WOW! Where to start...it's been an interesting month to say the least. A couple weeks ago, Jay developed pneumonia. He'd gone in through the ER, but they wouldn't keep him because of all the germs in the hospital! Then this past Thursday, he went to see Dr. Trotter (hepatologist) who immediately admitted him due to the fluid build up in his belly and legs again!
They were able to drain a liter of fluid from his belly and kept him five and a half days while they tried to get his sodium back up (he's been trying to keep it down - apparently did a pretty good job since they worked to get it back UP into "normal" ranges) and to get some of the fluid off again.
He is at a 22 on his MELD score which is the highest he's ever been, so naturally we're doing the happy dance (kinda glad no one can see that but Jay and I!). We look at this as a "we could get the call any day now" kind of celebration. I know it's wrong to pray for someone's death, but I believe in God who has a purpose for everyone and someone's purpose is to give Jay life - this I believe with all my heart.
The insanity continues, but we're getting used to it (which sort of bothers me!). I don't want to be used to it - I want it to be over! I told Jay last night that if he wanted to make this my birthday AND Christmas gift this year, I'd happily take it. Of course I told him the same thing last year and he didn't come through on it, so...
I also want to take this opportunity to ask for prayers on behalf of some friends who have an 8-year-old that's about to have brain surgery. Little Ashley suffers from dystonia and if you could see his videos, you can see why they are hoping for a wonderful outcome from his surgery. It is currently scheduled for the 21st, and I've added them to our prayer list.
Thanks for all the love and support and prayers...we are blessed.
Wednesday, October 14, 2009
Tuesday, September 8, 2009
September Already?
Well, it's already September - how did that happen? Can Christmas really only be four months away? GOOD LORD!
Jay spent all of last week in the hospital - it was a very long week. Started when his belly button burst! It was awful, but at least it had a name, which meant it had a diagnosis and a treatment! Turned out to be not be such a dramatic treatment, but at least they kept him for the week and got 40 lbs of fluid off his body! Amazing!
Having a hard time thinking about "returning" to Dr. Lepe. Really love her, but feel that Dr. Trotter may be the answer to our prayers! Jay is at a 22 on his MELD, which of course, Trotter has nothing to do with, but do feel that he is the "aggressive" doctor that Dr. Hamilton said he was! Right now, aggression is all I want! Oh well, that and a liver, of course!
Jay is bored to tears, but we did get a new Netbook yesterday, so that will help him - at least he can access email during the day now and having something to do!
Friends Doyle and Gina are in Mexico for Gina's daughter's wedding! I'm so jealous - a week of pre-wedding "stuff," and then the wedding on Friday night. Doyle's daughter doesn't know it yet, but her boyfriend is going to propose to her while they're there! I am so excited for all of them - can't wait to hear the stories and see the pictures!
Found a new store - Charming Charlies - just like Sam Moon, but much more organized! Saw a movie this weekend - All About Steve with Sandra Bullock - too cute for words. Worked all day on Monday - busy weekend, but all in all, pretty good one! Oh, and Zach "blew in" Friday night, did his laundry, worked on his truck, and "blew out" Saturday morning! I guess I'm learning to be grateful for the little things!
Love to all!
Jay spent all of last week in the hospital - it was a very long week. Started when his belly button burst! It was awful, but at least it had a name, which meant it had a diagnosis and a treatment! Turned out to be not be such a dramatic treatment, but at least they kept him for the week and got 40 lbs of fluid off his body! Amazing!
Having a hard time thinking about "returning" to Dr. Lepe. Really love her, but feel that Dr. Trotter may be the answer to our prayers! Jay is at a 22 on his MELD, which of course, Trotter has nothing to do with, but do feel that he is the "aggressive" doctor that Dr. Hamilton said he was! Right now, aggression is all I want! Oh well, that and a liver, of course!
Jay is bored to tears, but we did get a new Netbook yesterday, so that will help him - at least he can access email during the day now and having something to do!
Friends Doyle and Gina are in Mexico for Gina's daughter's wedding! I'm so jealous - a week of pre-wedding "stuff," and then the wedding on Friday night. Doyle's daughter doesn't know it yet, but her boyfriend is going to propose to her while they're there! I am so excited for all of them - can't wait to hear the stories and see the pictures!
