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.
Thursday, September 30, 2010
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!
Saturday, September 18, 2010
GET HIM OUTTA HERE!
I'm sorry I haven't posted since Sunday. Graham's Monday and Tuesday were much the same...GREAT GREAT GREAT. He was so motivated to get out of here, he was walking 10 - 12 laps and even started making a lap or two here and there without his walker!!! He learned he needed shoes, because he is so weak, he was slipping all over the place - and the socks were not helping. They quickly put up a "Safety First! Patient at Risk for Falls" sign on the door. He was eating good and the dressing on his right side was getting soaked less and less. Then came Wednesday...
Fairly early in the morning, his nurse for the day noticed his neckline starting to ooze a little. Red Flag...this could mean infection. And this is when Graham lost it, and I haven't seen back him since. The nurse was quick on her feet. She got the line pulled and sent a swab down to the lab to be tested, hopefully to find something within 24 hours. It appeared that if it was an infection, it was caught early enough that it shouldn't be too bad of a problem. But all Graham could think was that if it WAS an infection, this could set him back further, cause him to stay longer, or worse...reject.
He also needed 2 units of blood on Wednesday. Guessing just from low blood count, Graham was too out of it to ask - SO not like Graham, he asks about everything that goes into his body. And his feet began to swell too, this was his first thought that he was a freak. All he could think of was the post transplant volunteer and how enormous her feet were 6 years after transplant. He began to think that all this swelling was never going away.
I got here about 5:30 - and I left Mansfield at 4:00, it was NOT a fun drive. But when I finally got here, he was just staring into space, picking at his hands. Tried to talk to him, he wouldn't really talk. His eyes were so swollen, he was so tired. I convinced him to eat a little (what a night that he decided to try Hummus...of all things???), and he scarfed down a PB&J and a salad (he hadn't eaten since breakfast) and go ahead and walk for the evening, get it over with. He did about 6 or 7 laps, nothing stellar, but it was something. When we got back he did his treatments and then he wanted to stand at the sink and get ready for bed. Bad mistake, this was the first time he got to look at himself, I mean, really look and examine what he looks like. You could just see the horror in his face, I swear I even saw him tear up. He didn't say anything, but I was thinking "Oh &*^##, why am I letting him do this?" He sat back in the chair, and just began picking at himself again...his hands are so dry from all the "germ-x" stuff. Finally, probably annoyed with all my useless banter, he just says, "I'm a freak" and more about how he looks so bad because of the swelling, and how uncomfortable he is. I was at a loss for words. What do you say, "You look SOOO much better" just for him to interpret it wrong? Or, it'll go away; when it's been a month and he's still retaining so much water, he is literally 2 - 3 times his normal size. All I could do was tell him how proud I am of him, and that it HAS only been 1 month and you can't expect to be back to normal (or your new normal) yet. But it wasn't enough. I got him in bed and left about 9:30.
I'm back today, Jordan got to come up and see him. She was soooo excited. She couldn't even nap, her whole 45 minutes of laying in bed, she was whispering, "Need to nap, go see Daddy" over and over. So cute! We pack up and head out and when we got to the part on I-30 where you can see the Dallas Skyline, she started yelling, "Skyscrapers! Daddy's big buildings, I go to Daddy's hospital!" and started to dance. She was so happy once we got in here. She did get a little uneasy a few times, but for the most part, had a blast. She was even comparing Daddy's boo boo to hers!
With all that fun, we only got a smirk out of Graham. Once she left with her Mimi, all conversation left. I have never seen him like this, and I don't like it. He's so down and depressed, I just want to shake him out of it. Or pinch myself because this CAN'T be happening, not Graham, not the silliest (albeit weirdest at times) man I know. He finally did say, "This is so much harder than I ever realized." And left it at that. We've had small talk, but nothing more. I really miss my husband, and I agree, this is so much more difficult than I ever imagined too.
