I love to write, and it usually comes easily for me, but it appears that I have no motivation to write; but I know I need to. The summer started off great; Graham kept Jordan for a few days, we went to the Lake with our friends and made a trip down to Padre Island with more friends. And just as I was about to go out of town for a few days, Graham became sick...
Wednesday Night he began to run a fever. At 3AM he woke me up, the bed shaking from his shivers. He needed Tylenol and his thermometer. He wasn't running a fever anymore, so he just took his pills, put on more clothes and attempted to fall back asleep. Thirty minutes later I was awoken by him running to the bathroom where he began vomiting like crazy. He retook his temp and it had exceeded 100 degrees. Something was wrong.
Thursday: I left for San Antonio with a heavy mind and heart. Graham packed up Jordan and himself and headed to the hospital where his Mom met him. Tests all came back negative, they had no clue what was going on. Graham could not eat.
Friday: signs of pneumonia were popping up and tests were all still negative. They scheduled a bronchoscope for 3PM. They found a lot of gunk, but nothing too out of the ordinary. Fever free but still not eating.
Saturday: the "gunk" hadn't grown anything and the predicted he had pneumonia. Still not eating. But I finally got back in town and with Jordan still situated at his Mom's house, I got to spend the night. I felt better being able to see him.
Sunday: No change, little food.
Monday: Seemed to start looking up. Jordan and I spent the day with him. "Gunk" or cultures began growing MRSA (staff). So they started another antibiotic.
Tuesday: No change.
Wednesday: Fluid found around left lung in daily X-Ray which ='s longer stay. But answers the question of why he feels so tight and could be why he has a cough like he still has his old lungs.
Thursday: No change.
I miss him. I thought this was over. I hate this.
They say they really can't be for sure of what is going on with out a Biopsy on his lungs. They can't biopsy his lungs because of his Cumiden, and they aren't stopping that. So until there are answers, I have no words.
Thursday, June 30, 2011
Tuesday, June 7, 2011
SUMMER'S HERE!!!!
It's funny how things have changed in the past year. I have been looking forward to this summer for quite sometime, the reasons behind it have changed though. I love my job, I love the kids, the challenge, the non-monotony of it...BUT, I also LOVE my summers. I love sitting around catching up on Regis and Kelly, organizing closets, sleeping in, hanging out with Jordan, de-cluttering anything in the house that is cluttered, and just relaxing. Last summer, this did not happen. I held my breath most of the summer wondering, "Is he going to make it?" "Is this the trip he'll actually get transplanted?" "Why won't he eat?" "When will he get out of bed?" "Wow, he's in a great mood!" And in my heart of hearts, I knew he would be transplanted and healthy by this summer. To me, there was no other option. I can't really make it without him, so I didn't think otherwise. So last year, I was looking forward to having a summer with Graham back at work, me back to my lazy organizing self with my sidekick J by my side.
But now, my opinion has changed. Now Graham is not only healthy, BUT in a great mood! (His friends use to refer to him as "Grumpy Graham" but, come on, when you are struggling to breath and make it day to day, you tend to be a little grumpy). So this summer, I'm jam packing it full of things to do with my little family I never imagined I'd get to do without weeks of rest in between.
We have beach trips, lake trips, family trips, friend trips, date nights, daughter nights, and even more that I have no idea even exist yet. I'm soaking it all in. I'll probably go back to work in August more tired than I am now that I just finished up an exhausting school year; but I know I'll cherish every moment together with him...and it'll be all worth it!
But now, my opinion has changed. Now Graham is not only healthy, BUT in a great mood! (His friends use to refer to him as "Grumpy Graham" but, come on, when you are struggling to breath and make it day to day, you tend to be a little grumpy). So this summer, I'm jam packing it full of things to do with my little family I never imagined I'd get to do without weeks of rest in between.
We have beach trips, lake trips, family trips, friend trips, date nights, daughter nights, and even more that I have no idea even exist yet. I'm soaking it all in. I'll probably go back to work in August more tired than I am now that I just finished up an exhausting school year; but I know I'll cherish every moment together with him...and it'll be all worth it!
Sunday, May 15, 2011
MAY - Jordan Turns 3
It's amazing to go through pictures and see the changes that have incurred on my family. I have a picture on my nightstand of Graham, it was taken a few years back when our good friends became engaged. Graham and a good buddy of his thought it would be a grand idea to wear patriotic swim thongs for this romantic occasion. And as soon as she said yes, they stripped down into them. Of course I took pictures and ever since, this cherished picture has been beside me at night, framed. I thought, we thought, he looked good. No oxygen, great color, happy (and he did, at this point in time look like all of those things). But now, looking at this picture, OH MY GOD - what time, and new lungs, can do. Comparing what he looks like now vs. then, he looks so sick in my picture. His color now puts his color then to shame, even though he wasn't wearing oxygen in the picture, pretty sure he got some soon afterwards. He has 20 - 25 pounds more meat on him. His happy face is still around - little bit meatier, but still all smiles and laughter from the newest joke he's pulled.
Jordan turned 3 on May 1st. Her birthday, besides always being a happy celebration for us, has also been a "will Graham be able to be there and enjoy it" thought for us. First birthday, he had just left the hospital and look and felt great. Second birthday was in between hospital stays and it took all his might to sit there with oxygen and enjoy his little girl. Third birthday, he was there - mentally and physically, making sure Jordan and he enjoyed every little second. We had it at the park, and he swung, took pictures, passed out cake, ran around, then came home and with the help of family and friends, built Jordan her very own swing set and slide. All while socializing, having a good time, and NO NAP!
I thoroughly enjoy watching Graham enjoy life. Knock on wood...Ever since his last stay in the hospital, he has been doing great. I am starting to let my held breath out and enjoy life with him. Thank you God for all the blessing you have given us.
Jordan turned 3 on May 1st. Her birthday, besides always being a happy celebration for us, has also been a "will Graham be able to be there and enjoy it" thought for us. First birthday, he had just left the hospital and look and felt great. Second birthday was in between hospital stays and it took all his might to sit there with oxygen and enjoy his little girl. Third birthday, he was there - mentally and physically, making sure Jordan and he enjoyed every little second. We had it at the park, and he swung, took pictures, passed out cake, ran around, then came home and with the help of family and friends, built Jordan her very own swing set and slide. All while socializing, having a good time, and NO NAP!
I thoroughly enjoy watching Graham enjoy life. Knock on wood...Ever since his last stay in the hospital, he has been doing great. I am starting to let my held breath out and enjoy life with him. Thank you God for all the blessing you have given us.
Monday, April 18, 2011
Living and Loving Life
We have always been a fun, outgoing couple; to say that we sat and sulked in a corner would be a HUGE lie. But we have NEVER experienced life like this. Before, we would do something, have a blast, Graham would, more likely than not, be the life of the event, then go home. Graham would need several days, if not a week or a hospital stay, to recuperate. Now...HELLO WORLD! Graham is a non-stop energizer bunny. I know I've said it before, but it's been going like this since mid-February (knock on wood) and there is no slowing down. Jordan and I have both been sick, and I mean SICK, and he not only didn't catch it, he took care of us!
By the end of Graham's 15 day hospital stay with RSV, the doctor just dismissed him. He figured, they aren't helping him, might as well send him home. And ever since, he keeps getting bigger and stronger. He's been going to the gym, strengthening all the muscles he hasn't used in awhile. He stands taller, has more muscle tone, has gained almost enough weight to FINALLY surpass me on the scale, and has the best out look on life. He's also been helping out a lot around the house and with Jordan. It's weird, I've had to retrain myself to not do somethings, or even not get offended when he does them. Yes, I would get offended. Because before, I knew it hurt him to do things, and if he had to do them, it was because it really needed to be done and he couldn't wait on me. Now, it's nothing like that.
He's been really trying to make up time with Jordan. Picking her up early from school to go swimming, having sleepovers on the couch bed together (she LOVES it, she gets to stay up late, watch Sponge Bob, and have special time with Daddy), date nights that include dinner and Braum's, and he even took her to see her first movie in the theatre - Rango. Big success, and next on her list is Rio.
He's also been trying to just relax and have fun with friends and family. Every Easter we go with my parents to an Easter Brunch at the Fort Worth Club. The food is so good, and there is a ton of it. Graham has never fully experienced this buffet. Always being too sick to eat his fill. This year, Graham is planning on not eating much on the days leading up to the brunch and chowing down. Showing the buffet who's boss. I have Pepto waiting for when we return.
We still don't know when he'll be released for work. We are guessing when he reaches a year. Dr. Rosenblatt has always been extra cautious with him, and that is fine by us. We want him around for many, MANY more years!
By the end of Graham's 15 day hospital stay with RSV, the doctor just dismissed him. He figured, they aren't helping him, might as well send him home. And ever since, he keeps getting bigger and stronger. He's been going to the gym, strengthening all the muscles he hasn't used in awhile. He stands taller, has more muscle tone, has gained almost enough weight to FINALLY surpass me on the scale, and has the best out look on life. He's also been helping out a lot around the house and with Jordan. It's weird, I've had to retrain myself to not do somethings, or even not get offended when he does them. Yes, I would get offended. Because before, I knew it hurt him to do things, and if he had to do them, it was because it really needed to be done and he couldn't wait on me. Now, it's nothing like that.
He's been really trying to make up time with Jordan. Picking her up early from school to go swimming, having sleepovers on the couch bed together (she LOVES it, she gets to stay up late, watch Sponge Bob, and have special time with Daddy), date nights that include dinner and Braum's, and he even took her to see her first movie in the theatre - Rango. Big success, and next on her list is Rio.
He's also been trying to just relax and have fun with friends and family. Every Easter we go with my parents to an Easter Brunch at the Fort Worth Club. The food is so good, and there is a ton of it. Graham has never fully experienced this buffet. Always being too sick to eat his fill. This year, Graham is planning on not eating much on the days leading up to the brunch and chowing down. Showing the buffet who's boss. I have Pepto waiting for when we return.
We still don't know when he'll be released for work. We are guessing when he reaches a year. Dr. Rosenblatt has always been extra cautious with him, and that is fine by us. We want him around for many, MANY more years!
Tuesday, February 15, 2011
Another Holiday...Another Hospital Stay
Not that I'm a big fan of Valentines Day, (even though I have someone who loves me I still believe that it's a holdiay to waste money) but it seems anytime a holiday comes around, Graham has to go in, or is in, the hospital. And another date night (even though we would've stayed in, we would've hung out together) is gone down the drain. But the good news...Graham is feeling much better. This time around he had RSV - an upper respritory virus that affects his lungs and breathing passages. Most likely, Jordan or I gave him this one too. Starting to wonder if Jordan and I should ever even go near him again; or at least until he is a year out. It stinks to think that you are harming someone you love just by breathing.
With RSV he had to do the same treatment he did for the Flu, with IV antibiotics included. Six hours of treatment, two hours break...repeated for 18 treatments. No one but nurses in hazmat suits and doctors allowed in the room. We hate it, we all (Jordan, Graham, and I) start really missing each other and look forward to the weekend where Jordan and I can sneak in during his 2 hours break. Which we got to do this weekend - both days, such a bonus!
