Well hello!! We are enjoying our summer and taking many opportunities to relax and enjoy life! We hope you're doing the same!!!
I thought it would be time to write about Joshua and where we are with him. I am sorry for not keeping everyone up to date. Sometimes we just like to do life without talking about medical junk everyday!
The first new thing is that he started oxygen therapy this spring. Oxygen is the best vasodilator there is so we're hoping it helps keep things open for him and helps to make him feel better overall. It was strange for me to have the oxygen tanks and concentrator in our house. It seemed to make it more "real" that we have medical needs in our house. Now the sound of the concentrator relaxes me!! In the beginning he was wearing it everyday and night but then he started having his nose bleeds again. :-( The O2 is humidified but it still dries him out. Now he wears a saline gel in his nostrils and that seems to help most of the time.
The next new thing is that his legs have been getting tired while working his job at Publix and his veins have been quite large and bulging. So just this month he has started wearing compression stockings to work to hopefully help with that! The first time he tried to get them on I hear yelling across the house, "MOM!!! Help me!!!" Can I just say it was quite the experience helping to put "stockings" on my son!! Those suckers do not have any give so it was very difficult!! They are not stretchy like pantyhose!! Needless to say, he put a hole in them before I even got there!! Sheesh!! I'm happy to say he can now put those on all by himself!!! Whew! They do make his legs look like prosthetic's though!
The most current news is that he may be having surgery soon. We saw a sleep specialist regarding options for CPAP therapy. Joshua has not been successful with CPAP. He takes it off at night while sleeping, when he would even wear it. Since he is a stomach sleeper and mouth breather, it made it very hard for him to sleep. So... we met with the sleep doctor and she was quite concerned with the structure of his jaw. She said the lower jaw is set too far back which is probably what is causing the obstructing at night. She thinks that when the jaw and muscles and tissues relax when sleeping, they are collapsing his wind pipe. His most recent sleep study had 144 episodes where he stops breathing at night! This is also why he can't stay awake if he's not standing or moving. He stood up thru the entire visit just so he wouldn't fall asleep! My poor boy!! So... she referred us to a maxillofacial surgeon!!
WHEW! Are you still reading???
Well... we met with the surgeon this week and he recommends surgery to correct the jaw placement and braces to align his teeth! I am so thankful we did not follow the recommendation of our old orthodontist who wanted to pull teeth from the upper jaw and match it to the lower jaw!! (See... me being a pain in the butt pays off sometimes!!!) We've always known he has an overbite but I never thought it was more than a cosmetic issue.
We are waiting for the doctors to all talk to each other and then see if his cardiologist says he is able to have surgery at all. We were told last year that he was not a surgical candidate when they wanted to take out the tonsils. He has since told us that he thinks Joshua is stable enough to look into that again. I wonder if it makes a difference that it's jaw surgery and not just tonsils? They would probably do both at the same time. When I asked the surgeon if he's ever done this surgery on a patient with PAH, he said no. Then I asked if he was confident that his anesthesiology team was capable of doing this he said he would be meeting with them to discuss it. I let him know that I need him to wake up afterwards!!! I'm willing to bet that he does too!! :-)
Now... the last news is that in order for Joshua to have this surgery, he will need to gain between 10-20 pounds in the next few months!! I have been pleased that he has maintained his weight (at a whopping 113 pounds) for the last year. However, this surgery has an average weight loss of 15-20 pounds so he cannot afford to lose that without gaining it first!
So.... if you think about us, please pray that upcoming decisions we have to make will be the RIGHT one's, that things will move easily with insurance and information exchanged between doctors, and that we can plump that boy up!!!!! I am pretty sure it's going to be a family affair!!!
Thanks for reading!!!!!! Have a joy-filled day!!!!
Showing posts with label Joshua. Show all posts
Showing posts with label Joshua. Show all posts
Thursday, June 28, 2012
Wednesday, October 20, 2010
Update on UF Visit
After many hours of waiting, we had our appointments with Joshua's cardiologist and pulmonologist. We usually don't have to wait hours like we did this time. We understand it happens but it sure is no fun. Although, we have a great social worker who gave us meal vouchers which paid for lunch at Subway downstairs while we were waiting for the doctors!! Thanks Mary!!
