The day has finally arrived!! John's surgery is today. He's been waiting for 6 months to have his shoulder fixed (rotator and labral tear). We're nervous about the recovery and what it's going to take to get it done but at the same time we're thankful he will feel better and not be in pain anymore. He (translate that to WE) hasn't slept well in almost a year due to the pain.
So please be praying for an uncomplicated surgery and a quick recovery!
Thank you...
Friday, March 5, 2010
Saturday, February 27, 2010
Update... UF Visit This Week
We had our monthly visit to UF this week. Here's the recap...
Good news: He added another lap to his 6 minute walk! His docs want him to start slowly pushing himself to see what his body does. His heart rate jumped and he was tired but it was good to see him do a little more!! Also, his O2 sats were great for the second time in a row. He feels good, looks good and will be having a heart cath next month to verify his pressures and see what is happening in there definitively .
Bad news: He lost a pound. I know it's not much but it is for him. He also was given quite the "lecture" from his doctors about not being compliant with his meds.
I finally had to spell it all out with them. Mostly my frustration with him not being honest with me about taking his medicine/CPAP. I've been finding out over the last few weeks (either by checking his dose counter or counting pills, or speaking at length with the pharmaceutical company) that he isn't being honest with me and is not either taking ALL the doses he needs and/or not wearing his CPAP. I know it's a lot for him to remember and it is a lot for him overall but he needs to understand how important EACH medicine/treatment is for him.
I told his doctor that I didn't think he realized how serious his disease is for him. It is hard at times to think he's even sick. He looks fine, acts fine, and to him... feels fine. SO... she got out a copy of the heart and drew on it, made notes on it and went over everything for him, again, to make sure he knew it. I think now that we've been hearing all the terminology for over a year, it made more sense to him. He was not happy to hear it all and said it scared him when I asked how he was feeling. I said good.
Not to be mean, but I want it to scare him. I need it to scare him. I want him to be 100% willing to do whatever it will take to keep him alive for a long time.
He really does hate the CPAP so we are waiting to hear from the respiratory therapist to see about switching out masks. I really was hoping the doctors would tell him that part wasn't so necessary and they would let him drop it but they didn't. Not even a little.
One thing I've been thinking about and wanted to make sure I brought up with his doctors this visit is that Josh has never felt sick. He had some wheezing and such but overall has never really FELT this disease. So I wanted to know what they thought about stopping all treatment until he feels sick. To let him feel what this is going to do to him. Maybe then he would be more compliant with the meds. OF COURSE, this is NOT something I want to do but have just been wondering if it would help and wanted the doctors input.
They gave me thier input alright. They told us that if we stopped all treatment, Joshua would have 2-5 years to live. That was hard to hear again but now we know... it's a no brainer isn't it?
So... I am hoping and praying that with this new "enlightenment" for Josh, that he will get on board and take his meds and do everything he needs to do. Pray for him to be diligent and willing to do whatever it takes.
It's such a fine, muddied line when I try to figure out how much Joshua is capable of doing himself and how much is he just being lazy/not caring? How much can I expect from him? Is this as good as he can get? Do I need to just hand him his meds and watch him take each dose?
So... I spent some time speaking with our social worker Mary (every patient with a terminal illness has a social worker assigned to them). She is so wonderful, very helpful and extremely knowledgeable. She is requesting we get some neuro psych testing done for Joshua so we know what he is and is not capable of doing himself, how he learns, and how he processes things. We will be doing this very soon. Hopefully this will help me also know how much I need to do for him vs. how much he can do for himself, and basically how much to expect from him.
Another psych evaluation we are doing is for Voc Rehab. I set up a meeting with them once I found out that if you have a disability, they will help cover part of your college tuition. So please be praying they will want to cover most of his tuition next year!!! As far as I know, the testing they are doing is different than the testing UF will do.
That is most of our visit this week. It was a lot of info but a very informative and much needed visit.
