Healing, with whatever you are healing from, is a roller coaster. The highs are high, the ups are encouraging, and the lows suck. Graham started decreasing on Friday and just kept going down until his low reached a bottom yesterday. I felt my heart in my throat and numbness all over (I did have our awesome school nurse check me out - I was a little high, but OK), why are these low days lasting so long!
His pain seemed like it kept increasing. Even with all the "Good Things" happening (2 chest tubes out, pain IVs out, change of neck line) it still was getting worse and Graham began to get very frustrated. Then Sunday came with all the nurses that were a few bricks short of a wall. Seriously, why are you in a profession that is very time oriented and you don't know how to get things done in a timely, orderly manner.
Graham's orders to go upstairs into a regular room came at 11:30, the woman kept making excuses of why he was not moving. Come to find out, she just didn't know how to do anything. She kept complaining how busy the ICU was, but since I'd been there everyday for 6 days, I could see over half of the beds were empty, yet they still had the same number of nurses. Then he gets in his new room, and again, Nurse not the brightest crayon. But he made it through the night with his Mom's help. So happy she stayed with him because he kept getting worse. His swelling went up, pain increased, kidney functions increased and congestion got worse.
By the next day Dr Rosenblatt wanted to scope him a day early. His X-Rays did not look so hot. They found a polyp in his throat - which is causing so much pain when he eats, and several polyps in his lungs. They took samples of the lung polyps to have them biopsied and suctioned out his lungs. Dr. ordered more Physical Therapy and made sure he was on a Mechanical Soft Diet to help him eat. They said they would play around with his meds again to get his kidney functions to lower. So good thing, they are working really hard with getting his insides to work well. But his swelling is getting worse and even his eyelids began to swell again; therefore he can't feed himself. So his Mom stayed another night.
Good reports from his Mom today. Today's X-Ray came back looking great and his Rejection Test came back negative...hopefully this means things are starting to look up again. He walked several laps around the 10th floor and was able to eat most of his breakfast! I can't wait to see him tonight, I haven't seen or spoken to him since Sunday. He's too tired to talk on the phone and our sweet little girl is starting to take all this no parent stuff hard. She just doesn't understand why she can't see her Mommy and Daddy. Her teacher's at school said she cried a lot of the day for us yesterday. When I went to pick her up, she asked if she could go to Daddy's hospital to see him. BROKE MY HEART! So we went to eat ice cream and then had a playdate with her best friend. It helped tremendously...today she only cried a little in the morning and didn't cry when I left her at her school. Hopefully I get a good report from her teachers today. Looking forward to no more pain in my family.
Tuesday, August 31, 2010
Sunday, August 29, 2010
Rough Days, but out of ICU
It's easy to get frustrated that he's still in A LOT of pain...then you have to step back and think, it was ONLY 5 days ago that he had the riskiest surgery out there. Today some of the nurses were questioning the quantity of his pain meds (and little wife almost went off, but I contained myself - I'm proud) and the surgeon said it best to them, "Hello, he just had a double lung transplant. I wrote the orders, give it to him." He's had a rough few days, and I know that it is to be expected, but it is so hard to see him in pain and feeling absolutely miserable. If you know Graham, he, for the most part, hates relying on people. He has forced himself to rely on me, but feels guilty when he involves others. He'll go without eating or will just watch the chic flick on the TV just so he doesn't have to ask the nurse to do one more thing. I'm slowly changing his thinking, because he HAS to rely on others, HE CAN'T MOVE!!!
But through all the pain, he still continues to progress. He had 2 of his chest tubes taken out today. Dr Meyer, the surgeon, came in and did a few snips of the sutchers and told him to breathe in and out twice then hold his breath and push...THEN HE YANKED THE FIRST ONE OUT! Graham held onto my hand so tight out of nervousness! Then the 2nd one was pulled, and barely a grip. Dr. Meyer looked at him and said, "People normally squeal." I told you, Graham IS NOT normal. Such a fighter!
