from the room about 8:45 or so and we are in the waiting room now. We know it will take a while to get her down to the OR and get things setup. We should hopefully get updates every hour to hour and a half.
Thank you for your prayer support.
Tuesday, February 18, 2014
Courtney Update - Tuesday, February 18, 2014
Once again we are asking our "Prayer Warriors" to lift us up in prayer.
After MUCH consultation and debate, the team of doctors that are caring for Courtney feel that Courtney's best chance for a full recovery is to replace the infected heart valve while she is at a somewhat stable state.
Courtney will be having open heart surgery tomorrow morning (Wednesday, Feb. 19th) around 8:00 AM CST to replace the valve. While in the Operating Room, they will remove the ECMO tubes in her neck. Other decisions will be made once in the OR (like whether to put her back on ECMO, the placement of new ECMO tubes, etc.).
Thank you for your continued prayer support.
We continue to be amazed by the number of people who are praying for our "little fighter". My last count was 30 states and Australia, Brazil, China, England, Guam, Mexico, Persian Gulf, and Puerto Rico. Feel free to share with your church or small group prayer lists.
Here are the states we are missing if you know of anyone in these states that would care to join our prayer chain:
Alaska, Arkansas, Idaho, Kansas, Michigan, Minnesota, Montana, Nebraska, New Hampshire, New Mexico, New York, Oregon, Rhode Island, South Dakota, Utah, Vermont, and Wyoming.
9:00 PM
I forgot to mention earlier that our associate pastor is in Israel right now and he told us that he was going to place Courtney's name on the "Wailing Wall" so that she could be prayed for.
We now have a little more detail about the current plan for tomorrow and thought we would share since there are many people who will be wanting updates.
Courtney will leave her PICU room between 7:00-7:30 am CST; surgery will begin somewhere around 8:00-8:30 AM.
First they will hook her up to a by-pass machine and remove her from ECMO (including taking out the ECMO tubing from her neck and cautiously repairing any issues with the jugulars); then they will begin the process of replacing the valve – this will be a much slower process than her previous valve replacements; the next steps will have to be determined upon completing the valve replacement…things like putting her back on ECMO [and putting new ECMO tubing closer to her chest, if not ECMO then where to put a Vas Cath for dialysis, other iv issues, and several other options].
The total time for the above may take 8 or more hours [late afternoon is what we are to expect]. Truth is it could take less or a lot more.
Gonna be a long day….but hopefully the next necessary step in her recovery….
After MUCH consultation and debate, the team of doctors that are caring for Courtney feel that Courtney's best chance for a full recovery is to replace the infected heart valve while she is at a somewhat stable state.
Courtney will be having open heart surgery tomorrow morning (Wednesday, Feb. 19th) around 8:00 AM CST to replace the valve. While in the Operating Room, they will remove the ECMO tubes in her neck. Other decisions will be made once in the OR (like whether to put her back on ECMO, the placement of new ECMO tubes, etc.).
Thank you for your continued prayer support.
We continue to be amazed by the number of people who are praying for our "little fighter". My last count was 30 states and Australia, Brazil, China, England, Guam, Mexico, Persian Gulf, and Puerto Rico. Feel free to share with your church or small group prayer lists.
Here are the states we are missing if you know of anyone in these states that would care to join our prayer chain:
Alaska, Arkansas, Idaho, Kansas, Michigan, Minnesota, Montana, Nebraska, New Hampshire, New Mexico, New York, Oregon, Rhode Island, South Dakota, Utah, Vermont, and Wyoming.
9:00 PM
I forgot to mention earlier that our associate pastor is in Israel right now and he told us that he was going to place Courtney's name on the "Wailing Wall" so that she could be prayed for.
We now have a little more detail about the current plan for tomorrow and thought we would share since there are many people who will be wanting updates.
Courtney will leave her PICU room between 7:00-7:30 am CST; surgery will begin somewhere around 8:00-8:30 AM.
First they will hook her up to a by-pass machine and remove her from ECMO (including taking out the ECMO tubing from her neck and cautiously repairing any issues with the jugulars); then they will begin the process of replacing the valve – this will be a much slower process than her previous valve replacements; the next steps will have to be determined upon completing the valve replacement…things like putting her back on ECMO [and putting new ECMO tubing closer to her chest, if not ECMO then where to put a Vas Cath for dialysis, other iv issues, and several other options].
The total time for the above may take 8 or more hours [late afternoon is what we are to expect]. Truth is it could take less or a lot more.
