Click on the page to see it larger. Blessings to you.
Monday, December 31, 2012
Monday, December 24, 2012
Saturday, December 15, 2012
Preparations
Most of our preparations this Christmas fall into one category - health. Everyone is taking a turn being sick and we are striving to be healthy for Christmas. I don't want anyone to miss out on getting to visit with family and friends.
Mike is home from the hospital. He will do another week of IVs from home. He is glad to have some freedom to come and go around the IV treatments. He looks so much better than just a couple weeks ago. Part of this is due to the weight he has gained.
Richie is sick now - running a temp close to 104. He missed his basketball game today. His team won. Two other boys on the team were also sick. I guess it is good that there are over 12 players. We pray they are all better soon.
David has a cold but he is hanging in there. Still all smiles and goofy. That boy. He will have some homework to do tomorrow. Both boys missed their Christmas Service practice this morning.
Dad is starting to feel better too. It's hard to shake this completely. The cough just wants to hang on. In the meantime, we are still in the half decorated mode with tubs all over the living room and dinning room. Building those memories. The tubs are green and red. Maybe I'll just call them the decorations for this year . . . hmmmm.
Grandma Nettie made us some delicious cookies. The boys are enjoying frosting and eating them. Thank you Grandma Nettie!!
Even though our tree is undecorated and the house needs some serious cleaning our hearts are being prepared for Christmas. I love to listen to David sing songs from his up-coming Christmas Eve service. Everyday the boys memorize scripture and hymns as they prepare for the Christ Child. And folks, that's all that really matters. The rest is icing on the cake.
Blessings to you as you prepare for the Holidays!
A picture of Grandma cutting her Thanksgiving pies.
This is a picture of Richard holding his first three paychecks of his life. He was paid for helping during the Soccer state tournament as ball boy. He was very happy.
Mike is home from the hospital. He will do another week of IVs from home. He is glad to have some freedom to come and go around the IV treatments. He looks so much better than just a couple weeks ago. Part of this is due to the weight he has gained.
Richie is sick now - running a temp close to 104. He missed his basketball game today. His team won. Two other boys on the team were also sick. I guess it is good that there are over 12 players. We pray they are all better soon.
David has a cold but he is hanging in there. Still all smiles and goofy. That boy. He will have some homework to do tomorrow. Both boys missed their Christmas Service practice this morning.
Dad is starting to feel better too. It's hard to shake this completely. The cough just wants to hang on. In the meantime, we are still in the half decorated mode with tubs all over the living room and dinning room. Building those memories. The tubs are green and red. Maybe I'll just call them the decorations for this year . . . hmmmm.
Grandma Nettie made us some delicious cookies. The boys are enjoying frosting and eating them. Thank you Grandma Nettie!!
Even though our tree is undecorated and the house needs some serious cleaning our hearts are being prepared for Christmas. I love to listen to David sing songs from his up-coming Christmas Eve service. Everyday the boys memorize scripture and hymns as they prepare for the Christ Child. And folks, that's all that really matters. The rest is icing on the cake.
Blessings to you as you prepare for the Holidays!
This is a picture of Richard holding his first three paychecks of his life. He was paid for helping during the Soccer state tournament as ball boy. He was very happy.
Saturday, December 8, 2012
Right Now . . .
Right now my little David is sitting in the living room with a bowl of chips in his lap for his bedtime snack. He is bored and watching TV. He has been a good sport trying to stay out of trouble the last three days and entertain himself.
Right now Richie is upstairs having some me time with his friend Joe (without little brother). They are playing a game on Richard's new TV. Richie had a basketball game today. He got to start once again, which is pretty amazing being that he is only a seventh grader on the A team. He has worked very hard to earn that honor. They won their game.
Right now Paul is up in bed fighting a fever he has had for the past two days.
Right now Mike is in the hospital. He has been there since I dropped him off on Tuesday. Lungs at 34%. We are thankful they weren't lower. He is already feeling so much better.