He also removed his Litocaine packs that were topical pain meds connected right under his skin. Slowly but surely he is losing all of his tubing. Yesterday, another doctor changed out his IVs in his neck. Reduced it from 6 (or so) lines down to 3. The more they remove, the better he feels. His swelling is up in his arms and is back down to not being able to feed himself. But that's what I'm here for, and will be there for him until the end.
Graham also got moved up into a regular room today...that helps him out BIG TIME mentally. Nothing like a change in environment. It's also quieter, maybe he can finally get some rest.
But through all the pain, he still continues to progress. He had 2 of his chest tubes taken out today. Dr Meyer, the surgeon, came in and did a few snips of the sutchers and told him to breathe in and out twice then hold his breath and push...THEN HE YANKED THE FIRST ONE OUT! Graham held onto my hand so tight out of nervousness! Then the 2nd one was pulled, and barely a grip. Dr. Meyer looked at him and said, "People normally squeal." I told you, Graham IS NOT normal. Such a fighter!
He also removed his Litocaine packs that were topical pain meds connected right under his skin. Slowly but surely he is losing all of his tubing. Yesterday, another doctor changed out his IVs in his neck. Reduced it from 6 (or so) lines down to 3. The more they remove, the better he feels. His swelling is up in his arms and is back down to not being able to feed himself. But that's what I'm here for, and will be there for him until the end.
Graham also got moved up into a regular room today...that helps him out BIG TIME mentally. Nothing like a change in environment. It's also quieter, maybe he can finally get some rest.
Friday, August 27, 2010
Not a Good Day
I was starting to think everything was going too well. After the big day Graham had yesterday, I knew he would feel bad, but not this bad. He was unable to get good sleep last night and by the morning, he asked to be moved to the chair so he could sit up. Every part of his body ached and his chest tubes were causing a lot of pain. He tried some pain killers, but it didn't even touch the tip of the iceberg (he did not get that pretty little morphine button). He got to eat some breakfast, but soon found out his throat was rubbed raw from the Ventilator and could eat eggs and potatoes but nothing else, grits even hurt too bad. He also need to work on coughing up all the junk from his lungs (old blood and fluids from the surgery). Not only did it hurt like $#&&, it was hard for him to figure it out. To be able to remove old lungs, nerves need to be cut to get to them, and it just so happens, the nerves that tell us to cough, Graham no longer has. So he has to train him self to cough every 15 - 20 minutes just in case something is there. Well, something is there and he can feel it, he just can't figure out how to get it out. He did so good at trying, but it just never seemed to get out. This frustrated him so bad.
Noon time, things started to look up. For lunch I was able to go to the Hospital Atrium (cafeteria) and got him some soup and banana pudding, he could eat this and was even able to get a few good coughs out. And in no time, coughed stuff up. Won't even describe it, it was gross, but felt ohhhh sooo good! He had been sitting up for about 6 hours and was starting to get tired. He tried to take a cat nap, but again, could not get comfortable. Physical Therapy came by and had him do some leg exercise, but nothing else - like walking. By 5 o'clock, he'd been sitting up for 10 hours and was EXHAUSTED. He got his dressings changed, clean bed, and a nice shot of well deserved morphine. I felt I was leaving him comfortable and felt ok to go home and see our little girl. I was a little anxious, but felt he ended the day well enough.
It was so good seeing Jordan. I never ONCE felt guilty for being gone, her babysitter Krista took such good care of her. I don't think I'll ever be able to thank her enough! I had enough time to play with her and then off to bed.
I called Graham before I crashed for the night, and it appears things went south since I left. He is out right miserable. He feels guilty for relying on people. He can't feed himself, he has to ask to have the channel changed, he hates to ask to be moved and the cherry on top...Dr. Roseblatt was a little riffed that he did not walk today. COMPLETELY PT's fault! I was there when she said no walking when Graham was clearly OK with doing it. So, as I type, my poor husband is sitting in his chair, uncomfortable, feeling guilty and miserable, waiting for PT to come by and walk him. When all he wants to to is go to sleep and have today over. Think I'll be back all day again tomorrow (I had only planned the evening), because I do not feel comfortable leaving him like this!