We go back next month for the heart cath. We will find out our date hopefully next week.
Until then, please pray for Joshua to stay the course and keep on keepin' on!
Blessings~~~~
Michelle
Good news: He added another lap to his 6 minute walk! His docs want him to start slowly pushing himself to see what his body does. His heart rate jumped and he was tired but it was good to see him do a little more!! Also, his O2 sats were great for the second time in a row. He feels good, looks good and will be having a heart cath next month to verify his pressures and see what is happening in there definitively .
Bad news: He lost a pound. I know it's not much but it is for him. He also was given quite the "lecture" from his doctors about not being compliant with his meds.
I finally had to spell it all out with them. Mostly my frustration with him not being honest with me about taking his medicine/CPAP. I've been finding out over the last few weeks (either by checking his dose counter or counting pills, or speaking at length with the pharmaceutical company) that he isn't being honest with me and is not either taking ALL the doses he needs and/or not wearing his CPAP. I know it's a lot for him to remember and it is a lot for him overall but he needs to understand how important EACH medicine/treatment is for him.
I told his doctor that I didn't think he realized how serious his disease is for him. It is hard at times to think he's even sick. He looks fine, acts fine, and to him... feels fine. SO... she got out a copy of the heart and drew on it, made notes on it and went over everything for him, again, to make sure he knew it. I think now that we've been hearing all the terminology for over a year, it made more sense to him. He was not happy to hear it all and said it scared him when I asked how he was feeling. I said good.
Not to be mean, but I want it to scare him. I need it to scare him. I want him to be 100% willing to do whatever it will take to keep him alive for a long time.
He really does hate the CPAP so we are waiting to hear from the respiratory therapist to see about switching out masks. I really was hoping the doctors would tell him that part wasn't so necessary and they would let him drop it but they didn't. Not even a little.
One thing I've been thinking about and wanted to make sure I brought up with his doctors this visit is that Josh has never felt sick. He had some wheezing and such but overall has never really FELT this disease. So I wanted to know what they thought about stopping all treatment until he feels sick. To let him feel what this is going to do to him. Maybe then he would be more compliant with the meds. OF COURSE, this is NOT something I want to do but have just been wondering if it would help and wanted the doctors input.
They gave me thier input alright. They told us that if we stopped all treatment, Joshua would have 2-5 years to live. That was hard to hear again but now we know... it's a no brainer isn't it?
So... I am hoping and praying that with this new "enlightenment" for Josh, that he will get on board and take his meds and do everything he needs to do. Pray for him to be diligent and willing to do whatever it takes.
It's such a fine, muddied line when I try to figure out how much Joshua is capable of doing himself and how much is he just being lazy/not caring? How much can I expect from him? Is this as good as he can get? Do I need to just hand him his meds and watch him take each dose?
So... I spent some time speaking with our social worker Mary (every patient with a terminal illness has a social worker assigned to them). She is so wonderful, very helpful and extremely knowledgeable. She is requesting we get some neuro psych testing done for Joshua so we know what he is and is not capable of doing himself, how he learns, and how he processes things. We will be doing this very soon. Hopefully this will help me also know how much I need to do for him vs. how much he can do for himself, and basically how much to expect from him.
Another psych evaluation we are doing is for Voc Rehab. I set up a meeting with them once I found out that if you have a disability, they will help cover part of your college tuition. So please be praying they will want to cover most of his tuition next year!!! As far as I know, the testing they are doing is different than the testing UF will do.
That is most of our visit this week. It was a lot of info but a very informative and much needed visit.
We go back next month for the heart cath. We will find out our date hopefully next week.
Until then, please pray for Joshua to stay the course and keep on keepin' on!
Blessings~~~~
Michelle
Tuesday, February 16, 2010
2,779
That is how many miles we drove to doctor's appointments last year.
2,779 miles....
That's a LOT!
2,779 miles....
That's a LOT!
Friday, January 22, 2010
Do You Need A Laugh??