Right now Katie and Brian are spending last moments, last memories with Brian's grandma as she gets ready to depart this life.
Right now I am sitting at my computer blogging. Fighting the urge to run over and grab David and hug and kiss him to pieces. I promised him as soon as I get better we will make up some serious snuggle time. It is hard to try to stay away from him, to not touch him or cook for him but I soooo don't want him to get this nasty virus Paul and I have.
Right now I feel pretty inadequate as a wife, a mother, a sister-in-law and a friend. I know others understand. Our prayers are with all our loved ones always.
This was taken at Gretchen's house the Saturday after Thanksgiving. Not often all the Thiesfeldt's get together.
My little monsters. Love these guys.
Blessings to you!
Right now Richie is upstairs having some me time with his friend Joe (without little brother). They are playing a game on Richard's new TV. Richie had a basketball game today. He got to start once again, which is pretty amazing being that he is only a seventh grader on the A team. He has worked very hard to earn that honor. They won their game.
Right now Paul is up in bed fighting a fever he has had for the past two days.
Right now Mike is in the hospital. He has been there since I dropped him off on Tuesday. Lungs at 34%. We are thankful they weren't lower. He is already feeling so much better.
Right now Katie and Brian are spending last moments, last memories with Brian's grandma as she gets ready to depart this life.
Right now I am sitting at my computer blogging. Fighting the urge to run over and grab David and hug and kiss him to pieces. I promised him as soon as I get better we will make up some serious snuggle time. It is hard to try to stay away from him, to not touch him or cook for him but I soooo don't want him to get this nasty virus Paul and I have.
Right now I feel pretty inadequate as a wife, a mother, a sister-in-law and a friend. I know others understand. Our prayers are with all our loved ones always.
This was taken at Gretchen's house the Saturday after Thanksgiving. Not often all the Thiesfeldt's get together.
My little monsters. Love these guys.
Blessings to you!
Saturday, June 16, 2012
Sunday, April 15, 2012
There's a chair in the shower. . .
and O2 for power,
and rails that will help you hang oooonnnn.
One of the verses from Mike's CF song. If you haven't heard it go here. Yes, it was a funny spin on CF but it came from real life experience. Mike was able to take a shower today. He said it was hard. He went off his oxygen and had to sit on the chair in the shower and rest.....soap in hair, sit and rest, rinse hair....rest. He said it is painful. His muscles ache from the lack of oxygen and being in bed. They will reassess him tomorrow to see if he can handle room air yet.
He doesn't know yet if his stay will be extended. Sometimes an extra few days on IVs can improve things and sometimes it doesn't really make a difference. Time will tell.
Mike is still having trouble talking on the phone for very long. He has to take his oxygen off to answer calls so this isn't a good idea. It makes him winded and cough more. He should be up for company late this week but we will keep you posted.
Here are a couple of pics I took on Friday.
This is the donate life mascot.
He (or she) was down in the cafeteria on Friday. Too cute! And please, do consider being a donor.
And these are some friends of Mike that came Friday. They didn't stay very long and they took the precautions and gowned up. Thank you!!
Thank you all for your continued prayers and support. Love, love, love.
Blessings to you!
and rails that will help you hang oooonnnn.
One of the verses from Mike's CF song. If you haven't heard it go here. Yes, it was a funny spin on CF but it came from real life experience. Mike was able to take a shower today. He said it was hard. He went off his oxygen and had to sit on the chair in the shower and rest.....soap in hair, sit and rest, rinse hair....rest. He said it is painful. His muscles ache from the lack of oxygen and being in bed. They will reassess him tomorrow to see if he can handle room air yet.
He doesn't know yet if his stay will be extended. Sometimes an extra few days on IVs can improve things and sometimes it doesn't really make a difference. Time will tell.
Mike is still having trouble talking on the phone for very long. He has to take his oxygen off to answer calls so this isn't a good idea. It makes him winded and cough more. He should be up for company late this week but we will keep you posted.