Noon time, things started to look up. For lunch I was able to go to the Hospital Atrium (cafeteria) and got him some soup and banana pudding, he could eat this and was even able to get a few good coughs out. And in no time, coughed stuff up. Won't even describe it, it was gross, but felt ohhhh sooo good! He had been sitting up for about 6 hours and was starting to get tired. He tried to take a cat nap, but again, could not get comfortable. Physical Therapy came by and had him do some leg exercise, but nothing else - like walking. By 5 o'clock, he'd been sitting up for 10 hours and was EXHAUSTED. He got his dressings changed, clean bed, and a nice shot of well deserved morphine. I felt I was leaving him comfortable and felt ok to go home and see our little girl. I was a little anxious, but felt he ended the day well enough.
It was so good seeing Jordan. I never ONCE felt guilty for being gone, her babysitter Krista took such good care of her. I don't think I'll ever be able to thank her enough! I had enough time to play with her and then off to bed.
I called Graham before I crashed for the night, and it appears things went south since I left. He is out right miserable. He feels guilty for relying on people. He can't feed himself, he has to ask to have the channel changed, he hates to ask to be moved and the cherry on top...Dr. Roseblatt was a little riffed that he did not walk today. COMPLETELY PT's fault! I was there when she said no walking when Graham was clearly OK with doing it. So, as I type, my poor husband is sitting in his chair, uncomfortable, feeling guilty and miserable, waiting for PT to come by and walk him. When all he wants to to is go to sleep and have today over. Think I'll be back all day again tomorrow (I had only planned the evening), because I do not feel comfortable leaving him like this!
Chest Tubes, Food, and TONS of Meds
To help with all the drainage from his surgery, Graham has 4 chest tubes coming out of his side. Two on the right and two on the left side. These are a somewhere between 1/2 inch to inch in diameter (never been good at estimating measurement) and are sewn into his side. They hurt! All his doctors and nurses have confirmed that they are the most painful part of the whole thing. Anytime he moves, he puts pressure on them and you can just see his brow crunch up and his toes start to wiggle in pain. Unfortunately for him, since he was so bad off prior to transplant, and had such horrible lungs, these tubes are going to stay with him longer than average. Introduce Morphine pump. Graham has never been one to take unnecessary meds. He figures that he puts so much into his system already, why mess up his kidneys any more. However, when the doctor began talking about this button he can press and all worries of pain would go away, I swear twinkle lights started blinking around him. I have not been down to see if he actually has received this great pain reliever, but I hope he has. Less pain, less stress, quicker recovery.
A funny side note. Graham has a prized tattoo. He'll show a complete stranger in the grocery store (and I thought my kid was going to embarrass me in life). It's a copy of the wheelchair guy you see in parking lots, handicap placards, and for the past few years, Graham's chest. I've actually become to really like it too, it's part of who he is. Well, when the surgeon drew the lines across his chest (if you're wondering...it is a clam shell incision that goes from the right under his arm all the way to the left, about an inch - for the lack of a better word - under his nipples) he drew right though the tattoo. One of the nurses working during the surgery was like, Oh No Dr. Meyer, you can't ruin a perfectly good tattoo like that! Can you not move it down just a tad. And though he might never admit it, this man became Graham's best friend. Haha!
Graham's nurse yesterday was great. Even though Dr. Rosenblatt said only a few ice chips, she brought him a big ol glass of ice water. Best tasting water he's ever had! He finished it in record time. And because of this, the Dr. saw how well he could handle fluids he worked himself up to cheese and chocolate ice cream last night...sounds like a pregnant woman's favorite meal huh? He savored every bite. Graham even said, I don't remember Blue Bell cups tasting that good. He's such a funny guy.