What was so different this time was that his doctor took some of the blame. Turns out, Graham was REALLY immune supressed. Which might mean, if a person sneezes a block away, Graham will catch the virus. He was so supressed, white blood count was really low, that he actually had to recieve a couple of pints of blood. GEEZ! Poor guy did feel bad. He's also on this new med that does a number on his stomach. Cystic Fibrosis + Med = not fun for Graham. These past few weeks have not been fun for him, it was almost like a blast from the pretransplant past.
Right now we are waiting on his doctor to come back from vacation and review his latest cultures (done yesterday). Dr. Rosenblatt is wanting Graham to be COMPLETELY clear of all illness before he is sent home. This is a good thing, this is a good thing, this is a good thing...
With RSV he had to do the same treatment he did for the Flu, with IV antibiotics included. Six hours of treatment, two hours break...repeated for 18 treatments. No one but nurses in hazmat suits and doctors allowed in the room. We hate it, we all (Jordan, Graham, and I) start really missing each other and look forward to the weekend where Jordan and I can sneak in during his 2 hours break. Which we got to do this weekend - both days, such a bonus!
What was so different this time was that his doctor took some of the blame. Turns out, Graham was REALLY immune supressed. Which might mean, if a person sneezes a block away, Graham will catch the virus. He was so supressed, white blood count was really low, that he actually had to recieve a couple of pints of blood. GEEZ! Poor guy did feel bad. He's also on this new med that does a number on his stomach. Cystic Fibrosis + Med = not fun for Graham. These past few weeks have not been fun for him, it was almost like a blast from the pretransplant past.
Right now we are waiting on his doctor to come back from vacation and review his latest cultures (done yesterday). Dr. Rosenblatt is wanting Graham to be COMPLETELY clear of all illness before he is sent home. This is a good thing, this is a good thing, this is a good thing...
Tuesday, February 8, 2011
January
After Graham came home from the hospital with his bout with the flu, it never really seemed he got any better. He still coughed and hacked a lot, his stomach was upset and nothing seemed to settle it, and his levels were all out of whack. He went to and from the hospital getting his blood drawn trying to figure out what was going on. One time, all levels were great - the funny part about it, he forgot to change up his meds like they ordered. As soon as he changed them, all levels were high again. To say Graham is a little frustrated about all this would be a BIG understatement. What if they never figure it out? He is still not "released" to go back to work yet and boredom and depression are hitting hard. he really wants to get out and do things, but it seems that we have to cancel plans left and right because of his health. We thought it would be better, easier...but the question of "Is he really going to be OK" looms over us constantly.
Even though Graham was sick as a dog, we did find a way to have some fun. We went to the Fort Worth Stock show and had a blast. Jordan LOVES all the fair rides, and heights DO NOT phase her. I went on the Ferris Wheel with her, I am sweating and holding on to dear life to the middle pole, while griping onto Jordan and she is standing (YES STANDING) on the seat looking out the booth yelling at me, "Mamma, let go of me." Graham and she also we up a really tall slide - and again...she loved it and wanted to do it immediately again. We saw all sorts of animals, rode horses and cows, and looked through all the vendors too. It was nice to get out as a family for the day.
We were also able to go out with friends, something we haven't done in a loooooooong time, and go bowling. Graham - macho man that he is - attempted to go out and bowl as if he hadn't missed a beat. Fell, hurt his knee, and bruised the bottom of his foot. Men. I will say though, it's easy to forget, just 5 short months ago, he couldn't breathe...but baby steps please!
Then we went over to our friends house and had dinner. So much fun! We got so excited over it, we planned the next dinner - super bowl! If you watched any of the news, DFW area got hit hard with a Ice Storm that week before the big game. We took it in stride though. I was out of school all week, Graham isn't working, Jordan stayed home - so again, we just hung out as a family. By Sunday though, Jordan was sick of us - she wanted to go back to school. Guess we can get annoying - haha. We didn't make it to that Super Dinner though. Graham woke up Sunday with a fever (his first since transplant), lung functions down, massive difficulty eating and keeping food in him, and aches as if he did have the flu.
Went in Monday to see Dr. Rosenblatt, and of course - back in the hospital. It's really weird walking in a hospital, saying Hi to everyone and singing in your head the theme song to Cheers ("Where everybody knows your name"). First rough diagnosis was Pneumonia, after tests came back - RSV. Poor guy, back on that annoying breathing treatment where he can't see anyone. I'm dreading having to tell Jordan that we can't go see him. But good news...maybe more snow tomorrow, and another day with no school!
Even though Graham was sick as a dog, we did find a way to have some fun. We went to the Fort Worth Stock show and had a blast. Jordan LOVES all the fair rides, and heights DO NOT phase her. I went on the Ferris Wheel with her, I am sweating and holding on to dear life to the middle pole, while griping onto Jordan and she is standing (YES STANDING) on the seat looking out the booth yelling at me, "Mamma, let go of me." Graham and she also we up a really tall slide - and again...she loved it and wanted to do it immediately again. We saw all sorts of animals, rode horses and cows, and looked through all the vendors too. It was nice to get out as a family for the day.
We were also able to go out with friends, something we haven't done in a loooooooong time, and go bowling. Graham - macho man that he is - attempted to go out and bowl as if he hadn't missed a beat. Fell, hurt his knee, and bruised the bottom of his foot. Men. I will say though, it's easy to forget, just 5 short months ago, he couldn't breathe...but baby steps please!
Then we went over to our friends house and had dinner. So much fun! We got so excited over it, we planned the next dinner - super bowl! If you watched any of the news, DFW area got hit hard with a Ice Storm that week before the big game. We took it in stride though. I was out of school all week, Graham isn't working, Jordan stayed home - so again, we just hung out as a family. By Sunday though, Jordan was sick of us - she wanted to go back to school. Guess we can get annoying - haha. We didn't make it to that Super Dinner though. Graham woke up Sunday with a fever (his first since transplant), lung functions down, massive difficulty eating and keeping food in him, and aches as if he did have the flu.
Went in Monday to see Dr. Rosenblatt, and of course - back in the hospital. It's really weird walking in a hospital, saying Hi to everyone and singing in your head the theme song to Cheers ("Where everybody knows your name"). First rough diagnosis was Pneumonia, after tests came back - RSV. Poor guy, back on that annoying breathing treatment where he can't see anyone. I'm dreading having to tell Jordan that we can't go see him. But good news...maybe more snow tomorrow, and another day with no school!
Friday, January 7, 2011
They said the first year would be tough
I would like to think that since we have been through more than enough (pain, frustrations, waiting, tears, pushing, etc.), that we would be exempt from the rule "First Year is Tough;" but I guess not. As I said in my previous post, Graham (and the rest of us) have been sick since the beginning of December. Well, he got the call Monday morning to come in. Wasn't as bad this time. I don't know if it was because it was more expected this time, if it was because I was at work and not looking forward to an evening with him, or if just deep down, I knew. But luckily, I was able to keep it together...phone call came in the middle of the day and I HATE crying in front of my class.
Graham's culture he did the previous Thursday came back positive for Influenza (how the #&** did he get the Flu!!!) and the only way to treat it, and prevent an Acute Rejection, is to do an intense round of breathing treatments combined with IV antibiotics (glad they figured out that clot mess). Now, when I say intense...holy crow, I mean intense. I rarely feel bad for the guy; I mean, if I did, I'd never have time to think of anything other than him; but this breathing treatment he has to take is RIDICULOUS! First off, there are only a few machines that can actually mix this nice concoction up in the DFW area - and they were already in use. That means, when we got there Monday evening (a whole other ordeal in itself), it wasn't ready for him (neither was the room - took 3.5 hours to get ready, and they wanted him up there at 10 that morning!). So he waited, and waited, and waited. He waited all the way until Wednesday at 3:30 to get his first treatment. All he was doing there was sitting in bed, watching TV - he could've done this at home!
So here's the low down of the treatment: it's some highly toxic mixture that he has to inhale for 6 hours (yes, I said 6), break for 2 hours, then go back and inhale for another 6 hours. He does this process until he has taken 15 treatments (for a total of 5 days). And because of it's toxicity, he's in an isolation room (think exact opposite of padded walled crazy room) where no one is allowed in except doctors and nurses - and just to get in the room, they have to garb up almost as if they are in a Hazmat suit. Our question was...how is it ok for him to breathe this in??? Dr. Rosenblatt struts in wearing normal clothes, Graham's in awe thinking - why don't YOU have to Spongebob up? - and apparently all that this "highly toxic" breathing treatment will do to others is 1) It will stick to your contacts and 2) If you are pregnant, could cause birth defects. But, Jordan and I are still unable to come in and see him - not taking any chances. So during the week, we stay away. Tomorrow (Saturday), however, we are going to try and sneak in on one of those 2 hour breaks. We can't wait. Jordan and I were talking about visiting Daddy as I was putting her to bed, and as I'm typing right now, she's singing as loud as she can in bed - she's so excited! Hopefully she goes to bed soon though, don't want a cranky kid tomorrow.
Graham's culture he did the previous Thursday came back positive for Influenza (how the #&** did he get the Flu!!!) and the only way to treat it, and prevent an Acute Rejection, is to do an intense round of breathing treatments combined with IV antibiotics (glad they figured out that clot mess). Now, when I say intense...holy crow, I mean intense. I rarely feel bad for the guy; I mean, if I did, I'd never have time to think of anything other than him; but this breathing treatment he has to take is RIDICULOUS! First off, there are only a few machines that can actually mix this nice concoction up in the DFW area - and they were already in use. That means, when we got there Monday evening (a whole other ordeal in itself), it wasn't ready for him (neither was the room - took 3.5 hours to get ready, and they wanted him up there at 10 that morning!). So he waited, and waited, and waited. He waited all the way until Wednesday at 3:30 to get his first treatment. All he was doing there was sitting in bed, watching TV - he could've done this at home!
So here's the low down of the treatment: it's some highly toxic mixture that he has to inhale for 6 hours (yes, I said 6), break for 2 hours, then go back and inhale for another 6 hours. He does this process until he has taken 15 treatments (for a total of 5 days). And because of it's toxicity, he's in an isolation room (think exact opposite of padded walled crazy room) where no one is allowed in except doctors and nurses - and just to get in the room, they have to garb up almost as if they are in a Hazmat suit. Our question was...how is it ok for him to breathe this in??? Dr. Rosenblatt struts in wearing normal clothes, Graham's in awe thinking - why don't YOU have to Spongebob up? - and apparently all that this "highly toxic" breathing treatment will do to others is 1) It will stick to your contacts and 2) If you are pregnant, could cause birth defects. But, Jordan and I are still unable to come in and see him - not taking any chances. So during the week, we stay away. Tomorrow (Saturday), however, we are going to try and sneak in on one of those 2 hour breaks. We can't wait. Jordan and I were talking about visiting Daddy as I was putting her to bed, and as I'm typing right now, she's singing as loud as she can in bed - she's so excited! Hopefully she goes to bed soon though, don't want a cranky kid tomorrow.
