I picked Alan up from the hospital today. He is doing well but sore. He is not at all happy about staying behind while Cheyenne and I drive to St. Louis in a couple of hours. I really have no choice. His doctor said he cant go and Chey's doctor said I cant postpone her surgery.
I will update after we return in a day or so.
Showing posts with label St. Louis. Show all posts
Showing posts with label St. Louis. Show all posts
Tuesday, April 6, 2010
Thursday, January 7, 2010
The other shoe dropped....HARD!!
We got home last night (Tuesday). I thought I would just wait to update until after we went to Chey's local CF doctor today.
Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.
Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.
Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.
One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.
Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.
Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.
Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.
One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.
Tuesday, January 5, 2010
Long story short....
Chey did great...didnt get admitted...the bronchus was narrowed down quite a bit so he opened it back up. He said there is another problem and is not sure which of the two is causing the other.
It would be major, major surgery to correct this new found problem so right now, we are doing nothing but waiting.
We are now home from St. Louis. Cheyenne has an appointment with her CF doctor tomorrow. Hopefully, he will say she can stop the IV's and return to school. It has been one month already.
It would be major, major surgery to correct this new found problem so right now, we are doing nothing but waiting.
We are now home from St. Louis. Cheyenne has an appointment with her CF doctor tomorrow. Hopefully, he will say she can stop the IV's and return to school. It has been one month already.
Friday, January 1, 2010
Happy New Year!!
I hope everyone had a great time while staying safe! We went over to our pastor's house for food, fun and fellowship. It was a great time..Julie, I finally played Bunco!! I got the biggest looser award..Yea me!
Chey is still on her IV's, doing pretty good. Still has a very wet sounding cough but only occasionally. I am getting pretty good at all the IV stuff and remembering to monitor her blood pressure.
I had previously said they had done a bunch of tests while we were in the hospital and all the results were coming back normal or close to it. Well, that stopped with the echo.
The echo showed she has Mild Aortic Stenosis and Left Ventricular Hypertrophy. Hence the reason for the blood pressure problems. He said, while he is not dismissing this as a mild problem, we have bigger problems right now and that is the loss of lung function. He is pretty sure the cause is the Left Main Bronchial Stenosis.
We are gearing up to leave on Sunday for St. Louis..Chey has to be at Children's on Monday morning at 5:45 AM. I have been on the phone with same day surgery and the surgeons office for the last few days trying to get things straightened out. Same day surgery thinks she is too sick to have surgery..surgeons office said not to worry about what they said...she is so sick because she needs the surgery. The doctors associate also said we may be at a point in treatment that we need to start seeing the CF team in St. Louis. I am not so sure I like that idea for several reasons. 1) We would be saying our local doc is not good enough to care for her. 2) she is so far progressed that local doc cant care for her. 3) we are back to being close enough for them to use the T word.
We also discussed the fact that the every 3 months thing is not working and they may need to do something different as far as opening the bronchus. She did also say, the main doctor may still want to do the dilitation and just do it every two months. Which would work a little easier for us since her local CF doc wants her to start going into the hospital every three months for a tuneup. He said if she is not sick, it would be for 2 weeks, if she is..it would be for 3 weeks.
I really dont know how people cope with chronic illness and such if they dont know the Lord. Sometimes it seems too hard with Him. We have to trust in Him....and we do!!!
I appreciate your prayers and kind words..I will update on Monday after Cheys surgery.
Love and hugs,
Debbie
Chey is still on her IV's, doing pretty good. Still has a very wet sounding cough but only occasionally. I am getting pretty good at all the IV stuff and remembering to monitor her blood pressure.
I had previously said they had done a bunch of tests while we were in the hospital and all the results were coming back normal or close to it. Well, that stopped with the echo.
The echo showed she has Mild Aortic Stenosis and Left Ventricular Hypertrophy. Hence the reason for the blood pressure problems. He said, while he is not dismissing this as a mild problem, we have bigger problems right now and that is the loss of lung function. He is pretty sure the cause is the Left Main Bronchial Stenosis.
