Here is the update from today! Sorry for typos and whatnot, but we are working from an iPhone:
Hi! So yesterday after the transplant, I didn't update bc it was just kind of shocking.
He had a central line in his neck with 4 ports going in and one in his groin. He has 2 drainage tubes for blood out of his stomach. A ventilator. His arms were restrained down to the bed so he wouldn't move and try to pull out the ventilator. A tube from his stomach to drain blood and stomach secretions. And multiple IVs in his arms. He was extremely swollen, and the meds that they have to "sedate" him, actually put him in a medically induced coma. He wasn't responsive at all. Pale grayish in color. He had blood around his nostrils, which indicated that he had a nose bleed on the table.
They did an ultrasound to take a look at the new gear (liver)... And in his unresponsive state, his entire face crumpled up and he started moving his legs, indicating a ton of pain. It was pretty disturbing to see. And I made him stop and give him more pain meds.
I honestly didn't know how to feel because it was so shocking.
Anyway, today is a new day. This morning, he passed his spontaneous breathing test (amazing!). So they were able to take him off the ventilator, and he was responsive! His first notes he wrote were saying that the ventilator was annoying. :). He has been in and out, but his color is getting better. He feels super heavy, and swollen, and his arms are heavy and he isn't in control which frustrates him. They also gave him a morphine button.... Which we keep have to remind him to push, bc he is so stubborn ;)
He also told me that he needs to pee... And I smiled and told him he has a catheter and a bag so he was covered.
He told me that mentally he was all there (uhhh... I say somewhat only!) but his body isn't catching up.
Now they are about to take the central lines out of his neck and groin. And when they do, he will start to breathe into this spirometer, so that he won't get pneumonia. And the arm restraints are gone.
His new liver is responding well! His function numbers are good and going down (a great sign that it is working!).
We also got the end of the bed taken off, bc he is so tall. Hahah.
It has been a crazy crazy ride. And fortunately, I was able to get home last night to help
Put the twins to bed. I'm exhausted, but it is worth it. But, we are getting through it. It is amazing to see him responding and talking to us. It is getting Better every hour.
I was finally able to breathe this morning when I saw him, because he gave me a sign. When we first started dating, before we told each other that we loved each other, I used to squeeze his hand 3 times... It was my way of telling him "I love you" and he would squeeze back.
I told him later what the 3 squeezes meant. And ever since then, he would always respond with 4 squeezes for "I love you too."
This morning, when i thought he was asleep, I gave his hand 3 squeezes... And he squeezed back 4 times. And it was then that I realized that i finally exhaled... And that it will be okay. And we will be fine
Monday, May 30, 2016
Sunday, May 29, 2016
5/29/2016 - A Post to all while I'm under the knife
The beauty of technology is helping to make us feel more connected and more supported. Many of you have reached out to add your support to our on-line coordinated support site, Lots-a-helping-hands. If you have not and you want to, please navigate to the link: https://www.lotsahelpinghands.
I'm able to write this post now hours ahead of the surgery, and schedule it for when I go under. Like a new age message in a bottle.
I can tell you already that my family and friends, that closely surround me, will be exhausted. I can tell you that I will be in pain (after having an organ taken out when I was 7). I'll can tell you that I'll be grumpy, groggy, and I likely won't feel like doing much.
I hope my kids understand and do not get upset with me, I know they need their daddy, and I know my wife needs her husband. That's why I need each of you to step up as best you can while I can't.
The out-pour of help is great, the texts, the e-mails, and the meals.....just keep in mind, this is a marathon. When summer picks up and you all are enjoying it ... we would love to be carefree and healthy to enjoy it with you. If we can't this year, we at least want to be smiling with you all. Just check in with us, share photos of your kids smiling, eating ice cream, call Tessa to check to see if she's doing ok. I mean that. Go ahead, use your google calendar to setup a random reminder or two over the next 3 months to ping her and talk. I'm challenging you to that.