Here are a couple of pics I took on Friday.
He (or she) was down in the cafeteria on Friday. Too cute! And please, do consider being a donor.
And these are some friends of Mike that came Friday. They didn't stay very long and they took the precautions and gowned up. Thank you!!
Blessings to you!
Friday, April 13, 2012
4-13-2012 Update 2
Mike did PFTs this afternoon. FEV1 is 28% and FEF 25-75 is at 8%. It will take him a bit to recover from this but he is starting to be more awake and get crabby. Good signs! All tests are back. This is not life threatening. It may take him a while to get back to his baseline. We'll continue to pray he gets back up as high as he was before this infection.
Mike is in room D6/518 if you would like to send him a greeting or card. Thanks again for your support and prayers. I'll most likely be heading home tonight. Gotta get this guy to eat first. His favorite nurse Erin is here tonight so he will be in good hands.
Blessings to you.
Mike is in room D6/518 if you would like to send him a greeting or card. Thanks again for your support and prayers. I'll most likely be heading home tonight. Gotta get this guy to eat first. His favorite nurse Erin is here tonight so he will be in good hands.
Blessings to you.
Update - 4-13-2012
Mike is not sleeping well. He coughs almost constantly at night. His state of consciousness is about the same and he isn't taking many calls. We appreciate your thoughts and prayers.
They have not decreased his oxygen. His lips started to turn blue when he went off for a little bit (I went down to the cafeteria to get him something and came back and he had it off) the Doc walked in and saw his lips were turning blue and put his oxygen back on and told him (and the nurses) DO NOT TAKE IT OFF!
The good news is his port is working. They are giving him some potassium today because that was low also. They are hitting him with three antibiotics as his white blood count is elevated. No signs of pneumonia, just plugging on the x-ray.
Mike is in pain and dosing on and off. We spoke with the Doc and she said he waited too long to come in this time. She said another day and he would have been taken to ICU. Lesson learned. There is no perfect scenario with CF - no routine. Things moved very quickly this time. We will keep you posted. That's all for now.
Blessings to you.
They have not decreased his oxygen. His lips started to turn blue when he went off for a little bit (I went down to the cafeteria to get him something and came back and he had it off) the Doc walked in and saw his lips were turning blue and put his oxygen back on and told him (and the nurses) DO NOT TAKE IT OFF!
The good news is his port is working. They are giving him some potassium today because that was low also. They are hitting him with three antibiotics as his white blood count is elevated. No signs of pneumonia, just plugging on the x-ray.
Mike is in pain and dosing on and off. We spoke with the Doc and she said he waited too long to come in this time. She said another day and he would have been taken to ICU. Lesson learned. There is no perfect scenario with CF - no routine. Things moved very quickly this time. We will keep you posted. That's all for now.
Blessings to you.
Thursday, April 12, 2012
Highs and Lows
One thing is for sure. When you have reached the bottom of the valley the peaks look so high and from the top of the peak the valley looks so deep - it is scary to look down.....
It has been a long time since we have posted. We have seen some peaks and right now Mike is in a valley.
Just a few weeks ago we were celebrating one of the peaks. Mike's PFTs were higher than they have been for a long time - 56%! He gained weight and was at 138 lbs. Mike was out dancing with Julie again. His doctor put him on a drug to help his appetite and he was working really hard at gaining weight. Ensure plus has been a blessing.
Mike did a fund raiser two weeks ago. He wore a tux and looked so sharp. He wasn't feeling the best but he did a great job. He even made the newspaper. Last Saturday he told me his chest hurt pretty badly. He rested some during the day and then went with Julie to see a passion play at a local church. Easter Sunday he was pretty wiped out. He didn't make it to the Easter celebration with the Van Deurzen's. He started using his oxygen pretty much non stop.