The main topic this visit was compliance. Joshua has to decide whether or not he wants to continue treatment. That may sound shocking to you but it is where we are right now. I/We cannot want it for him. He has to want it for himself! He is frustrated with taking meds and all of it really. There are days when I wonder if he's just given up. The medicine is very, very, very expensive and if he's not going to take it then we don't need to be getting it. Thank God his insurance pays for it but it's still not right to get it and not take it.
We've had some long talks. Basically, I think he has gotten hung up on the word TERMINAL. Sure, I was hung up on it too for a while. That's a tough pill to swallow. But... I've joined several PH support groups and I really honestly feel like he could live well into his 40's or 50's IF HE TAKES HIS MEDICINE. We're all going to die and none of us know when that will happen so we need to live life to the fullest!!
So... we're on a new plan in our house to help Joshua start gaining more independence and forming a plan for himself.
Please pray this goes well and he can see the positives for this medical regimen.
Hope you're all enjoying the lovely fall weather! It's actually cooling down here a little too, finally!!
Love ya!
The main topic this visit was compliance. Joshua has to decide whether or not he wants to continue treatment. That may sound shocking to you but it is where we are right now. I/We cannot want it for him. He has to want it for himself! He is frustrated with taking meds and all of it really. There are days when I wonder if he's just given up. The medicine is very, very, very expensive and if he's not going to take it then we don't need to be getting it. Thank God his insurance pays for it but it's still not right to get it and not take it.
We've had some long talks. Basically, I think he has gotten hung up on the word TERMINAL. Sure, I was hung up on it too for a while. That's a tough pill to swallow. But... I've joined several PH support groups and I really honestly feel like he could live well into his 40's or 50's IF HE TAKES HIS MEDICINE. We're all going to die and none of us know when that will happen so we need to live life to the fullest!!
So... we're on a new plan in our house to help Joshua start gaining more independence and forming a plan for himself.
Please pray this goes well and he can see the positives for this medical regimen.
Hope you're all enjoying the lovely fall weather! It's actually cooling down here a little too, finally!!
Love ya!
Wednesday, October 6, 2010
UF Tomorrow
Tomorrow morning we leave bright and early for our first UF trip in a few months. The last two appointments have been here in Jacksonville but this month we head back down to Gainesville. He has his normal appointment which includes his 6 minute walk, labs, echo, ekg and then we meet with his cardiologist. After that we will see his pulmonologist. We haven't seen her in several months so I'm happy we'll be doing that this trip. It's an all day affair but I'm glad we'll get it all done in one day versus two or three when we're in Jax.
Although I think he seems more tired, Joshua is doing okay. He hasn't been taking his medicine like he needs to and it's driving me crazy. We've finally gotten him to what seems like the easiest regimen. All of his pills are down to once a day (we changed the meds in order to have the dosage only be one time a day instead of two or three times. It's a lot of paperwork and red tape to get him approved for the new meds.) He still takes his inhaled medicine (the micro nebulized med) four times a day but that's it.
I am trying to transition him to being responsible for his medical care and it's really really hard. At some point he has to decide he's going to take his medical needs seriously. He wants to wait until he FEELS sick. I've told him, again, that if we wait until then, we cannot reverse the damage done. We caught this early (as far as the doctors think), so he isn't feeling much different than he always has, but he's also been on meds for over a year. He doesn't seem to understand that if he stops taking the meds, he will get worse and then he really won't like what he'll need to do if he has a central line, or worse.
So.... please pray for us tomorrow if you think about it. I am hoping to have a serious heart to heart with the doctors tomorrow about all of this. It's always hard for me to do that because then they get in Josh's face about the seriousness of it, (which I know he needs), but then that upsets him. UGH!! Please pray they can stress all of it again, (repetition is necessary here), but that he receives it well.
I'm still praying God completely delivers him from all of this. I am praying for a complete miraculous healing. I know Joshua would use it to bring Him glory!!
I hope you're enjoying your fall weather, wherever you are!!!
Although I think he seems more tired, Joshua is doing okay. He hasn't been taking his medicine like he needs to and it's driving me crazy. We've finally gotten him to what seems like the easiest regimen. All of his pills are down to once a day (we changed the meds in order to have the dosage only be one time a day instead of two or three times. It's a lot of paperwork and red tape to get him approved for the new meds.) He still takes his inhaled medicine (the micro nebulized med) four times a day but that's it.