Found a new store - Charming Charlies - just like Sam Moon, but much more organized! Saw a movie this weekend - All About Steve with Sandra Bullock - too cute for words. Worked all day on Monday - busy weekend, but all in all, pretty good one! Oh, and Zach "blew in" Friday night, did his laundry, worked on his truck, and "blew out" Saturday morning! I guess I'm learning to be grateful for the little things!
Love to all!
Sunday, July 19, 2009
Mid-July
It's mid-July and finally some cooler weather has moved in...we've actually had rain the last couple of days.
Jay is feeling about the same - not good, not horrible, but somewhere in between! He goes back to his hepatologist in mid-August (hopefully, she won't be on maternity leave when its time for his appointment). He's extremely jaundiced these days...I hope that means he'll move "up" the list!
I have a kidney stone in my right kidney....after becoming much more disallusioned with my MD's office, I did a search and found a urologist on my own. He has scheduled a "sonar blast" for this coming Thursday, but says it's "no big deal."
I tore my calf muscle Friday night - same injury as last year, just different leg. I was walking through the living room, reached down to "mess with the dog," and heard it pop! Jay was actually in the other room and heard it! He came into the living room and by that time, I was on the couch, saying "not so nice things." He said, "What was that noise?"
Saturday morning, he took me to the emergency room and they diagnosed me. Told me to stay off of it for a couple of days and then into a moon boot, I go for 6 weeks. I NEED SOMEONE TO JUST THROW ME A BONE! I need a week that nothing goes wrong!!!!
Say prayers for us as we muddle through!
Love to all,
Karen
Jay is feeling about the same - not good, not horrible, but somewhere in between! He goes back to his hepatologist in mid-August (hopefully, she won't be on maternity leave when its time for his appointment). He's extremely jaundiced these days...I hope that means he'll move "up" the list!
I have a kidney stone in my right kidney....after becoming much more disallusioned with my MD's office, I did a search and found a urologist on my own. He has scheduled a "sonar blast" for this coming Thursday, but says it's "no big deal."
I tore my calf muscle Friday night - same injury as last year, just different leg. I was walking through the living room, reached down to "mess with the dog," and heard it pop! Jay was actually in the other room and heard it! He came into the living room and by that time, I was on the couch, saying "not so nice things." He said, "What was that noise?"
Saturday morning, he took me to the emergency room and they diagnosed me. Told me to stay off of it for a couple of days and then into a moon boot, I go for 6 weeks. I NEED SOMEONE TO JUST THROW ME A BONE! I need a week that nothing goes wrong!!!!
Say prayers for us as we muddle through!
Love to all,
Karen
Monday, June 15, 2009
Flying with Zach
We did it - we did it! We flew with Zach on Friday night from Rockwall to Stephenville! It was incredible, awesome and everything I hoped it would be!
The weather started out fine in Rockwall, but about 10 miles from Stephenville, we saw a huge bolt of lightning! Casey (Zach's friend and owner of the plane) was talking to a control tower somewhere who told him that we had nothing to worry about - "the weather was about 26 miles west of us." Casey informed the guy quickly, that, "Uh no, it was less than 26 miles."
We landed in Stephenville and then rode over to Hard Eight BBQ for dinner. Zach has talked about this place FOREVER, so I was excited to finally get to eat there, and he was right...the food was awesome! And the atmosphere was pretty cool too!
We headed back to the airport and we were being "followed" by a storm the entire time - lightning and really dark clouds...we hauled butt into the plane and got off the ground with lots of wind and draft! The clouds were incredible and the rockin' and rollin' of the plane didn't settle well with me, but honestly, the two Pilots were excellent. Nothing seemed to bother them at all - matter of fact, they both apologized for the bumpy ride. Landing at Rockwall was interesting; they had a hard time getting the landing gear down, but kept that little piece of information to themselves until we were safely on the ground (smart boys!).
All in all, other than the nasty weather, it was an incredible moment for me - I have done something I never dreamed possible two years ago when Zach started school, and I watched him in "his environment." It was just unbelievable!
I AM SO PROUD OF HIM!!!!
