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.
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