Tuesday, January 4, 2011
November through December
Well, I told myself that I would at least try and post once a month; update on how we are living our lives - the good, the bad and the definitely ugly. We had an amazing Thanksgiving. Graham got out of the hospital, clot free and on even more meds, and was able to relax and have fun that week. It was so great to see him get down and play with all our nieces and our nephew. He and the littlest Claire, have formed a cute little bond of "chilling."
Then December came and the family was sick constantly. We were all hacking, moaning, not sleeping...but no concerns really came from Dr. Rosenblatt, so we kept on going (meaning: Graham kept running Jordan and I everywhere - he really is like some weird Energizer Bunny now). For those unfamiliar with Graham, he's been nick named "Scrooge" when Christmas time comes around. But let me just tell you...his heart, not lungs, must've grown 3 sizes this year because he not only had most of his shopping done by the 2nd week in December, he was getting excited about stuffing stockings and putting together all the "Santa" toys. On Christmas Eve, after Jordan had gone to bed, he was telling ME how to arranged the Santa toys and making sure only a bite or two was bitten out of each cookie.
It was about the third week that Graham started to get a little tired; slowing down on all our errands and shopping. We went and saw Santa in Downtown Fort Worth...Jordan was sooooo excited! She talked about him and what she was going to tell him all the way there. When we got there, we were the only ones and she was able to sit on his lap for 5 minutes! But that WAS NOT enough for our Princess, she was a little hacked that she got so few minutes with the Man of the Month and that he didn't bring Rudolf. But we only went to eat lunch afterwards, very weird for new lung Graham.
We alternate Christmas and Thanksgiving with our families, so this year we were with Graham's side of the family. And Graham's Aunt and Uncle just moved near us and we were able to stay home for the first time. It was so much fun. We were able to start our own traditions from Church, food, Santa, etc. It was very memorable - and in a good way too! If you can imagine, Graham actually helped cook Christmas breakfast; I am actually still in shock - and it was VERY good! We will definitely keep that tradition going. Sad to report though, with all the excitement and fun (especially on Jordan's end) Graham seemed to hit a brick wall Christmas Morning. He barely even moved, just felt like crap all day - even popping a few pain pills he never even use to imagine taking. That Monday he went in to the doctor for one of the longest visits ever. Leaving around 6:30 in the morning, he didn't return until 7:00 that night - I WAS FREAKING OUT! I was mad (where the hell was he and why hadn't he called), sad (what is going on with him and why hadn't he called), impatient (why hadn't he called), and slightly irritated (who else has he called besides me)....oh the thoughts that go through a woman's head.
When he finally got to see Dr. Rosenblatt he was faced with the first of the bad news. The culture they took from his lungs at the last visit tested positive for "Influenza" (I have learned that Influenza means so much more than "Flu"). But since he showed no other signs, they just sent him home and didn't worry about anything, remember how tired we was becoming???? So they needed to take another culture - this time from his nose - and if it was positive again, he'd have to stay in the hospital for minimum 5 days (*&^%(@&%()@ - aren't we done with this????). So, they got a culture from him, did a scan of his lungs, gallbladder, liver, and a few more tests - what's 5 more when you are already doing 10? Because not only was he feeling tired, his liver functions were high, blood sugar high, he had sludge in his gallbladder (???), and over all, felt like crap. Test results were to come back in 2 days, so all he had to do was wait - bad news for Energizer Bunny.
Wednesday the doctors office called, they messed up his culture - first it was lost, then they tested for the wrong thing...so he had to return to Dallas on Thursday to start this process all over. When Dr. Rosenblatt called the orders in (on Thursday) they informed him that they will not be working on New Year's Eve or Day - Rosenblatt then informed them that yes they will, even if he has to come up and do it himself (I really do love that guy!). But no call was made to Graham. We had fun together on New Year's Eve, had another great Christmas with my side of the Family (and got to watch Graham hang with his Claire and play with Grant - melts my heart every time), and went on through the weekend thinking everything was fine. HA!
Then December came and the family was sick constantly. We were all hacking, moaning, not sleeping...but no concerns really came from Dr. Rosenblatt, so we kept on going (meaning: Graham kept running Jordan and I everywhere - he really is like some weird Energizer Bunny now). For those unfamiliar with Graham, he's been nick named "Scrooge" when Christmas time comes around. But let me just tell you...his heart, not lungs, must've grown 3 sizes this year because he not only had most of his shopping done by the 2nd week in December, he was getting excited about stuffing stockings and putting together all the "Santa" toys. On Christmas Eve, after Jordan had gone to bed, he was telling ME how to arranged the Santa toys and making sure only a bite or two was bitten out of each cookie.
It was about the third week that Graham started to get a little tired; slowing down on all our errands and shopping. We went and saw Santa in Downtown Fort Worth...Jordan was sooooo excited! She talked about him and what she was going to tell him all the way there. When we got there, we were the only ones and she was able to sit on his lap for 5 minutes! But that WAS NOT enough for our Princess, she was a little hacked that she got so few minutes with the Man of the Month and that he didn't bring Rudolf. But we only went to eat lunch afterwards, very weird for new lung Graham.
We alternate Christmas and Thanksgiving with our families, so this year we were with Graham's side of the family. And Graham's Aunt and Uncle just moved near us and we were able to stay home for the first time. It was so much fun. We were able to start our own traditions from Church, food, Santa, etc. It was very memorable - and in a good way too! If you can imagine, Graham actually helped cook Christmas breakfast; I am actually still in shock - and it was VERY good! We will definitely keep that tradition going. Sad to report though, with all the excitement and fun (especially on Jordan's end) Graham seemed to hit a brick wall Christmas Morning. He barely even moved, just felt like crap all day - even popping a few pain pills he never even use to imagine taking. That Monday he went in to the doctor for one of the longest visits ever. Leaving around 6:30 in the morning, he didn't return until 7:00 that night - I WAS FREAKING OUT! I was mad (where the hell was he and why hadn't he called), sad (what is going on with him and why hadn't he called), impatient (why hadn't he called), and slightly irritated (who else has he called besides me)....oh the thoughts that go through a woman's head.
When he finally got to see Dr. Rosenblatt he was faced with the first of the bad news. The culture they took from his lungs at the last visit tested positive for "Influenza" (I have learned that Influenza means so much more than "Flu"). But since he showed no other signs, they just sent him home and didn't worry about anything, remember how tired we was becoming???? So they needed to take another culture - this time from his nose - and if it was positive again, he'd have to stay in the hospital for minimum 5 days (*&^%(@&%()@ - aren't we done with this????). So, they got a culture from him, did a scan of his lungs, gallbladder, liver, and a few more tests - what's 5 more when you are already doing 10? Because not only was he feeling tired, his liver functions were high, blood sugar high, he had sludge in his gallbladder (???), and over all, felt like crap. Test results were to come back in 2 days, so all he had to do was wait - bad news for Energizer Bunny.
Wednesday the doctors office called, they messed up his culture - first it was lost, then they tested for the wrong thing...so he had to return to Dallas on Thursday to start this process all over. When Dr. Rosenblatt called the orders in (on Thursday) they informed him that they will not be working on New Year's Eve or Day - Rosenblatt then informed them that yes they will, even if he has to come up and do it himself (I really do love that guy!). But no call was made to Graham. We had fun together on New Year's Eve, had another great Christmas with my side of the Family (and got to watch Graham hang with his Claire and play with Grant - melts my heart every time), and went on through the weekend thinking everything was fine. HA!
Wednesday, November 24, 2010
Sick x 3
Well, it happened, we are all sick with colds. And if I were one to point fingers, which I'm not, Graham had it first. I do have to say, it's really weird watching and hearing him cough again. Before, I would get some dirty looks from passer-byers when I was doing nothing for him as he looked like he was dying from his regular cough. For those of you who have never witnessed a CF coughing spell, they cough for about 30 - 60 seconds, turn purple, and are gasping for air. Yes, the first couple of years into our relationship, I would get all concerned, rub his back, (freak out in my head) but learned that there was really nothing I could do, that this was normal. Plus, he really hated those who asked if he was ok, so I learned to back off. Rubber neckers however, they would always give him either sympathetic looks or phrases and give me an evil glare as I played with either my phone, food, or whatever was around.
Now, it's a different story all together, he's NOT supposed to be coughing like that anymore! The other day, he sat on Jordan's bed and did one of his classic turn purple, cough for 30 - 60 seconds, spells. And right then, I felt like one of those onlookers, I didn't know what to do...I gave him sympathetic words and looks. I felt so bad for him. WHY CAN'T I JUST LEAVE MY GERMS AT WORK, and Jordan's at the Daycare!!! So the plan was, disinfect the entire house. Would have been great, but now I'm sick (Jordan too - that means Mommy is up at all hours of the night), and I feel like doing almost nothing. And on Vacation too! UGH!
Graham is over it, except for something called "Post Nasal Drip" and he hacks and coughs all the time. Jordan is on antibiotics for an ear infection, and I'm drowning myself in NyQuil and DayQuil to get myself through the day. Oh and Roscoe still gets ointment in his eye 3-4 times daily. God, Please keep Bocephus healthy, no more sickies!!! It's getting annoying!
Graham went to clinic on Monday and got a mixture of good and bad news. His lung functions are up to 66% and his potassium level is good. His Coumadin levels are not where they want them, so he had to be careful not to get cut, or it would've been a bleeder. And his lungs were a sounded a bit rattle-ey (hey, if the doctor can use that word, so can I). I can't tell you how nervous I was that he would not be coming home again. Luckily though, Dr. Rosenblatt just wanted to do a bronchoscope on him to see how everything looks and clear him out a little. And that's where he is today. He had to be there before the sun was even up at 6:00 am. His Mom just took him to work and since he'll be done at Noon, she'll just bring him on home too. I will post soon on the results, fingers crossed everything looks great and once Graham's lungs are nice and unclogged, he'll feel better and cough less.
Goal: To be healthy by tomorrow, Thanksgiving. Will be pumping Jordan and I with LOTS of Vitamin C. We wish a HAPPY THANKSGIVING to everyone!
Now, it's a different story all together, he's NOT supposed to be coughing like that anymore! The other day, he sat on Jordan's bed and did one of his classic turn purple, cough for 30 - 60 seconds, spells. And right then, I felt like one of those onlookers, I didn't know what to do...I gave him sympathetic words and looks. I felt so bad for him. WHY CAN'T I JUST LEAVE MY GERMS AT WORK, and Jordan's at the Daycare!!! So the plan was, disinfect the entire house. Would have been great, but now I'm sick (Jordan too - that means Mommy is up at all hours of the night), and I feel like doing almost nothing. And on Vacation too! UGH!
Graham is over it, except for something called "Post Nasal Drip" and he hacks and coughs all the time. Jordan is on antibiotics for an ear infection, and I'm drowning myself in NyQuil and DayQuil to get myself through the day. Oh and Roscoe still gets ointment in his eye 3-4 times daily. God, Please keep Bocephus healthy, no more sickies!!! It's getting annoying!