And here come all the rejection meds. To get in to see Graham, you have to garb up. I was just putting on the finishing touches when someone from pharmacy comes up and tells me, "I'm putting Bed 8's Chemo in the fridge for later." Me: "WHAT?????" So the woman just kindly repeats herself. Luckily, another nurse walks up at that moment and sees the horror in my face and explains to her that I'm the wife and have no clue what meds she's talking about. Then turns to me and explains that it is his immune suppressant drugs that Cancer patients also take so those in the medical world just refer to them as "Chemo." Thank GOD for her, hyperventilation might have set in REALLY quick.
They have a few more things they are monitoring...kidney functions, how his diaphragm is working, and getting all his meds on a good schedule. But hopefully he will be moved out of ICU today or tomorrow. I am so proud of my husband, he has really fought a battle this week and worked a miracle!
A funny side note. Graham has a prized tattoo. He'll show a complete stranger in the grocery store (and I thought my kid was going to embarrass me in life). It's a copy of the wheelchair guy you see in parking lots, handicap placards, and for the past few years, Graham's chest. I've actually become to really like it too, it's part of who he is. Well, when the surgeon drew the lines across his chest (if you're wondering...it is a clam shell incision that goes from the right under his arm all the way to the left, about an inch - for the lack of a better word - under his nipples) he drew right though the tattoo. One of the nurses working during the surgery was like, Oh No Dr. Meyer, you can't ruin a perfectly good tattoo like that! Can you not move it down just a tad. And though he might never admit it, this man became Graham's best friend. Haha!
Graham's nurse yesterday was great. Even though Dr. Rosenblatt said only a few ice chips, she brought him a big ol glass of ice water. Best tasting water he's ever had! He finished it in record time. And because of this, the Dr. saw how well he could handle fluids he worked himself up to cheese and chocolate ice cream last night...sounds like a pregnant woman's favorite meal huh? He savored every bite. Graham even said, I don't remember Blue Bell cups tasting that good. He's such a funny guy.
And here come all the rejection meds. To get in to see Graham, you have to garb up. I was just putting on the finishing touches when someone from pharmacy comes up and tells me, "I'm putting Bed 8's Chemo in the fridge for later." Me: "WHAT?????" So the woman just kindly repeats herself. Luckily, another nurse walks up at that moment and sees the horror in my face and explains to her that I'm the wife and have no clue what meds she's talking about. Then turns to me and explains that it is his immune suppressant drugs that Cancer patients also take so those in the medical world just refer to them as "Chemo." Thank GOD for her, hyperventilation might have set in REALLY quick.
They have a few more things they are monitoring...kidney functions, how his diaphragm is working, and getting all his meds on a good schedule. But hopefully he will be moved out of ICU today or tomorrow. I am so proud of my husband, he has really fought a battle this week and worked a miracle!
Thursday, August 26, 2010
The Vent is Gone!!!
What an AMAZING morning. Just when you think things can't get better, they do! I get down to his room at the 6:15 visit wearing my PJs thinking I'll see him and then go get clothes on. Noooooo. He had just started his breathing tests to see if he would be able to breathe on his own. He rocked it! And by 7:30 am the orders were in to take out his Ventilator. Well of course we are on "Hospital Time" and we had several hours before all that actually happened. During these last few quiet hours, Graham was very agitated and anxious. He kept wanting things, we couldn't understand him, and he was getting so frustrated and angry. It was so hard and frustrating to not be able to help him. His writing got larger, his brow furrowed tighter, and at times his head was so purple I thought it was going to pop.
Then finally Dr. Rosenblatt, his doctor, came back and EVERYTHING changed. He and Graham have the best relationship. Graham trusts him 100% and you could see the relief in his eyes when he saw his Dr. show up. He even got impatient while Rosenblatt was reading up on him. But whatever Rosenblatt said, Graham did. Graham became calmer and took everything in stride. He was scoped, without any pain meds, and didn't wince once - he's such a trooper! The average person is put under he sedation. The scope was really cool to watch. And if you know me, you'd be really proud, I didn't get weak or faint once! We go to see both lungs on the inside and where the sutchers were connecting his body to the new lungs. Everything looked great and the Dr was very pleased. He took a few pictures and not 10 minutes later told Graham to cough and the Vent was out. Then 2 more minutes went by and his feeding tube was pulled. One by one we got to see all the big machines leave the room. What a relief. All that practicing breathing yesterday paid off. He started off slow at first, but after 15 minutes he was a pro. When I asked him how it felt all he could say was "Weird!" The poor guy hasn't breathed like that EVER!