Karen
PS: Jay goes to one doctor today and his hepatologist on Thursday. He has been off work since mid-May and we do not anticipate him going back until after the transplant. He is doing better with the leg swelling - mostly because he makes every attempt to stay off his legs during the day. He is bored to tears, which I expected, and feels so bad most of the time that he hasn't even been fishing (THAT SHOULD TELL YOU EVERYTHING YOU NEED TO KNOW!) :)
Pray for "good" results on Thursday and love to you all!
The weather started out fine in Rockwall, but about 10 miles from Stephenville, we saw a huge bolt of lightning! Casey (Zach's friend and owner of the plane) was talking to a control tower somewhere who told him that we had nothing to worry about - "the weather was about 26 miles west of us." Casey informed the guy quickly, that, "Uh no, it was less than 26 miles."
We landed in Stephenville and then rode over to Hard Eight BBQ for dinner. Zach has talked about this place FOREVER, so I was excited to finally get to eat there, and he was right...the food was awesome! And the atmosphere was pretty cool too!
We headed back to the airport and we were being "followed" by a storm the entire time - lightning and really dark clouds...we hauled butt into the plane and got off the ground with lots of wind and draft! The clouds were incredible and the rockin' and rollin' of the plane didn't settle well with me, but honestly, the two Pilots were excellent. Nothing seemed to bother them at all - matter of fact, they both apologized for the bumpy ride. Landing at Rockwall was interesting; they had a hard time getting the landing gear down, but kept that little piece of information to themselves until we were safely on the ground (smart boys!).
All in all, other than the nasty weather, it was an incredible moment for me - I have done something I never dreamed possible two years ago when Zach started school, and I watched him in "his environment." It was just unbelievable!
I AM SO PROUD OF HIM!!!!
Karen
PS: Jay goes to one doctor today and his hepatologist on Thursday. He has been off work since mid-May and we do not anticipate him going back until after the transplant. He is doing better with the leg swelling - mostly because he makes every attempt to stay off his legs during the day. He is bored to tears, which I expected, and feels so bad most of the time that he hasn't even been fishing (THAT SHOULD TELL YOU EVERYTHING YOU NEED TO KNOW!) :)
Pray for "good" results on Thursday and love to you all!
Thursday, May 14, 2009
Jay Update - May 14, 2009
Seriously, can someone take 6 diuretics a day and still function (outside of the bathroom)?
Jay saw the hepatologist today - his legs are incredibly swollen and one of them is turning red below the knee. She said she thought it was the "start of an infection." She put him on an antibiotic and said if it wasn't better by Monday, she would admit him to the hospital. My fear of course, is that will take him off the list. She said she hoped the antibiotic would keep it from developing, so we'll see.
She put him on ANOTHER diuretic. The poor guy spends more time in the bathroom in a day than I do in a week, so I can't imagine how this is going to work! I made him wear shorts to her office today so she could see his legs - they are unbelievable!
We won't know anything about his MELD score until later today - they are supposed to call him. Disappointed, he also learned today that he is back to his original transplant coordinator, which neither one of us liked in the beginning! But at this point, we're trying not to care! I'm sure the Lord will provide - He always does.
The doctor did say that it was time to quit work and stay off his legs....hopefully, he'll actually listen and obey.
Please pray that his MELD score is higher and that the Lord sends a liver our way....SOON!
Thanks for the prayers and...
Love to you all,
Karen
Jay saw the hepatologist today - his legs are incredibly swollen and one of them is turning red below the knee. She said she thought it was the "start of an infection." She put him on an antibiotic and said if it wasn't better by Monday, she would admit him to the hospital. My fear of course, is that will take him off the list. She said she hoped the antibiotic would keep it from developing, so we'll see.
She put him on ANOTHER diuretic. The poor guy spends more time in the bathroom in a day than I do in a week, so I can't imagine how this is going to work! I made him wear shorts to her office today so she could see his legs - they are unbelievable!
We won't know anything about his MELD score until later today - they are supposed to call him. Disappointed, he also learned today that he is back to his original transplant coordinator, which neither one of us liked in the beginning! But at this point, we're trying not to care! I'm sure the Lord will provide - He always does.
The doctor did say that it was time to quit work and stay off his legs....hopefully, he'll actually listen and obey.
Please pray that his MELD score is higher and that the Lord sends a liver our way....SOON!