Fairly early in the morning, his nurse for the day noticed his neckline starting to ooze a little. Red Flag...this could mean infection. And this is when Graham lost it, and I haven't seen back him since. The nurse was quick on her feet. She got the line pulled and sent a swab down to the lab to be tested, hopefully to find something within 24 hours. It appeared that if it was an infection, it was caught early enough that it shouldn't be too bad of a problem. But all Graham could think was that if it WAS an infection, this could set him back further, cause him to stay longer, or worse...reject.
He also needed 2 units of blood on Wednesday. Guessing just from low blood count, Graham was too out of it to ask - SO not like Graham, he asks about everything that goes into his body. And his feet began to swell too, this was his first thought that he was a freak. All he could think of was the post transplant volunteer and how enormous her feet were 6 years after transplant. He began to think that all this swelling was never going away.
I got here about 5:30 - and I left Mansfield at 4:00, it was NOT a fun drive. But when I finally got here, he was just staring into space, picking at his hands. Tried to talk to him, he wouldn't really talk. His eyes were so swollen, he was so tired. I convinced him to eat a little (what a night that he decided to try Hummus...of all things???), and he scarfed down a PB&J and a salad (he hadn't eaten since breakfast) and go ahead and walk for the evening, get it over with. He did about 6 or 7 laps, nothing stellar, but it was something. When we got back he did his treatments and then he wanted to stand at the sink and get ready for bed. Bad mistake, this was the first time he got to look at himself, I mean, really look and examine what he looks like. You could just see the horror in his face, I swear I even saw him tear up. He didn't say anything, but I was thinking "Oh &*^##, why am I letting him do this?" He sat back in the chair, and just began picking at himself again...his hands are so dry from all the "germ-x" stuff. Finally, probably annoyed with all my useless banter, he just says, "I'm a freak" and more about how he looks so bad because of the swelling, and how uncomfortable he is. I was at a loss for words. What do you say, "You look SOOO much better" just for him to interpret it wrong? Or, it'll go away; when it's been a month and he's still retaining so much water, he is literally 2 - 3 times his normal size. All I could do was tell him how proud I am of him, and that it HAS only been 1 month and you can't expect to be back to normal (or your new normal) yet. But it wasn't enough. I got him in bed and left about 9:30.
I'm back today, Jordan got to come up and see him. She was soooo excited. She couldn't even nap, her whole 45 minutes of laying in bed, she was whispering, "Need to nap, go see Daddy" over and over. So cute! We pack up and head out and when we got to the part on I-30 where you can see the Dallas Skyline, she started yelling, "Skyscrapers! Daddy's big buildings, I go to Daddy's hospital!" and started to dance. She was so happy once we got in here. She did get a little uneasy a few times, but for the most part, had a blast. She was even comparing Daddy's boo boo to hers!
With all that fun, we only got a smirk out of Graham. Once she left with her Mimi, all conversation left. I have never seen him like this, and I don't like it. He's so down and depressed, I just want to shake him out of it. Or pinch myself because this CAN'T be happening, not Graham, not the silliest (albeit weirdest at times) man I know. He finally did say, "This is so much harder than I ever realized." And left it at that. We've had small talk, but nothing more. I really miss my husband, and I agree, this is so much more difficult than I ever imagined too.
Sunday, September 12, 2010
WAHOOOOOOOO!
I can't tell you how great it is to sit here and have a somewhat normal conversation with my husband. Yesterday, Saturday, he was slowly coming around, making small jokes (especially about the size of some of his body parts) and able to look at you for a long period of time. He's been so doped up with Morphine that all he could do was muster up a few sentences and stare at the walls. He was telling me that it wasn't until Thursday or Friday that he actually started watching what was on the TV (and this is soooo not Graham). His pain is still ever present, but he's weaning himself (yes himself) off the drug because he's not a big fan of the side effects. He's still occasionally taking the drug and a form of Vicodin, but going longer periods of time.
