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| Max and his nurse, Miss Amanda giving thumbs up! He is ready to get his new liver! |
Wednesday, September 12, 2012
Sept. 12, Max's new Liver
Sept. 12
We got "The" call last night that we had a new liver. We got to Ann Arbor around midnight. He went back in to surgery around 5. And now we wait.....at least 8hours. Trying to rest and stay calm.
Wednesday, August 15, 2012
August 15
Short but important post!
As of yesterday afternoon Max is on the liver transplant list!!!! He is ranked middle to high on the list. We hope to wait 30ish days or less for a new liver.
Hurry up and waiting....
As of yesterday afternoon Max is on the liver transplant list!!!! He is ranked middle to high on the list. We hope to wait 30ish days or less for a new liver.
Hurry up and waiting....
Wednesday, August 8, 2012
August 8
Today Max and I came home from round 6 of chemo . He walked out of the hospital with his little hat on and sunglasses. What a rock star!
We met with Dr. Lopez last week. Sadly he gave us no new information, nor did he answer any of our questions. The only new development that came from that visit was Max upsizing his trach. A big time blow to us. We were thinking that it was going to come out. It knocked the wind out of me a little. The trach coming out has been dangled in front of us numerous times, we really thought it was going to happen. Now, not only is it NOT coming out, we have to go through the down sizing process all over again.
We are anxiously waiting for the call that Max is officially on the the transplant list. They tell us it will be any day, but that day hasn't come yet. The sooner the better. 6 rounds of chemo and no real end in sight is terrifying to think about.
As I have said before, I just want this thing out of my son. SOON.
We met with Dr. Lopez last week. Sadly he gave us no new information, nor did he answer any of our questions. The only new development that came from that visit was Max upsizing his trach. A big time blow to us. We were thinking that it was going to come out. It knocked the wind out of me a little. The trach coming out has been dangled in front of us numerous times, we really thought it was going to happen. Now, not only is it NOT coming out, we have to go through the down sizing process all over again.
We are anxiously waiting for the call that Max is officially on the the transplant list. They tell us it will be any day, but that day hasn't come yet. The sooner the better. 6 rounds of chemo and no real end in sight is terrifying to think about.
As I have said before, I just want this thing out of my son. SOON.
Sunday, July 29, 2012
July 29
Last week we took a trip to Ann Arbor with Max. He was sooooo great. He chit chatted with the docs, played with his toys, gave high fives and waves to everyone, and sat still and quiet when needed. Such a trooper.
The consensus is that Max needs a transplant. Not a partial either, a full liver. The way his tumor is in his body makes it impossible to do anything else but a transplant. Not what I was expecting.
We go back this week Wednesday to meet the rest of the transplant team and to hopefully be put on the list. We will also get more concrete information on what to expect through this process and life after.
Again we find ourselves in the process of hurry up and waiting.
The consensus is that Max needs a transplant. Not a partial either, a full liver. The way his tumor is in his body makes it impossible to do anything else but a transplant. Not what I was expecting.
We go back this week Wednesday to meet the rest of the transplant team and to hopefully be put on the list. We will also get more concrete information on what to expect through this process and life after.
Again we find ourselves in the process of hurry up and waiting.
Monday, July 23, 2012
July 23
Tomorrow is the big day in Ann Arbor. We won't get a lot of info on if he needs the transplant tomorrow. It is more of getting all the tests done to get on the transplant list, and see if he is healthy enough to even be considered.
I will update you on how the day goes and what the tentative plan is.
Please pray for safe travels and positive info on taking out the tumor.
I will update you on how the day goes and what the tentative plan is.
Please pray for safe travels and positive info on taking out the tumor.
Wednesday, July 18, 2012
July 18
Max has completed his 5th found of chemo. I can't even describe to you how amazing this kid is. I ask him if he is a Big Brave Boy and he just smiles and says "Yup"!
We have a marathon day set up in Ann Arbor Tuesday. Appointments from 8am until 4 or 5. He will get a liver ultrasound, heart echo, pulmonology appt, cardiology appt, and a couple meetings with the liver transplant surgeons. After all that they will determine what the next step is and we will most likely be on the transplant list. HOPEFULLY we won't have to go the transplant route but the docs want the option ready if he ends up needing it.
So many thoughts constantly running through my head...so hard to put into words. I am still attempting to be positive but it is hard to manage all the chaos at times.
"Max are you a BIG BRAVE BOY"?
"Yup Mama"
That will help me get through tonight. =)
We have a marathon day set up in Ann Arbor Tuesday. Appointments from 8am until 4 or 5. He will get a liver ultrasound, heart echo, pulmonology appt, cardiology appt, and a couple meetings with the liver transplant surgeons. After all that they will determine what the next step is and we will most likely be on the transplant list. HOPEFULLY we won't have to go the transplant route but the docs want the option ready if he ends up needing it.
So many thoughts constantly running through my head...so hard to put into words. I am still attempting to be positive but it is hard to manage all the chaos at times.
"Max are you a BIG BRAVE BOY"?
"Yup Mama"
That will help me get through tonight. =)
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