Gonna be a long day….but hopefully the next necessary step in her recovery….
Monday, February 17, 2014
Courtney Update - Monday, February 17, 2014
4:30 PM
After much deliberation and consultation, they have decided that it is in her best interest if they move the ECMO tubes from her neck and place larger tubes in her chest area that go directly to her heart. This will allow the vessels in her neck to be available if they need to replace the heart valve.
As soon as an operating room becomes available, they will take Courtney to the OR along with her ECMO machine and move the tubes. Thus far, all the procedures have been done at her bedside in the PICU. They will evaluate where things are at through the night and possibly go in and replace the valve as early as tomorrow.
Once again your prayer support is needed and you may never know how much it is felt and appreciated.
6:00 PM
OK. CHANGE OF PLANS............. No surgery tonight, at least not right now. :-)
The doctors have decided that they are pulling enough fluid right now with the current setup, so they are going to wait to reevaluate tomorrow morning.
Thank you for your continued support.
OK. CHANGE OF PLANS............. No surgery tonight, at least not right now. :-)
The doctors have decided that they are pulling enough fluid right now with the current setup, so they are going to wait to reevaluate tomorrow morning.
Thank you for your continued support.
Sunday, February 16, 2014
Courtney Update - Sunday, February 16, 2014
12:30 PM
This morning about 5:30 AM, the nurse called us to say that Courtney had been having a bad night and the doctors were concerned and wanted to speak with us. About 8:00 AM, she became extremely unstable and it took about 40 minutes to stabilize her. However, she was still bad enough that they needed to do an emergency ECMO procedure.
We left the room about 9:45 and the doctor came back to update us about 11:45. He was able to put her back on ECMO using the same access as before. We have not seen her yet, but hope to soon. She will have to go back on dialysis as well and we are praying that her kidneys will start functioning soon.
2:00 PM
We were able to see Courtney and she looks good considering what she has gone through today. She is stable on the ECMO machine and they will put her back on dialysis later today to help her kidneys and start pulling off fluids to remove the swelling.
6:00 PM
She is still stable on the ECMO machine and they now have the dialysis machine hooked up also. They are only pulling the amount of fluid from her body that they are putting in currently.
10:30 PM
Courtney is resting tonight and still stable on the ECMO and dialysis machines. We are praying for an uneventful night and that her kidneys begin functioning.
Thank you so very much for your prayer support, especially today during some very difficult times. It is such a blessing to know that we have churches that will take time to include us in a church wide prayer and that we have so many prayer warriors crying out to God during our time of need.
This morning about 5:30 AM, the nurse called us to say that Courtney had been having a bad night and the doctors were concerned and wanted to speak with us. About 8:00 AM, she became extremely unstable and it took about 40 minutes to stabilize her. However, she was still bad enough that they needed to do an emergency ECMO procedure.
We left the room about 9:45 and the doctor came back to update us about 11:45. He was able to put her back on ECMO using the same access as before. We have not seen her yet, but hope to soon. She will have to go back on dialysis as well and we are praying that her kidneys will start functioning soon.
2:00 PM
We were able to see Courtney and she looks good considering what she has gone through today. She is stable on the ECMO machine and they will put her back on dialysis later today to help her kidneys and start pulling off fluids to remove the swelling.
6:00 PM
She is still stable on the ECMO machine and they now have the dialysis machine hooked up also. They are only pulling the amount of fluid from her body that they are putting in currently.
10:30 PM
Courtney is resting tonight and still stable on the ECMO and dialysis machines. We are praying for an uneventful night and that her kidneys begin functioning.
Thank you so very much for your prayer support, especially today during some very difficult times. It is such a blessing to know that we have churches that will take time to include us in a church wide prayer and that we have so many prayer warriors crying out to God during our time of need.
Saturday, February 15, 2014
Courtney Update - Saturday, February 15, 2014
Today has been a day that reminds us that this is going to be a very slow road to recovery. Yesterday was a step forward, but those days are not going to happen every day. We are going to have many days like today - some good hours, some not so good hours.
Knowing she is mostly sedated, she was not as alert today as she has been on prior days, but she still opened her eyes in response to our voices (once again especially Kelsey's voice). She does respond with facial expressions to pain and even appears to cry from pain or "uncomfortableness" (that is a Jennifer word) :-)
There is not really much new to update about today, except the fact that she is still here and still fighting.
We appreciate the prayer support and continue to pray for her healing and comfort and strength for us and our extended family throughout this recovery.