This picture makes me laugh every time I see it. I thought I would post this for you... enjoy!
Thursday, January 21, 2010
Bad Tires On Wet Roads????
John sends me a text to check my email. He emailed this to me ... thanks honey! He said he was only going about 10 miles an hour in the turn. He barely went over the lip of the asphalt but the weight of the truck slid him down the grass to the ditch. Lovely.
Thank goodness he wasn't hurt and there isn't one mark on the truck from it. Tow truck came and pulled him out and he went on his merry way... hopefully to the tire shop!
Thankful in FL today!!
Thank goodness he wasn't hurt and there isn't one mark on the truck from it. Tow truck came and pulled him out and he went on his merry way... hopefully to the tire shop!
Thankful in FL today!!
Saturday, January 16, 2010
Finally... some good news from UF!
We had our monthly trip to UF this week. It was the first time in 10 months of monthly visits that we received good news!
The best news is that Joshua's O2 sats were finally normal in both the upper and lower extremities. Usually there is about a 10 point difference and the lower extremities have only been in the upper 80's. We were quite surprised at the upper 90's Thursday!
The other good news is that Joshua gained ONE pound!!! Woo Hoo!!! I told him I could gain 10 pounds in the time it takes him to gain one. (He asked me if I'd like to take that challenge and I quickly said NO!) He is now officially 5'7" and weighs a whopping 113 pounds!!! He still does not have a trigger for hunger (unless it's been 24 hours!) or thirst so I will still be pushing food at him as much as I can. We buy whole milk for him and put butter on anything we can for him. The COMPLETE opposite of how the rest of us should be eating. And before you decide to tell me how bad that is for him, it's what the doctor told us to do. So... we'll go with it for now.
After we left UF he said he wanted something sweet. I told him I'd stop wherever he wanted. On our way home he had four donuts from Krispy Kreme, 2 hot dogs and an ice cream cone. We pass by a little dairy freeze place every month so Josh wanted to try it this trip. It reminded him of Zesto's back home in Jeff City. I couldn't believe how much he ate! I told him I cannot hang out with him if he isn't going to choose REAL food!! I wanted a salad from Applebee's. Maybe next time!
SO... back to the doctors. They were very pleased with the weight gain and the o2 sats so they are giving us a 6 week span between our next visit. At that time, we will be scheduling a second heart cath. This makes me a little nervous but at the same time I am cautiously optimistic. I want to believe the meds are finally working and all is fine but at the same time I think I am in self preservation mode with not wanting to be let down next month.
His doctor also wants him to double the distance he covers during his 6 minute walk. Right now he's at 432 meters. So we'll see how he does. This will be great to see him start being able to challenge himself and start being more active!
Thank you for your prayers. It truly is uplifting for us to know so many of you are praying for our family.
To close, I'll share this picture with you. It's my favorite of the year, maybe.
The best news is that Joshua's O2 sats were finally normal in both the upper and lower extremities. Usually there is about a 10 point difference and the lower extremities have only been in the upper 80's. We were quite surprised at the upper 90's Thursday!
The other good news is that Joshua gained ONE pound!!! Woo Hoo!!! I told him I could gain 10 pounds in the time it takes him to gain one. (He asked me if I'd like to take that challenge and I quickly said NO!) He is now officially 5'7" and weighs a whopping 113 pounds!!! He still does not have a trigger for hunger (unless it's been 24 hours!) or thirst so I will still be pushing food at him as much as I can. We buy whole milk for him and put butter on anything we can for him. The COMPLETE opposite of how the rest of us should be eating. And before you decide to tell me how bad that is for him, it's what the doctor told us to do. So... we'll go with it for now.
After we left UF he said he wanted something sweet. I told him I'd stop wherever he wanted. On our way home he had four donuts from Krispy Kreme, 2 hot dogs and an ice cream cone. We pass by a little dairy freeze place every month so Josh wanted to try it this trip. It reminded him of Zesto's back home in Jeff City. I couldn't believe how much he ate! I told him I cannot hang out with him if he isn't going to choose REAL food!! I wanted a salad from Applebee's. Maybe next time!