And now that there is no tape or tubes preventing him to talk, he has NOT SHUT UP! And it is awesome, he is already making us laugh again. First off, what was making him so angry all this week was all of his hallucinations from the morphine. He swore his bed could slide up and down and that there was a couch with all his friends on it. He was a little irritated at his friends for not talking to him. Then there were the random short people at the foot of his bed he could barely see. He kept asking to have his bed lowered and was frustrated these people couldn't see over it. Now he thinks it is all hilarious and I feel better that I was doing all I could do.
He has now walked a little and is sitting up in a chair. Anyone who walks in the room gets to hear about how he can't wait to play and run with his little girl. I'm still in shock at how flipping cool and amazing this is. Just this Sunday he couldn't make it from the bedroom to the kitchen and now he has a new set of lungs and talking about running. What a miracle, the worst is finally over!
Then finally Dr. Rosenblatt, his doctor, came back and EVERYTHING changed. He and Graham have the best relationship. Graham trusts him 100% and you could see the relief in his eyes when he saw his Dr. show up. He even got impatient while Rosenblatt was reading up on him. But whatever Rosenblatt said, Graham did. Graham became calmer and took everything in stride. He was scoped, without any pain meds, and didn't wince once - he's such a trooper! The average person is put under he sedation. The scope was really cool to watch. And if you know me, you'd be really proud, I didn't get weak or faint once! We go to see both lungs on the inside and where the sutchers were connecting his body to the new lungs. Everything looked great and the Dr was very pleased. He took a few pictures and not 10 minutes later told Graham to cough and the Vent was out. Then 2 more minutes went by and his feeding tube was pulled. One by one we got to see all the big machines leave the room. What a relief. All that practicing breathing yesterday paid off. He started off slow at first, but after 15 minutes he was a pro. When I asked him how it felt all he could say was "Weird!" The poor guy hasn't breathed like that EVER!
And now that there is no tape or tubes preventing him to talk, he has NOT SHUT UP! And it is awesome, he is already making us laugh again. First off, what was making him so angry all this week was all of his hallucinations from the morphine. He swore his bed could slide up and down and that there was a couch with all his friends on it. He was a little irritated at his friends for not talking to him. Then there were the random short people at the foot of his bed he could barely see. He kept asking to have his bed lowered and was frustrated these people couldn't see over it. Now he thinks it is all hilarious and I feel better that I was doing all I could do.
He has now walked a little and is sitting up in a chair. Anyone who walks in the room gets to hear about how he can't wait to play and run with his little girl. I'm still in shock at how flipping cool and amazing this is. Just this Sunday he couldn't make it from the bedroom to the kitchen and now he has a new set of lungs and talking about running. What a miracle, the worst is finally over!
Wednesday, August 25, 2010
Learning to Breathe Again
Graham is still continuing to amaze the Doctors and Nurses and is doing AWESOME! The poor guy doesn't feel like it though. He feels he is failing at it and not progressing. We keep telling him how well he is doing and how far ahead he is than what doctors predicted. Swelling in his face is WAAAAAAAY down. He is recognizable now and he is able to open his eyes. Everything is really blurry, he says worse than if he were to not be wearing his glasses (his eyes are still a little swollen). But he can recognize us and waves to us as we garb up looking like Sponge Bob.