Knowing she is mostly sedated, she was not as alert today as she has been on prior days, but she still opened her eyes in response to our voices (once again especially Kelsey's voice). She does respond with facial expressions to pain and even appears to cry from pain or "uncomfortableness" (that is a Jennifer word) :-)
There is not really much new to update about today, except the fact that she is still here and still fighting.
We appreciate the prayer support and continue to pray for her healing and comfort and strength for us and our extended family throughout this recovery.
No Mo ECMO!!!!!!!! - Friday, February 14, 2014
Around 4:15 this afternoon, Courtney's room was cleared in order to start the process of removing her from ECMO and securing a Vas Cath (Vascular Catheter) in it's place. Around 7:00 PM, we got a call from the doctor informing us that she had been successfully taken off of the ECMO machine and a Vas Cath was in place. The Vas Cath is tubing that will allow her to be on continuous dialysis and will allow the apheresis machine to piggyback on it as needed.
We got to see her around 7:45 and she looks good (relatively speaking). She has gotten her color back although she still has some discoloration in legs and some swelling in her upper body and hands. However, the swelling in her face has gone down significantly and she looks more like herself than she has in the last week. YEAH!!!!!
On the other hand, nobody can teach us about perspective the way that Courtney can.
Just one week ago, we thought Courtney was just sick due to the fever she was running. On Saturday, after taking her to the ER, we were scared because Courtney was in so much pain and became so sick. By early Sunday morning, we were distraught because Courtney's body was in severe septic shock. In addition to being back on a ventilator and sedated heavily, we were told she needed to go onto a continuous dialysis machine because she was essentially in complete kidney failure. We were devastated with that news, but within an hour later, we learned that she would have to go straight to the ECMO machine. In all our previous experiences in the PICU, we had never seen a severely septic child survive ECMO (although we had only seen a handful of kids on ECMO over several years).
The outlook was extremely grim. Her sepsis continued to escalate until the blood infection was known and targeted. The aggressive treatment for the sepsis has caused a host of new issues. In all honesty, between the rashes, skin discoloration, and extreme swelling, there were a few times when she was unrecognizable as Courtney.
She still has an extremely long way to go to regain the quality of life she had a week ago. Her kidneys are still in complete failure; her heart and valve are damaged and it will be extremely risky when the time comes to deal with replacing the valve; she will have to deal with aggressive treatments against the bacteria for quite a while; her lungs will have to be strong enough to come off the ventilator, her swelling will have to remain under control; she will have to get her temperature and blood pressure under control, and her body will have to overcome a host of other issues.
And even with all that....in perspective....we may actually get a few hours of rest tonight because we are no longer devastated that she is so sick she has to go on continuous dialysis. In fact, we are grateful that she is well enough to come off of ECMO and go onto dialysis. HMMMMM!!
Throughout Courtney's life, God has always had a way of putting things into perspective...
Please continue to pray for Courtney's healing and to help us keep things in the right perspective . I pray that we will always look to our Heavenly Father for comfort, strength, patience, understanding, guidance, support, and thank Him for His mercies that He has bestowed upon us.
Thank you
Friday, February 14, 2014
Courtney Update - Friday, February 14, 2014
I wanted to give an update early today since I had posted a time that the trial off the ECMO machine was going to start this morning.
As is typical in the PICU at Vanderbilt, especially when it comes to Courtney, plans seem to change and time schedules are not written in stone. LOL The doctors decided to do the round of plasma pheresis and exchange this morning before they do the trial off ECMO. They actually had problems with the apheresis machine (not Courtney), so that will not finish until around noon (CST). Once it has completed, they will clamp off the ECMO tubes and see how her heart handles that for an hour or so. If she does well, the plan is still to remove the tubes later today.
Thank you for your continued prayer support. I will try to update again once the testing has completed and we know the next step in the plan.
Update as of 3:30 PM - Courtney failed her initial trial this afternoon due to not being able to maintain her blood pressure. However, after giving her more blood and some medicine for her blood pressure, she was able to pass the trial the second time and they will setup a time to remove her from the ECMO machine later today.
As is typical in the PICU at Vanderbilt, especially when it comes to Courtney, plans seem to change and time schedules are not written in stone. LOL The doctors decided to do the round of plasma pheresis and exchange this morning before they do the trial off ECMO. They actually had problems with the apheresis machine (not Courtney), so that will not finish until around noon (CST). Once it has completed, they will clamp off the ECMO tubes and see how her heart handles that for an hour or so. If she does well, the plan is still to remove the tubes later today.