SO... back to the doctors. They were very pleased with the weight gain and the o2 sats so they are giving us a 6 week span between our next visit. At that time, we will be scheduling a second heart cath. This makes me a little nervous but at the same time I am cautiously optimistic. I want to believe the meds are finally working and all is fine but at the same time I think I am in self preservation mode with not wanting to be let down next month.
His doctor also wants him to double the distance he covers during his 6 minute walk. Right now he's at 432 meters. So we'll see how he does. This will be great to see him start being able to challenge himself and start being more active!
Thank you for your prayers. It truly is uplifting for us to know so many of you are praying for our family.
To close, I'll share this picture with you. It's my favorite of the year, maybe.
Thursday, January 7, 2010
Recap of 2009
I've been reflecting on the last year, 2009. It was a full year for us, crazy at times, with both good and bad. We can say though that we are blessed beyond measure. We are so thankful for the wonderful friends and family we have.
We are mostly healthy, and still very happy. Our family is still kind to each other and we are well loved by many friends.
This year took quite a turn for us when Joshua was diagnosed with a terminal illness called Eisenmengers Syndrome first in March and then definitively in June by heart cath. It's a combination of Pulmonary Arterial Hypertension, (or PAH, or just PH) and his Patent Ductus Ateriosus, or PDA which is a congenital heart defect. It has been a year full of monthly, if not more, visits to several different doctors as well as hospitals. Our favorite to date would be the hospital on the University of Florida's campus in Gainesville. They have a fantastic PH Clinic and team of doctors/nurses and case workers who have been simply wonderful. I've learned more about the medical field and this disease than I thought my brain could handle.
We're blessed that Joshua is doing and has done as well as he has for so long. I pray he will continue to do well and be able to do the things he wants to do. Right now he is on track to graduate from high school in May. I cannot wait!! After high school he plans to attend college at FSCJ and get his degree in ASL to interpret for the deaf and hard of hearing.
We continue to deal with a LOT with Joshua's medical issues. I've been on the phone most of the morning between doctors and pharmaceutical companies. The nurse is coming today to show us how to start his 5th medicine we are adding to the mix, Tyvaso. It will be taken 4 times a day and is a nebulized inhaled medicine. Should be interesting.
Next week we are also meeting with a medical company who is bringing us the equipment to start his CPAP/BiPAP. He'll wear the mask at night to help him get better oxygen saturation levels while he sleeps.
Hopefully all of this will help his tolerance for exercise and exertion so he can start DOING something and not have to be so sedentary. I'm also hoping it will help him focus more while doing simple tasks as well as school work. He graduates from high school in May... we can't wait! He hopes to attend FSCJ and get his ASL Degree to interpret for the deaf/hard of hearing.
The rest of us are doing well. John had a small stroke in Sept this year. Scared me to death. He is healthy now since he QUIT smoking and is taking medicine to help lower cholesterol. I am very proud of him. Hopefully that will be the last we see of any hospital stays for him! He will be having surgery this spring on his shoulder to repair the two tears, one in the rotator cuff and one in the labrum. I really don't know how he works every day and deals with chronic pain.
Brandon is celebrating one whole year of being out on his own!! Woo hoo!! He's learning what it means to really be an adult! He is still working for Servicemaster/GRG Construction and doing rather well. We are proud of him.
Alex and Micayla are in their 4th year of homeschooling and doing quite well, if I don't say so myself! Alex is looking forward to trying out tackle football this year. Not sure about that for me, but he can't wait. Micayla is playing the piano and got her ears pierced this year. Makes me sad how quickly they are growing up.
I am just happy to have such a great family to call mine. I continue to teach piano and violin and enjoy being with my kids.