Graham went to clinic on Monday and got a mixture of good and bad news. His lung functions are up to 66% and his potassium level is good. His Coumadin levels are not where they want them, so he had to be careful not to get cut, or it would've been a bleeder. And his lungs were a sounded a bit rattle-ey (hey, if the doctor can use that word, so can I). I can't tell you how nervous I was that he would not be coming home again. Luckily though, Dr. Rosenblatt just wanted to do a bronchoscope on him to see how everything looks and clear him out a little. And that's where he is today. He had to be there before the sun was even up at 6:00 am. His Mom just took him to work and since he'll be done at Noon, she'll just bring him on home too. I will post soon on the results, fingers crossed everything looks great and once Graham's lungs are nice and unclogged, he'll feel better and cough less.
Goal: To be healthy by tomorrow, Thanksgiving. Will be pumping Jordan and I with LOTS of Vitamin C. We wish a HAPPY THANKSGIVING to everyone!
Wednesday, November 17, 2010
And he's back home again!
Whew, and he came home just in time. I think Jordan and I were on the brink of massive temper tantrum because of how much we missed him at home. Going up to the Hospital doesn't even come close to satisfying us. Poor Roscoe, he got so excited he ran smack into a wall because he couldn't see it.
Apparently Graham's Kidneys are not excreting potassium, so it just keeps building up and up. So what are they going to do for him? More pills. I guess when you are taking roughly 60 pills a day, what's a dozen more? If it helps and fixes him so we don't have to worry about Heart issues, fine by us - he likes apple juice anyway, gives him an excuse to take another drink.
He goes back on Friday to check his levels again. Fingers crossed they are fine, we have big plans starting Friday evening. Date night, sleep in, Golf, sleep in, catch up on all the Jersey Shore episodes we have never seen, sleep in...oh the possibilities when I have a week off for Thanksgiving and Jordan is with the Grandparents for the weekend.
I have had a mounting list of things I am thankful for this holiday season, but I am DEFINITELY thankful my hubby is home to help us relax this week.
Apparently Graham's Kidneys are not excreting potassium, so it just keeps building up and up. So what are they going to do for him? More pills. I guess when you are taking roughly 60 pills a day, what's a dozen more? If it helps and fixes him so we don't have to worry about Heart issues, fine by us - he likes apple juice anyway, gives him an excuse to take another drink.
He goes back on Friday to check his levels again. Fingers crossed they are fine, we have big plans starting Friday evening. Date night, sleep in, Golf, sleep in, catch up on all the Jersey Shore episodes we have never seen, sleep in...oh the possibilities when I have a week off for Thanksgiving and Jordan is with the Grandparents for the weekend.
I have had a mounting list of things I am thankful for this holiday season, but I am DEFINITELY thankful my hubby is home to help us relax this week.
Monday, November 15, 2010
Huh?
Imagine: Sitting in bed, relaxing, thinking...I might get to go home today - home, where I want to be more than anywhere else in the world. Frustrated at the events that have taken place in the last week. Frustrated that there was actually nothing you could do to prevent them, and almost nothing you could do to prevent them again. But nonetheless, you feel completely fine. Then over the loud speaker you hear an all call RRT to room 1005, RRT to room 1005. You realize, hey, that's me...then in comes every nurse, doctor, tech available rushing into your room.
Yep, that was Graham this morning. Graham's Potassium Levels were so high he was at risk for Cardiac Arrest. They poked and prodded him, drew more blood and made him drink some nasty tasting medicine, and now is hooked back up to a heart monitor. The scary part about all this, he couldn't feel a thing. He felt completely fine. How are we to know now when he needs emergency care before it's too late?
He was given a list today of all the foods that are high in potassium. I do believe that the list for foods that are not high in potassium is much smaller, and leaves no guess work. Chicken and rice, I think that's it. But then again, he still has to watch his sodium too.
So here we are again, watching levels...waiting for the doctor to say the magic words: "You may go home." I really don't want him going home before they fix his problems though. I would like him home safe and sound please.
Yep, that was Graham this morning. Graham's Potassium Levels were so high he was at risk for Cardiac Arrest. They poked and prodded him, drew more blood and made him drink some nasty tasting medicine, and now is hooked back up to a heart monitor. The scary part about all this, he couldn't feel a thing. He felt completely fine. How are we to know now when he needs emergency care before it's too late?
He was given a list today of all the foods that are high in potassium. I do believe that the list for foods that are not high in potassium is much smaller, and leaves no guess work. Chicken and rice, I think that's it. But then again, he still has to watch his sodium too.
So here we are again, watching levels...waiting for the doctor to say the magic words: "You may go home." I really don't want him going home before they fix his problems though. I would like him home safe and sound please.
Sunday, November 14, 2010
Faith
I've always believed that Faith is a personal thing, to not judge what others think or believe. But I will say, I've always been frustrated at those who don't believe in anything. This whole transplant process has really been an eye opening experience for me in the area of Faith. Before it all began, I was a strong Christian who prayed regularly and tried to at least watch a Church on TV if I didn't make it to our Church on Sunday Morning. Graham on the other hand questioned a lot, and I never understood why.
Once Graham went on the list, and he increasingly became more and more sick, the strangest thing happened. Graham's Faith became very strong, regularly praying and watching Church on TV; where as my Faith began to fade. I was the one questioning what God's path for us was, never thinking God didn't exist, but thinking God had it out for me. Why would he let an amazing person be misunderstood, why would he let an amazing father slowly die a painful death and not allow his daughter to ever truly know him. Then transplant came, and again, Why did Graham have to struggle so hard in recovery? Why did Jordan have to get sick when Graham finally got to come home? These are just a few of the questions (tips of my everlasting ice burg) and frustrations I had...and you know what's weird, I got my answers.
1) Graham's Faith has become so strong, that he helped pull me out of my darkest times. 2) God didn't just answer me once, but made sure there were signs EVERYWHERE I turned. 3) I started to slow down, and figure out the silver linings of everything. And 4) I now fully understand where Graham was and why he believed what he believed.
From sermons speaking of God still loves you and thinks of you when things are not going right, to a sign at Debbie and 360 saying almost the same thing. There was an article in people about a man losing his entire family, yet he still goes on, honoring them everyday. Jordan, one of the most perfect angels. Everyone of our family and friends who have reached out through texts, flowers, support, prayers, and aid. I get it now, I get it all.
If Graham didn't stay in the hospital for 5 weeks, he'd be in a home in Dallas, not with Nurses and Doctors visiting him daily. He was right where he was supposed to be. Now, I don't understand this latest bump in the road, but I now have Faith that God does and will help up through it.
Thank you to everyone again.."I Thank my God every time I remember you, constantly praying with joy in everyone of my prayers for all of you." Philippians 1:3-4
Once Graham went on the list, and he increasingly became more and more sick, the strangest thing happened. Graham's Faith became very strong, regularly praying and watching Church on TV; where as my Faith began to fade. I was the one questioning what God's path for us was, never thinking God didn't exist, but thinking God had it out for me. Why would he let an amazing person be misunderstood, why would he let an amazing father slowly die a painful death and not allow his daughter to ever truly know him. Then transplant came, and again, Why did Graham have to struggle so hard in recovery? Why did Jordan have to get sick when Graham finally got to come home? These are just a few of the questions (tips of my everlasting ice burg) and frustrations I had...and you know what's weird, I got my answers.
1) Graham's Faith has become so strong, that he helped pull me out of my darkest times. 2) God didn't just answer me once, but made sure there were signs EVERYWHERE I turned. 3) I started to slow down, and figure out the silver linings of everything. And 4) I now fully understand where Graham was and why he believed what he believed.
From sermons speaking of God still loves you and thinks of you when things are not going right, to a sign at Debbie and 360 saying almost the same thing. There was an article in people about a man losing his entire family, yet he still goes on, honoring them everyday. Jordan, one of the most perfect angels. Everyone of our family and friends who have reached out through texts, flowers, support, prayers, and aid. I get it now, I get it all.
If Graham didn't stay in the hospital for 5 weeks, he'd be in a home in Dallas, not with Nurses and Doctors visiting him daily. He was right where he was supposed to be. Now, I don't understand this latest bump in the road, but I now have Faith that God does and will help up through it.
Thank you to everyone again.."I Thank my God every time I remember you, constantly praying with joy in everyone of my prayers for all of you." Philippians 1:3-4
Saturday, November 13, 2010
Interesting Week...to say the least
Well, Graham is back in the hospital...to find the silver lining...NOT for a rejection! We were trucking along, in pure bliss, when we decided to order Chinese take out. The following day, Graham woke up swollen, like he was towards the end of his hospital stay. We thought, "That's weird, must be the sodium." So the real geniuses that we are, we ate Mexican food, I made Jambalaya (sausage, ham, chicken broth - sodium ridden) and by Tuesday, he woke up with his eyes swollen shut. Had to be the sodium, right?
We had big plans for the weekend, a childhood friends wedding, and we both really wanted to get out of the house leaving Jordan safely at home. But by Saturday, his swelling hadn't changed (even with us eating sodium free all week). Luckily, swelling went down my the evening and we headed out all dressed up to have fun. And boy did we ever! Vice President Biden was in attendance, and it was pretty cool getting to hang out with him. Graham was excited that a Secret Service Agent liked his truck (big eye roll). We hung out with my brothers and a friend I hadn't seen in awhile and left happy as larks. Graham had spoken with the doctor on Friday, and just as precaution, he wanted to see him in clinic on Monday.
So on Monday, he went through his normal schedule: blood work, physical therapy, PT's, but then they added another test (and yep, the name has completely escaped me!). The doctor who ran the test came out and told Graham to sit in the wheelchair and not move again. Turns out, Graham had a massive clot in his right jugular, and a minor clot somewhere in his chest. He called me around 4:30, I have my phone hooked up to my speakers in my car, when he told Jordan and I that he was being admitted, we both started crying. We finally had our Man back and now he's gone again. Poor Jordan just screamed for 30 minutes (until I could get her McDonald's - always cheers the kid up), she knows what "hospital" means, but doesn't understand why.
Turns out, Graham had all the signs of SVC Syndrome. In layman terms, there is an obstruction (in Graham's case it was his central line during and after transplant, and also his port) that presses against the vessels that connect the chest to the head, and then causes clots. So they had a plan. First, pump him full of Heparin - thin his blood out enough to get blood flowing and hopefully dissolve clot. Second, have a procedure done where they scope his vein/vessels/arteries to see what is going on. If need be, balloon his vessels to help blood flow. Third, medicate during procedure. Fourth, start Graham on Coumadin, a blood thinner that levels would need to be monitored (why not add another one). And last, put stints in.
After 24 hours of heparin, and no progress he went down to have the procedure done early Wednesday morning. I was at work under the impression this was a quick thing, 4 hours later Graham's Mom finally told me that he was back in his room and that it was nothing what they thought once they got in there.
They found that he did not have SVC Syndrome, but a totally different one. Instead of the vessels connecting chest to head, it was arms to head - and not just one side, but both left and right. And instead of blood clots, they found that they were completely blocked. They were able to get into his right side and balloon those vessels, but not his left. Their only answer was he needed stints put in both sides and needed to remove his port; the consequence...they would be ruining any chance of him receiving IVs via port or pic line (his veins in his hand or arms have never been able to keep with regular IVs). In a perfect world with no rejection, illness, accidents, etc. this would be fine. But if we were ever in a situation that Graham needed IV antibiotics fast, did we really have the time for them to sit and think on creative ways to administer them to him? Yes, if there were no other option, but are there other options?