As for me, Tessa can attest that I've got a pile of 10 books or so that I need to get through, several shows I can binge watch, and need to keep as strong and healthy as I can. I will likely try to isolate myself until my immuno-suppressant meds and I meet at an agreeable place and stabilize over the coming months. I will be very cautious of visitors and seeing if I can keep my kids as healthy as possible. If our kids get sick then I will need to be isolated from them too. I anticipate this to be the most crushing when I recover. Don't take it personally, it's all business.
To my mother, father, and sister:
I love you all more than you know and appreciate everything you have offered to me over time. How caring and understanding you all have been for all the medical crap I've had to deal with. I know it's upsetting to you all but you've been good sports and life has actually played out swimmingly well minus this setback.....such a far cry from what I thought might happen when I was 7. I'm going to fight this as battle as best I can. Keep Tessa Surrounded with your love, I'm so happy you're in our neighborhood now.
To Tessa, Leila, Eli:
You all mean the world to me. God willing, we'll all get through this together. They say the odds are way in my favor and so we have to believe in that and trust the skilled hands of the surgeons and hospital workers. I know it's hard when we want to control things, but we can't. So, we focus on things we can. Tessa, reminder to setup kids doctors so other care takers can take them to appointments if needed. Lean on my family and yours, lean on Lara, lean on Tita Shelly and GG, lean on all of those folks who are strong while it's hard for you. They will keep us all afloat.
To change your organ donation status (Thanks Morgan!):
http://www.dmv.state.va.us/drivers/#organs.asp
I'm able to write this post now hours ahead of the surgery, and schedule it for when I go under. Like a new age message in a bottle.
I can tell you already that my family and friends, that closely surround me, will be exhausted. I can tell you that I will be in pain (after having an organ taken out when I was 7). I'll can tell you that I'll be grumpy, groggy, and I likely won't feel like doing much.
I hope my kids understand and do not get upset with me, I know they need their daddy, and I know my wife needs her husband. That's why I need each of you to step up as best you can while I can't.
The out-pour of help is great, the texts, the e-mails, and the meals.....just keep in mind, this is a marathon. When summer picks up and you all are enjoying it ... we would love to be carefree and healthy to enjoy it with you. If we can't this year, we at least want to be smiling with you all. Just check in with us, share photos of your kids smiling, eating ice cream, call Tessa to check to see if she's doing ok. I mean that. Go ahead, use your google calendar to setup a random reminder or two over the next 3 months to ping her and talk. I'm challenging you to that.
As for me, Tessa can attest that I've got a pile of 10 books or so that I need to get through, several shows I can binge watch, and need to keep as strong and healthy as I can. I will likely try to isolate myself until my immuno-suppressant meds and I meet at an agreeable place and stabilize over the coming months. I will be very cautious of visitors and seeing if I can keep my kids as healthy as possible. If our kids get sick then I will need to be isolated from them too. I anticipate this to be the most crushing when I recover. Don't take it personally, it's all business.
To my mother, father, and sister:
I love you all more than you know and appreciate everything you have offered to me over time. How caring and understanding you all have been for all the medical crap I've had to deal with. I know it's upsetting to you all but you've been good sports and life has actually played out swimmingly well minus this setback.....such a far cry from what I thought might happen when I was 7. I'm going to fight this as battle as best I can. Keep Tessa Surrounded with your love, I'm so happy you're in our neighborhood now.
To Tessa, Leila, Eli:
You all mean the world to me. God willing, we'll all get through this together. They say the odds are way in my favor and so we have to believe in that and trust the skilled hands of the surgeons and hospital workers. I know it's hard when we want to control things, but we can't. So, we focus on things we can. Tessa, reminder to setup kids doctors so other care takers can take them to appointments if needed. Lean on my family and yours, lean on Lara, lean on Tita Shelly and GG, lean on all of those folks who are strong while it's hard for you. They will keep us all afloat.
To change your organ donation status (Thanks Morgan!):
http://www.dmv.state.va.us/drivers/#organs.asp
Saturday, May 28, 2016
5/28/2016 - The Latest...like an plane in O'Hare....delayed
Around lunch, the surgeon came in to tell me that the organ donor harvesting team had not yet assembled to remove the organs (they harvest many organs from the donor to save as many people as possible). They anticipate that to start at 11pm EST on 5/28. With the removal taking some hours, and then the liver needing a biopsy, I'm scheduled to be on the OR table at 5AM 5/29. Of course, any or all of this is still subject to change.