Yesterday morning he also got to say Good-Bye to another chest tube! It hurt all day yesterday, but he's loving the freedom of no tubes coming out of his left side. The right side is still draining a lot...they put it back on suction, hope to pull the suction back off of it tomorrow and get the LAST tube pulled by the end of the week AND SEND HIM HOME!!! I'm so excited. I'm not getting my hopes up, but cannot wait for him to be healthy enough to come home (and would really love for it to be by next week).
By this morning, he was in full Graham swing! Sending pics of himself to my brother and his good friend (trying to gross them out), jacking around with the IV Services nurses and giving the poor woman hell about her liking Clint Eastwood (her partner joined in, poor woman), laughing (!!!!!!!), and taking my phone so he could play his beloved Solitaire. He has been seen by all of his doctors, and they have nothing but good things to say about him. I even rode down in the elevator with Dr. Rosenblatt, and he still had great things to say - no worries, just smiles. When his Infectious Diseases Doctor came in, Dr. Hailey, we got a little insight on just how great he was doing. From the very beginning, they all new this was going to be a very risky surgery with great complications...but it was better than the alternative, die not trying. He has this bacteria (I think just in his lungs) called Achromobacter that is resistant to most if not all drugs. This lovely bacteria could (and still can) cause Graham's new lungs to be rejected. They actually prepared for Graham to already have rejected his lungs. But he didn't, and they are slowly taking away all the drugs that are to suppress this Achromobater and he still hasn't rejected. Now they are still watching very closely, but Dr. Hailey is predicting that his new lungs will eventually kick this bacteria out and he will no longer have this problem looming over him. All the doctors are just still amazed at how Graham is doing. Dr. Hailey briefly talked about how they were all really nervous, especially his post care doctor (can't spell his name, but he is awesome!), right after surgery when all his numbers and blood pressure were out of whack.
He's off all those horrible laxatives, he's eating well, walking a lot, and able to get in and out of bed better. He still has a lot of swelling, and he keeps being told "everyone's different." Well, that's just an answer for, "We have no clue why you're so big, but it's not an issue." And it goes up and down everyday, but hopefully all this walking and exercising he's doing helps.
Yesterday morning he also got to say Good-Bye to another chest tube! It hurt all day yesterday, but he's loving the freedom of no tubes coming out of his left side. The right side is still draining a lot...they put it back on suction, hope to pull the suction back off of it tomorrow and get the LAST tube pulled by the end of the week AND SEND HIM HOME!!! I'm so excited. I'm not getting my hopes up, but cannot wait for him to be healthy enough to come home (and would really love for it to be by next week).
By this morning, he was in full Graham swing! Sending pics of himself to my brother and his good friend (trying to gross them out), jacking around with the IV Services nurses and giving the poor woman hell about her liking Clint Eastwood (her partner joined in, poor woman), laughing (!!!!!!!), and taking my phone so he could play his beloved Solitaire. He has been seen by all of his doctors, and they have nothing but good things to say about him. I even rode down in the elevator with Dr. Rosenblatt, and he still had great things to say - no worries, just smiles. When his Infectious Diseases Doctor came in, Dr. Hailey, we got a little insight on just how great he was doing. From the very beginning, they all new this was going to be a very risky surgery with great complications...but it was better than the alternative, die not trying. He has this bacteria (I think just in his lungs) called Achromobacter that is resistant to most if not all drugs. This lovely bacteria could (and still can) cause Graham's new lungs to be rejected. They actually prepared for Graham to already have rejected his lungs. But he didn't, and they are slowly taking away all the drugs that are to suppress this Achromobater and he still hasn't rejected. Now they are still watching very closely, but Dr. Hailey is predicting that his new lungs will eventually kick this bacteria out and he will no longer have this problem looming over him. All the doctors are just still amazed at how Graham is doing. Dr. Hailey briefly talked about how they were all really nervous, especially his post care doctor (can't spell his name, but he is awesome!), right after surgery when all his numbers and blood pressure were out of whack.