I was so tense all day long, by the time I could relax, I felt as if I was in a car crash - ached all over. Jordan and I went to see him - she was so excited, she missed him so much. Graham was so tired, but he was already looking better. Dr. Rosenblatt came in, we were talking about the wedding and I began to show him pictures. Where everyone on Saturday night thought he looked so great, Dr. Rosenblatt was thinking how awful he looked (it's all about perspective I guess). He took my phone and began showing the nurses, teaching hospital - signs of clots - ha! When we began talking about stints, you could see the how uneasy Dr. Rosenblatt was. He didn't like the fact that it would be difficult for Graham to get IVs either. But the other doctors were still pushing it. This was all on our 3rd Wedding Anniversary - I can think of many better ways to spend it. But at least we were together.
Thursday came, and still no word when Graham might be able to come home; but the decision was made...not stints. If everything works right - the ballooning, Coumadin, Heparin, Graham should have no more problems with clots. No Clots = No Stints. No Stints = possible IVs. I feel better. This world is a scary place!
So Day 6 in the hospital today and Graham needed a pint of blood - platelets were low, hopefully because of meds. Jordan and I met my parents and Aunt Kim up there and we had a blast! The blood really perked him up, I think we did too. He is so tired and frustrated, he wants a break so bad. And he deserves it! Supposedly he needs his Coumadin levels a 2.0 and then maybe he can come home. They are only at 0.9, ugh.
We had big plans for the weekend, a childhood friends wedding, and we both really wanted to get out of the house leaving Jordan safely at home. But by Saturday, his swelling hadn't changed (even with us eating sodium free all week). Luckily, swelling went down my the evening and we headed out all dressed up to have fun. And boy did we ever! Vice President Biden was in attendance, and it was pretty cool getting to hang out with him. Graham was excited that a Secret Service Agent liked his truck (big eye roll). We hung out with my brothers and a friend I hadn't seen in awhile and left happy as larks. Graham had spoken with the doctor on Friday, and just as precaution, he wanted to see him in clinic on Monday.
So on Monday, he went through his normal schedule: blood work, physical therapy, PT's, but then they added another test (and yep, the name has completely escaped me!). The doctor who ran the test came out and told Graham to sit in the wheelchair and not move again. Turns out, Graham had a massive clot in his right jugular, and a minor clot somewhere in his chest. He called me around 4:30, I have my phone hooked up to my speakers in my car, when he told Jordan and I that he was being admitted, we both started crying. We finally had our Man back and now he's gone again. Poor Jordan just screamed for 30 minutes (until I could get her McDonald's - always cheers the kid up), she knows what "hospital" means, but doesn't understand why.
Turns out, Graham had all the signs of SVC Syndrome. In layman terms, there is an obstruction (in Graham's case it was his central line during and after transplant, and also his port) that presses against the vessels that connect the chest to the head, and then causes clots. So they had a plan. First, pump him full of Heparin - thin his blood out enough to get blood flowing and hopefully dissolve clot. Second, have a procedure done where they scope his vein/vessels/arteries to see what is going on. If need be, balloon his vessels to help blood flow. Third, medicate during procedure. Fourth, start Graham on Coumadin, a blood thinner that levels would need to be monitored (why not add another one). And last, put stints in.
After 24 hours of heparin, and no progress he went down to have the procedure done early Wednesday morning. I was at work under the impression this was a quick thing, 4 hours later Graham's Mom finally told me that he was back in his room and that it was nothing what they thought once they got in there.
They found that he did not have SVC Syndrome, but a totally different one. Instead of the vessels connecting chest to head, it was arms to head - and not just one side, but both left and right. And instead of blood clots, they found that they were completely blocked. They were able to get into his right side and balloon those vessels, but not his left. Their only answer was he needed stints put in both sides and needed to remove his port; the consequence...they would be ruining any chance of him receiving IVs via port or pic line (his veins in his hand or arms have never been able to keep with regular IVs). In a perfect world with no rejection, illness, accidents, etc. this would be fine. But if we were ever in a situation that Graham needed IV antibiotics fast, did we really have the time for them to sit and think on creative ways to administer them to him? Yes, if there were no other option, but are there other options?
I was so tense all day long, by the time I could relax, I felt as if I was in a car crash - ached all over. Jordan and I went to see him - she was so excited, she missed him so much. Graham was so tired, but he was already looking better. Dr. Rosenblatt came in, we were talking about the wedding and I began to show him pictures. Where everyone on Saturday night thought he looked so great, Dr. Rosenblatt was thinking how awful he looked (it's all about perspective I guess). He took my phone and began showing the nurses, teaching hospital - signs of clots - ha! When we began talking about stints, you could see the how uneasy Dr. Rosenblatt was. He didn't like the fact that it would be difficult for Graham to get IVs either. But the other doctors were still pushing it. This was all on our 3rd Wedding Anniversary - I can think of many better ways to spend it. But at least we were together.
Thursday came, and still no word when Graham might be able to come home; but the decision was made...not stints. If everything works right - the ballooning, Coumadin, Heparin, Graham should have no more problems with clots. No Clots = No Stints. No Stints = possible IVs. I feel better. This world is a scary place!
So Day 6 in the hospital today and Graham needed a pint of blood - platelets were low, hopefully because of meds. Jordan and I met my parents and Aunt Kim up there and we had a blast! The blood really perked him up, I think we did too. He is so tired and frustrated, he wants a break so bad. And he deserves it! Supposedly he needs his Coumadin levels a 2.0 and then maybe he can come home. They are only at 0.9, ugh.
Monday, October 25, 2010
Why Not Add One More...
Yes, I know, it's been awhile. Not posting my excuses. Graham has been doing great! Everytime he goes to the doctor, only good things come out of it. So good in fact (still crying over this one) that Dr. Rosenblatt is NOT renewing his handicap placard. No more close movie spots, Wal-Mart parking, and what hurts the worse, no more close parking during the holiday season!!! His current placard ends in November (what!!!!), all because the Dr. says, "He needs more exercise." Please, Wifey needs to shop too! But, I will trade Graham's health over 2 miles of walking to the mall.
Graham went again to clinic today. Lung functions were up to 60% (omg!!!), every little step is soooo awesome. His levels of anit-rejection meds have been all crazy though. Friday they were really high, and today were really low. Don't know if they will ever level out, but what's changing the medicine box every few days when you get a whole new lease on life.
And because of this whole new lease on life, Graham has become the energizer bunny. Up at the crack of dawn, running and playing and doing whatever until he goes down around 10. This last week, he's walking around moping, thinking he's hit this "brick wall" and has the doctor test him for colds, infections, etc. when all it was...HE WAS TIRED! Hello...people do need rest. New lungs or not, you can't just go and go and go. Lesson learned, we think. But again, he was dragging wife and child all over the place over the weekend. We had a great weekend planned: breakfast at "Our Place," pumpkin patch with cousins, then birthday cook out for our sister-in-law (this was just Saturday). We had a great breakfast and were on our way to the patch when we learned that it was closed. This was not ok for Graham...he began looking up more pumpkin patches and didn't settle until we found one. Thankfully it was right by our house. By the time we got there though, it closed due to weather. So we headed on down to Cleburne and made a day playing with my side of the family. We talked, played, ate, carved pumpkins (Graham's was NOT G Rated...those that know him, most likely received the picture) and had a blast. Thank you Andrea for such a fun party! On Sunday, we went to Church for the first time as a family in a very long time. It was so nice. I have been waiting for this day for a really long time. We get in our Sunday best, get to church, sit in the pew and Jordan looks at me, "Momma, I need to go potty." Are you kidding me...ugh - I decided to wait. Five minutes later we smell her toot. I ask if she still needs to go and she says yes. So we depart. After a successful potty trip we are on our way back down the aisle, pastor giving announcements (so congregation quiet) and Jordan starts hollering, "DADDY, I POO POOED IN THE POTTY!" at least 3 times. Several people congratulated her - Welcome Back Johnston's to Church!
After church we met our friends at the Pumpkin Patch and J had a blast. She bounced, and mazed, and rode a pony...she listened to stories, rode a hay ride and a Daddy piggy back ride. The highlight was picking her own pumpkin. We had such a great weekend! I would have NEVER imagined doing all this pre-transplant and still having Graham up and sitting next to me (with energy) today.
But sadly, my duties of care taker are not over. Our poor little Boston Terrier might lose his eyeball :( He and our other dog, who is significantly bigger, were playing. Bo accidentally bit Roscoe's eye. Roscoe is blind, and we are now medicating the fool out of his eye trying to save it. Thank you to Cassie for driving and helping us take care of our sweet boy. Poor dogs can't play with each other anymore.
But it's been a great couple of weeks. His Aunt Sharon came and helped out the first week I went back to school. Thank you sooo much! She drove him all over the metroplex...doctors, cars, alarms. Probably more than she bargained for, but they had some great times. And now his Dad is here. Graham has been released to do almost everything (doctor even says for a haircut too - hahahaha), but the company is nice to have - so thank you Dad!
Graham went again to clinic today. Lung functions were up to 60% (omg!!!), every little step is soooo awesome. His levels of anit-rejection meds have been all crazy though. Friday they were really high, and today were really low. Don't know if they will ever level out, but what's changing the medicine box every few days when you get a whole new lease on life.
And because of this whole new lease on life, Graham has become the energizer bunny. Up at the crack of dawn, running and playing and doing whatever until he goes down around 10. This last week, he's walking around moping, thinking he's hit this "brick wall" and has the doctor test him for colds, infections, etc. when all it was...HE WAS TIRED! Hello...people do need rest. New lungs or not, you can't just go and go and go. Lesson learned, we think. But again, he was dragging wife and child all over the place over the weekend. We had a great weekend planned: breakfast at "Our Place," pumpkin patch with cousins, then birthday cook out for our sister-in-law (this was just Saturday). We had a great breakfast and were on our way to the patch when we learned that it was closed. This was not ok for Graham...he began looking up more pumpkin patches and didn't settle until we found one. Thankfully it was right by our house. By the time we got there though, it closed due to weather. So we headed on down to Cleburne and made a day playing with my side of the family. We talked, played, ate, carved pumpkins (Graham's was NOT G Rated...those that know him, most likely received the picture) and had a blast. Thank you Andrea for such a fun party! On Sunday, we went to Church for the first time as a family in a very long time. It was so nice. I have been waiting for this day for a really long time. We get in our Sunday best, get to church, sit in the pew and Jordan looks at me, "Momma, I need to go potty." Are you kidding me...ugh - I decided to wait. Five minutes later we smell her toot. I ask if she still needs to go and she says yes. So we depart. After a successful potty trip we are on our way back down the aisle, pastor giving announcements (so congregation quiet) and Jordan starts hollering, "DADDY, I POO POOED IN THE POTTY!" at least 3 times. Several people congratulated her - Welcome Back Johnston's to Church!
After church we met our friends at the Pumpkin Patch and J had a blast. She bounced, and mazed, and rode a pony...she listened to stories, rode a hay ride and a Daddy piggy back ride. The highlight was picking her own pumpkin. We had such a great weekend! I would have NEVER imagined doing all this pre-transplant and still having Graham up and sitting next to me (with energy) today.
