Monday, November 13th, 2006:
Yesterday, our daughter Rochelle, turned 21 years old, November 12th, 2006. Today she is in an ICU unit at Strong Hospital in Rochester NY. She has been sick for the last 3 weeks. We didn't realize how sick she was. Her kidneys shut down and she will be receiving dialysis over the next several days. We and the doctors are hoping that her kidneys wake up during that time and that she will not have to stay on dialysis. Please keep Rochelle in your prayers, and I will keep you posted. Thank you for your prayers....Keith & Chris Burroughs
Tuesday, November 15th, 2006:
Rochelle took a turn for the worse Yesterday. They started the dialysis, and everything was going good. Then in the early afternoon she started having breathing difficulties. They inserted a tube down into her lungs and up came blood, her lungs were bleeding. She is now on a respirator and sedated. They told us that there is something going on with the blood that they refer to as TTP, which is short for some long name. They did a blood filtering last night and they hope that will clear up the problem.
Thursday, November 16th, 2006:
There has been a slight improvement. She is still sedated, but it is the sleeping type and not the paralyzing type. They started a tube feed so that she can start receiving some nourishment. She is starting to breathe a little on her own, but they're concerned there is a possibility of a rupture inside the lungs. I have received many emails from people stating that they are holding Rochelle and us up in prayer, and we thank you for your prayers. We know that God is really the one in control.
Friday November 17th, 2006:
There has been some improvement. She was out of sedation somewhat yesterday, still groggy, but trying to communicate with us and her eyes were open. They had some good news to report to us, that her blood count had improved, but they would continue with the blood filtering. She is still on the respirator, and there is still a danger of a rupturing in the lungs. When her condition improves more they will do a biopsy on her kidneys to determine what caused all of this and the condition of her kidneys. Right now they think it was strep-throat that she was dianosed with on October 30th.
Saturday, November 18th, 2006:
We received some good news from the doctor yesterday. If things keep improving she will be taken off the respirator today. He told us that she still may need the tube feed, but it will go through her nose. They will do a swallowing evaulation, and if she is able to swallow, she will be taken off the tube feed.
Sunday, November 19th, 2006:
Well, looks like we're taking 2 steps forward and 1 step back. Her breathing didn't improve enough to take her off the respirator. Her blood pressure was running high, so they put her back on sedation. It looks like we're back to where she was on Wednesday. I'm getting more reports of people praying for her.
Monday, November 20th, 2006:
There has been some improvement in her breathing, and we're hopeful that she will be taken off the respirator today.
Tuesday, November 21st, 2006:
They did a scope yesterday inside the lungs. They found some old blood and removed it and also checked for new bleeding. They didn't find any new bleeding. They did another blood test that shows that she has a rare disease, it's called: Goodpasture's Syndrome. This disease affects the kidneys and lungs, which is where most of her problems exists. Around 9:30 this morning they will be doing a biopsy on her kidneys. They should have the results of that biopsy this afternoon. There are some risks involved with the biopsy. She has to lie perfectly still during the tissue extraction, so they will be stopping her breathing at those times. There is also a small chance of infection or bleeding. They had a problem with her trying to pull the tubes out when she would come out of sedation, so they put mits on her hands to prevent that. If she were to pull on the wrong tube, it could be life threatening.
Wednesday, November 22nd, 2006:
Goodpasture's Syndrome - here is a link that tells all about it: http://kidney.niddk.nih.gov/kudiseases/pubs/goodpasture/
The biopsy went fine, she had some bleeding, but they got that under control. We're still waiting for the results of the biopsy and procedures.
Thanksgiving Day, 2006:
We got some results of the biopsy, her kidneys are non-functional, and they confirmed that she has Goodpasture's Syndrome. We were faced with a new problem. The medicine they needed to give her to treat the disease would take away her ability to bear children. After much discussion with the doctors, it was decided that they could freeze her ovaries, thus protecting them from damage from the medication, so that procedure has begun.
I want to wish everyone a Happy Thanksgiving. I know many of you will gather around the table, thankful that you're all together. We thought we would all be together as a family this year. Sometimes things don't go according to our plans. We are thankful for the many who have stood with us, and offered up their prayers, thankful that our daughter is improving, and we will be looking forward to her coming home someday.
Friday, November 24th, 2006:
They increased her O2 levels yesterday because of small pockets of collapsed lung. There is a new concern, there is a possibility she can get pneumonia.
Saturday, November 25th, 2006:
She is receiving chemotherapy injections for the Goodpasture's Syndrome, so they told us there is a possibility she could loose her hair. We talked with the doctor yesterday, and they want to take her off sedation, but every time they try, she gets agitated, and her heart rate and BP becomes unstable. We suggested that they give her medication to calm her.
Sunday, November 26th, 2006:
Her blood level went down, so they gave her some units of blood. They did a cat scan on her to determine where she is bleeding, but they didn't have the results yet.