He's off all those horrible laxatives, he's eating well, walking a lot, and able to get in and out of bed better. He still has a lot of swelling, and he keeps being told "everyone's different." Well, that's just an answer for, "We have no clue why you're so big, but it's not an issue." And it goes up and down everyday, but hopefully all this walking and exercising he's doing helps.
Thursday, September 9, 2010
Things are looking up....again!
Seems everything is starting to look good again. For the most part, his levels are all good and lungs look great. His swelling is still ever present and his chest tubes are still draining a lot, but he feels good. He gets up and walks 3 times a day, usually 5 or 6 times around the nurses station with only help from his walker (well, if he's hooked up to an IV someone has to drag it, but that's it), he's eating regularly and a descent amount. No more liquid diet!!! And each time he eats, he sits up in a chair for a couple of hours. This is such great news. I don't know if it's because his mom is relentless (in a good way) and really motivates (he might say force) him to get up and take care of himself. The physical therapist came in today and Graham tried to plea his case, that he only needs to exercise when she is there. The PT went on a spree and began listing all the reasons he needs to do what he is doing and more is ALWAYS better. When she walked out of the room, he looked at his mom and said, "Guess she put me in my place." I love it when people can do that to him! He won't get to come home until his tubes are out, and it doesn't look like that will be anytime soon. But I know he's getting good care, and that's the best place for him. He just needs to lock all his stuff up!
On that note, Baylor Police and Guest Services are all over his phone being stolen. Graham's mom and nurse have pretty much pin pointed when it went missing and who might've taken it. If they don't return his actual phone (guess they're that good) then they will foot the cost of the replacement...such a relief! They sadly told us that this happens a lot. Can you believe it??? The people you are supposed to trust with taking care of your life or loved ones, are thieves! Ugh. And to make matters more annoying...Graham had the UVerse App on his phone, and I guess before I turned it off, they started recording all this crap on our DVR - and not even remotely interesting stuff.
Jordan is also doing better. Not that she understands completely, but I've really been working hard with her and talking about how Daddy is sick and in the hospital, he can't come home until he's better. Today at school, the teachers let Jordan make a Get Well Card for Daddy. And she started talking to them telling them how "Daddy is in the hospital, he sick. He getting better though, and then he can come home." They were so proud! They have really taken the brunt of all the crying and fits. Then one of her little friends comes up to her and asks Jordan about her Daddy. She repeats the story to her and Harper, her little friend, gives Jordan and hug and says, "I hope your Daddy feel better soon." The teachers said they all just almost lost it, tears in eyes. How sweet is that! Kids may not understand the hard stuff, but they get it in their own way. And that was so apparent today.
On that note, Baylor Police and Guest Services are all over his phone being stolen. Graham's mom and nurse have pretty much pin pointed when it went missing and who might've taken it. If they don't return his actual phone (guess they're that good) then they will foot the cost of the replacement...such a relief! They sadly told us that this happens a lot. Can you believe it??? The people you are supposed to trust with taking care of your life or loved ones, are thieves! Ugh. And to make matters more annoying...Graham had the UVerse App on his phone, and I guess before I turned it off, they started recording all this crap on our DVR - and not even remotely interesting stuff.
Jordan is also doing better. Not that she understands completely, but I've really been working hard with her and talking about how Daddy is sick and in the hospital, he can't come home until he's better. Today at school, the teachers let Jordan make a Get Well Card for Daddy. And she started talking to them telling them how "Daddy is in the hospital, he sick. He getting better though, and then he can come home." They were so proud! They have really taken the brunt of all the crying and fits. Then one of her little friends comes up to her and asks Jordan about her Daddy. She repeats the story to her and Harper, her little friend, gives Jordan and hug and says, "I hope your Daddy feel better soon." The teachers said they all just almost lost it, tears in eyes. How sweet is that! Kids may not understand the hard stuff, but they get it in their own way. And that was so apparent today.