I am trying to transition him to being responsible for his medical care and it's really really hard. At some point he has to decide he's going to take his medical needs seriously. He wants to wait until he FEELS sick. I've told him, again, that if we wait until then, we cannot reverse the damage done. We caught this early (as far as the doctors think), so he isn't feeling much different than he always has, but he's also been on meds for over a year. He doesn't seem to understand that if he stops taking the meds, he will get worse and then he really won't like what he'll need to do if he has a central line, or worse.
So.... please pray for us tomorrow if you think about it. I am hoping to have a serious heart to heart with the doctors tomorrow about all of this. It's always hard for me to do that because then they get in Josh's face about the seriousness of it, (which I know he needs), but then that upsets him. UGH!! Please pray they can stress all of it again, (repetition is necessary here), but that he receives it well.
I'm still praying God completely delivers him from all of this. I am praying for a complete miraculous healing. I know Joshua would use it to bring Him glory!!
I hope you're enjoying your fall weather, wherever you are!!!
Friday, September 3, 2010
It's That Time Again
It's time for us to start school again!! We will officially start school Sept 7th. I am still a believer in not starting school until after Labor Day! I am hoping to be on a better schedule this year with the kids. I think the shock of everything with Josh has settled and homeschool can move back to the front burner.
A few months ago, when I was tucking Micayla in we were talking about school and I casually mentioned that maybe I should put them back in public school. She said, "No, Mom, why??" I said I didn't think we were doing enough. She then said, "Mom, how many 4th graders can tell you what Pulmonary Arterial Hypertension is?" Enough said. We may not have had the best academic year but they sure got a great medical education this year!!! Where is that on the standardized tests??
Anyway, Joshua started school this week!! It was a major fiasco but we got it done!! Just in case you didn't know... When you have a government agency paying for something, it doesn't always happen on the time schedule you need it to!!!!! We're not complaining, we are very thankful for Voc Rehab, but it sure can be a pain with all the paperwork and red tape.
He was enrolled in classes two weeks ago (4 of them). When we went to get his books, we found out that the college had not received payment from Voc Rehab so they dropped him from all of his classes!!! YIKES!!! Imagine our surprise at that moment.
So after many phone calls, we found out his plan had not officially been approved yet. UGH. We called everyday for a week. (Can you say squeaky wheel??)
The school told us we could enroll in classes up until they started, which was Monday, Aug 30th. Well, his plan finally got approved Monday afternoon. We went there Tuesday morning so he could sign everything. We left there and went straight to the school. Got there around 1:00pm. He started his first college class at 2:00pm. WHEW!!! We sat outside and went over his new schedule (only 3 classes) and got him re-acclimated to the campus and which buildings were where and off he went!!!
So, please pray for him to stay focused on school and get his work done, without John or I having to stay on top of him! That's my desire!!!
I'm looking forward to all of us getting back to a schedule. Yes, I actually said that, scary I know.
Hope you all have a great year!!!
Blessings to you!! I'll leave you with this... one of my new favorite quotes...
"Our greatest fear should not be of failure but of succeeding at things in life that don't really matter." ~~Francis Chan
A few months ago, when I was tucking Micayla in we were talking about school and I casually mentioned that maybe I should put them back in public school. She said, "No, Mom, why??" I said I didn't think we were doing enough. She then said, "Mom, how many 4th graders can tell you what Pulmonary Arterial Hypertension is?" Enough said. We may not have had the best academic year but they sure got a great medical education this year!!! Where is that on the standardized tests??
Anyway, Joshua started school this week!! It was a major fiasco but we got it done!! Just in case you didn't know... When you have a government agency paying for something, it doesn't always happen on the time schedule you need it to!!!!! We're not complaining, we are very thankful for Voc Rehab, but it sure can be a pain with all the paperwork and red tape.
He was enrolled in classes two weeks ago (4 of them). When we went to get his books, we found out that the college had not received payment from Voc Rehab so they dropped him from all of his classes!!! YIKES!!! Imagine our surprise at that moment.
So after many phone calls, we found out his plan had not officially been approved yet. UGH. We called everyday for a week. (Can you say squeaky wheel??)
