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.
Friday, January 7, 2011
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!
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