I also have been trying for the last three months to set up a working budget. It's hard. We're not great at money managing so now is the time to start learning. It's tough, but we're gonna do it. Pray for lots of patience and peace while getting all of it ironed out!
Lastly, my grandpa, Robert Murasko passed away early morning on Christmas Eve. He has lived here with my sister since October 2008. She's been his most excellent caregiver for the last 4 years. It was rather unexpected but peaceful at the same time. He is now dancing in heaven.
I hope you have a happy and healthy 2010. Most of all, I hope you have someone to love, someone who loves you and you know that above all else, Jesus loves you.
We are mostly healthy, and still very happy. Our family is still kind to each other and we are well loved by many friends.
This year took quite a turn for us when Joshua was diagnosed with a terminal illness called Eisenmengers Syndrome first in March and then definitively in June by heart cath. It's a combination of Pulmonary Arterial Hypertension, (or PAH, or just PH) and his Patent Ductus Ateriosus, or PDA which is a congenital heart defect. It has been a year full of monthly, if not more, visits to several different doctors as well as hospitals. Our favorite to date would be the hospital on the University of Florida's campus in Gainesville. They have a fantastic PH Clinic and team of doctors/nurses and case workers who have been simply wonderful. I've learned more about the medical field and this disease than I thought my brain could handle.
We're blessed that Joshua is doing and has done as well as he has for so long. I pray he will continue to do well and be able to do the things he wants to do. Right now he is on track to graduate from high school in May. I cannot wait!! After high school he plans to attend college at FSCJ and get his degree in ASL to interpret for the deaf and hard of hearing.
We continue to deal with a LOT with Joshua's medical issues. I've been on the phone most of the morning between doctors and pharmaceutical companies. The nurse is coming today to show us how to start his 5th medicine we are adding to the mix, Tyvaso. It will be taken 4 times a day and is a nebulized inhaled medicine. Should be interesting.
Next week we are also meeting with a medical company who is bringing us the equipment to start his CPAP/BiPAP. He'll wear the mask at night to help him get better oxygen saturation levels while he sleeps.
Hopefully all of this will help his tolerance for exercise and exertion so he can start DOING something and not have to be so sedentary. I'm also hoping it will help him focus more while doing simple tasks as well as school work. He graduates from high school in May... we can't wait! He hopes to attend FSCJ and get his ASL Degree to interpret for the deaf/hard of hearing.
The rest of us are doing well. John had a small stroke in Sept this year. Scared me to death. He is healthy now since he QUIT smoking and is taking medicine to help lower cholesterol. I am very proud of him. Hopefully that will be the last we see of any hospital stays for him! He will be having surgery this spring on his shoulder to repair the two tears, one in the rotator cuff and one in the labrum. I really don't know how he works every day and deals with chronic pain.
Brandon is celebrating one whole year of being out on his own!! Woo hoo!! He's learning what it means to really be an adult! He is still working for Servicemaster/GRG Construction and doing rather well. We are proud of him.
Alex and Micayla are in their 4th year of homeschooling and doing quite well, if I don't say so myself! Alex is looking forward to trying out tackle football this year. Not sure about that for me, but he can't wait. Micayla is playing the piano and got her ears pierced this year. Makes me sad how quickly they are growing up.
I am just happy to have such a great family to call mine. I continue to teach piano and violin and enjoy being with my kids.
I also have been trying for the last three months to set up a working budget. It's hard. We're not great at money managing so now is the time to start learning. It's tough, but we're gonna do it. Pray for lots of patience and peace while getting all of it ironed out!
Lastly, my grandpa, Robert Murasko passed away early morning on Christmas Eve. He has lived here with my sister since October 2008. She's been his most excellent caregiver for the last 4 years. It was rather unexpected but peaceful at the same time. He is now dancing in heaven.
I hope you have a happy and healthy 2010. Most of all, I hope you have someone to love, someone who loves you and you know that above all else, Jesus loves you.
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