Monday, November27th, 2006:
They are still trying to take her off sedation, but they are still having problems with her agitation and rising BP and heart rate. Once they can get that under control they will try to remove the tube for breathing, and try to get her breathing on her own. They will try to do that today.
Tuesday, November 28th, 2006:
They had her on less sedation yesterday and she was teary-eyed, she kept trying to pull on the breathing tube and we tried to tell her not to do that.
Wednesday, November 29th, 2006:
There has been a new loss of blood somewhere, and they had to give her some more blood. They are going to do another scope of her lungs to see if there is new bleeding there.
Thursday, November 30th, 2006:
They will be doing the scope into her lungs this morning to look for new bleeding. If everything looks OK there they will do a cat scan to locate the bleeding. They did say that her blood count has improved. She continues to be awake more, and they are hoping to take her off the respirator soon.
Friday, December 1st, 2006:
They couldn't do the bronchial-scope yesterday. When they tried to insert it, she tried to bite into it. They will make another attempt today.
Saturday, December 2nd, 2006:
They were able to do the bronchial-scope yesterday and it showed that her lungs are bleeding. That means that they will have to keep her on the ventilator longer than expected.
Sunday, December 3rd, 2006:
They suctioned her lungs yesterday and said that it was old blood, but not old old blood and not a large amount.
Monday, December 4th, 2006:
There is a possibility she may need to have a trache tube put in because of her prolonged use of the ventilator. We should find out more about that today.
Wednesday, December 6th, 2006:
The doctor's are saying that they haven't seen a case this severe with this disease. They also are telling us that she needs a lot of prayers. My reply: "She's definitely getting a lot of prayers". Thank you everyone for being a part of her care plan. We're trusting that prayer will make the difference.
Thursday, December 7th, 2006:
They are going to try a new medication on Rochelle to treat the Goodpasture's Syndrome. They will also be doing a thache between now and Monday.
Friday, December 8th, 2006:
Not much change with Rochelle. We hope to find out today how well this new medication is doing.
Saturday, December 9th, 2006:
They put the trache in last night, she was still under sedation from it when we were there. We decided to hold off our Christmas until Rochelle can be a part of it. We're hoping that will be at home. We may be the only ones in Batavia with decorations up.
Sunday, December 10th, 2006:
Got a report yesterday that her antibodies went down. This is what they need to happen to stop her lungs from bleeding. Also the blood they suction out of her lungs every day, was darker, indicating old blood. They tried to see how she does without the ventilator, and her respiration's were around 40 / minute. They will keep checking her to see if that number comes down. It needs to be about 20 / minute.
Thursday, December 14th, 2006:
They moved her i.v. and dialysis connections to her shoulders. They also moved her to a different room in the same ICU. The dialysis they did yesterday removed about 10 lbs. of fluid, so she is now less bloated, and looks more like herself. We started decorating our house for Christmas a little different this year, in yellow ribbons.
Sunday, December 17th, 2006:
Still not much change. They are still trying to ween her off the sedation. She was spiking a temperature yesterday of 39c.
Wednesday, December 20th, 2006:
We and the nurses and doctor's are starting to notice a gradual improvement in her condition. The fluid coming out of her lungs has less blood in it. She has been off sedation more. They are starting to get her to exercise and will be getting physical therapy involved in that process.
Thursday, December 21, 2006:
When we visited her last night, she showed remarkable improvement. They took her off the ventilator around 3:00 pm, and she was breathing on her own! They were getting ready to move her to a different unit on the same floor when we left around 7pm, and she was still off the ventilator. They were going to put her back on the ventilator overnight, after they moved her, and continue the process of weening her off the ventilator. If she continues to improve, they will fix the trache, so she can talk and swallow.
Tuesday, December 26th, 2006:
Rochelle continues to improve. She is at the phase where she is off the ventilator for 18 hours a day. She has been able to talk a little with a device attached to her trache, but she can't tolerate it for too long. She has tremors which makes it difficult for her to write. They think that may be from the medicine she receives for her disease, we hope to find out more about that this week.
Wednesday, December 27th, 2006:
Rochelle has completed another milestone. She walked yesterday with assistance. The doctor thinks the tremors that she has are from the fact that she was in such serious condition, and feels that over time they will subside and not be a permanent thing.
Saturday, December 30th, 2006:
Rochelle has been off the ventilator completely for a few days. They removed the feeding tube last night after seeing that she was able to swallow ok. She is now eating and drinking and they told us her trache may be coming out soon.
Wednesday, January 3rd, 2007:
Rochelle is doing real good and may be coming home soon. We're hoping to have a welcoming home party when that happens. They changed the trache to a smaller one that has a plug, and she is now able to talk. They are planning on taking the trache out completely on Thursday. PT has determined that she has some difficulty with stairs, but her walking has improved.
Friday, January 5th, 2007:
They removed the trache last night. She is ready to come home, as soon as they can find a place for her to go to get the dialysis. There may be an opening at the one in Batavia soon, but in the meantime they have to find some other place. She also needs to have surgery to move the connection for dialysis from her shoulder to her arm.