We are gearing up to leave on Sunday for St. Louis..Chey has to be at Children's on Monday morning at 5:45 AM. I have been on the phone with same day surgery and the surgeons office for the last few days trying to get things straightened out. Same day surgery thinks she is too sick to have surgery..surgeons office said not to worry about what they said...she is so sick because she needs the surgery. The doctors associate also said we may be at a point in treatment that we need to start seeing the CF team in St. Louis. I am not so sure I like that idea for several reasons. 1) We would be saying our local doc is not good enough to care for her. 2) she is so far progressed that local doc cant care for her. 3) we are back to being close enough for them to use the T word.
We also discussed the fact that the every 3 months thing is not working and they may need to do something different as far as opening the bronchus. She did also say, the main doctor may still want to do the dilitation and just do it every two months. Which would work a little easier for us since her local CF doc wants her to start going into the hospital every three months for a tuneup. He said if she is not sick, it would be for 2 weeks, if she is..it would be for 3 weeks.
I really dont know how people cope with chronic illness and such if they dont know the Lord. Sometimes it seems too hard with Him. We have to trust in Him....and we do!!!
I appreciate your prayers and kind words..I will update on Monday after Cheys surgery.
Love and hugs,
Debbie
Sunday, December 20, 2009
Getting Paroled
We have been here for two weeks (today). Things have definately improved and she is supposed to get to go home on Tuesday, providing we get good results on the echo. The tests on her kidneys, came back good except for high protein in her urine. He is not overly concerned right now and will check it again in three months, when she is not sick.
Chey is still having problems with her blood pressure so we will have to monitor it at home. He wants me to use a monitor that has a print out or records the readings. So I will have to find one that I can afford and get it before we go home. She will continue her blood pressure medicine, also.
He added a new medicine for her CFRA (Cystic Fibrosis Related Arthritis). So far, it is not helping too much...but we will see.
She will also go home on two I.V. meds and will stay on them until we return from St. Louis. She has an appointment on the 4th.
Chey is still having problems with her blood pressure so we will have to monitor it at home. He wants me to use a monitor that has a print out or records the readings. So I will have to find one that I can afford and get it before we go home. She will continue her blood pressure medicine, also.
He added a new medicine for her CFRA (Cystic Fibrosis Related Arthritis). So far, it is not helping too much...but we will see.
She will also go home on two I.V. meds and will stay on them until we return from St. Louis. She has an appointment on the 4th.
Saturday, October 3, 2009
Birthday and stuff
Cheyenne's birthday went great. Everyone had a fun time. Ciara sang "Jesus take the wheel" at church on Missionette Sunday. She did fantastic and received a standing ovation. There was not a dry eye in the sanctuary...not even the men!! Of course, I didn't get it video taped because I was doing the service that morning and didn't think I could tape it...I have got to get a tripod!!
Cheyenne was Baptised on Sept. 27Th. We are very proud of her.
Cheyenne had her 3 mo. visit with the endocrinologist on Tuesday. The injections she has been getting every 28 days for the last year, has not been working. The doctor is not comfortable with raising the dosage from 11.25 to 15 on a 9 yo, so she will be getting this shot every 21 days for the next three months and then he will see if it is starting to work, if not, she will have to be raised to the 15 anyway.
Ciara does have to have surgery on her hand/wrist. We go back on Wednesday to meet with the surgeon to see what he has to do and when he wants to do it...I just hope it doesn't interfere with Chey's Make a Wish trip...lol..but at the same time, I don't want Ciara in pain either...what is a mother to do?
We are still on track for St. Louis. We will leave on the 8Th as planned and not sure when we will return home.
Much love to all,
Debbie
Cheyenne was Baptised on Sept. 27Th. We are very proud of her.