The school told us we could enroll in classes up until they started, which was Monday, Aug 30th. Well, his plan finally got approved Monday afternoon. We went there Tuesday morning so he could sign everything. We left there and went straight to the school. Got there around 1:00pm. He started his first college class at 2:00pm. WHEW!!! We sat outside and went over his new schedule (only 3 classes) and got him re-acclimated to the campus and which buildings were where and off he went!!!
So, please pray for him to stay focused on school and get his work done, without John or I having to stay on top of him! That's my desire!!!
I'm looking forward to all of us getting back to a schedule. Yes, I actually said that, scary I know.
Hope you all have a great year!!!
Blessings to you!! I'll leave you with this... one of my new favorite quotes...
"Our greatest fear should not be of failure but of succeeding at things in life that don't really matter." ~~Francis Chan
Wednesday, August 11, 2010
Uh Oh... Look Out!!!!
Well.... the time has finally come... Joshua received his driving permit today!!! YIKES!!!!
It's been a long time coming but as we all know, the timing is just right!
John has been pushing Joshua this summer to study for his drivers license. I have never been super sure about this so I haven't said too much about it. Driving offers a whole new set of responsibilities as well as distractions so it hasn't been on the top of my priority list to put him behind the wheel of a car, much less my car!! Up until the last 6 months or so, Joshua has not been interested in getting his permit, but it's amazing what can happen when your Dad is breathing down your neck!!
So... today Alex and I took Joshua to take his test to get a permit. The first thing they do, after going over the 100 pieces of information they require you to bring, is give him the vision test. "Please read the 12 characters in row 5 Joshua." Joshua proceeds to read only 8 characters. The man kindly asks him to read the last 4. Joshua reads the 8 characters again. The man says, "you're only reading the first 8." Joshua then says "there are only 8."
UH - OH. I'm standing there wondering what is happening and thinking we're going down fast!
He asks Alex to look into his machine and see if there are 12 characters and Alex said there were. Joshua looks again and can only see 8. I'm standing there thinking... "maybe he's not supposed to drive!!" The man has me look and tell him what I see and I see 12 characters. Hmmmm.....
At this point, Joshua is getting mad, which I'm sure Alex and I are the only one's who can tell. Mad for Joshua is like most of us when we're slightly frustrated.
So, the man gives us a green form to take to our eye doctor and have him verify his prescription and answer a handful of questions about Joshua's eyes and how they will affect him driving. However, he still allowed Joshua to take the written test. So... off Josh went to take the test on their computer. Meanwhile the man tells me that you can be blind in one eye and still drive. Whew... he may make it!
We waited outside for him. When we came back in,about 20 mins later, he was finished and giving me a thumbs up as I walked towards him!!!!
Of course, we left the DMV and drove straight to the eye doc. I was not going to make him wait after that!! So... we waited at the eye doc for him to get to the green form in between patients and we were off... back to the DMV!
So..... now the practice begins!!!
Please pray that God gives us T O N S of patience and safety!!!
Way to go Josh!!! Super proud of you!!!
It's been a long time coming but as we all know, the timing is just right!
John has been pushing Joshua this summer to study for his drivers license. I have never been super sure about this so I haven't said too much about it. Driving offers a whole new set of responsibilities as well as distractions so it hasn't been on the top of my priority list to put him behind the wheel of a car, much less my car!! Up until the last 6 months or so, Joshua has not been interested in getting his permit, but it's amazing what can happen when your Dad is breathing down your neck!!
So... today Alex and I took Joshua to take his test to get a permit. The first thing they do, after going over the 100 pieces of information they require you to bring, is give him the vision test. "Please read the 12 characters in row 5 Joshua." Joshua proceeds to read only 8 characters. The man kindly asks him to read the last 4. Joshua reads the 8 characters again. The man says, "you're only reading the first 8." Joshua then says "there are only 8."
UH - OH. I'm standing there wondering what is happening and thinking we're going down fast!
He asks Alex to look into his machine and see if there are 12 characters and Alex said there were. Joshua looks again and can only see 8. I'm standing there thinking... "maybe he's not supposed to drive!!" The man has me look and tell him what I see and I see 12 characters. Hmmmm.....