He is finally off all of his blood pressure meds and maintaining normal BP (I'm starting to learn more medical lingo). Graham is also being weened off of his Ventilator...this is sooooo hard for him! He wanted me by his side when they did this and I was way too happy to oblige, I really needed him at that moment too. They moved his Vent Pressure down from 25 to 20 - what this means, at 25 the vent is doing all the work, when they start lowering the pressure, Graham is having to do more and more breathing by himself. So many emotions were going through Graham; he was nervous, anxious, and scared. He had to really concentrate on learning to breathe all over again. It has been decades since he has been able to fill his lungs with oxygen or take a deep breath and not cough afterwards. With a lot of encouragement, silence, and concentration he began to figure it out. I know I will never understand what he was going through, but I felt so bad for him. But he did it! After 6 minutes he was able to find a good pattern. Inhaling was very difficult for him and he would get a little frustrated and I would need to remind him to breathe or that he was doing great. After about 45 minutes, he could go longer without a slip up. He still had to concentrate on inhale...exhale...inhale...exhale, but he was doing it. I felt comfortable enough to leave for 30 minutes and when I came back Kristen told me that he even fell asleep and was breathing great!!!!
They continued to ween him throughout the day and every time they went down, he struggled. The tubes are very irritating to him, he feels like there is mucus in his lungs and it's as if (well, he is) breathing through a straw. Even though nothing is wrong, his numbers on the vent looked great - better than average, he felt like he should be breathing perfectly. His Respiratory Therapist didn't help either, he showed her his number 1 finger...some people just don't have bedside manner. Don't be gruff with a patient, I almost jumped down her throat. If she's back tomorrow, I'm asking for another! But he did it! By the end of the day, he had gone from 25 to 10 and was even aloud to rest. I haven't seen him since 4:30, but can't really complain, I got to spend all day with him (that's a little against the rules, but to peas the patient!!!). His anxiety is supposedly better (it was so bad they had to slow down the weening and it's also the reason they let me stay) and the plan is to move him to 5 really early tomorrow morning and then down to 0 mid morning so they can remove the vent early and he can have a good day!!!
I'm so excited for him, he is continuing to be a rock star with VERY LITTLE complaining. He had his first Physical Therapy today and he did well with it. It was simple leg lifts and arm lifts, but he fought through them well. Hopefully tomorrow they'll put him in a chair to sit!
Thank you all for your sweet messages, they really make me feel better. Y'all are too sweet! More later :) -Erin
He is finally off all of his blood pressure meds and maintaining normal BP (I'm starting to learn more medical lingo). Graham is also being weened off of his Ventilator...this is sooooo hard for him! He wanted me by his side when they did this and I was way too happy to oblige, I really needed him at that moment too. They moved his Vent Pressure down from 25 to 20 - what this means, at 25 the vent is doing all the work, when they start lowering the pressure, Graham is having to do more and more breathing by himself. So many emotions were going through Graham; he was nervous, anxious, and scared. He had to really concentrate on learning to breathe all over again. It has been decades since he has been able to fill his lungs with oxygen or take a deep breath and not cough afterwards. With a lot of encouragement, silence, and concentration he began to figure it out. I know I will never understand what he was going through, but I felt so bad for him. But he did it! After 6 minutes he was able to find a good pattern. Inhaling was very difficult for him and he would get a little frustrated and I would need to remind him to breathe or that he was doing great. After about 45 minutes, he could go longer without a slip up. He still had to concentrate on inhale...exhale...inhale...exhale, but he was doing it. I felt comfortable enough to leave for 30 minutes and when I came back Kristen told me that he even fell asleep and was breathing great!!!!
They continued to ween him throughout the day and every time they went down, he struggled. The tubes are very irritating to him, he feels like there is mucus in his lungs and it's as if (well, he is) breathing through a straw. Even though nothing is wrong, his numbers on the vent looked great - better than average, he felt like he should be breathing perfectly. His Respiratory Therapist didn't help either, he showed her his number 1 finger...some people just don't have bedside manner. Don't be gruff with a patient, I almost jumped down her throat. If she's back tomorrow, I'm asking for another! But he did it! By the end of the day, he had gone from 25 to 10 and was even aloud to rest. I haven't seen him since 4:30, but can't really complain, I got to spend all day with him (that's a little against the rules, but to peas the patient!!!). His anxiety is supposedly better (it was so bad they had to slow down the weening and it's also the reason they let me stay) and the plan is to move him to 5 really early tomorrow morning and then down to 0 mid morning so they can remove the vent early and he can have a good day!!!