But sadly, my duties of care taker are not over. Our poor little Boston Terrier might lose his eyeball :( He and our other dog, who is significantly bigger, were playing. Bo accidentally bit Roscoe's eye. Roscoe is blind, and we are now medicating the fool out of his eye trying to save it. Thank you to Cassie for driving and helping us take care of our sweet boy. Poor dogs can't play with each other anymore.
But it's been a great couple of weeks. His Aunt Sharon came and helped out the first week I went back to school. Thank you sooo much! She drove him all over the metroplex...doctors, cars, alarms. Probably more than she bargained for, but they had some great times. And now his Dad is here. Graham has been released to do almost everything (doctor even says for a haircut too - hahahaha), but the company is nice to have - so thank you Dad!
Thursday, October 7, 2010
Our Thank Yous
Hopefully from here on out, this Blog will get more and more boring for y'all (just means nothing but progress is going on). I will keep writing because I have found it to be a calming thing for me though. For a quick update: we were here on Monday for all his tests and visits. His blood work came back that almost everything was normal!!! That means kidneys, vitamin levels, lung functions improved to 48%, fluid was slightly reduced so no tap this week, and cholesterol was looking good - he's eating better :) The only thing a little off was his Prograf (anti-rejection med) was slightly low. Remember last week it was toxic high; so they changed his dosage again and sent us on our way. This could be a life long thing of constantly changing his dosage - if you could only see my sweet, OCDesque, husbands face when they told him there might not ever be a set dosage, haha, this bothered him; but he has new lungs, no complaining. Now I want to take sometime to thank everyone - specifically. Thank you notes to come, my mother raised me better than that, but I wanted to share all the great things that others have done for us.
First and Foremost, thank you to everyone who prayed and sent positive, happy thoughts our way. I couldn't imagine doing any of this without God, and your thoughts and prayers certainly gave him a positive influence. Up until his surgery, I wondered if he would ever make it. It was November of last year that a doctor at St. Paul gave him a year to live. Now, doing the math, by that doctors mouth, he didn't have much longer (and come to find out, his favorite doctor had similar thoughts). And then came the surgery, that without the amazing anesthesiologist sweating bullets for 8.5 hours, he wouldn't have made it either. Prayers were definitely answered...THANK YOU!
The Zahradik Family: Thank you for taking in Jordan for that first week. Because of you, our little angel had a warm, happy place she calls her second home to go to. She was happy and didn't think anything of her Mommy and Daddy being gone. I was able to focus all my thoughts on Graham, and never once did I stress and have a bad thought about J. Y'all took her in without question, and considered her your own, we'll never be able to thank you enough.
The McMillin Family: Before there was J, our babies were Bocephus and Roscoe. Without thinking y'all watched over our dogs and not just feed them, but played with them so they didn't get too cooped up. Y'all didn't stop there either, thank you for all the upkeep to our house, cleaning, mowing, Brandon being Handy Manny, and my favorite...all the great distractions Stacy and Kendall gave Jordan and I. In a time I didn't think I could smile much, I smiled A LOT! J and K are so funny. And I'll never forget that Friday night of poster making, paint and masks. We love y'all and thank you sooooo much for everything!
The Rash's: Words will never be able to explain just how much y'all mean to us. No matter how much we begged that y'all really didn't need to be there, y'all came every time no matter the hour and helped pass the time in the worst hours...waiting for those lungs. The second trial will always be my favorite, all of us crammed into that tiny room, "sleeping" in the most awkward positions, and literally laughing through the entire wait. Without y'all, all three waiting periods, would've been horrible...we might've said we could do it without you, but Graham and I agree, we couldn't, you are both members of our immediate family.
Our Families: Thank you for all of your patience this past year. All the "on calls" and vacations on hold, the missed parties, baptisms, births, and graduations. Contrary to popular belief...we REALLY wanted to be at them all. We were so lucky to be at our Cousin's wedding (getting the third degree from the doctor meant nothing), and hopefully can make up for lost time within this next year - get ready, Graham's favorite bathing suit is! Thank y'all also for entertaining us all those times...taking us to eat, shopping, swimming, parks, endless hours of sitting and waiting. We love y'all all so much, and would've never been able to do any of this without y'all.
The Kelly's: I know y'all are family, but all the help y'all have given us over the past couple of weeks needed another note. Thank you for helping J through all of this, she sooo loves y'all and her cousins and we love that everyone is getting to know everyone better. Y'all were amazing distractions for her and will thank y'all for many years to come. Thank you also for all your help with the house, all the set ups of cleaning, moving of furniture, moving it back, mowing and edging our yard, Holly, dinner, phone calls and allowing me to cry, hospital visits that might've scarred your eyes (hahahaha). We love y'all!!!
The Reid's: OMG! Thank you thank you thank you! Because of y'all, we were able to get our house clean enough for Graham to come home and stay home. This was one of the biggest stress relievers and we'll thank you a thousand times before we start over.
Barbara Boulware: We LOVE our good luck pillow cases. They are still on our bed. They brought on a smile when I didn't think I had one. The cowboys and cowgirls fit our personalities well and the horse shoes really brought us some good luck. Thank you also for all the treats and magazines...I had completely forgotten how great Cheez Whiz was - and now I'm keeping a steady supply in the pantry :)
Sam Pettit, Rene Kirchoff, Sondra Thomas, Scott and Kathie, Michelle Meister, Angie Stevens, Tammy Ledesma, Cassie Rash, Rachel Kim, Bryan Kelly, Mom Kelly: Thank you for all the yummy food or gift cards to get food! I didn't realize how hard it would be to care for 2 people and cook at the same time, I tried and cried and am REALLY GRATEFUL for all of y'alls food! It has been wonderful and greatly appreciated! Graham is beginning to put weight back on (wahooooooo) thanks to y'all (so am I, but it's worth it), thanks again.
To all of you for keeping in touch with us...through phone calls, visits, text messages, facebook, emails, cards. I don't think I can put into words how much this has helped us through everything. A big fear of ours has been that because of Graham's health and our lack of being social, we have lost contact with some. So even what you think is a simple text, it gave us a smile and warmed our hearts. It was not just a simple text, card, message...it was sooo much more!
Our families at work: We are the luckiest 2 people to have such supportive and loving co-workers. God really knew what he was doing moving me all over MISD and Graham to Wachovia. We love y’all very much and can’t wait to be back!
To anyone I may have forgotten, it is not lack of appreciation, but my abundance of spacey-ness. We thank everyone who helped us out on this road!
First and Foremost, thank you to everyone who prayed and sent positive, happy thoughts our way. I couldn't imagine doing any of this without God, and your thoughts and prayers certainly gave him a positive influence. Up until his surgery, I wondered if he would ever make it. It was November of last year that a doctor at St. Paul gave him a year to live. Now, doing the math, by that doctors mouth, he didn't have much longer (and come to find out, his favorite doctor had similar thoughts). And then came the surgery, that without the amazing anesthesiologist sweating bullets for 8.5 hours, he wouldn't have made it either. Prayers were definitely answered...THANK YOU!
The Zahradik Family: Thank you for taking in Jordan for that first week. Because of you, our little angel had a warm, happy place she calls her second home to go to. She was happy and didn't think anything of her Mommy and Daddy being gone. I was able to focus all my thoughts on Graham, and never once did I stress and have a bad thought about J. Y'all took her in without question, and considered her your own, we'll never be able to thank you enough.
The McMillin Family: Before there was J, our babies were Bocephus and Roscoe. Without thinking y'all watched over our dogs and not just feed them, but played with them so they didn't get too cooped up. Y'all didn't stop there either, thank you for all the upkeep to our house, cleaning, mowing, Brandon being Handy Manny, and my favorite...all the great distractions Stacy and Kendall gave Jordan and I. In a time I didn't think I could smile much, I smiled A LOT! J and K are so funny. And I'll never forget that Friday night of poster making, paint and masks. We love y'all and thank you sooooo much for everything!
The Rash's: Words will never be able to explain just how much y'all mean to us. No matter how much we begged that y'all really didn't need to be there, y'all came every time no matter the hour and helped pass the time in the worst hours...waiting for those lungs. The second trial will always be my favorite, all of us crammed into that tiny room, "sleeping" in the most awkward positions, and literally laughing through the entire wait. Without y'all, all three waiting periods, would've been horrible...we might've said we could do it without you, but Graham and I agree, we couldn't, you are both members of our immediate family.
Our Families: Thank you for all of your patience this past year. All the "on calls" and vacations on hold, the missed parties, baptisms, births, and graduations. Contrary to popular belief...we REALLY wanted to be at them all. We were so lucky to be at our Cousin's wedding (getting the third degree from the doctor meant nothing), and hopefully can make up for lost time within this next year - get ready, Graham's favorite bathing suit is! Thank y'all also for entertaining us all those times...taking us to eat, shopping, swimming, parks, endless hours of sitting and waiting. We love y'all all so much, and would've never been able to do any of this without y'all.
The Kelly's: I know y'all are family, but all the help y'all have given us over the past couple of weeks needed another note. Thank you for helping J through all of this, she sooo loves y'all and her cousins and we love that everyone is getting to know everyone better. Y'all were amazing distractions for her and will thank y'all for many years to come. Thank you also for all your help with the house, all the set ups of cleaning, moving of furniture, moving it back, mowing and edging our yard, Holly, dinner, phone calls and allowing me to cry, hospital visits that might've scarred your eyes (hahahaha). We love y'all!!!
The Reid's: OMG! Thank you thank you thank you! Because of y'all, we were able to get our house clean enough for Graham to come home and stay home. This was one of the biggest stress relievers and we'll thank you a thousand times before we start over.
Barbara Boulware: We LOVE our good luck pillow cases. They are still on our bed. They brought on a smile when I didn't think I had one. The cowboys and cowgirls fit our personalities well and the horse shoes really brought us some good luck. Thank you also for all the treats and magazines...I had completely forgotten how great Cheez Whiz was - and now I'm keeping a steady supply in the pantry :)
Sam Pettit, Rene Kirchoff, Sondra Thomas, Scott and Kathie, Michelle Meister, Angie Stevens, Tammy Ledesma, Cassie Rash, Rachel Kim, Bryan Kelly, Mom Kelly: Thank you for all the yummy food or gift cards to get food! I didn't realize how hard it would be to care for 2 people and cook at the same time, I tried and cried and am REALLY GRATEFUL for all of y'alls food! It has been wonderful and greatly appreciated! Graham is beginning to put weight back on (wahooooooo) thanks to y'all (so am I, but it's worth it), thanks again.
To all of you for keeping in touch with us...through phone calls, visits, text messages, facebook, emails, cards. I don't think I can put into words how much this has helped us through everything. A big fear of ours has been that because of Graham's health and our lack of being social, we have lost contact with some. So even what you think is a simple text, it gave us a smile and warmed our hearts. It was not just a simple text, card, message...it was sooo much more!
Our families at work: We are the luckiest 2 people to have such supportive and loving co-workers. God really knew what he was doing moving me all over MISD and Graham to Wachovia. We love y’all very much and can’t wait to be back!