Wednesday, September 8, 2010
*&^*#%(*#@*$
I had this great intro already planned for my blog...but now all I can think of is this low life SOB that stole Graham's phone from his room. Seriously, who does that! And me trying to be Sherlock Holmes (only, I'm really a chicken when it comes to confrontation) have figured out, along with his Mom, he HAD TO HAVE BEEN IN THE ROOM!!!! They called some number yesterday at 1:30pm...well, he hadn't left the room (remember - bed rest day) since it was used last. So I called the number, didn't hang up, but listened. Trying to figure out male or female, accent no accent. Well, now THEY keep calling me and hanging up. The dork that I am, have already talked to AT&T and they can't figure out who I am...didn't I say I was a chicken??? I've really lost my touch since working in Inner City Dallas. So, if you call Graham and it does the little disconnect spill, that is why. And got to love Barbara, his mom. She is on top of Baylor like white on rice. WHO TAKES A SICK MANS PHONE FROM HIS ROOM!!! And to think, that was his only way to see his little girl :(
Now that is out of my system. Update...supposedly this is all "relatively normal" but it still makes me sad and frustrated. His line in his neck was put back in. Due to swelling and no blood draw from his port, they had no way of drawing blood which is VERY important to make sure all his levels are OK. His kidney functions are still high, but almost everything else looks better. White blood cells are almost normal but red cells still low...so he needed a transfusion today. This is when I almost lost it (and it was just lunch time at school). And to top it all off (this was before we noticed the phone) doctor thinks he is beginning to get depressed. Not just in pain and doesn't want to talk, but depressed and doesn't want to do anything. Graham, as sick as he has been all his life, is the happiest, most upbeat and positive person I know. It's one of the reasons I fell in love with him. And for him to come all this way and to get down now, breaks my heart. I hope he remembers his little girl and continues to fight for her. He's done soooo well so far. I KNOW he's not giving up, I don't think he could EVER come to that level; but I want him to continue with his ever positive (sometimes annoying), I'm going to beat this attitude. It is why we are where we are.
Now that is out of my system. Update...supposedly this is all "relatively normal" but it still makes me sad and frustrated. His line in his neck was put back in. Due to swelling and no blood draw from his port, they had no way of drawing blood which is VERY important to make sure all his levels are OK. His kidney functions are still high, but almost everything else looks better. White blood cells are almost normal but red cells still low...so he needed a transfusion today. This is when I almost lost it (and it was just lunch time at school). And to top it all off (this was before we noticed the phone) doctor thinks he is beginning to get depressed. Not just in pain and doesn't want to talk, but depressed and doesn't want to do anything. Graham, as sick as he has been all his life, is the happiest, most upbeat and positive person I know. It's one of the reasons I fell in love with him. And for him to come all this way and to get down now, breaks my heart. I hope he remembers his little girl and continues to fight for her. He's done soooo well so far. I KNOW he's not giving up, I don't think he could EVER come to that level; but I want him to continue with his ever positive (sometimes annoying), I'm going to beat this attitude. It is why we are where we are.
Tuesday, September 7, 2010
Balancing Act
The Doctors are really earning their money on Graham. If you just look at the big (really big and broad) picture, he's doing good. Lungs look great, swelling is down half from surgery, and he's getting stronger everyday. However, besides his lungs, it's all still bad. He was easily 4 x his actually size post surgery, so even though the swelling is down, in perspective it still stinks. And for some reason, his body is REALLY sensitive to all the drugs. When they tweak one drug, his levels go all crazy and they have to play with all the numbers again. Today Graham's kidney functions and potassium levels were high, magnesium and blood count was low, and to top it all off...he has a bacteria infection called C-Diff. This is one of those bacterias that everyone carries, but when the C-Diff levels get too high (typically from high does of antibiotics) it causes severe abdominal pain, lots of fun side effects involving a bathroom, and it's highly contagious to boot! The poor guy just can't catch a break. Now, leave it to Graham to find a pro in all of this...the doctors ordered him to rest and stay in bed today. His mom said he just grinned, he's really been hating exercising and eating lately. And what a good excuse to not do either - well, he will eat something. As annoying and somewhat scary as all this is, the doctors still seem very confident and know they can handle all of this. That is what I'm holding onto.