At this point, Joshua is getting mad, which I'm sure Alex and I are the only one's who can tell. Mad for Joshua is like most of us when we're slightly frustrated.
So, the man gives us a green form to take to our eye doctor and have him verify his prescription and answer a handful of questions about Joshua's eyes and how they will affect him driving. However, he still allowed Joshua to take the written test. So... off Josh went to take the test on their computer. Meanwhile the man tells me that you can be blind in one eye and still drive. Whew... he may make it!
We waited outside for him. When we came back in,about 20 mins later, he was finished and giving me a thumbs up as I walked towards him!!!!
Of course, we left the DMV and drove straight to the eye doc. I was not going to make him wait after that!! So... we waited at the eye doc for him to get to the green form in between patients and we were off... back to the DMV!
So..... now the practice begins!!!
Please pray that God gives us T O N S of patience and safety!!!
Way to go Josh!!! Super proud of you!!!
Saturday, August 7, 2010
UF Visit
Well... we had our doctor visit with UF this week. I haven't posted a lot lately. Trying to enjoy our summer and relax before school starts.
Joshua is doing well. We are switching up some of his meds. We were able to switch one of his meds to only once a day, (from twice a day), and am still working on getting another one moved to once a day, from three times a day. Hopefully this will help with compliance. He really hates taking the meds so anything to help will be great.
He has been more fatigued lately. Not sure if that is from it being summer and just laziness or from something else. He tends to fall asleep just about anywhere and can fall asleep quickly regardless of what is going on in the room. He has been staying up later and such, but still getting to sleep in so I'm not sure. I'm just keeping my eye on it for now along with the doctors.
We don't have to return to the doctor for two months this time so that is always nice to have a break! We will also see his pulmonologist at our next visit as well.
Thank you for all your continued prayers for my boy!!! It's been a year hasn't it!?!?
Enjoy the rest of your summer! I hope you're staying cool!!! Heat index has been 105-115 the last few weeks. I'm done with summer!!!
Blessings to you!!!
Joshua is doing well. We are switching up some of his meds. We were able to switch one of his meds to only once a day, (from twice a day), and am still working on getting another one moved to once a day, from three times a day. Hopefully this will help with compliance. He really hates taking the meds so anything to help will be great.
He has been more fatigued lately. Not sure if that is from it being summer and just laziness or from something else. He tends to fall asleep just about anywhere and can fall asleep quickly regardless of what is going on in the room. He has been staying up later and such, but still getting to sleep in so I'm not sure. I'm just keeping my eye on it for now along with the doctors.
We don't have to return to the doctor for two months this time so that is always nice to have a break! We will also see his pulmonologist at our next visit as well.
Thank you for all your continued prayers for my boy!!! It's been a year hasn't it!?!?
Enjoy the rest of your summer! I hope you're staying cool!!! Heat index has been 105-115 the last few weeks. I'm done with summer!!!
Blessings to you!!!
Thursday, July 29, 2010
Beauty from Ashes
It seems like over the last several months, maybe the last year, things have been either on a downward slide or just stagnant. We've had many things we've had to digest and it's been a long road. Lots of appointments, job changes, etc. Most of you know what I'm talking about. Finding out your son has a rare, terminal disease is not something to digest easily or over a quick period of time.
We have had the tremendous blessing of having wonderful doctors, nurses, and social workers, a fantastic PH clinic, and insurance that has covered just about all of his medical expenses. His meds are quite expensive and we are so thankful for his insurance!
One appointment we've been having over the last 5 months, requiring many phone calls and hours and hours of waiting, is with Vocational Rehabilitation. They help people with disabilities get set up for success and transitioning to adulthood. They do everything from helping with a job search, career counseling, providing life skills, tutoring, and also helping with tuition costs, etc. We've been on a waiting list for quite some time waiting to hear what they are going to be able to do for Joshua. Each time I call I get told "it's in Tallahassee."
We were able to meet with them this week. YAY!! We found out they are going to be able to help Joshua by paying 100% of his tuition and books at any public school in Florida! John and I could barely contain our excitement! For once, this horrible disease has a benefit for Joshua! Because of this causing him to be labeled "disabled", it has now put him in this position to receive this HUGE blessing!