To anyone I may have forgotten, it is not lack of appreciation, but my abundance of spacey-ness. We thank everyone who helped us out on this road!
Monday, October 4, 2010
Nothing Can Bring Us Down
We have been having the best days since Friday! Graham finally got to come home to his own home, bed, dogs, FAMILY...and we've just been smiling ever since. Jordan's day on Friday would bring a smile to the saddest person's face. As I picked her up from school I asked her, "Guess who's at your house?" She said, "Daddy?" Daddy's at my house? DADDY'S HOME DADDY'S HOME!" She began screaming in the car and flapping her arms and kicking her feet. When we pulled into the drive way I told her she had to wash her hands really good then she could go see Daddy. She ran into the house chanting, "Must wash hands, go see Daddy; Must wash hands, go see Daddy." And she washed them Good! She sang her whole wash hands song, quickly dried her hands and ran into the bedroom screaming DAAAADDDDDY! It was awesome! She gave him the biggest (softest) hug and it was chaos from there on out. Daddy do this, Daddy do that, Daddy I have trash, Daddy I'm eating...Daddy Daddy Daddy! I can't tell you how happy we all were, my family was finally under one roof.
We went back to the doctor Friday morning for lab work, and by the afternoon he had his new Prograf dosages to take. We were able to give him a shower Friday night and by Sunday he had perfected doing it all by himself (Wahoo! It was hard bathing him and chasing a 2 year old at the same time without me getting wet and trailing water all over the house - all the while our Boston Terrier chasing me and barking at me too).
Friday we also had a nice surprise, our neighbor friends bought poster board and paint for our two girls to make "Welcome Home" signs for Graham...that in itself was hysterical. They had so much fun, and when we came back to the house to give them to Graham, everyone wore masks. Imagine two 2 year olds, covered in paint, giggling and trying to keep the masks on. Made the night even better.
On Saturday, we watched the Longhorns lose to OU...we kind of expected it, and were happy it was a closer game than we predicted, but nonetheless, HATE seeing them lose. However, we were still smiling - Nothing could bring us down :) And you know that time, the time that is the most inconvenient how am I going to fix that now time? Well...our microwave broke, guest toilet is leaking everywhere, freezer blew a circuit and we lost OUR ICE CREAM (but luckily last season's deer meat is still good!); all we did was smile and plan a trip to Lowes (oh and press the reset button). If we could get through the past 6 weeks, pretty sure I can learn how to reheat left overs in the oven. Even though IT IS A PAIN! You never realize how much you use your microwave until it dies on you, and then you wonder what they did in the pre-microwave era!
We are back at the hospital today going through all the different labs, PT, X-Ray, tests and Clinic mambo jambo. Graham is dreading getting his lungs tapped. All I can do is look at him and say "Really? You just went through one of the most painful experiences ever and you are afraid of a needle in the back?" He just smiles and says, "I Know." I'm so glad he's home :)
We went back to the doctor Friday morning for lab work, and by the afternoon he had his new Prograf dosages to take. We were able to give him a shower Friday night and by Sunday he had perfected doing it all by himself (Wahoo! It was hard bathing him and chasing a 2 year old at the same time without me getting wet and trailing water all over the house - all the while our Boston Terrier chasing me and barking at me too).
Friday we also had a nice surprise, our neighbor friends bought poster board and paint for our two girls to make "Welcome Home" signs for Graham...that in itself was hysterical. They had so much fun, and when we came back to the house to give them to Graham, everyone wore masks. Imagine two 2 year olds, covered in paint, giggling and trying to keep the masks on. Made the night even better.
On Saturday, we watched the Longhorns lose to OU...we kind of expected it, and were happy it was a closer game than we predicted, but nonetheless, HATE seeing them lose. However, we were still smiling - Nothing could bring us down :) And you know that time, the time that is the most inconvenient how am I going to fix that now time? Well...our microwave broke, guest toilet is leaking everywhere, freezer blew a circuit and we lost OUR ICE CREAM (but luckily last season's deer meat is still good!); all we did was smile and plan a trip to Lowes (oh and press the reset button). If we could get through the past 6 weeks, pretty sure I can learn how to reheat left overs in the oven. Even though IT IS A PAIN! You never realize how much you use your microwave until it dies on you, and then you wonder what they did in the pre-microwave era!
We are back at the hospital today going through all the different labs, PT, X-Ray, tests and Clinic mambo jambo. Graham is dreading getting his lungs tapped. All I can do is look at him and say "Really? You just went through one of the most painful experiences ever and you are afraid of a needle in the back?" He just smiles and says, "I Know." I'm so glad he's home :)
Thursday, September 30, 2010
He's Free!!!!!
Boy am I regretting waiting so long to write...'cause there's a lot that has on! First and foremost, GRAHAM IS OUT OF THE HOSPITAL!!! Graham went in for his bronchoscope on Monday and woke up without his chest tube! So the waiting for Dr. Rosenblatt to come for his visit began. He experienced a lot of abdominal pain the night before, enough to take Morphine again and he hadn't had that in almost a week; and the concern of the fluid in his right lung and his pnemothorax kept us anxious if he'd go home or not. But the orders finally came in, he got to come home Tuesday!!!
Here in the Johnston family, things don't come easy (and it's rather annoying...just a tiny break please!). Monday, I was doing last minute stocking the fridge shopping when our daughter Jordan started acting funny. Got her home and she had a 101 temp. Ugh, maybe it's a fluke. Give her IB Profin and put her to bed. She then wakes up at 2am with a 102.6 temp - agh. Graham can't come home to that! Take the day off and take her to the doctor. Fortunately it was just a cold, but still, Graham can't come home home, he needs to stay at his mom's for awhile. I can't describe how mad, sad, frustrated, annoyed I was. Here it was supposed to be this happy time, Graham has new lungs and he's getting out after a long 5 weeks (7 if you count the two weeks he was in the hospital prior), but he can't come home and we still can't be around him much.
He did get to come by to pick up some stuff. Jordan was really mad at him at first. Wouldn't talk to him, wanted me to hold her, and she would just bury her head into me when he got close. I don't even know what she thinks and I feel so bad for her. I completely understand her being mad, frustrated, feeling abandoned; I just hope she gets over it smoothly and doesn't remember much of all of this.
Jordan warmed up to him within about 15 minutes and OH MY GOODNESS! It was Daddy come here, Daddy come see my big girl bed, Daddy come play blocks. And in between each sentence, she was hugging his legs. Not going to lie, I was a little nervous about when he had to leave. But she was on such a high, it didn't matter. She got to see her Daddy, and Daddy got to see his girl.
On our first day to hang out together, we had a great time. I decided to take advantage of his disability and play him in Wii Bowling. I kicked his butt 3 games in a row, and rubbed it in (don't judge, I NEVER win anything and he is a really sore winner!). But then he began to win, thank goodness he started to get tired, I'm still up on him :) Then we went and got him a new phone. Ahhhhhhh, so nice to have him back and connected! And that is one more thing he doesn't have to rely on others for too, he has a little more freedom.
His swelling in his arms is still way up; they've finally determined that it is a lymph node problem. He's wearing these compression sleeves and gloves and they seem to be really working for him. All of his muscles are really weak. He walked 3/4 of a mile on Wednesday and today, his shins and back are really hurting. Lucky for him, they gave him a BIG bottle of pain meds and he's ACTUALLY taking them, such a huge step for him!
Today we went to his first post discharge Clinic Appointment. He got his blood drawn, x-rays taken, PFT's (lung functions), and physical therapy showed him no mercy, then finally got up to Clinic to see Dr. Rosenblatt. Very interesting visit. Dr. Rosenblatt revealed to us that he was actually very concerned and worried about Graham Pre-Transplant (nothing that was new to me, I was worried too), but pleased how everything has gone. His labs today were a little bit of concern. His Prograf level (anti-rejection drug) was really high, toxic high, and he's now ordered not to take it again until we talk to them tomorrow. We get to go to Dallas again in the morning. His Kidney levels were also higher. But the big concern was the fluid surrounding his right lung and will probably be drained at our next Clinic visit on Monday. This is done by needle through back with catheter straight into lung cavity, then drain - esh! But needs to be done. What we were most shocked by was his PFTs were only at 45. Now, this is almost double what they were before lung transplant, but we just assumed they would be higher. An average person's lung functions (percentage of lungs being used) is around 80. Graham pre-transplant was sitting in the low 20s. The good news is, it will get higher. The fluid around is lungs is most likely affecting his number, and as he gets stronger and works out more, his number will begin to climb.
It has been a great few days, Graham will hopefully come home to us tomorrow and then I will be walking around with the biggest grin on my face...I still miss him and can't wait to have him home.
Here in the Johnston family, things don't come easy (and it's rather annoying...just a tiny break please!). Monday, I was doing last minute stocking the fridge shopping when our daughter Jordan started acting funny. Got her home and she had a 101 temp. Ugh, maybe it's a fluke. Give her IB Profin and put her to bed. She then wakes up at 2am with a 102.6 temp - agh. Graham can't come home to that! Take the day off and take her to the doctor. Fortunately it was just a cold, but still, Graham can't come home home, he needs to stay at his mom's for awhile. I can't describe how mad, sad, frustrated, annoyed I was. Here it was supposed to be this happy time, Graham has new lungs and he's getting out after a long 5 weeks (7 if you count the two weeks he was in the hospital prior), but he can't come home and we still can't be around him much.
He did get to come by to pick up some stuff. Jordan was really mad at him at first. Wouldn't talk to him, wanted me to hold her, and she would just bury her head into me when he got close. I don't even know what she thinks and I feel so bad for her. I completely understand her being mad, frustrated, feeling abandoned; I just hope she gets over it smoothly and doesn't remember much of all of this.
Jordan warmed up to him within about 15 minutes and OH MY GOODNESS! It was Daddy come here, Daddy come see my big girl bed, Daddy come play blocks. And in between each sentence, she was hugging his legs. Not going to lie, I was a little nervous about when he had to leave. But she was on such a high, it didn't matter. She got to see her Daddy, and Daddy got to see his girl.
On our first day to hang out together, we had a great time. I decided to take advantage of his disability and play him in Wii Bowling. I kicked his butt 3 games in a row, and rubbed it in (don't judge, I NEVER win anything and he is a really sore winner!). But then he began to win, thank goodness he started to get tired, I'm still up on him :) Then we went and got him a new phone. Ahhhhhhh, so nice to have him back and connected! And that is one more thing he doesn't have to rely on others for too, he has a little more freedom.
His swelling in his arms is still way up; they've finally determined that it is a lymph node problem. He's wearing these compression sleeves and gloves and they seem to be really working for him. All of his muscles are really weak. He walked 3/4 of a mile on Wednesday and today, his shins and back are really hurting. Lucky for him, they gave him a BIG bottle of pain meds and he's ACTUALLY taking them, such a huge step for him!