Sunday, January 7th, 2007:
Rochelle can receive passes to leave the hospital for periods of time, so she has one for today, and she will be coming home for a while. She will start by going to church and from there she will go to her place of work, Terry Hills. They have promised to save her job for her and have been very supportive. From there she is off to visit friends.
Wednesday, January 10th, 2007:
Rochelle has had a little set-back. She was scheduled to leave the hospital on a pass yesterday, but her white blood cell count was down. She has to stay on the unit until that comes back up. She had a good day on Sunday when she was allowed to leave the hospital on a pass. She was moved to a different room on the same unit, and she liked the fact that she was able to take a bubble bath, because her new room has a bathtub in the bathroom.
Friday, January 12th, 2007:
Rochelle's blood count is coming back up, the drop was because of one of her medications that was discontinued. They have an opening at the dialysis in Batavia. She will be starting there January 19th, and the day she is to be released from the hospital is January 18th.
Wednesday, January 17th, 2007:
She is coming home today! We will be having a welcoming home party on Saturday the 20th at 2:00 PM at 1 Colorado Ave. Batavia NY and you're all invited. She has lost some weight. She was a size 12 and is now a size 5, so the clothes that she used to wear no longer fit her. We have received donations from several people that have helped us to restock her wardrobe, and we're grateful for that. I can't begin to tell all of you how much I appreciate all of your prayers, for that has been what has made the difference.
Sunday, January 28th, 2007:
Although she is home now, there are still issues. We had some struggles at first, trying to sort out all her medications, and getting her to take them without vomiting them up, but we think we have a handle on it now. She develpoed a head cold this week, and we closely monitored the situation, to make sure it didn't develope into something else. Yesterday we took her to the emergency room at Strong Memorial Hospital to get a blood test and a shot, because her white blood count was down.
Wednesday, January 31st, 2007:
Rochelle went back to the hospital, and stayed in the emergency room overnight. They said that she would probaby be in the hospital for 2 - 3 days, while they try to get her white blood count back up. Her head cold has gotten worse, it may be developing into broncitis. She also has several cold sores in her mouth that makes it difficult for her to eat.
Sunday, February 4th, 2007:
Rochelle's white blood count is coming back up and her cold is getting better. Her lungs have remained clear during her hospital stay. She is on the 5th floor, in the 1400 unit, and may be able to return home soon.
Tuesday, February 6th, 2007:
Rochelle came back home from the hospital last night and is doing OK so far.
Thursday, February 8th 2007:
Rochelle was running a high temp of 101.9 yesterday morning, so I took her to Strong Emergency. Chest x-rays showed that her lungs were clear and her white blood count was down a little, but not enough to be concerned. I got her to dialysis about an hour late, so they could only do about 2 3/4 hrs. on the machine. They were concerned that her heart rate was around 140 and that she had a lot of fluid on her. Her heart rate came down some after dialysis, and she will be going back this morning to get another 3 hrs. on the machine, and that should help some more.
Saturday, February 24th, 2007:
Rochelle still has some problems, but for the most part things have been remaining stable. She is scheduled to have surgery on March 19th. This surgery is to install a fistula in her arm for the dialysis. This will be better for her than the catheter that she now has on her shoulder.
Our daughter Rochelle contracted this disease in the fall of 2006. The doctor's said it was the worst case that they had seen. I started a support group, in hopes that I can help others who are going through this disease. Many people held her up in prayer, but her life came to an end 3/26 of 2010. We will miss her dearly.
Some of you know that I play guitar, sing, and compose songs. During the problems that we had with Rochelle, I felt led to write a song. As I was thinking about the things that happened, I recalled that we were not alone and what other people were going through. So the song took on an all-inclusive wording. I have the song copyrighted and now have a recording available on a CD titled: Shelter Of The Cross. The words of the song are below. To hear the song, go to MySpace. To purchase a CD online go here
THE SHELTER OF THE CROSS
words and music by Keith A. Burroughs
I make my way into the room, wondering what will be the news
As the doctors gather 'round this strug'ling life,
It grips my soul, and cuts through like a knife.
Don't know how much that I can stand, reaching out, I touch the hand.
Through my tears, I cry out to the Lord above,
Just knowing You will grace me with Your love.
So take my heart into your hands, help me Lord to understand.
It grieves me now, but still somehow, I'll reach the Promised Land
There's so much I need to know, and I know that You will show.
I'll trust Your way, as I make my stay, in the shelter of the cross!
Seems that time is standing still, I make my way up another hill,
Streams of light break forth and filter through the trees,
I reach the crest, and fall down on my knees.
You took my heart into Your hands, and You helped me understand.
The grief I felt, would all soon melt, as I reached the Promised Land.
There's still so much I need to know, and I know that You will show.
I'll trust Your way, as I make my stay, in the shelter of the cross.
I'll trust Your way, as I make my stay, in the shelter of the cross.
11/12/1985 - 3/26/2010