The best news is that I was able to eat lunch (up to this point I was Starvin' Marvin). My metabolism has been geared up because I played soccer night before last (crazy to think that), and I didn't eat for 14 hours. Lunch is in my belly now and I've been told I can have a light dinner which I'm excited about too. Tessa got me some dark chocolate so I'm all set to watch the Champions League final from my bed at the hospital.
The kids are able to come and visit so I can see them before I get too beat up and so I can try again to explain what's going on to them.
Thanks for your continued notes, thoughts, and prayers as we wait. (Also, thank you all for signing up on the site listed in the previous blog post).
Best,
Matt
PS - Funny or Not Funny? When the nurse was checking me in last night asking what valuables I had, the mood was pretty dark. I said calmly, Laptop, Cell Phone, Charging cords, and $25,000 in cash. She shot a look over at me and I was smiling....my wife was not amused but I was laughing at it.
5/28/2016 - Turn Shit into Sugar: Opportunism
Have you ever seen the Geico commercial, where the former NFL player, Ickey Woods is at the grocery deli? And when his ticket number is called, he starts doing this touch down dance yelling "wool! 44 that's me!! Get some cold cuts! Get some cold cuts!! Wooo!"?
We love that commercial. If you see Leila, she will actually say it for you. Makes us laugh all the time. But I digress.
Well. Last night after we put the kids to bed, that was us. Our number finally got called. We got our second call from The Georgetown Liver Transplant Coordinator at 10:32pm. A 33 year old woman, local, around the same size as Matt, healthy, low risk... Unfortunately had a stroke while having a c-section, and passed away. She was listed as an organ donor. She qualified as a perfect match for Whitey.
(I know. It is hard to even write that down as parents... Much less to be joyful that that is our option. But, that is our reality.)
Anyway, Matt is the primary recipient of her liver, and there is a secondary recipient and possible tertiary recipient waiting for it here at Georgetown, in case last minute Matt does not qualify. We immediately called Matt's parents and Bill (my father in law) came over immediately to watch the kids overnight.
We woke the kids up, and did a White family hug. Told them that we loved them, and that daddy is going to the hospital. Eli didn't seem to understand, but Leila looked pretty concerned.
We got into the cancer car, and got over to the Georgetown ER. Matt only went through one semi red light. (I'd call that a win!!). We stepped into the ER, and I swear, I have never seen such service at a hospital. They were waiting for him, and we walked right up to the transplant floor. We did the paperwork from bed.
They did another chest X-ray, EKG, and then blood work to make sure again that Matt's antibodies matched the donor. (My Lord. All the tubes. Insanity...) Then they did the IV. For some reason, they had to get Matt 5 times before they got a good IV started. His kept "blowing out" and his vein would disappear. I felt awful for him.
By the time that was all done, we were sitting in the bed at 3am... Laying in the bed together, trying to get some rest.
I'd doze off, and look over at Matt. Usually his eyes were open and he would smile at me. Or tell me he loved me, and we would try and go back to sleep. We finally got a few hours in here and there. We actually were pretty comfy all snuggled up on the hospital bed.... Which is nice considering that this will probably be the last night we can sleep like that.
Anyway, I'm babbling. The surgeon, Dr. Alexander Helmut Kurt Kroemer MD (very direct. German
) told us that the organ was still in the donor, and they would be testing and evaluating today. He examined Matt, and said that the procedure would be more complicated due to his existing scars... So it would likely be an 8hour+ transplant. He wouldn't give us more information, but said it would likely be around 10pm tonight.
Fingers crossed that this works. It is a lot of hurry up and wait.
For now, we are both a little on edge, but have received all of your calls, texts, Facebook messages, emails, etc. cheering Matt on. You have no clue how much it means to us. It makes us smile... Especially now in the waiting stage.
12 hours in from the initial call... And it seems like an eternity, but oddly enough time is standing still. Does that make sense?