Today we went to his first post discharge Clinic Appointment. He got his blood drawn, x-rays taken, PFT's (lung functions), and physical therapy showed him no mercy, then finally got up to Clinic to see Dr. Rosenblatt. Very interesting visit. Dr. Rosenblatt revealed to us that he was actually very concerned and worried about Graham Pre-Transplant (nothing that was new to me, I was worried too), but pleased how everything has gone. His labs today were a little bit of concern. His Prograf level (anti-rejection drug) was really high, toxic high, and he's now ordered not to take it again until we talk to them tomorrow. We get to go to Dallas again in the morning. His Kidney levels were also higher. But the big concern was the fluid surrounding his right lung and will probably be drained at our next Clinic visit on Monday. This is done by needle through back with catheter straight into lung cavity, then drain - esh! But needs to be done. What we were most shocked by was his PFTs were only at 45. Now, this is almost double what they were before lung transplant, but we just assumed they would be higher. An average person's lung functions (percentage of lungs being used) is around 80. Graham pre-transplant was sitting in the low 20s. The good news is, it will get higher. The fluid around is lungs is most likely affecting his number, and as he gets stronger and works out more, his number will begin to climb.
It has been a great few days, Graham will hopefully come home to us tomorrow and then I will be walking around with the biggest grin on my face...I still miss him and can't wait to have him home.
Saturday, September 25, 2010
Two steps forward...and standing still
Wednesday came all the great changes! The doctors gave Graham Albumin, some wonder drug that pulls all of the fluids out of his veins and tissues and into his body, and a couple of diuretics. Everything started working Tuesday night and by Wednesday morning, he had peed out 12 pounds!!!! When I came to see him Wednesday night, I saw my husband's old handsome face...it was great! He was in much better spirits too. His speech had actual inflection in it and not just monotone unhappiness. He had told his mom that he now thinks he can get better. What a difference 12 pounds makes!
He has since lost a couple more pounds; most of his swelling is all gone. He is only swollen in his arms, chest and stomach. On Wednesday, his left arm was not swollen but right was, I had to laugh a little...it was funny looking. There was a part of me (kind of a big part) that thought he would never look like himself again. But he does, and he feels great mentally...and that makes me so happy!
What I didn't realize is they predict he will leave the hospital weighing about 100 pounds (he came in 110 and that's low for him). This is not how it's supposed to be, he's supposed to FINALLY WEIGH MORE THAN ME! Ugh! But, here's how this goes: 1) His body went through a really big ordeal (duh) and is trying to cope and recover from the surgery; 2) All the swelling has been pressing on his stomach and affecting his appetite - so no eating; and 3) He was on a liquid or mechanical (looks like kitty tuna) diet for 2 1/2 weeks. So of course he's going to lose weight. My goal is to fatten him up when he gets home so I can finally be the little one in the house (I'm dreaming, I know).
He has been sitting in this position since Wednesday...no progress, no digressing. It's not bad, but it's not good that he is progressing. It's annoying. He has also developed a small pneumothorax in his left lung (a small hole). Dr. Rosenblatt has full confidence his body will heal itself. He also wants Graham to come home this week...hopefully get his tube pulled soon and home by mid week. We are taking these words with a grain of salt, but secretly dancing a jig. Jordan and I have already made plans to do nothing but hang out with Daddy next weekend and watch the TX/OU game. We'll see if these plans come true!
He has since lost a couple more pounds; most of his swelling is all gone. He is only swollen in his arms, chest and stomach. On Wednesday, his left arm was not swollen but right was, I had to laugh a little...it was funny looking. There was a part of me (kind of a big part) that thought he would never look like himself again. But he does, and he feels great mentally...and that makes me so happy!
What I didn't realize is they predict he will leave the hospital weighing about 100 pounds (he came in 110 and that's low for him). This is not how it's supposed to be, he's supposed to FINALLY WEIGH MORE THAN ME! Ugh! But, here's how this goes: 1) His body went through a really big ordeal (duh) and is trying to cope and recover from the surgery; 2) All the swelling has been pressing on his stomach and affecting his appetite - so no eating; and 3) He was on a liquid or mechanical (looks like kitty tuna) diet for 2 1/2 weeks. So of course he's going to lose weight. My goal is to fatten him up when he gets home so I can finally be the little one in the house (I'm dreaming, I know).
He has been sitting in this position since Wednesday...no progress, no digressing. It's not bad, but it's not good that he is progressing. It's annoying. He has also developed a small pneumothorax in his left lung (a small hole). Dr. Rosenblatt has full confidence his body will heal itself. He also wants Graham to come home this week...hopefully get his tube pulled soon and home by mid week. We are taking these words with a grain of salt, but secretly dancing a jig. Jordan and I have already made plans to do nothing but hang out with Daddy next weekend and watch the TX/OU game. We'll see if these plans come true!
Monday, September 20, 2010
Waiting...
Not really much has changed since Sunday, Graham is really tired, still swollen, still with chest tube. But there is talk of bigger and better things! Dr. Meyer's wanted to talk to Dr. Rosenblatt on his thoughts on pulling the tube. It is very evident that Dr. Rosenblatt wants it pulled, so fingers crossed. But it is never that easy...he is still draining, not a lot, but enough to keep it in. Then he also has fluid in his right lung. Now here's a bit of interesting information; normal lungs are not connected, they are two separate organs working together. Transplant lungs are connected, therefore fluid can go between the lungs as it pleases. That's annoying. So where Graham has a tube trying to drain his left lung, the fluid got smart and moved to his right...ugh! He just needs to start coughing more and more to try and get it out that way. But he is in pain. He no longer feels the pain from his chest tubes, now he feels his incision and rib cages. He imagines that it's from where the surgeon was scraping his ribs to get his old lungs out - OW!
The new Kidney Doctor started his secret weapon today...something through his IV that should pull the fluid out of Graham's vessels and tissues. Then he's going to take 2 different diuretics to try drain it all through urination. Fingers crossed that this works!
So many reasons Graham could be tired; doctors are saying that this is "Normal in this phase of healing" but we have a different theory. The man hasn't slept in 6 weeks! The nurses and techs and doctors are in and out of the room messing with him every hour. Oh we can't wait until he's home. He'll be more comfortable, sleep better, and be able to see his little family everyday - the best medicine in the world.
I'm still holding on to a little hope that he comes home this week! Our duct's have been cleaned, carpet's cleaned, house head to toe deep cleaned, and the dog's and their beds have been bathed. WE ARE READY!!!
The new Kidney Doctor started his secret weapon today...something through his IV that should pull the fluid out of Graham's vessels and tissues. Then he's going to take 2 different diuretics to try drain it all through urination. Fingers crossed that this works!
So many reasons Graham could be tired; doctors are saying that this is "Normal in this phase of healing" but we have a different theory. The man hasn't slept in 6 weeks! The nurses and techs and doctors are in and out of the room messing with him every hour. Oh we can't wait until he's home. He'll be more comfortable, sleep better, and be able to see his little family everyday - the best medicine in the world.
I'm still holding on to a little hope that he comes home this week! Our duct's have been cleaned, carpet's cleaned, house head to toe deep cleaned, and the dog's and their beds have been bathed. WE ARE READY!!!
Sunday, September 19, 2010
Better Day
I have always been a BIG believer in prayer. I've seen it work so many times with Graham alone, and last night was no different. I'm sorry for such a downer entry, but I don't want to paint a picture that is just not there. But thank you, thank you, thank you for all of y'alls kind thoughts and prayers for Graham last night; they have definitely made an impact. After the Longhorn's beat Tech last night, you could see his mood improve a little (it always makes him feel good to see the Horns win) and we began to tell Jordan stories. If you have never met her, she is the silliest little girl - she definitely has her Daddy's personality, so the stories are endless. And by the end of the night, you could tell his spirits were lifted and prayers were answered.
This morning he awoke in a much better mood. We said more to each other in 5 minutes, then we did the first 3 hours of my visit yesterday. And he had some humor back...the poor IV Services Nurse kept setting him up for inappropriate comments. Luckily she had a great sense of humor too, she just laughed and stroked his ego by telling him he's the funniest patient ever. He even attempted "strip tease" music while taking his shirt off so she could change the needle out in his port. Unfortunately for him, it takes 5 minutes to take off his shirt and you just can't do that seductively.
He's also starting to feel better about his swelling. Dr. K-part (I have NO CLUE how to spell that man's name, but that's how you say it) is pretty much done with his job, so enter new doctor in charge of his kidneys. Another amazing doctor with a great personality. His main job is to keep Graham's kidney functions normal and work on the swelling. And the more and more he keeps telling Graham that the swelling will go down, the more Graham believes him. Graham's kidney functions have now been decreasing for 2 straight days that the doctor is now going to see what he can do about the swelling. They are going to let his kidney's rest one more day, then see if he can handle some diuretics and the doctor's "special trick" through his IV to get the swelling down.
The chest tube is still draining a lot, and chances of it getting pulled tomorrow are slim; but you never know. Neither of us can wait, as soon as it's pulled, he's home! Today we have been busy buying things to keep us busy the first couple of weeks. Even though he does not have his new phone yet, it already has all of it's accessories purchased and ready for pick up - got to love in store pick up! You buy - so no chasing wild 2 year old through out store, then pick up in store - so no shipping cost! Then I bought the prettiest Orange Tulip bulbs...ready to be planted for a nice May blooming. It's nice to be talking about the future again. We've been stuck in the present for almost a year now. We are now 99.9% sure that we have a future, and that's an awesome feeling! Thanks again for all of the kind thoughts and uplifting prayers, and please continue; we are so appreciative of them and pray for all of you daily too!
This morning he awoke in a much better mood. We said more to each other in 5 minutes, then we did the first 3 hours of my visit yesterday. And he had some humor back...the poor IV Services Nurse kept setting him up for inappropriate comments. Luckily she had a great sense of humor too, she just laughed and stroked his ego by telling him he's the funniest patient ever. He even attempted "strip tease" music while taking his shirt off so she could change the needle out in his port. Unfortunately for him, it takes 5 minutes to take off his shirt and you just can't do that seductively.
He's also starting to feel better about his swelling. Dr. K-part (I have NO CLUE how to spell that man's name, but that's how you say it) is pretty much done with his job, so enter new doctor in charge of his kidneys. Another amazing doctor with a great personality. His main job is to keep Graham's kidney functions normal and work on the swelling. And the more and more he keeps telling Graham that the swelling will go down, the more Graham believes him. Graham's kidney functions have now been decreasing for 2 straight days that the doctor is now going to see what he can do about the swelling. They are going to let his kidney's rest one more day, then see if he can handle some diuretics and the doctor's "special trick" through his IV to get the swelling down.
The chest tube is still draining a lot, and chances of it getting pulled tomorrow are slim; but you never know. Neither of us can wait, as soon as it's pulled, he's home! Today we have been busy buying things to keep us busy the first couple of weeks. Even though he does not have his new phone yet, it already has all of it's accessories purchased and ready for pick up - got to love in store pick up! You buy - so no chasing wild 2 year old through out store, then pick up in store - so no shipping cost! Then I bought the prettiest Orange Tulip bulbs...ready to be planted for a nice May blooming. It's nice to be talking about the future again. We've been stuck in the present for almost a year now. We are now 99.9% sure that we have a future, and that's an awesome feeling! Thanks again for all of the kind thoughts and uplifting prayers, and please continue; we are so appreciative of them and pray for all of you daily too!
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