Thank you for your continued prayer support. I will try to update again once the testing has completed and we know the next step in the plan.
Update as of 3:30 PM - Courtney failed her initial trial this afternoon due to not being able to maintain her blood pressure. However, after giving her more blood and some medicine for her blood pressure, she was able to pass the trial the second time and they will setup a time to remove her from the ECMO machine later today.
Courtney Update - Thursday, February 13, 2014
All things considered, Courtney had a very good day today. She was holding her eyes open for several seconds at a time and she is much more consistently responding to all our voices, but especially to Kelsey.
We have to make sure that Kelsey is on Courtney's left side of the bed when talking to her because once today Courtney tried to turn her head toward Kelsey when she was on the other side. While connected to the ECMO machine, Courtney has two tubes that look like clear garden hoses with flowing red blood that go through her neck (right jugular) and connect to the machine. Sudden movements to that side are not necessarily a good thing.
This morning the doctors performed a TEE test (Trans Esophageal Echocardiogram) - which is basically an ultrasound through her throat to provide a closer look at the heart's valves and chambers without interference from the ribs or lungs. They discovered that her valve is obstructed, which at some point, will require intervention, but they now hope it can wait while she continues to recover from this NASTY sepsis. The left side of her heart has regained its function, but the right side has not recovered as fast.
Her health has improved enough that the plan (as of Thursday night) is to clamp off her ECMO tubes on Friday morning somewhere around 7:30 for about an hour or so and see how she does. If it goes well, they will try to take her off the ECMO machine sometime on Friday. She will remain on the ventilator, the dialysis machine, multiple IV pumps, and occasionally the Apheresis machine (plasma pheresis and exchange).
Overall, it was a very encouraging day....more steps forward than backwards.
Thank you again for your continued prayer support.
Thursday, February 13, 2014
Courtney Update - Wednesday, February 12, 2014
The last 24 hours have been a mixed bag of reactions, emotions, and opinions on Courtney's health status.
Last night (Tuesday) at midnight, Courtney had reached a stage that Jennifer called the worst she had seen her have since being admitted to the PICU on Saturday night. However, by 6:00 AM this morning, she was looking the best that Jennifer had seen her during this stay in the PICU. She continued to look pretty good (relatively speaking) throughout the day.
She remains connected to several machines (ECMO, dialysis, ventilator, apheresis) and mulitple IV pumps and monitors. However, on a positive note, for a couple of times today she was able to tolerate some weaning off complete dependency of the ECMO machine. She was doing 50% of the work and the machine was doing 50% of the work.
Even with aggressive treatment, she continues to test positive for the staph infection. The infection has definitely affected her heart valve and its ability to work properly. A more invasive test of the heart valve will be performed some time on Thursday. The test will better evaluate her heart valve status and allow the doctors to begin formulating a plan.
One other positive note: This afternoon on multiple occasions, Courtney intentionally and successfully tried to open her eyes on Kelsey's command. If you know their relationship, it is no surprise since Kelsey has always been able to get Courtney to do things that other people could not. :-) To a lesser extent, she also opened her eyes for me, albeit was after they were moving her over and aroused her some. She opened them up a couple of times after that when I talked to her.
When the doctors were asked today "assuming the best possible outcome, how long should we expect to be in the PICU?", the answer was a consistent "weeks". Obviously, there is no answer to to how long it will be for all other possible outcomes.
We continue to request your prayer support. I have always believed in the power of prayer and I would love to have all 50 states represented when praying for her. If you have friends and family in other states, please feel free to outstretch our prayer chain to other states.
God bless you for your support and thank you to everyone who has left comments here, texted your support, or left us messages on Facebook.
Tuesday, February 11, 2014
Courtney Update - Tuesday, February 11, 2014
Around 2:00 AM this morning, Courtney's body started tolerating some fluid removal from her body. They have added a new machine to Courtney's regimen that will be used a couple of hours per day for the next few days. This machine piggybacks off the dialysis and ECMO machines and is used for Plasma Pheresis and Plasma Exchange. You may not know what these terms mean, so in simple language, the machine removes the plasma from Courtney's blood after going through the other machines and replaces her plasma with "new" plasma from donors.
By late morning, her skin coloration was much better, the swelling was going down, and she was making small improvements elsewhere as well. Unfortunately, as the day progressed, her color worsened in some areas and her skin has started to blister. Her right lung now has much more fluid, which was to be expected.