We are so happy for Joshua. He even said he feels like he can do this now with all the help he was told he would have from VR! They will provide a math tutor for him, (his very least favorite subject) and help him find a job, in his field, upon graduation and anything else he needs to help him reach his goals.
Thank you Lord for providing this HUGE blessing to us. We will continue to thank Him for all He is doing and will continue to do with Josh.
All of this just reminds me that we are not in control. We have choices to make, yes. But we don't have total control of what happens. I'm so thankful today. I am very happy that Joshua will not have to worry about money while he is going through school at FSCJ for his ASL degree. This will allow him to focus on his academics!! Pray he does that!!! I think he will.
It's amazing that through all the "ashes" of this last year, and all the changes Joshua has had to deal with, it feels like there is finally something beautiful from it all.
Continue to pray for a cure for PAH! I believe we might see it one day! And if you've not signed up to be an organ donor, please do so. Thank you!
We have had the tremendous blessing of having wonderful doctors, nurses, and social workers, a fantastic PH clinic, and insurance that has covered just about all of his medical expenses. His meds are quite expensive and we are so thankful for his insurance!
One appointment we've been having over the last 5 months, requiring many phone calls and hours and hours of waiting, is with Vocational Rehabilitation. They help people with disabilities get set up for success and transitioning to adulthood. They do everything from helping with a job search, career counseling, providing life skills, tutoring, and also helping with tuition costs, etc. We've been on a waiting list for quite some time waiting to hear what they are going to be able to do for Joshua. Each time I call I get told "it's in Tallahassee."
We were able to meet with them this week. YAY!! We found out they are going to be able to help Joshua by paying 100% of his tuition and books at any public school in Florida! John and I could barely contain our excitement! For once, this horrible disease has a benefit for Joshua! Because of this causing him to be labeled "disabled", it has now put him in this position to receive this HUGE blessing!
We are so happy for Joshua. He even said he feels like he can do this now with all the help he was told he would have from VR! They will provide a math tutor for him, (his very least favorite subject) and help him find a job, in his field, upon graduation and anything else he needs to help him reach his goals.
Thank you Lord for providing this HUGE blessing to us. We will continue to thank Him for all He is doing and will continue to do with Josh.
All of this just reminds me that we are not in control. We have choices to make, yes. But we don't have total control of what happens. I'm so thankful today. I am very happy that Joshua will not have to worry about money while he is going through school at FSCJ for his ASL degree. This will allow him to focus on his academics!! Pray he does that!!! I think he will.
It's amazing that through all the "ashes" of this last year, and all the changes Joshua has had to deal with, it feels like there is finally something beautiful from it all.
Continue to pray for a cure for PAH! I believe we might see it one day! And if you've not signed up to be an organ donor, please do so. Thank you!
Wednesday, June 2, 2010
Monday, May 24, 2010
Sunday, May 2, 2010
Update... UF Visit This Week
So, it's been a lot lately. We have had a lot going on with the kids schedules and Joshua's trips to UF.
We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)
It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.
Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.
Micayla had made a card for Dr. A that read:
"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".
She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.
We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.
Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.
Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.
Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!
We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)
It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.
Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.
Micayla had made a card for Dr. A that read:
"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".
She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.
We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.
Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.
Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.
Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!
Monday, April 19, 2010
Sleep Study
I love my husband! He is taking Joshua all by himself to UF tonight for his sleep study!!! I am so thankful he agreed to let me stay home and get caught up on laundry and housework! (Yes, both machines are running right now!)
They are repeating the sleep study since he is still obstructing at night.
Please pray for safe travel and for the test to be thorough and accurate!
Blessings!!
They are repeating the sleep study since he is still obstructing at night.
Please pray for safe travel and for the test to be thorough and accurate!
Blessings!!
Wednesday, April 14, 2010
Final Update for Today
We are home now. Josh is tired, we are all tired. It was a long day. I'm feeling a little down I suppose. It seems like we didn't get the best news today, but it wasn't bad either. It could be worse.
One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.
The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)
His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.
So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.
We also will be returning to UF in two weeks to see Dr. A (his cardiologist).
He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.
He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!
Thank you for your support for Joshua and our family.
Hug each other and do something nice for someone else.
One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.
The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)
His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.
So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.
We also will be returning to UF in two weeks to see Dr. A (his cardiologist).
He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.
He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!
Thank you for your support for Joshua and our family.