I'm so excited for him, he is continuing to be a rock star with VERY LITTLE complaining. He had his first Physical Therapy today and he did well with it. It was simple leg lifts and arm lifts, but he fought through them well. Hopefully tomorrow they'll put him in a chair to sit!
Thank you all for your sweet messages, they really make me feel better. Y'all are too sweet! More later :) -Erin
He's Not Normal
Well, day 1 is over and everything is looking up. The doctors struggled with Graham's blood pressure throughout the entire surgery and was a big concern once it ended. He is slowly being weened off all of his blood pressure meds and as of now (8/25/10) he is only on 1 of the 3 and a really low dose of it. AND his blood pressure is staying normal!!!
If you don't know Graham, the child ain't normal. And I love him that way. On our first visit in the ICU his precious, precious nurse Kristen's first words to me were "He's not Normal. Most transplant patients sleep, he's awake and alert." Now, with all the stress and anxiousness of the morning all I could do was start laughing and crying. Because, he isn't normal!
He is such a fighter. He is having to do all this with low doses of sedatives - which means he's awake and feeling most of the pain. He does get some Morphine, but not enough. I feel so bad for him. But luckily he won't remember most of it. He communicates well, and getting frustrated that he can't talk. He can nod, point and spell with his fingers. He squeezes my hand and my heart flutters. By the end of the day we had perfected communication. It is a combination of spelling and yes/no questions.
The amazing Husband/Head of House that he is...one of the first questions he had: Did I call his Insurance/Disability lady and have I handled my FMLA paperwork. He then began to ask about all his friends and family. Have I kept them up to date, do they know what's going on, how is his Miss Jordan. It was so awesome to know that he was still Graham and with it. He even started joking around with us (yes, he still knows one form of sign language!!!).
He is moving forward, that is so great! He is really doing his part and fighting hard. He may be moving in baby steps, but at least they are in the right direction.
Thanks again for all your kind thoughts and prayers. They are being answered and everything is working out! Hope to post again at the end of the day. -Erin
If you don't know Graham, the child ain't normal. And I love him that way. On our first visit in the ICU his precious, precious nurse Kristen's first words to me were "He's not Normal. Most transplant patients sleep, he's awake and alert." Now, with all the stress and anxiousness of the morning all I could do was start laughing and crying. Because, he isn't normal!
He is such a fighter. He is having to do all this with low doses of sedatives - which means he's awake and feeling most of the pain. He does get some Morphine, but not enough. I feel so bad for him. But luckily he won't remember most of it. He communicates well, and getting frustrated that he can't talk. He can nod, point and spell with his fingers. He squeezes my hand and my heart flutters. By the end of the day we had perfected communication. It is a combination of spelling and yes/no questions.
The amazing Husband/Head of House that he is...one of the first questions he had: Did I call his Insurance/Disability lady and have I handled my FMLA paperwork. He then began to ask about all his friends and family. Have I kept them up to date, do they know what's going on, how is his Miss Jordan. It was so awesome to know that he was still Graham and with it. He even started joking around with us (yes, he still knows one form of sign language!!!).
He is moving forward, that is so great! He is really doing his part and fighting hard. He may be moving in baby steps, but at least they are in the right direction.
Thanks again for all your kind thoughts and prayers. They are being answered and everything is working out! Hope to post again at the end of the day. -Erin
Tuesday, August 24, 2010
Third Times a Charm
Inconvenience...that's what we've been waiting on. Each time we have been called this past summer it has been "perfect timing." I was home for the summer, Jordan's babysitter has been available, it was during the day (no rush hour traffic) and all our parents were readily available. We had time to call all our family and some friends, had time to sit and chat, and had time to hug on our little princess. NOT THIS TIME!