Cheyenne had her 3 mo. visit with the endocrinologist on Tuesday. The injections she has been getting every 28 days for the last year, has not been working. The doctor is not comfortable with raising the dosage from 11.25 to 15 on a 9 yo, so she will be getting this shot every 21 days for the next three months and then he will see if it is starting to work, if not, she will have to be raised to the 15 anyway.
Ciara does have to have surgery on her hand/wrist. We go back on Wednesday to meet with the surgeon to see what he has to do and when he wants to do it...I just hope it doesn't interfere with Chey's Make a Wish trip...lol..but at the same time, I don't want Ciara in pain either...what is a mother to do?
We are still on track for St. Louis. We will leave on the 8Th as planned and not sure when we will return home.
Much love to all,
Debbie
Saturday, September 5, 2009
Turning 9
Cheyenne's birthday is two weeks away...I cant believe we have had her for almost 9 years. I need to get busy on the party planning!!
Cheyenne is coughing more and is showing signs of not feeling well. I will not say she is getting sick!!!
I finally made the appointment for her 2nd trip to St. Louis Childrens, to repeat the surgery she had July 1st, on her left main bronchus. It is for Oct. 9th...of course we have nothing arranged, nor do I know how it will work out this time.
Make a Wish has contacted me...her will is granted and is tentatively scheduled for November 1-7. I am really excited about..terrified she will be sick, but excited all the same.
In my last post, I asked for prayer for Xoey. When she went to the pediatrician a couple of weeks ago for routine shots, she noticed something with her heart that didnt sound right. She sent her for an EKG. The results show a whole in her heart. They are not sure right now what needs to be done. Please continue to pray for her.
Thanks for reading...please leave a comment so I know were here!!!
Cheyenne is coughing more and is showing signs of not feeling well. I will not say she is getting sick!!!
I finally made the appointment for her 2nd trip to St. Louis Childrens, to repeat the surgery she had July 1st, on her left main bronchus. It is for Oct. 9th...of course we have nothing arranged, nor do I know how it will work out this time.
Make a Wish has contacted me...her will is granted and is tentatively scheduled for November 1-7. I am really excited about..terrified she will be sick, but excited all the same.
In my last post, I asked for prayer for Xoey. When she went to the pediatrician a couple of weeks ago for routine shots, she noticed something with her heart that didnt sound right. She sent her for an EKG. The results show a whole in her heart. They are not sure right now what needs to be done. Please continue to pray for her.
Thanks for reading...please leave a comment so I know were here!!!
Thursday, August 27, 2009
Time Flies
Cheyenne and I did go to church camp..Ciara was able to go with us...I bet Satan wasnt happy about that. Ciara was chosen as Camper of the Year and gets free tuition for next year. Cheyenne had an awesome time.
We went for Cheyenne's monthly CF clinic visit on the 10th. She gained two kilos, PFT's went up 20% and he said she sounded beautiful. He also said she had a remarkable improvement and we dont have to see him until September. We have never been able to go two months between appointments and usually dont make it one month without some sort of contact with him or his office. We do still have to go back to St. Louis Children's the end of September for another surgery on her left main bronchus. The two week followup with her CF doc will coincide with her October clinic visit.
I am pleased to announce the birth of my newest nephew, Greyson Quinn...born 8/21/09. Both mom and baby are doing well. Big brother, Nathan, is very pleased too.Of course school has started and is going great.
Please be in prayer for my granddaugher, Xoey. I will update more about that later.
Wednesday, June 24, 2009
Five more days
Until we leave for St. Louis. We are all nervous about it, but trusting in the Lord. We know He will take care of Cheyenne. It is the finances of the trip that we are having a hard time with..lol. We dont really know what will take place once we get there. We meet with the surgeon on the 30th and then surgery on the 1st. We wont know till we get there if we have a room at RMH. Wont know till Sunday, for sure, if we have a pilot that can take us...lol..no wonder I cant sleep..lol. Just wanted to update on everything...okay, only on some things.
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