By Tuesday he was coughing a lot and not sleeping much at all. I thought he should go to the hospital but he didn't want to go because his cell phone was broken. I took him to Sprint to get his cell phone fixed after work. I asked if he wanted me to take him in on Wed and he said no Aunt Cathy was taking him on Thursday. It was Grandma Van Deurzen's birthday on Wed and he didn't want to go in.
Cathy picked him up at the house and carried his bag and guitar. She had to get a wheel chair for him. When Cathy got him to Clinic today he was desatting. His O2 level was at 74% when he got here. He kept falling asleep and couldn't put sentences together. He has lost weight and weighs 122 lbs. He was barely coherrent. His breathing was shallow and labored. His respirations were 34-36 per minute and his heart rate was up. Like Cathy said that is like running a marathon. They did a blood gas and his CO2 was at 57 -- 35 is normal. The doctor (his favorite - Brooke is back from maternity leave) put him in a wheel chair and brought him up to the floor.
At the time of this writing he is on 5.5 liters of oxygen (was at 6) and his oxygen level is holding above 95%. He talked to his dad a little while ago and seemed more oriented. The nurse was just in and said he looks better to her too. They were going to hang some magnesium because that level was really low but his port isn't working. Cathy said it took two tries to get it going when they first got here. They were able to get one round of antibiotics in before it quit. We are waiting for pharmacy to send up the drano flush to see if that helps.
Right now he seems stable. Not a ton better but at least not getting worse. I will keep you all posted. Thank you Aunt Cathy for bringing him down and for totally understanding Mike. Not many people "get" him but she does and that is a comfort for Mike.
Blessings to you.
It has been a long time since we have posted. We have seen some peaks and right now Mike is in a valley.
Just a few weeks ago we were celebrating one of the peaks. Mike's PFTs were higher than they have been for a long time - 56%! He gained weight and was at 138 lbs. Mike was out dancing with Julie again. His doctor put him on a drug to help his appetite and he was working really hard at gaining weight. Ensure plus has been a blessing.
Mike did a fund raiser two weeks ago. He wore a tux and looked so sharp. He wasn't feeling the best but he did a great job. He even made the newspaper. Last Saturday he told me his chest hurt pretty badly. He rested some during the day and then went with Julie to see a passion play at a local church. Easter Sunday he was pretty wiped out. He didn't make it to the Easter celebration with the Van Deurzen's. He started using his oxygen pretty much non stop.
By Tuesday he was coughing a lot and not sleeping much at all. I thought he should go to the hospital but he didn't want to go because his cell phone was broken. I took him to Sprint to get his cell phone fixed after work. I asked if he wanted me to take him in on Wed and he said no Aunt Cathy was taking him on Thursday. It was Grandma Van Deurzen's birthday on Wed and he didn't want to go in.
Cathy picked him up at the house and carried his bag and guitar. She had to get a wheel chair for him. When Cathy got him to Clinic today he was desatting. His O2 level was at 74% when he got here. He kept falling asleep and couldn't put sentences together. He has lost weight and weighs 122 lbs. He was barely coherrent. His breathing was shallow and labored. His respirations were 34-36 per minute and his heart rate was up. Like Cathy said that is like running a marathon. They did a blood gas and his CO2 was at 57 -- 35 is normal. The doctor (his favorite - Brooke is back from maternity leave) put him in a wheel chair and brought him up to the floor.
At the time of this writing he is on 5.5 liters of oxygen (was at 6) and his oxygen level is holding above 95%. He talked to his dad a little while ago and seemed more oriented. The nurse was just in and said he looks better to her too. They were going to hang some magnesium because that level was really low but his port isn't working. Cathy said it took two tries to get it going when they first got here. They were able to get one round of antibiotics in before it quit. We are waiting for pharmacy to send up the drano flush to see if that helps.
Right now he seems stable. Not a ton better but at least not getting worse. I will keep you all posted. Thank you Aunt Cathy for bringing him down and for totally understanding Mike. Not many people "get" him but she does and that is a comfort for Mike.
Blessings to you.
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