Hug each other and do something nice for someone else.
Joshua Update #2
We're just sitting here watching him sleep. He was able to eat lunch and use the bathroom (all while lying flat mind you), and he's back asleep now. He had to lay flat for 4 hours after the cath. We brought his CPAP machine so he could have it during surgery and recovery.
We had a planned visit with his pulmonologist while in recovery. I was so happy she was able to be here to witness for herself what he does while he sleeps. It looks like he's gasping for air, or choking, even while wearing the CPAP. So, she ordered a new sleep study to be done saying the CPAP is not set high enough for him and maybe that will help him want to wear it more. (He hasn't been good about wearing it every night.) We also have to have the medical supply company come out and adjust his machine.
So while we've been waiting here, we have already scheduled the sleep study (Monday night), and the respiratory therapist will be at the house tonight to adjust the machine.
We also have a follow up appt in two weeks with our regular cardiologist at the pulmonary hypertension clinic here at UF to discuss where we go from here.
We had a planned visit with his pulmonologist while in recovery. I was so happy she was able to be here to witness for herself what he does while he sleeps. It looks like he's gasping for air, or choking, even while wearing the CPAP. So, she ordered a new sleep study to be done saying the CPAP is not set high enough for him and maybe that will help him want to wear it more. (He hasn't been good about wearing it every night.) We also have to have the medical supply company come out and adjust his machine.
So while we've been waiting here, we have already scheduled the sleep study (Monday night), and the respiratory therapist will be at the house tonight to adjust the machine.
We also have a follow up appt in two weeks with our regular cardiologist at the pulmonary hypertension clinic here at UF to discuss where we go from here.
Joshua Update
Dr. Joe just left. He told us Joshua did okay with the procedural sedation. They did not give him general anesthesia because he is too high risk.
He told us the pressures look the same as they did last year but he is going to get the numbers finalized and give to us later. It's not a bad thing. At least they aren't worse, right?
We will see his heart doc in two weeks to decide where to go from here. We may be adding another drug.
Joshua was upset before he went in because he didn't want to do this today or ever. He's a little tired of the whole thing actually.
We're very thankful for Dr. Joe and his patience and the time he spends with us answering our millions of questions.
Thank you for your prayers. Please continue to pray for Joshua and his ability to deal with all of this without losing his wonderful, peaceful personality and faith.
More to come.
Blessings!!!
He told us the pressures look the same as they did last year but he is going to get the numbers finalized and give to us later. It's not a bad thing. At least they aren't worse, right?
We will see his heart doc in two weeks to decide where to go from here. We may be adding another drug.
Joshua was upset before he went in because he didn't want to do this today or ever. He's a little tired of the whole thing actually.
We're very thankful for Dr. Joe and his patience and the time he spends with us answering our millions of questions.
Thank you for your prayers. Please continue to pray for Joshua and his ability to deal with all of this without losing his wonderful, peaceful personality and faith.
More to come.
Blessings!!!
Tuesday, April 13, 2010
Josh's PFT's
Joshua has finished doing his PFT tests and we're back at the hotel now.
Good news is he seems better this time and not so worn out!! A lot better actually. I wish I knew how to read the reports more and what all the little acronyms mean. We'll find out tomorrow when we meet with the pulmonologist.
They wouldn't let me go back with him this time. I hate that. I like to know exactly what is going on with him! While waiting in the waiting room, I was able to visit with some other people, of course. Surprised aren't you? Please be in prayer for Dennis and Mary. Dennis is an older gentleman with pulmonary hypertension and sarcoidosis. His first visit is tomorrow with the PFT's and then to meet the doctor to see if he's a transplant candidate. They were very sweet and I hope he will be able to get fantastic, healing treatment at UF!
So... we will be at the hospital first thing in the morning for the heart cath. Please keep Joshua in your prayers for no complications! I am also praying for good news and no progression!
I'll try to update as soon as I can.
Thank you for your prayers!!!!!
Good news is he seems better this time and not so worn out!! A lot better actually. I wish I knew how to read the reports more and what all the little acronyms mean. We'll find out tomorrow when we meet with the pulmonologist.