The infection in her blood has been identified as Staph MSSA and they will now find the best fit for an antibiotic to fight this bug. We also learned that the likelihood of this infection attaching to her heart valve has gone from possible to probable.
We have had family and friends with us throughout this process. We also have prayer warriors represented across at least 7 states and have numerous friends asking what they can do for us.
One person has suggested, if you are able or interested, is to donate blood, plasma, or platelets at an American Red Cross Center and ask that the donation be credited to Courtney's account. The ECMO process uses lots of blood products, as well as the plasma pheresis and exchange use lots of plasma. It is not a direct donation, meaning the blood that you donate now will not be available for awhile, so it would not be used by Courtney. However, it is my understanding that any blood products that are credited to Courtney's account will create a credit for her and not be charged when she uses blood products.
We continue to need your prayer support and can definitely feel the effects and it is very much appreciated.
May God bless you all.
By late morning, her skin coloration was much better, the swelling was going down, and she was making small improvements elsewhere as well. Unfortunately, as the day progressed, her color worsened in some areas and her skin has started to blister. Her right lung now has much more fluid, which was to be expected.
The infection in her blood has been identified as Staph MSSA and they will now find the best fit for an antibiotic to fight this bug. We also learned that the likelihood of this infection attaching to her heart valve has gone from possible to probable.
We have had family and friends with us throughout this process. We also have prayer warriors represented across at least 7 states and have numerous friends asking what they can do for us.
One person has suggested, if you are able or interested, is to donate blood, plasma, or platelets at an American Red Cross Center and ask that the donation be credited to Courtney's account. The ECMO process uses lots of blood products, as well as the plasma pheresis and exchange use lots of plasma. It is not a direct donation, meaning the blood that you donate now will not be available for awhile, so it would not be used by Courtney. However, it is my understanding that any blood products that are credited to Courtney's account will create a credit for her and not be charged when she uses blood products.
We continue to need your prayer support and can definitely feel the effects and it is very much appreciated.
May God bless you all.
Monday, February 10, 2014
Courtney admitted to Vanderbilt Childrens Hospital PCCU
Monday, February 10, 2014
If you are reading this page, you know that Courtney is in the hospital and you are coming here for updates. Here is a synopsis of how we got to where we are right now:
If you are reading this page, you know that Courtney is in the hospital and you are coming here for updates. Here is a synopsis of how we got to where we are right now:
When Courtney went to bed on Thursday night, she was complaining about not being able to get comfortable and was shivering. I put extra blankets on her thinking it was a little colder in her room than it had been, but also told Jennifer she might be coming down with something.
She awoke Friday morning a little lethargic and had a small fever in the morning, so she did not go to school and went back to bed. When Jennifer woke her up later in the morning, her fever had risen and became a very big fever in the afternoon. Jennifer spoke with doctors at Vandy and had begun giving her Tylenol and Motrin to reduce the fever. By late Friday afternoon her temperature was back to normal with no other symptoms.
She awoke Saturday morning with a rash and a fever going in the opposite direction, down to 95. We were in contact with doctors at Vandy and by Saturday afternoon Courtney walked herself [holding onto me and walking very slowly] into the ER. Within hours she was going downhill fast. They moved her to the trauma side of the ER and then admitted her into the PCCU about 11:00 PM Saturday night. They decided to put her on a ventilator at midnight to help sedate her easier and keep her from working so hard.
By Sunday morning it was apparent she was essentially in kidney failure and her heart was not 'squeezing' properly [along with other issues]. Her rapidly declining health required her to go onto an ECMO machine which is acting as her temperature control, heart and lungs. They have also connected a dialysis machine to the ECMO to act as her kidneys. They have determined she has a very serious bacterial blood infection but have been unable to determine the origin in order to treat the source.
As of late this Monday evening, the ECMO machine is properly filtering her system but Courtney's body will not yet tolerate the removal of all the excess fluid that is accumulating and causing her body to swell all over. However, her skin color is much improved. She is still hour by hour but we are very hopeful.
Thank you very much to everyone who has called, texted, posted or commented on Facebook, come by to visit, and most importantly lift up Courtney up in your prayers. We appreciate all that you have done and have offered to do. We will be here for several days, possibly weeks, and if things go well, will probably be in for a long recovery.
Your continued prayer support is very much appreciated and already felt. I am comforted by the words in John 14:13 - "Whatever you ask in My name, that will I do, so that the Father may be glorified in the Son". It may be selfish, but I am asking for God's complete healing for Courtney so that she may continue the good work that Christ has started in her. Phillipians 1:6
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