His chest tubes are still draining a lot and hopefully he can get at least one out by the end of the week. He has now been transplanted for 2 weeks. It's crazy to think that we were told he would be home by now or at least by tomorrow. I'm glad he's at the hospital though, get all this craziness over with before he comes home to Jordan and me. I do miss him, but I want him healthy too. On a funny/sad note: Jordan went around telling all her friends and teachers at school today that her Daddy was home and he was going to pick her up. It's obvious she really misses her daddy, but am I raising a little fibber who wants attention? Oh Lord, please no!!!
His chest tubes are still draining a lot and hopefully he can get at least one out by the end of the week. He has now been transplanted for 2 weeks. It's crazy to think that we were told he would be home by now or at least by tomorrow. I'm glad he's at the hospital though, get all this craziness over with before he comes home to Jordan and me. I do miss him, but I want him healthy too. On a funny/sad note: Jordan went around telling all her friends and teachers at school today that her Daddy was home and he was going to pick her up. It's obvious she really misses her daddy, but am I raising a little fibber who wants attention? Oh Lord, please no!!!
Monday, September 6, 2010
Medi Port Craziness...and Graham found his Patience
Well, one more wire is gone! They took out his IV lines from his neck yesterday afternoon and accessed his Medi-Port in his chest. They were able to do this because he is finally off his 24/7 anti-rejection IV that couldn't be mixed with any other IV drug (he will now take it orally for the rest of his life - pretty sure). He has had his current Port for about 5 to 6 years now and if anyone has seen him without his shirt, you've seen the Port, it kind of sticks out. IV services comes in to access it and couldn't find it! He is so swollen...the lady kept pressing on his chest and Graham's eyes kept bulging out - he was so patient. She ended up calling another Nurse to help. They decided on using a 1inch needle instead of a 3/4 inch like he normally uses because of his swelling (come to find out later, they used 3/4 inch????). After about 30 - 45 minutes, they had his Port accessed and the neck line out. Ahhh, relief. He was also excited that he was to stay in bed for 30 minutes and not move. I was going to make him walk the halls and eat, lucky dog.
But after some rest and lunch, Graham became Star Patient! He walked for me (5 laps), did his Peak/Flow machine, and took the rest of his Meds. He earned a well deserved dose of Morphine and a nap. I woke him up about 7:30pm to start this procedure all over again, but all the Nurses and Respiratory Therapists beat me to it. So he was hooked up with breathing treatments and IVs and potty breaks for awhile. Well, so we hoped. His evening Nurse came in to flush his Port and start up another round of IVs and found that he couldn't. You could see the muscles in the Nurse's arms trying to force the saline through, but it wouldn't go. Graham informed him that he's always used Heparin or it will clot really fast. But (falling under the category "you learn something new everyday") you can't use Heparin with post transplant patients...for several reasons dealing with blood - so of course I start getting queasy and begin to ignore. Well, IV services closes at 7:00 pm, Nurses aren't aloud to access ports, his veins can't hold an IV, AND HIS IVs ARE ALL TIME ORIENTED and there is nooooo line. So Graham asks for the Charge Nurse, well, his evening Nurse takes it offensively (he's been a Charge Nurse, he can handle it...blah blah blah) but still brings the other Nurse in. They decide to do an All Call for anyone with the credentials to access a port, and in comes the sweetest, best port accessor, Oncology Nurse (I liked her!) who gets the job done in stellar time (this is where we found out the geniuses before used a 3/4 inch needle) and used Heparin to see if she could get blood draw from it. It was a no, but it was accessed and stress was over (appetite gone, but IVs were in!).
