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.
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