Thanks for the prayers and...
Love to you all,
Karen
Thursday, May 7, 2009
Update on Everything
Well, I probably should wait to post this until next week, but honestly, I guess I just need to "talk." Jay gets worse by the day....no, by the moment. Each day is a struggle for him now; just to get up and go to work, but staying is impossible. I don't think he's worked a full day in about two weeks and if that doesn't tell you how bad he is....he hasn't fished in almost a month. THAT SHOULD PUT IT INTO PERSPECTIVE FOR YOU NON-BELIEVERS!
Zach is supposed to be home this weekend for Mother's Day and to get boxes - he's moving out of his apartment and into a new one with a new roommate. Hope that works for him. He's still planning to go to summer school so he won't be home. I already miss him!
Friends are plenty and we are blessed. I'll update next week after the visit with the Hepatologist!
God bless you all,
Karen
Zach is supposed to be home this weekend for Mother's Day and to get boxes - he's moving out of his apartment and into a new one with a new roommate. Hope that works for him. He's still planning to go to summer school so he won't be home. I already miss him!
Friends are plenty and we are blessed. I'll update next week after the visit with the Hepatologist!
God bless you all,
Karen
Friday, March 20, 2009
March Update
Where to begin...
Zach has been home for a week - can't believe it!!! He's been on spring break and we've had a great time! He is going back today and once again, I'll go through withdrawal!
Jay went to the Hepatologist yesterday. She moved him "up" the list again...not far...to a 19, but up nevertheless. Kinda sad when you pray for bad numbers, but at least everyone understands why we do it! He is now 14th on the list, but since he was #4 in December, I don't put much stock in the whole "where you are on the list" scenario! He is horribly tired all the time (expected); has been experiencing liver pain (also expected); and has the worst leg cramps during the night from taking the diuretics. She gave him another medication in hopes of at least curbing the leg cramps...I have taken to buying more pickle juice than can be imagined! Good thing it comes in "sports bottles;" otherwise, he drinks it from the pickle jar! I need to buy stock in bananas as well!
She did tell him that he would be "transplanted this year," but once again, she told him in December that she thought he would be "transplanted over the holidays," so.... I trust her implicitly, but this is, no doubt, a numbers game.
He is still working, although each day seems to be more difficult. But he's been very smart and when he just can't do it anymore, he takes a partial day either by going in late or leaving early. He's usually asleep when I get home in the afternoons and then he's in bed between 7:00 and 7:30 each night. It's really weird...I can't imagine what people who are higher on the list are able to do (we found out yesterday that there's a person who's a 35 - the highest number with Baylor is 36!!!). Can you imagine?????
All is well otherwise...anyone got any great ideas for college funding?????
Love to you all,
Karen
Zach has been home for a week - can't believe it!!! He's been on spring break and we've had a great time! He is going back today and once again, I'll go through withdrawal!
Jay went to the Hepatologist yesterday. She moved him "up" the list again...not far...to a 19, but up nevertheless. Kinda sad when you pray for bad numbers, but at least everyone understands why we do it! He is now 14th on the list, but since he was #4 in December, I don't put much stock in the whole "where you are on the list" scenario! He is horribly tired all the time (expected); has been experiencing liver pain (also expected); and has the worst leg cramps during the night from taking the diuretics. She gave him another medication in hopes of at least curbing the leg cramps...I have taken to buying more pickle juice than can be imagined! Good thing it comes in "sports bottles;" otherwise, he drinks it from the pickle jar! I need to buy stock in bananas as well!
She did tell him that he would be "transplanted this year," but once again, she told him in December that she thought he would be "transplanted over the holidays," so.... I trust her implicitly, but this is, no doubt, a numbers game.
He is still working, although each day seems to be more difficult. But he's been very smart and when he just can't do it anymore, he takes a partial day either by going in late or leaving early. He's usually asleep when I get home in the afternoons and then he's in bed between 7:00 and 7:30 each night. It's really weird...I can't imagine what people who are higher on the list are able to do (we found out yesterday that there's a person who's a 35 - the highest number with Baylor is 36!!!). Can you imagine?????
All is well otherwise...anyone got any great ideas for college funding?????
Love to you all,
Karen
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