They wouldn't let me go back with him this time. I hate that. I like to know exactly what is going on with him! While waiting in the waiting room, I was able to visit with some other people, of course. Surprised aren't you? Please be in prayer for Dennis and Mary. Dennis is an older gentleman with pulmonary hypertension and sarcoidosis. His first visit is tomorrow with the PFT's and then to meet the doctor to see if he's a transplant candidate. They were very sweet and I hope he will be able to get fantastic, healing treatment at UF!
So... we will be at the hospital first thing in the morning for the heart cath. Please keep Joshua in your prayers for no complications! I am also praying for good news and no progression!
I'll try to update as soon as I can.
Thank you for your prayers!!!!!
Sunday, April 11, 2010
Busy Week With Doctors
This week is a busy week for us. Tomorrow we see John's doctor to find out how he's doing with his shoulder. It's been a L O N G recovery process with lots of pain. I hope I never have to have shoulder surgery.
Also this week, we will be in Gainseville for Joshua's FULL PFT's (which wear him out)and his heart cath. We are hoping to hear good news or at least news that there is no progression. I'm curious to find out what his pulmonary pressures are for sure. The cath is the only way to know exactly.
Please keep them in your prayers. We do appreciate them immensely!
Consider yourselves hugged!
Also this week, we will be in Gainseville for Joshua's FULL PFT's (which wear him out)and his heart cath. We are hoping to hear good news or at least news that there is no progression. I'm curious to find out what his pulmonary pressures are for sure. The cath is the only way to know exactly.
Please keep them in your prayers. We do appreciate them immensely!
Consider yourselves hugged!
Saturday, March 6, 2010
Whew... long day!
Well... today was a rather long day. The block for John wore off around 11pm last night. We were up every two hours either changing his position, taking meds, or putting him on his machine for pain. He eventually ended up in the recliner. He was really hoping he would be able to sleep in our bed but it was too uncomfortable to lay down.
So... the day was spent taking 10 minute naps here and there, cooking, taking meds, hooking him up to his machine and keeping track of the kids. Thank you Grandpa John for being the taxi driver today! It started this morning taking Joshua and Alex to the church for them to go to a competition with several youth groups downtown called Teens Involved. They were both in different drama's and Joshua did puppets as well. They came home very excited since they were chosen to move on to regionals now!! Way to go guys!!
The Abel's took Micayla so she wouldn't be stuck home with the tired, worn out parents. Thanks guys!
Our friends made us dinner tonight. It was something I knew I was going to have to do.... eat FRESH meat, that he killed himself! UGH!
John couldn't wait for Marcus to cook some of his wild hog for him. He made us stroganoff, salad and bread. I will have to admit... it was good! Thank you Marcus and Devon for dinner!!
Did I tell you we have such wonderful friends?! We are very well loved. Thank you all for continuing to check in on John and keeping us in your prayers.
We've been told tomorrow is going to be the worst day. Fun times here in the Gentges' house!
Blessings~~~
So... the day was spent taking 10 minute naps here and there, cooking, taking meds, hooking him up to his machine and keeping track of the kids. Thank you Grandpa John for being the taxi driver today! It started this morning taking Joshua and Alex to the church for them to go to a competition with several youth groups downtown called Teens Involved. They were both in different drama's and Joshua did puppets as well. They came home very excited since they were chosen to move on to regionals now!! Way to go guys!!
The Abel's took Micayla so she wouldn't be stuck home with the tired, worn out parents. Thanks guys!
Our friends made us dinner tonight. It was something I knew I was going to have to do.... eat FRESH meat, that he killed himself! UGH!
John couldn't wait for Marcus to cook some of his wild hog for him. He made us stroganoff, salad and bread. I will have to admit... it was good! Thank you Marcus and Devon for dinner!!
Did I tell you we have such wonderful friends?! We are very well loved. Thank you all for continuing to check in on John and keeping us in your prayers.
We've been told tomorrow is going to be the worst day. Fun times here in the Gentges' house!
Blessings~~~
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
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.
Friday, November 20, 2009
UF Results
Well... as Josh said... "today was a long day Mom."
I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.
It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.
First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:
"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).
In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."
The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.
Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.
Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.
Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!
That's about it for now. We hope all of you have a great weekend!!!!
I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.
It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.
First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:
"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).
In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."
The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.
Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.
Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.
Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!
That's about it for now. We hope all of you have a great weekend!!!!
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