When his "Holier than Thou" evening nurse came back in, we asked if he could be hooked up to Saline when no antibiotics were being ran through...oh the look we got! But he caved - only after stating that he thought of it before us.
Ok, I am a VERY patient person and I was losing it. If you have met Graham, I'm sure you can only imagine. But I am so proud of him. He just kept on taking deep breaths (only turned red faced once) and speaking calmly. Never once became rude or unpleasant. He vented after his nurse left, but kept his cool in front of "Nurse of the Year!"
So far today he is having much of the same day as yesterday. It is becoming very hard for him to eat or swallow because of the swelling and access gas. But is continuing to walk and move around to try and help it all go away.
But after some rest and lunch, Graham became Star Patient! He walked for me (5 laps), did his Peak/Flow machine, and took the rest of his Meds. He earned a well deserved dose of Morphine and a nap. I woke him up about 7:30pm to start this procedure all over again, but all the Nurses and Respiratory Therapists beat me to it. So he was hooked up with breathing treatments and IVs and potty breaks for awhile. Well, so we hoped. His evening Nurse came in to flush his Port and start up another round of IVs and found that he couldn't. You could see the muscles in the Nurse's arms trying to force the saline through, but it wouldn't go. Graham informed him that he's always used Heparin or it will clot really fast. But (falling under the category "you learn something new everyday") you can't use Heparin with post transplant patients...for several reasons dealing with blood - so of course I start getting queasy and begin to ignore. Well, IV services closes at 7:00 pm, Nurses aren't aloud to access ports, his veins can't hold an IV, AND HIS IVs ARE ALL TIME ORIENTED and there is nooooo line. So Graham asks for the Charge Nurse, well, his evening Nurse takes it offensively (he's been a Charge Nurse, he can handle it...blah blah blah) but still brings the other Nurse in. They decide to do an All Call for anyone with the credentials to access a port, and in comes the sweetest, best port accessor, Oncology Nurse (I liked her!) who gets the job done in stellar time (this is where we found out the geniuses before used a 3/4 inch needle) and used Heparin to see if she could get blood draw from it. It was a no, but it was accessed and stress was over (appetite gone, but IVs were in!).
When his "Holier than Thou" evening nurse came back in, we asked if he could be hooked up to Saline when no antibiotics were being ran through...oh the look we got! But he caved - only after stating that he thought of it before us.
Ok, I am a VERY patient person and I was losing it. If you have met Graham, I'm sure you can only imagine. But I am so proud of him. He just kept on taking deep breaths (only turned red faced once) and speaking calmly. Never once became rude or unpleasant. He vented after his nurse left, but kept his cool in front of "Nurse of the Year!"
So far today he is having much of the same day as yesterday. It is becoming very hard for him to eat or swallow because of the swelling and access gas. But is continuing to walk and move around to try and help it all go away.
Sunday, September 5, 2010
Sorry For the Delay...
I'm so sorry I haven't posted in awhile; not only because I want to keep our family, friends, and followers informed, but also because I have started thinking of this as a journal. One that Graham can eventually read to know what went on, one that I can read to remember how far we have come, and one that Jordan can read many years later so that she knows what her Daddy went through so that he can be a better Daddy.
I went back to work this week thinking that I would be fine...HA! I am a perfectionist in my classroom about my teaching (not so much about my desk or paperwork for those of you rolling your eyes), I always make sure I put my students first. Now when my husband is in the hospital not doing well and my daughter is starting to break down, I start to stress and fumble to make it all work. So again, I'm sorry I haven't called, texted or posted; but my family's life and my job came first.