8-23-2010
A very busy day. Jordan, Erin, and Suzi (Erin's mom) were in their first day of school and Barbara (Graham's mom) was in the dental chair with a mouth full of Novacaine being worked on by Bob (Erin's Dad). Graham had just spoken with the Ford dealership (big mess up on trade in of lease) and ordered a very expensive new drug that was going to revolutionize his breathing. Oh, and his Doctor is out of town until Wednesday!
3:45
Graham gets called - OMG. We all start running around like a chicken with our heads cut off. Graham was able to cancel the new drug. Bob was able to finish up on Barbara so she could pick up Graham and Bob could go get packed with Suzi. And Erin rushed to get Jordan from School, play with Graham then rush off to sign paper work in Fort Worth at the dealership (not a fan of Ford Lease at the moment).
All and all, we all got where we were supposed to go. 8:30pm we find out that it was all a go and 2:30 am would be the start time. What a whirl wind.
Go Time
If you know Graham, he is an amazingly funny man who is all about the jokes. Someone from the OR comes up to bathe him...a man. Poor Man. Graham starts in on him immediately. He strikes a pose. The OR guy begins to bathe him and Graham immediately "Don't touch me there you're not my Daddy." Without skipping a beat OR man replies, "How do you know?" Let the games begin, he found his match. They came and got him about 1:15 am and everything started to sink in. It's going to happen. We sat down in the OR for about 15 minutes. His close friend Jacob made it in the knick of time (made Graham's night!) to say Good Luck. He did really know what to feel. He was scared, excited, nervous, scared, scared, scared! But this is what we've been waiting for. Surgery started at 3:29 am. Everything went smoothly. He was so strong! They took his right lung out and his left lung was able to sustain his breathing while they implanted the right. They DID NOT expect that! Once the right was done, they started on the left. They struggled with his blood pressure the entire time; his upper, systolic number was 60 (regularly 120). This slowed him down a little towards the end of the surgery, but he was in the 80s by the time he went into ICU at 11:20. HE IS SUCH A FIGHTER! He kept amazing his surgeon and doctor. More to come on his progress soon.
8-23-2010
A very busy day. Jordan, Erin, and Suzi (Erin's mom) were in their first day of school and Barbara (Graham's mom) was in the dental chair with a mouth full of Novacaine being worked on by Bob (Erin's Dad). Graham had just spoken with the Ford dealership (big mess up on trade in of lease) and ordered a very expensive new drug that was going to revolutionize his breathing. Oh, and his Doctor is out of town until Wednesday!
3:45
Graham gets called - OMG. We all start running around like a chicken with our heads cut off. Graham was able to cancel the new drug. Bob was able to finish up on Barbara so she could pick up Graham and Bob could go get packed with Suzi. And Erin rushed to get Jordan from School, play with Graham then rush off to sign paper work in Fort Worth at the dealership (not a fan of Ford Lease at the moment).
All and all, we all got where we were supposed to go. 8:30pm we find out that it was all a go and 2:30 am would be the start time. What a whirl wind.
Go Time
If you know Graham, he is an amazingly funny man who is all about the jokes. Someone from the OR comes up to bathe him...a man. Poor Man. Graham starts in on him immediately. He strikes a pose. The OR guy begins to bathe him and Graham immediately "Don't touch me there you're not my Daddy." Without skipping a beat OR man replies, "How do you know?" Let the games begin, he found his match. They came and got him about 1:15 am and everything started to sink in. It's going to happen. We sat down in the OR for about 15 minutes. His close friend Jacob made it in the knick of time (made Graham's night!) to say Good Luck. He did really know what to feel. He was scared, excited, nervous, scared, scared, scared! But this is what we've been waiting for. Surgery started at 3:29 am. Everything went smoothly. He was so strong! They took his right lung out and his left lung was able to sustain his breathing while they implanted the right. They DID NOT expect that! Once the right was done, they started on the left. They struggled with his blood pressure the entire time; his upper, systolic number was 60 (regularly 120). This slowed him down a little towards the end of the surgery, but he was in the 80s by the time he went into ICU at 11:20. HE IS SUCH A FIGHTER! He kept amazing his surgeon and doctor. More to come on his progress soon.
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