Go to our Community web address:
We love that commercial. If you see Leila, she will actually say it for you. Makes us laugh all the time. But I digress.
Well. Last night after we put the kids to bed, that was us. Our number finally got called. We got our second call from The Georgetown Liver Transplant Coordinator at 10:32pm. A 33 year old woman, local, around the same size as Matt, healthy, low risk... Unfortunately had a stroke while having a c-section, and passed away. She was listed as an organ donor. She qualified as a perfect match for Whitey.
(I know. It is hard to even write that down as parents... Much less to be joyful that that is our option. But, that is our reality.)
Anyway, Matt is the primary recipient of her liver, and there is a secondary recipient and possible tertiary recipient waiting for it here at Georgetown, in case last minute Matt does not qualify. We immediately called Matt's parents and Bill (my father in law) came over immediately to watch the kids overnight.
We woke the kids up, and did a White family hug. Told them that we loved them, and that daddy is going to the hospital. Eli didn't seem to understand, but Leila looked pretty concerned.
We got into the cancer car, and got over to the Georgetown ER. Matt only went through one semi red light. (I'd call that a win!!). We stepped into the ER, and I swear, I have never seen such service at a hospital. They were waiting for him, and we walked right up to the transplant floor. We did the paperwork from bed.
They did another chest X-ray, EKG, and then blood work to make sure again that Matt's antibodies matched the donor. (My Lord. All the tubes. Insanity...) Then they did the IV. For some reason, they had to get Matt 5 times before they got a good IV started. His kept "blowing out" and his vein would disappear. I felt awful for him.
By the time that was all done, we were sitting in the bed at 3am... Laying in the bed together, trying to get some rest.
I'd doze off, and look over at Matt. Usually his eyes were open and he would smile at me. Or tell me he loved me, and we would try and go back to sleep. We finally got a few hours in here and there. We actually were pretty comfy all snuggled up on the hospital bed.... Which is nice considering that this will probably be the last night we can sleep like that.
Anyway, I'm babbling. The surgeon, Dr. Alexander Helmut Kurt Kroemer MD (very direct. German
Fingers crossed that this works. It is a lot of hurry up and wait.
For now, we are both a little on edge, but have received all of your calls, texts, Facebook messages, emails, etc. cheering Matt on. You have no clue how much it means to us. It makes us smile... Especially now in the waiting stage.
12 hours in from the initial call... And it seems like an eternity, but oddly enough time is standing still. Does that make sense?
Many of you have asked how you can help. Our dear friend Lara McCauley has set up a website to help us out. If you are interested in helping in some way (having a meal delivered, driving, helping with the kids, mowing the grass while I'm not able to, helping take out the trash, providing money for parking (it's pay parking only which drives me nuts)
Go to our Community web address:
- https://www.lotsahelpinghands.
com/c/729068/
Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.
That's it for now. They have given Matt the okay to eat until lunch. So I am on the way to get him something delicious.
Lots of love,
Tessa
Tuesday, May 24, 2016
5/24/2016 - Upgraded MELD... and no news.
I realize it's been a while. One of my best friends and I caught up with an old high school buddy of mine who is moving out of the area with his family. This was maybe two weeks back. he is a pretty quiet guy and we were in the car driving headed to a DC United game. I still distinctly remember him squeezing my shoulder and saying "Hey man, I read the blog, and appreciate the updates. It doesn't even have to be long winded. Just a short note to let us all know you're ok and what's up".
I'll do my best to hold myself to that, because there is always stuff going on and I would like to keep people better informed.
My MELD was increased from a 29 to a 31 effective on May 18th. It's good that my MELD is higher because it cuts the chances that someone can leapfrog me in my wait-list status. Having said that, I'm still waiting with no new calls or offers. There was no "A" blood type transplants done in the last week. My first transplant coordinator who was out on maternity leave may or may not be back, I'll know more in Mid-July. She's really cool though and it would be nice if she did return. The person who has covered me while my primary coordinator is out, is good too but it would be good to keep all the history.
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
- https://www.lotsahelpinghands.
com/c/729068/
Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.
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