What a week it's been. The roller coaster has gone from big peaks and valley's to one of those kiddie coasters that give you whip lash with all the tiny ups and downs. Come to find out, Graham had an infection or pneumonia in his lungs. Glad I did not know about that, would have passed out more than once! Don't ask about the first time, just a little embarrassing. But everyday his X-Rays keep looking better and better. Dr. Meyer, his surgeon, came in this morning and talked about just how good they looked - woo hoo! I did get a glimpse of the X-Ray and I'm curious to know a little more about them. More to come on that once Dr. Rosenblatt comes in. His 2 chest tubes are still in. They are just draining like crazy, but again, the Dr. says it's normal for CF Transplant patients.
The main concern is still his pain and swelling. Graham has become so much better at taking his pain meds, he's finally succumbed to us telling him...the more comfortable you are the quicker you'll heal and the less it'll hurt to cough. But now, it seems the narcotics are working against him and causing him to be constipated. So now, bring on all the nice tasting laxatives...poor guy, just not catching a break. Then there is the swelling; still there and still annoyingly painful. It is very difficult for him to bend his arms and feed himself. And now, it seems to be starting to head south (not move, still ever present in head, arms and chest) down through his thighs. The worst part is his stomach, his belly is so tight and causing so much pain they are running a series of X-Rays to make sure it is all ok. So far, today and yesterday's X-Rays were good, nothing seems to be out of the ordinary. Then one more bump, he's back on oxygen at night. Now this scared me when I finally got to come see him at 1 am and he has his cannula's back in, but it is due to his snoring that he has because of the swelling in his throat. WILL THIS SWELLING JUST LEAVE HIM ALONE!!!
I feel so much better now that I get to see my baby and talk to him. We have never been apart this long without talking...I seem to be saying this a lot about my little family :( I hate not knowing what is going on with him and if I had to do it all over again, FMLA the entire time! Then again, there is our little princess that needs her Mommy too.
I went back to work this week thinking that I would be fine...HA! I am a perfectionist in my classroom about my teaching (not so much about my desk or paperwork for those of you rolling your eyes), I always make sure I put my students first. Now when my husband is in the hospital not doing well and my daughter is starting to break down, I start to stress and fumble to make it all work. So again, I'm sorry I haven't called, texted or posted; but my family's life and my job came first.
What a week it's been. The roller coaster has gone from big peaks and valley's to one of those kiddie coasters that give you whip lash with all the tiny ups and downs. Come to find out, Graham had an infection or pneumonia in his lungs. Glad I did not know about that, would have passed out more than once! Don't ask about the first time, just a little embarrassing. But everyday his X-Rays keep looking better and better. Dr. Meyer, his surgeon, came in this morning and talked about just how good they looked - woo hoo! I did get a glimpse of the X-Ray and I'm curious to know a little more about them. More to come on that once Dr. Rosenblatt comes in. His 2 chest tubes are still in. They are just draining like crazy, but again, the Dr. says it's normal for CF Transplant patients.
The main concern is still his pain and swelling. Graham has become so much better at taking his pain meds, he's finally succumbed to us telling him...the more comfortable you are the quicker you'll heal and the less it'll hurt to cough. But now, it seems the narcotics are working against him and causing him to be constipated. So now, bring on all the nice tasting laxatives...poor guy, just not catching a break. Then there is the swelling; still there and still annoyingly painful. It is very difficult for him to bend his arms and feed himself. And now, it seems to be starting to head south (not move, still ever present in head, arms and chest) down through his thighs. The worst part is his stomach, his belly is so tight and causing so much pain they are running a series of X-Rays to make sure it is all ok. So far, today and yesterday's X-Rays were good, nothing seems to be out of the ordinary. Then one more bump, he's back on oxygen at night. Now this scared me when I finally got to come see him at 1 am and he has his cannula's back in, but it is due to his snoring that he has because of the swelling in his throat. WILL THIS SWELLING JUST LEAVE HIM ALONE!!!
I feel so much better now that I get to see my baby and talk to him. We have never been apart this long without talking...I seem to be saying this a lot about my little family :( I hate not knowing what is going on with him and if I had to do it all over again, FMLA the entire time! Then again, there is our little princess that needs her Mommy too.
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